Rebecca's Transplant Journey

Bach, In Time!

2010-04-06T18:26:00.000-07:00

BACH, IN TIME!

Tomorrow will mark six weeks since I received my double lung transplant. My God: how life just marches on! For a seemingly endless time we have waited for these days. I was diagnosed with Interstitial lung disease in 1998 - twelve years ago! The disease progressed very slowly over the years; so much so, that I really couldn't tell from week to week how it was progressing, but when I would look back six months or so, I could see that I was indeed getting worse. For six years we wanted to move from Reno (we lived there for eight) but I was too unstable; we were too unsure about the future for me to quit my job - to risk losing medical insurance. It was clear that when we visited areas at lower altitude that I felt better and was able to do more (Reno is at 4500 ft altitude.) Finally, my Pulmonologist said that we could buy more "time" and more comfort for me, breathing-wise, if indeed we were to move to a lower altitude. We did some research and ended up choosing to live and work in Vancouver, Washington (altitude 150 ft.) I did get some relief, for a few years.

So, just six weeks ago I was leashed by a 50 ft nasal cannula to an oxygen concentrator, not getting out very much at all. It had gotten to the point that I would go grocery shopping every week, with a tank in a small backpack strapped onto my back, but I would be exhausted by the time I got home and put the groceries away. Sure, I would visit with girlfriends once a week or so; coffee or lunch or a glass (or three) of wine. But I was watching a LOT of television, movies, reading a lot and sitting on the couch, a LOT....when I wasn't napping. Sometimes I napped because I was tired: exhausted...Other times it was simply to help the day pass. I saw the same walkers, school kids and dog-owners pass by our house every morning. Matt, Meredith, Al and Anne were my morning companions. Ron works three twelve-hour shifts a week and I came to cherish the days that he was gone: not because I don't love being with him - I do! How I love my husband! But I just couldn't bear the thought of having a witness to how much I wasn't doing with my days! My energy levels had gotten so low - my ambition so defeated, that I treasured the luxury of doing nothing with no witness, until an hour or two before he was due home in the evenings. Then, before he arrived home I would scramble around the house, straightening, doing the dishes I had avoided all day, making the bed finally, etc., so that he didn't know (did you know, Ron?) that I had actually been on the couch much of the day. It was a very sad time. I tried to remain cheerful, patient, positive on the outside: it was a big stretch. The call would come....the call would come.

I was missing my dog Chiba terribly, who we had sent ahead to that better place in October. Chiba was quite the naggy little dog: she always demanded attention. I loved her so much; I loved grooming her, petting her, just being with her: she had been my constant companion. Toward her end I wasn't taking her out for walks much, but it had become apparent she was getting old (we thought it was arthritis; she was 11 years old....we were wrong) and she wasn't much interested in walks by then either. Around the New Year, I was going out of my mind waiting for that damned call that would change our lives - bring us to the next, exciting chapter! I needed a mission! A small mission, that was achievable! I decided I could be of use - find a purpose - by volunteering at the Humane Society. It became my New Year's Resolution! Soon after the New Year I completed orientation at the HS in Vancouver. I would be a "Dog Socializer!" My job was to spend two hours, one day a week working on socializing the adoptable dogs. So many have no manners, no training. A Socializer's job is to walk the dogs, socialize and spend a little time training them some better manners in order to help them find forever homes. Ron's friends joked with him that we would have a new dog very soon. WE agreed it would be best to wait until after the transplant. It was settled. We would wait. It wouldn't be fair to us, or to a new dog, should we bring it into our home, only to get The Call the next month, possibly even the next DAY, and then be gone for who knows how long! Our lives were just completely on hold waiting for this transplant: no travel, no dog, no using Ron's vacation time.

My days at the Humane Society were great! I was on my own by early January and started by walking the dogs. I wasn't going for walks on my own any more, so I initially decided we needed each other: everyone would get out for a walk. I quickly realized that, on seven liters of oxygen, I was no longer any match for even a 35 pound, badly-mannered pit bull pup or a poorly trained Labrador. The Chihuahuas and Min-Pins were more my speed. No...I was no dog walker after all. On my second volunteer week, I decided to groom the dogs. They needed to be brushed and look their best for the visitors looking to adopt! THAT's when I met Bach. Bach was eight years old and 94 pounds of LOVE, in the form of a St Bernard/Rhodesian Ridgeback mix. When I took mellow Bach to the Socialization room for grooming the first time, he just drank it up. He lay down, rolled over and loved every bit of the attention. If I stopped, he would paw me for more, with crazy-long nails. My heart melted. I couldn't stop thinking about him, and went home and told Ron we had to go look at him. Ron resisted: I insisted. The next day I called and found out that Bach had a 24-hour "hold" on him - meaning another family wanted to consider him for adoption. I had an urgent need to introduce these two boys to each other! I dragged Ron down to the Humane Society and we visited with Bach; Ron was smitten! We put a second hold on Bach and were told that if the other family hadn't picked him up by noon the next day, he was ours! I couldn't sleep that night: I was in love! I so wanted a new companion! Ron and I struggled with the fact that I could get The Call at any moment, and yet we also were really feeling the void left in our hearts and home by the loss of Chiba...it was time for a new furry friend, and we hoped to have found him in Bach. Regardless, I told myself, he would have a new home very soon: that was the most important thing. I left it up to God; if it was meant to be, Bach would come home with us tomorrow. It was Sunday, January 31st and Ron and I went to Sunday Brunch with my very good friend MaryPat and her friend to Salty's Restaurant: all you can eat oysters on the half shell, Dungeness Crab and many many more yummies! (As it happened, they would be the last raw oysters I may ever eat in my life! Waaa!) After our brunch, I called the Humane Society to see if indeed Bach had been picked up. He had NOT! I told them we weould be there in twenty minutes to pick him up! Ron and I drove directly to the the HS nd took one more visit with him: we were convinced...it was decided! We took him home and our house was whole again.

We had adopted Chiba when she was four months old; I knew that dog's every mood, sound and habit. Quite to the contrary, Bach came to us with an entire previous life; a Senior Dog. The family that relinquished him had filled out paperwork as to his history and habits, and on paper he was a great dog. My instincts told me he is a great dog. But he is a completely different dog than Chiba, and he is BIG and he has BIG teeth!! He is a little intimidating. I had to admit, as much as we seemed to like each other, we would need to get to know each other and to trust. I tried to clip his nails and he balked. I tried to clean his ears and he would jump back and look at me like "What you talkin' 'bout Willis!?" We found common ground in the brushing, and he relaxed. I bought toys from the Good Will store and he didn't really know what to do with them. I gave him Milk Bones and carrots (Chiba loved her daily carrots) and he brought them into the living room and dropped them, where they would stay for days if I didn't pick them up. But this dog follows me everywhere, and puts his big huge head into my lap and hands and just breaks my heart! He lays down beside me on the floor and begs to be touched. I took him for the walks I had not been going on, and he would take his leash into his mouth, as if HE were walking ME. He shakes and sits and speaks and comes. He does not stay very well. I immediately felt safer in my home during the day and night with a dog in it once again. I was feeling very vulnerable without a dog as a first warning system and companion. It makes me feel good to know that people see a dog in the window as they walk by my house; especially as they would also see oxygen tanks waiting in the drive to be picked up. I felt like target to some degree, knowing that I couldn't run or fight for my life if I needed to. And, as Murphy's Law always dictates, three and 1/2 weeks after we adopted a new dog...we got The Call. Our new dog would now be passed around to several Step-Moms and babysitters over the next few weeks.

I haven't been with my dog in six weeks. I hardly know him! By all reports from Ron and Mom, he is not the same dog today as I left six weeks ago...He OWNS that house and it is his! He is Home! He barks at the door and stands guard in our living room window; a warning and a sentinel to all who might dare to trespass. He also is a big softy, who just wants to be pet! He loves chicken strips and Pupperoni. He takes a pill for his bad knees and he thinks being put outside without you is punishment. He sheds everywhere and he needs me back home with him to groom him and walk him on the pavement to file down his long nails. When I get home he is going to be the walking-est, hiking-est, luckiest dog! We will play and wrestle and walk and go swimming in the rivers. I will chase him around our big yard, and he will never know what it's like to have an owner that can't take him for long walks...and he will help me to forget that I ever couldn't.

2010-04-01T20:47:00.000-07:00

The Cute and the Fugly

(or)

Twelve Hours to Fugly

My stay in the hospital lasted only nine days. We were all very surprised at how quickly I was released, as we were told time and again to expect to spend 2-3 weeks in the hospital. I received my transplant late evening on Wednesday the 24th of Feb and was released on Friday, March 5th. Let me tell you; being in the hospital suuuuucks! I have learned many MANY things that will be useful to me in my rold as a nurse, from being a patient:

Just because a patient falls asleep after receiving IV pain medicine does NOT mean their pain was relieved. If they say the medicine didn't work; please eventually try another medication. And oral meds really do sometimes work better than IV! When they switched me from IV Dilaudid (which made me super sleepy but did nothing for my pain) to Oral Dilaudid, I got much better pain relief, in just one dose. That is so amazing to me, as a Recovery Room nurse!

Hospital Macaroni and Cheese is awful.

Low Sodium diets should be used only as part of the punishment for Death Row inmates.

Choices are good. Patients want choices. Just give us one iota of control, and we will think you're the greatest nurse. Or doc.

Sometimes a patient just wants to talk. Or listen to someone else talk. One night I was just feeling lonely, and I told my nurse "I just want to talk." This angel looked at me, pulled up a chair and said, "What's up, Chicken Butt?" and chatted with me for 20 minutes. We talked about whatever came up. That she took those 20 minutes just to keep me company made a world of difference that late night. It still does. "What's up, Chicken Butt?"

When your husband shows up at your bedside at 2:30am, fresh from a shower and smelling like soap just because he was worried about you and couldn't wait to see you, he becomes your knight in shining armor all over again. It was like a dream: I couldn't believe he was there, and I was so happy to see him!

That little blow-thingy, the Incentive Spirometer, is harder to use than it looks!

The TV channel button and the "Call Nurse" button should NOT be within two inches of each other, particularly when a patient is on large amounts narcotics. It makes for bad relations.

It is really, really important that you put the bedside table close to the bedside when you leave the patient's room. Everything we want and need in the world is on that table....but we don't need it until it's out of our reach. That sucks.

When a patient has a foley catheter, they really CAN feel every tug and movement down the entire length of the tubing and all the way to the bag. Yowza!! And I thought it was just men being sensitive!

Clean, tight sheets on a bed make all the difference between feeling human and feeling homeless. Thanks, Mom, Ingrid and Ron! You guys made my bed every time I got up!

You know those annoying patients who say "I'm sensitive to adhesive!" "No tape!" I'm here to tell you: I'm one of them now, and I believe in Coban! My flesh was being torn off in layers. COBAN RULES.

The Surgical Team and the Pain Management Team have goals that are at complete odds with each other when it comes to the management of your pain. The surgical team wants you to take enough pain medication so that you can do the work you need to do in order to heal and get the hell out of the hospital. In my case it was those little things, like coughing, deep breathing, and getting out of bed with an 18 inch, flip-top, Pez Dispenser incision across my entire chest and four chest tubes poking around inside me. In contrast: the entire goal of the Pain Management team is to rid the world of the scourge of narcotic use and get everyone on Tylenol as fast as possible, regardless of what their pain level is, and no matter what the cost to the rehabilitation of the patient. Needless to say, I fired the Pain Management team and told Surgery I wanted them to handle my pain medications. Yes: you CAN do that as the patient. The worry of addiction is not at issue when you haven't even left the hospital yet. The Pain Management docs didn't like me much, either. I prefer to call them Pain Medicine Control physicians, rather than Pain Management physicians. "Pain Nazis" would be appropriate too...just maybe not to their faces.

Save every receipt. You'll be happy you did. Almost everything can be deducted as a medical expense, and it adds up. Quick.

No matter how cute you looked going in to surgery (I did!), you will look like HELL when you come out (I did...) Surgery is NOT pretty, so don't even try. Leave your vanity at the door, 'cuz you gonna be FUGLY for a while when you come out. That's just the way it is.

Yes, a stay in the hospital is the ultimate lesson in humility, losing your modesty, sharing bodily functions, and talking about the most intimate of details. I know there are those who think they could never - that they would die before succumbing to that level of indignity (I'm related to several of you,) but really - after a while you don't even care. When you really need the help; when you are that vulnerable - you don't care: you just need. And you are just grateful that there are people around you who are either knowledgeable enough or who love you enough to give you what you need, because you know that you would fail without them. It is a truly humbling experience, and it will bring a new perspective to you.

2010-03-29T17:31:00.000-07:00

So in case you ever doubted, let me tell you that God does have a sense of humor. I spent a year on the lung transplant list. A year and a day! That entire time, I swore I would stay groomed, lest I get called in to surgery in need of maintenance, which would only get worse over the course of a two to three week hospital stay (which is how much time we were told to expect my stay to be.) So I spent inordinate amounts of time keepin' up the maintenance. Ladies, you know the deal: the skin care, the wax jobs, the pedicures, the shaving, the plucking, the haircuts - precisely so that I would not go into surgery looking like the Geico Caveman's wife. Well, don'cha just know: I had a hair appointment scheduled in two weeks, and a wax job/pedicure appointment for the next friggin' day!!!! I hadn't shaved my legs in probably three days. And I was about to be exposed for the cave woman that I really am. Damn...talk about Murphy's Law.

We drove to Seattle together, arriving at UW a few hours later. Thanks to Ron's good driving we made it, safe and sound. The ride up was full of happiness, of worry, dreams of the future, introspective silence, and a few tears of anxiety. My sisters called several times to check in on us. The emails started to pour in on our iPhones - wishes of luck, prayers, and happiness There was no doubt many, many people were in on this ride with us. The positive energy you all sent was palpable. We felt enveloped with warmth.

We checked in to the admitting area, and I was given the gown and told to change. The wheels of the transplant machine started to turn. I was given my own gurney, had several interviews, an IV start, vital signs were taken. The transplant coordinator, Kathy Weakly came by to chat, and all we wanted to know is; is this a "go", or a "dry run?" As far as she knew it was a "go," but they still had to do some last minute testing on the donor lungs. Ron was all a-glow, holding my hand: he was so psyched! "I'm gonna get my woman back! Finally!" Mom was a little more worried, reserved - introspective. She prayed silently, kissed my head. Never has someone felt more loved. I vacillated between elation and short bursts of inner panic. I needed some time alone with each of them, and they with me. We shared the next hour or so together, and they each took several turns giving the other privacy with me. It was time for saying what had to be said: the most important things and yet the most simple. How do you say I love you - possibly for the last time? What words do you use to thank someone for loving you so well, so that they never forget it if they never hear it again? This very moment in life, I have been lucky enough to experience.

Finally, a friendly Anesthesiology Fellow by the name of Kaeck, ("Sounds like Birthday Cake!") came and introduced herself, and said she would be with me during the surgery. She did her interview and started an arterial line in my left wrist (ouch!!) "Is this a go?" She didn't know yet, but they were proceeding as if it were. Shortly after, the attending anesthesiologist, Dr Krishna, came by and introduced himself. He told Dr. Kaeck that indeed Dr Mulligan was en route with the donor lungs; we needed to proceed to the Operating Room in the next ten minutes. A little shot of Versed was pushed into my IV.

"Is this really a go??"

"It's really a go; it's Time."

Mom, Ron and I said our goodbyes. Suddenly I was not afraid (ah...Versed...) I was just really, really ready. Let's go: let's do this! I wasn't worried about survival, or pain, or recovery....This was in God's hands, and I willingly and completely surrendered. I was ready for new lungs: A new life! A life without supplemental oxygen and tanks and backpacks and tubes and shortness of breath and limitations and without that damned, constantly dry, sore nose. Dr Kaeck pushed me away on the gurney and I looked back as we turned the corner to leave the room. One last look. There was my husband and my mother, each smiling, waving. "See you very soon! I love you!" It was happy.

We rolled into the operating room, and I was surrounded by the familiar bustle. You see; I used to BE an Operating Room Nurse! What a strange thing, to ride into an OR on a gurney, as the patient. I recognized the equipment, knew who was the surgical tech, who were the RN's. A mask was shortly placed over my face to allow my lungs to fill with 100% oxygen; the last few breaths my old lungs would take, soon to be replaced by the lungs of an angel.

I was so ready.

2010-03-26T02:42:00.000-07:00

Holy Moly. I can't believe I'm writing this, but...I FINALLY. Actually. REALLY got a friggin' double lung transplant. I am still in shock. It really, really has come true!!!

First of all, let me start with a small apology for once again dropping off the Blogosphere for too long. My friend, Kateri, has regularly scolded and prodded me - to no avail. Yes; I can be stubborn. I had nothing to share: I had lost hope and for months had feelings of hopelessness, of despair, that I simply could not share, or risk taking my blog and it's readers' insight of me, down a very dark path where too many people would have been worried, or worse: thought me unstable... it would have been ugly. No. Better for all that I simply skipped it. The people who needed to know, knew. Not everything needs to be published. I'm sorry. Let me fill you in a bit on what's been going on.

In October (2009) our beloved dog, Chiba, started to have severe pain and fail. We did everything we could to keep her comfortable and happy, but it was spinal cancer, and there was really nothing to do, but to send her on her way to that better place. It was very sudden, and she was gone within the week. Ron and I took her to the vet and said our tearful goodbyes to our dear friend. She left a huge hole in our hearts, our home. Her last hours were spent with me, Ron and Mom continuously touching, petting and loving her: if we dared stop for a moment, she would lift her head and look at us, like "Well, Geez: don't stop now!" She was a demanding little dog. ha. She died without a doubt that she was loved and had taken very good care of us. We miss that girl. Her ashes and dog tags will sit on our mantle until we can bear to let go more fully.

I had quit working in December 2008, and was placed on the Lung Transplant List at UWMC in Seattle on 23 February 2009. So by January 2010, the New Year, when I had still not gotten The Call after eleven months, I was in a tailspin. This has been a long haul!! They had estimated 3-6 months that I would wait, and while I understood there was no guarantee, I was kinda clinging to that time frame. After all: they are the professionals, right?? I can't tell you how many calls I put in to my various sources of encouragement, trying to hold on to hope. My mother; Ron; sister Ingrid; my friends Mimi, Donna, MaryPat, Lisa, Jill, and numerous others. Each of you individually saved me from the abyss on several occasions; listened to my tears helplessly and just let me cry - which was all you could do and all I really needed. When would i get The Call?? Was I actually going to die waiting for transplant?? Am I so short they can't find a donor to match? I called too often to the lung transplant coordinator and social worker: "How many more transplants have you done? What's going on??" The truth was, they weren't doing many transplants: there was a huge lull in donors/transplants over the Summer and fall and everyone was waiting, waiting, waiting. The transplant team is ever so patient, and would talk me down from the ledge, just like they had probably done with the caller before me; and would with the caller after me.

I had finally admitted about six months ago that I was indeed in need of supplemental oxygen 24 hours a day. Actually, I probably needed it much earlier but you all know by now how much I loved my warm cloak of denial. If I didn't wear it, I didn't need it..right?? It was the BEST farce! But it had gotten to the point that I was so tired, my heart working so hard to oxygenate my cells, I just could not do it without the nasal cannula. So I had the oxygen company deliver a concentrator, and we learned to tune out the continuous hum and rattle of the machine that would take o2 from the atmosphere and concentrate it so I could breath it with a long, 50ft nasal cannula that followed me (and got tangled on every frickin' little thing) throughout the house. The temper tantrums I threw getting used to that 50ft long "leash," and the sailor-potty-mouth that I developed when it would get snagged or torn off my face as I walked around the house I think were frightening to my poor Ronnie. That poor man: what fortitude he has had throughout this. WHERE did he come from, and what the HELL is he made of?? And how the hell did I snag him??

And then: On February 24th, 2010...at 09:07am...One year and one day....Three hundred and sixty-six days after being placed on the Lung Transplant List...My phone rang. It was a Wednesday morning. My mother was at our house, cleaning my kitchen. I had just showered and gotten dressed. Ron was at work. It was the lung transplant coordinator, Kathy Weakly. I had just spoken with her the day before, so it was unusual that she would call again. She was so calm, friendly. Of course, for eleven months now, whenever I have gotten a call from (206) area code, it has put us in a small state of alarm, of hope...anticipation. I stood still as she spoke, Mom and I stared at each other, waiting to hear what she was calling for.

"Hi, Rebecca, How are you?"

"I'm fine, Kathy....how are you?"

"Oh, I'm fine. Listen, we have a potential Donor that we think may be a perfect match for you. But I need to ask you; have you had any fever or coughs lately? Are you well? Do you feel sick in any way?"

"No, Kathy. Really??" (I'm looking at my Mom, wide-eyed and smiling, nodding my head and fanning my free hand. Mom's looking at me; wide-eyed, nervous, and VERY worried... excited.)

"Really. Okay that's good. So listen...I don't need you to break any sound barriers, but why don't you go ahead and pack a bag and start on up here."

"REALLY?"

"Really."

"Where is the donor? (It had been my understanding they would tell you so you could estimate the amount of time you had to get up there.)

"I can't tell you that! Just come on up, get here when you can. Drive safe. You're not driving yourself, are you?"

"No, Kathy; my husband will drive. REALLY?? You have a donor??"

"Yes, Rebecca we think we do. We'll see you soon. I'm excited for you."

Over the months Ron and I had made (and revised over and over) a checklist of tasks to accomplish in this moment. We knew that we would be wrecks, and thank God that we did: we WERE kind of wrecks! The first item on the checklist: " REMAIN CALM....THIS MAY WELL BE A DRY RUN!!" There are times when a donor turns out not to be viable and the transplant is called off; one person on the list whom I have met in the past was put under general anesthesia, only to wake up and find out that she had NOT gotten the transplant because the donor turned out not to be suitable. So we had to temper our excitement with the knowledge of this possibility for disappointment.

I had to call Ron at work. We had agreed long ago that I would call the OR front desk and let them know so they could get his replacement and he could leave immediately. I called Brad, the OR Charge Nurse. I could barely get the words out for all my nerves, shaking and in-coming tears. "Brad this is Rebecca. I've gotten the call to come up for transplant, and I need you to get Ron out of work." Brad said his congratulations and said he would get Ron out. Two minutes later, Ron called and said "I'm on my way...start going down the checklist. I love you! This is it!"

My mother was so nervous, bless her soul. I think she finished cleaning the kitchen, with her mind swirling. She had only days before come back from a visit to San Antonio to see my sister and had not had a chance to repack her travel bag for when we got the call (we had all had a Go-Bag ready for months, waiting!) She said that she'd get things when we got there. Then we decided there was time: she would get a cab to her apartment and pack a bag while Ron and I took care of our own, lengthy checklist (how fast can you shut down YOUR house for an undetermined period of time, not knowing what the future holds or when you will be back?) and would come pick her up in 45 min or so. This worked well. Ron and I got our things together, closed up the house, put our new dog, Bach (yes! We have a new friend! More on hiim later) out and hit the road. By 10:00 am the three of us were together, in the Subaru, heading North on I-5 to Seattle.

We had gotten The Call.

Firsts.....

2010-03-14T22:27:00.000-07:00

Hello Family and Friends,
Sunday night is here, we have had a great weekend of firsts and look forward to beginning a new week. Rebecca is doing great and has made many strides towards regaining her strength. Her O2 sats are consistently in the upper 90's and she has gone on several extended walks through the University district here in Seattle, and all without an O2 Tank! YES!!!!! We've gone on a few drives and excursions to stores and gone shopping in a grocery store, who would of thought these small forays would be so awesome. Beck and her mom went for a walk from 42nd street to 45th, all up hill and back about a thirty minute walk. She's on her way to a new life.
My updates will be a little more intermittent from this point forward, but rest assured the updates will come. I'm doing great, just being around my girl is so energizing, I hope I never come down from this high!!!! Thanks Family and Friends!!!!
Your Friends,
Ron and Rebecca

She's outta the Hospital!!!

2010-03-14T22:26:00.002-07:00

Hello Family and Friends,
Today is a Great Day, Rebecca was discharged from University of Washington Medical Center. Complete with a new set of healthy lungs and an renewed outlook on life. The pharmacy was a big stop for us as the morning wore on, we picked up a bag full of meds. Anti rejection, pain relief, insulin pen and many more, (too numerous to list) This is what she will be taking for the rest of her life. But I should point out, there are quite a few, but only a couple of those horse pills. We rolled out of the Hospital at 1PM sharp and Rebecca was greeted by a beautiful sunny Pacific NW day. Wearing her duck billed N95 mask (when in crowds) she was delighted to be get out. After we got to the apartment, Rebecca settled in and rested for a while, Momma Elsa made some lunch and Ingrid talked with Beck. After about a 45 minute visit after getting back, I took Ingrid to SeaTac airport and saw her off on her way back home to Manhattan,(as I write this she is on her way in a limo to hers and Karl's apartment. Thank You Ingrid, You are one Hell of a great Sister. I Love You!!!
Rebecca has settled into our place and now has taken her well deserved shower, anyone who s ever spend a few days in a hospital can relate. Now it's time to get on the time table for med s and rehab, appointments with the lung transplant pulmonologist, labs and chest x-rays. This will be going on for the next few months, hence to why we have to stay here.
Also on this fine day Rebeccas good friend Kathlin Kennedy got her lungs too, this is so great!!! She and Beck became transplant support group buddies over the course of the past year. We are very happy with the news, she got the call this morning while Rebecca was getting her stuff together to be discharged. This evening we received a text from her family that shes in the ICU resting and beginning her journey to recovery too. So all in all an awesome day for many folks out there. Prayers and Best Wishes to a speedy and uneventful recovery to Kathlin and her family. And Of course my girl too. Thank You everyone for being there with us, your continued support shines through. Lots of Love out there. :0)

Your Friends,
Ron and Rebecca

PS: Good Night Ingy!!!

another step closer........

2010-03-14T22:26:00.001-07:00

Hello Family and Friends,
Well another day closer to freedom, Today while Rebecca was recovering I made a trip to our home to pick up some necessary items. All the while Rebecca was getting the final two chest tubes removed and further instruction in physical therapy. The epidural was removed and she went on oral pain control, this is all just an unbelievable miracle and we are all very ecstatic. As it stands right now, it looks like Beck will be released tomorrow afternoon. Wow! WOW! WOW!!. It'll be so good to get her out of the hospital. So at the end of this long day I'm totally toast and will continue tomorrow. Thanks for taking this ride with us.
Your Friends ,
Ron and Rebecca

Chest Tubes Coming Out

2010-03-14T22:25:00.000-07:00

Hello Family and Friends,
Long day today, I couldn't sleep last night because I kept thinking about Rebecca, so at 0230 this morning I got up and showered and went to the hospital to be with her. I arrived in her room at 0345 and low and behold my girl was awake, and quite surprised and happy to see me. So began our day. Rebecca felt she needed a bath so we got things all set up for her and took care of business, for those of you who have spent any time in a hospital bed you know what I'm talking about. As the day wore on the Docs came in and removed two of the four chest tubes, much to Beck's relief, and spoke of discharge by Friday. This seems like it's to soon, but she's recovering marvelously, and barring any problems, who knows. We'll see as the week moves on. We also got a visit from pharmacy and learned of her medication regimen and how to identify her meds!! Wow! quite a variety of shapes and sizes, but all these are to make the new lungs not get rejected. So as our day comes to an end, Rebecca is exhausted ,as are the rest of us. Elsa (Mom), Ingrid (Sis) and I are back at our apt and having a nice pasta dinner and some excellent Tempranillo from Spain. Tomorrow brings new challenges and hopefully the other two chest tubes come out. So on that note, Thanks for hanging with us. Until the next installment. Thanks.
Your Friends,
Ron and Rebecca

Walking out of the ICU!!!

2010-03-14T22:24:00.000-07:00

Hello Family and Friends,
Day six and Rebecca walked out of ICU into the ICU step-down. It's an absolute thrill to see her progressing in this way. She is raring to go, but alas she understands that it'll be some more time in the hospital until she's ready for the outside world and our little apartment we have. Her new room faces south and has a wonderful view of the lake Washington ship canal. Many trees and the waterway make it a comforting site This evening as the sun was setting we were entertained with a beautiful Maxfield Parrish sky, he so happens to be one of Rebeccas favorite artists.
Tomorrow begins the pharmacy education phase and more Physical Therapy and Occupational Therapy. The transplant team really has all their stuff together. We are continually impressed with the professionalism and care these fine folks are providing and Thank God that they do this for their transplant patients. Tomorrow Rebecca will continue on this journey with thoughts of all your prayers and well wishes to keep her moving in the right direction. We too are looking forward to the coming challenges and conquering them with you all. AGain Many Thanks and See you soon.
Your Friends,
Ron and Rebecca

Transplant Central

2010-03-14T22:23:00.000-07:00

Hello Family and Friends,
Well day 5 is in the books and we are making steady progress, my girl is now officially a med surg patient. To all of you not familiar with this, it means she is no longer an Intensive care patient, YeeHa!!!! Today Rebecca had her cordis line (an IV line in the neck) removed and a three lumen line placed. Also she was able to get a nice bath and a hair washing from her nurse early this morning. She is a miracle to behold and I am just on cloud nine with her recovery from this trail. I know we will always be on the look out for signs of rejection, but today; right now,my girl is doing great and is on room air with a 97% O2 saturation.Beck has also been out and walking the unit with the help of her PT and the cardiac/Thoracic stroller. She walked about 350 feet today around the unit!!!! On Room Air no less!!! She continues to amaze everyone here in the unit, to include the Doctors. Wow is my closing for tonight. I go to sleep knowing that Rebecca is another closer to coming home. Thank You all for your positive vibes.!!! :o)
Your Grateful Friends, Ron and Rebecca.

She is Walking

2010-03-14T22:22:00.002-07:00

Hello Family and Friends,
Today marks another day of firsts. Rebecca sat in a chair for over an hour and is on room air with a oxygen saturation of 95-96%. Then to top that off she finally began her walking regimen. She was able to go out the door of her room and into the hall for a quick 60 foot hike, this will be the first of many and one day she; god willing, will be running with her friend Lisa. We are seeing a miracle in front of our own eyes and rest easier seeing the progress she is making. It's absolutely awesome the way the body responds, and I'm glad to see my girl progressing. Again we offer our warm thanks to you all for your prayers and support. As Beck gets better she'll be able to read all of your messages.
Your Friends,
Ron and Rebecca

Rebeccas Transplant Journey

2010-03-14T22:22:00.001-07:00

Hello Family and Friends,
Well another eventful day here at transplant central. The arterial line and one of the IV access lines came out; and Beck's color is improving very nicely. Her swanz line is still in and will probably go tomorrow. Vital signs and pressures have stabilized. Today also marked not once , but twice that Rebecca was able to sit up and move to a chair bedside. She was able to sit for 30 minutes the first time and 45 minutes the second. She also has begun using her triflow incentive spirometry and is doing well with it, better each time. Her sister Ingrid braided her hair and Elsa washed her up....I took pictures if you must know what I did during all this. I've kind of also become the official photographer for Beck, as she wants to see what she missed from the beginning and document this incredible journey.
The ICU nurses here are quite outstanding and we are very pleased with their wonderful bedside manner and expertise. We are continually amazed with the care and passion these fine folks display and the approach to their job; reminds me of my colleagues.
So on that note, we wish you all a good Saturday night and Thank you for your prayers and well wishes.
Sincerely,
Ron and Rebecca

get well cards and donations

2010-03-14T22:21:00.000-07:00

Hello everyone,
Rebecca is doing fine and progressing. I wanted to take a moment to let you know if you want to send a get well card to Beck, send it to Rebecca Kasco 4115 Roosevelt Way N.E. Apt #303, Seattle Wa. 98105 This is our address while we are up here recovering. No flowers or live plants are allowed in transplant rooms for obvious reasons. Also if you feel compelled to make a donation consider Transplant House. http://www.transplanthouse.org/

Thanks Ron and Rebecca

She's Breathing!!!!!!!!!!

2010-03-14T22:20:00.000-07:00

Hello Family and Friends!!!
Rebecca is breathing on her own!!!!!!! She was extubated at 7:05PM PST and began breathing with her NEW Lungs on her own and is doing Great!!!! My girl is on the road back!! Now comes some hard work back to good health and bring those lungs up to speed. She is still in ICU for the next day at lest, ten on to the step down unit. This update is short but to the point, I'm going to sleep well tonight knowing that Rebecca is breathing on her own and with she and her new lungs safely tucked in. :) Thank You all for your continued support and Love. We cherish all of your wonderful friendship and Love.
Thank You,
Ron and Rebecca

Rebecca Update

2010-03-14T22:19:00.002-07:00

Hello Family and Friends,
Today Rebecca continued on her journey to recovery. When we arrived this morning we were told she had an uneventul evening of sleep; looked very comfortable and had really good color. While Ingrid and I were standing at the foot of her bed, the nurses were making sure the blood product name and patient matched, This is when we noticed that Rebecca was nodding when they read her name, WOW !!!! WOW!!!! WOW!!!! She was hearing and responding!!!!! :) Then she began to open her eyes and the nurse (Stacey)asked her if she recognized who was standing at the foot of her bed, to which she again nodded Yes!!!!!!! We were overjoyed with this development and realized Rebecca is on her way Back to us. This was at 9AM PST, a few hours later she got an epidural, which she also tolerated like a true champ, they sat her up for that. Unfortunately we couldn't stay in the room, too many staff, and we didn't want to be in the way. We are currently (1430) awaiting extubation of her airway and getting off of the ventilator. I'll let you know in the next update how the journey continues............
Love You All,
Ron and Rebecca

Rebeccas Continued Recovery

2010-03-14T22:19:00.001-07:00

Hello Family and Friends,
A quick update for you all, it's been a long, long 36 hours and all is going well. Rebecca is still on the ventilator and will be hopefully getting off of it tomorrow morning . She is doing really good and small things like warm fingers and watching her chest rise higher than I've seen in many years are a good sign. The excellent nurses, doctors and clinicians at University of Washington Medical Center are making this an even more unforgettable experience. We will forever be indebted to them. So tomorrow is going to be a big day, well, today was a big day and all that are to follow will be big. So for now ,Good Evening and Thanks Again for being with us.
Ron and Rebecca

Rebecca is out of surgery

2010-03-14T22:18:00.000-07:00

Good Morning Family and Friends,

Rebecca has successfully made it thru surgery and has her new lungs, her case ended at approximately 0115. I spoke with Dr Mulligan shortly after her procedure and he told me all went well; and that the lungs were a good fit, however she did have to go on Heart/Lung bypass due to low blood-pressures. She will be coming up to the ICU shortly and will be on a vent for period of time (anywhere from twelve to thirty six hours) I'm looking forward to seeing my girl and beginning this journey together towards recovery. Keep us in your prayers and stay tuned for updates.

Thanks everyone! Ron and Rebecca

Rebecca is in surgery.

2010-03-14T22:16:00.000-07:00

Hello, friends and Family,

Rebeccas surgery started at 1900 PST and it's a go!!!! New Lungs are enroute!!! looks like the next part of the journey has begun. Thanks to all of you for being there for us. We Love ya!!! Mama Elsa and I are doing fine and hanging out in the waiting room. Updates will be forthcoming as time and sanity permits! :)

Your Friend ,RonRebecca is in surgery.

Rebecca has gotten THE call!!

2010-03-14T21:21:00.000-07:00

Hello, friends and family:

Just wanted to let you all know that at 09:07 this morning, one year and one day from the day I was put on the transplant list, I GOT THE CALL! Kathy Weakly, the RN coordinator for the lung transplant program at UW called and said that it looks like they have a donor that is a perfect match for me, and that we should pack a bag and come on up. She said "don't break any speed barriers, but get here when you can."

I love you! I feel all of your good wishes, positive thoughts and powerful prayers. Let us all remain calm: this may be a dry run, and it is not uncommon that it turns out that the donor lungs are not viable after all, and patients end up coming home without a transplant. Hopefully that is not the case, but we will be in touch.

I am very, very excited, nervous, scared and emotional as I type this, as are Ron and Mom as we all pack last minute items to go. Wish us luck!

Much love! See you soon!! Rebecca

2009-09-04T10:22:00.000-07:00

Many of you have inquired as to the wellbeing of my fellow Transplant Support Group member, Luke. I wrote of Luke's charm and likability here in the blog a few weeks ago. I am sorry to share the news that I received just this morning... Luke Chadwick passed away on August 22nd. He had a beautiful spirit and will be missed by friends and acquaintances alike. While I didn't get any of the numbers right when I wrote of him - not his age, or how long he'd been in the hospital, nor when he had been transplanted; I did accurately describe his warm, welcoming nature and extremely likable spirit. Please take a moment to read, and then click down further to read his obituary, which contains a touching, accurate description of this lovely person:

LUKE CHADWICK

As many of you know, Luke had been hospitalized since May and for the past month had really been struggling. His condition deteriorated significantly last weekend to the point that he was no longer able to interact with those around him. His parents, understanding the gravity of his condition and that he would not recover, asked that support be withdrawn. He died around 7 PM Saturday August 22, 2009 with his parents at his bedside.

A celebration of Luke’s life will take place Sunday, September 6th at 3 p.m. at Rolling Bay Presbyterian Church, 11042 Sunrise Drive NE , Bainbridge Island, WA, with a reception to follow for all to tell Luke stories.

Donations in Luke’s name may be made to the Pulmonary Hypertension Association, which did so much for him as he fought his illness. The PHA is at 801 Roeder Road, Ste. 400, Silver Spring, MD 20910, or online atwww.phassociation.org.

To honor Luke’s year of transplanted strength, please consider registering as an organ donor.

If you would like to send a card to the family, please contact Angela Wagner at: wagnera@u.washington.edu

Click here to see Luke's full obituary.

Tell me again, Mimi

2009-08-28T16:07:00.000-07:00

I woke up this morning as the day was just beginning to be lit by the sun. I lay in bed, listening to the earliest birds greet their new day, while Ron's steady, full breaths signaled his deep sleep. I felt so at peace in the quiet. "Today will be a good day," I thought to myself.

A little later I made scrambled eggs and toast with sliced bananas and a big, juicy tomato right out of the garden! A tomato right out of one's very own garden? Now, that is one of life's little treasures! We ate our breakfast and planned our day. Just as we were cleaning up from breakfast, the distinct ring of a pager started alarming! Now, I should preface that with the fact that we have two pagers in our house: Ron's on-call pager for his work; and mine - for when I get The Call from the lung transplant team. They both have the exact same ring. Ron's pager has gone off several times since I got on The List, when he has NOT been on-call; it gives me a mixed jolt of adrenaline/rush of dread every time. Apparently the # to his pager previously belonged to one of the physicians we worked with; not everyone has gotten the message that it no longer belongs to that physician. We always answer the page and ask that the party on the other end take note that the pager has switched hands; I think we have hit most bases and gotten the message out. The last time it happened, about two months ago, I was having a bit of an emotional down-swing on that roller-coaster I keep talking about. It was a nursing unit at one of the local hospitals who had sent out the page, and I took the opportunity to paint the full picture as to why they needed to get the word out that this pager # no longer belonged to Dr. Moreheart: the pager now belongs to someone whose spouse is on a transplant list and waiting for their own, same-brand pager to go off, and that we were having multiple heart-attacks, thankyouverymuch.

The first time I heard that pager go off, my heart dropped to my knees. When I realized it was indeed Ron's pager and not mine, I felt a mix of disappointment and relief. Like I said, it's happened several times, but had not in a while. This morning, we again heard that familiar, slow, high-pitched "beeeeep....beeeeeep.....beeeeeep.....beeeeep." Ron and I fell silent. We each stood, frozen in place and our eyes locked on to each others' for just a few seconds. We were in the kitchen and the sound was coming from the office where Ron keeps his, and where mine had last been left.

My very close friend, Mimi, has brought me great comfort on several occasions by saying, "Rebecca; look at it this way - each week that passes while you are on the list just makes it one week closer to you getting The Call! It IS going to happen: relief IS coming." I love Mimi so much. Her words work; they have helped me to find yet another dose of patience just when I think I have run out. Now it's been over six months since I was placed on the lung transplant list: past what we were told was the "average" period of waiting at the time I was listed. I am beyond that window - beyond that neat little box of reasonable anticipation. I find myself alternately thinking, optimistically "today, maybe!" and a not-so-much, "maybe never..." This morning as those "beeeeeps" halted, Ron broke away from our lock-stare and went to the office to get the pager. Which one?!? I closed me eyes and found myself with fingers interlaced and pressed to my lips, whispering softly: "Please God... my turn. IamreadynoI'mnot. Is this it? Please let that be my pager and not another mistake." Now I held my breath as I waited, looking toward the office wide-eyed and unblinking. A second, maybe two (an eternity) passed and still no word from Ron! I went into the office: there he stood with his pager in hand; "It's mine." Another mistaken page. We each breathed a sigh of.... of what? Resolve? Relief? Disappointment? Yes - all of these.

Tell me again, Mimi. I need to hear it again.

Thank you

2009-08-24T13:57:00.000-07:00

Those of you who read this blog have no idea how much it means to me that you are still "tuning in." When I wrote two weeks ago about being in a dark place, I had no idea how many were still checking to see if I was still writing. My good friend MaryPat had lovingly scolded me several weeks prior, saying that there may be people out there who are thinking the worst has happened, since I had dropped my blog, and that I should let them know I'm still kicking. It hadn't occurred to me. Since I've started writing again I have had numerous calls, emails, several lovely gifts to cheer me up, and have even made dates to see a few friends I had not in a while. Just being reminded that I am in so many peoples' thoughts and prayers has cheered me. As I said I have been trying hard to climb out of that dark place, and I have made progress. Like it says on the home page; this is a transplant roller coaster, and there have been many ups and downs. I lost track there for a while and was only focusing on the downs - on the negative. I'm getting to a better place now. I do need to remember to reach out more; everything really is easier when you share what's going on. I did reach out, and many of you responded, in many ways.

I just wanted you to know that your support and encouragement and cheers really have made a difference. Thank you so very, VERY much. Rebecca.

Plan B

2009-08-18T10:20:00.000-07:00

Day #174 - My mother moved out yesterday. She endured living with Ron and I for seven months, then tucked tail and ran. Noooo...I'm kidding. Well, she really did move into her own apartment. But it was time. You know, we're new to this whole transplant thing... when they said three to six months' wait; I think we clung to the "three." We wished and prayed for three. I wanted to be one of those lucky ones who they find the perfect match for in an amazingly short time. Yeah...no. Since it isn't looking like I'll be fitting into that statistic, we all decided it would be good to develop Plan B, which is to get back to our normal lives and routines and living conditions, and go when the call comes. It will still all work out fine; she's ten minutes away.

Next week will mark the sixth month since I was placed on the lung transplant list. I have to admit that sometimes it feels like I'm at the bottom of one of those ponzi schemes where the people who get in early get the big rewards; the poor schmucks who buy in late never collect. When I go to the transplant support group meetings and the post-transplant recipients are there - they would be the early birds; the big winners. Us pre-transplant people are the ones waiving our hands, "Oooh! Ooh! I want in, too!" When I dwell - when I daydream, it just seems too good to be true that I will one day have all options for activity again. But really I know; this is not a ponzi scheme, and people really are continuing to get their transplants - their new, healthy lungs. I have to keep the faith that my turn will come - when the right donor comes along. Until then, our lives have to go on. And too, that's why it was best that Mom get back to her life, her own space; and us to ours. Mom giving up her home and moving in had become a constant reminder, to each of us, that we are living on standby; mentally holding our breath in anticipation of that one moment - the curl of a metaphorical finger - that would allow us to move into the next phase. In the mean time, we'll just keep on living our lives. Our good lives.

Day One-Hundred, Sixty Eight

2009-08-12T08:48:00.000-07:00

Yesterday I made the drive up to Seattle, to attend the monthly lung transplant support group meeting. This is where pre- and post-transplant patients and their families can come to hear and talk to others in similar situations. I have been coming monthly, and I find it can give a good boost in morale. I have befriended another woman, Kathlin, who is also on the transplant list. She and I have gotten together for lunch or dinner a few times, to chat at length about our experiences. Kathlin has been on the transplant list about as long as I have. I do find some comfort in hearing that her struggles are much the same as mine. I know there are few who can truly relate, rather than simply empathize. Ron and Mom have each come up with me several times, but neither of them have a strong urge to attend, so I have been coming up alone. I do enjoy the 24 hours of solitude. There are too many thoughts continuously swirling around in this head of mine; the uninterrupted, undistracted solitude of the drive there and back and a night alone in a hotel help me to untangle some of them, put them in some sort of order. Last month when I got up here I called home to inform them I was staying an extra day! It gave me a big surge of a sense of control; something I don't feel a lot of these days. How ironic, given that I am a HUGE control freak - ask anyone. Ahh, yes: God has a sense of humor.

There is a young man by the name of Luke who I met through the support group. Luke is in his late 20's; kind of a gangly, silly guy with thick glasses and a mischievous smile. He had a double lung transplant over two years ago and was doing great! I affectionately dubbed him the group mascot because he makes everyone, young and old, feel welcome. Even if he's only met you once before, he offers a sense of familiarity and makes you feel like "you're in the club!" The first time Ron came to a meeting with me, Luke came over and gave me a hug hello (I myself had only been to two previous meetings at the time) and introduced himself to Ron. When Ron said he was my husband, Luke said, "Oh, so you're my main competition!" Ron, also being a fun guy, replied "Yep, that would be me." Of course, what girl doesn't secretly like two men fighting over her? ha.

About four and 1/2 months ago now, Luke acquired some infection in his lungs and was placed in the hospital. He is still in the hospital, and has been on a ventilator most of his stay. It has been a blow to the group, as he is every one's favorite. I think too, that everyone takes it very personally; we all know that could be us easily. It's a scary thought. I know anything can happen to any of us, at any time. Somehow it seems though, that when someone has been through such challenges as Luke has, and then got his transplant and was healed and living a full life again, that should be it. Hasn't he endured his share? Shouldn't somehow his ticket be stamped "VIP" so he can have a free pass through life after all that? It kinda sucks that we can't have a finite number of huge challenges, then just collect our pass for a guaranteed smooth ride at some point. But I guess there are pieces of this this big, life puzzle we don't get access to until much later. I have to trust in that.

One Hundred Sixty-Six

2009-08-10T03:41:00.000-07:00

166 Days on the list - It has been a long time since I have written in my blog. I have intended many times to sit down and let the words flow, but something always stops me. I have had feelings and thoughts going through my head that I could not share. These sunniest days of summer have been some of the darkest in my life. I have fallen into an abyss which at times is so slippery, I cannot gain the traction to pull myself out. I am fresh out of cute. I have contemplated all of my options. Yes, All. There are none good. The least worst at this point is to continue with this agonizing wait. The humor has mostly burned out; only occasional, pathetic puffs of a joke arise from the ashes.

We knew before I was placed on the transplant list that the average wait time for lungs at that time was three to six months. I know: I'm not even at six months! Am I impatient or what!? I could have sworn that I put in a request for an early check-in, but now they seem to have lost it and I can't find my receipt. And I am pissed. Come on, People! I have things to do!! I am tired of waiting in this line - can't we move things along here?

Try as I may to stay positive, I find myself dispirited in a way that I have never known. To actually DO anything takes great effort, and saying the appropriate positive catch phrase has become an exercise performed in large part for the comfort of others. Yes - it is dark in here. For twelve years I have dealt - really dealt with this illness, not knowing how or where it would end. I have stayed positive. I have done everything the doctors told me to do; I have gone to countless appointments, taken all their tests and seen all the specialists. I have let them poke me so many times for blood I actually have areas on my arm that are scarred from all of the punctures. I have cooperated! I haven't even questioned (much) why God has chosen this path for me. I have searched for and found a positive spin on chronic illness. And now I am tired. I am tired. I want to be well. I want to NOT be that person who avoids taking out the trash because it takes a large effort. I want to get up to go to the bathroom in the night without having to catch my breath when I get back to bed. I would like to go one day without hearing my heart pounding in my ears because I have over-exerted myself by walking out to the mailbox without wearing the 02. And you know what else? I r-r-h-heeeeeally would like to pick out an outfit to wear without having to wonder how that f---ing little backpack will look with it.

Eight months ago I left work. Eight months! How much of our self-worth and social life is attained through our work? MUCH of it, I have learned. I find myself at a point where I hesitate inwardly to say I am a nurse. Am I still a nurse? It is way-y-y premature to switch to the phrase "I was a nurse" or "I was in nursing" And yet, when I occasionally hear a friend in the profession talk about their experiences I find myself relating with a sense of nostalgia, rather than one of being in the trenches with them; without having my own recent experience to correlate. And yet, I have been a nurse for 17 years. If not a nurse, then who? What? How much will I forget before I am able to get back to the bedside? Where will I fit in, when it is time to go back to work?

My iPhone, which I love dearly, has essentially stopped ringing. I should reach out more. But as I said, I have been in a dark place and this is not an easy thing to talk about. Or to hear, I realize. So for now I will, again, deal with the situation. Depression is so tiring. But I have time to rest - lots. I haven't found them yet, but I am sure there are things to be learned in this state, too. I was recently sent a cartoon which very succinctly illustrates something I have long believed, and which I found much comfort in seeing in print. I hope you do, as well.

How often we complain about the cross we bear but don’t realize it is preparing us for the dip in the road that God can see and we cannot.

2009-03-29T16:52:00.000-07:00

Day # 48 on the Transplant List.... Thursday was the first day in a long time that it was warm and sunny! Living in the pacific northwest is a commitment to dealing with rain. The rain has its wonderful points, of course; everything here is green and lush. Plants (including the weeds) proliferate in abundance, and grow to amazing sizes; like my butterfly bushes. The first time I ever saw a butterfly bush was in Reno, Nevada. We were at a garden party in the summer, and the hostess was an avid gardener. Her backyard was immaculate and gorgeous - full of specimen plants that had all been lovingly cared for, and a thick, green lawn. If you've ever been to Reno you know; a green lawn in mid-summer is almost an oxymoron. There was a four-foot bush in one area that had lots of these long, tapering spires growing from all over it, consisting of hundreds of the tiniest purple flowers you'd ever see. She told me it was a butterfly bush and said it attracts not only butterflies, but hummingbirds! I was sold... someday I, too, would have a butterfly bush! The down-side of rain in the pacific northwest is that, once it starts, we have about eight months where it rains most days of the week. We have a garden in here Vancouver now and I do have not one, but two butterfly bushes! They are gorgeous; one is pink and the other purple....I couldn't decide, so we bought both! One can never have too many butterflies or hummingbirds, right? But depending on who you talk to (or how many days of solid rain they have endured,) one CAN have too much rain. That rain, however, has helped my two butterfly bushes grow to ten feet tall! And yes - we get lots, and lots of hummingbirds and butterflies!

But I digress! Thursday was a beautiful day! The leaves on my blueberry bushes are starting to bud out; the daffodils are in their glory and the crocus have, well, croaked. Time to get gardening! Ron had had four yards of good dirt delivered to top off our garden beds, build a few more raised beds for veggies and to fill some pots and hanging baskets for flowers when it gets warmer. The deal was that he would fill and dump the wheel barrow, and Mom and I would shovel and rake the dirt into place so it was evenly distributed. Mom and I took turns, trading shovel for rake. My stupid oxygen backpack, which I know I should be grateful for because it allows me the ability to do stuff (like gardening) that I would otherwise be unable to do, but which in reality I resent and can't wait to be rid of, was strapped onto my back and cranked up to five liters per minute. The nasal cannula prongs poked in my nose and wrapped around my ears, cinching tightly under my chin like a tacky sun-hat on a drunken Mexican vacation, accentuating my double chin ever so attractively, so that it would stay in place as I moved about. The three of us got a system going; Ron would fill the wheel barrow, bring it to the appropriate spot, dump and go for a refill, while Mom and I pushed the dirt to it's appropriate spot and depth. I've been working out like a fiend in our basement with the oxygen cranked up, and although my insulative-fat-layer remains, I am happy to say that my strength has definitely improved over the past two months or so. So I thought I was doing great! Sure - I was working in short bursts with frequent breaks to catch my breath, but inside I was saying to myself, "Wow! You're doing great! What other person on oxygen do you see shoveling dirt, Rebecca?? Maybe it's all a mistake: you're NOT ready for transplant, and somehow they have the wrong data." I noticed that occasionally Ron would pause briefly to watch us, and that Mom, too would pause and watch...maybe to catch their own breath. I imagined that they, too, were thinking, "What is this woman doing on the transplant list? She's shoveling dirt for chrissakes!" I didn't say anything, but I was feeling very proud of the fact that, in that hour or so of shoveling and raking and being outside in the garden, this damn lung disease had taken a back seat! I was OFF of the couch and OUT of the house and MOVING about! I was dirty and cold, and happy to be in my garden, even if it was just to push dirt around. I was doing it - I was participating. At one point Ron - being concerned and watchful as ever, stopped what he was doing and said; "You okay, Kasco?" I was "taking a break;" breathing in gasps and grunts, slouched and holding onto the fence for support. "Yeah, just taking a break." It's tiring work, this gardening! Another burst of shoveling for a few moments and it was break time again. Mom stopped to take a drink and said to me, "Boy, Rebecca...If Dr. Mulligan [my transplant surgeon] could see you now, he would..." As the words came out of her mouth, in my mind I was finishing her sentence. I thought she was about to say, "He would tell you "you don't need a transplant! You're not sick enough."" But instead, the words that came out of my mother's mouth were, "If Dr Mulligan could see you now, I bet he would tell you you're going to the top of the transplant list. You need some new lungs, honey." My bubble burst. I suddenly felt slightly foolish. She was seeing me as I truly am. My perspective is warped; it's been such a long period of time since I last was able to take full, effective breaths that I don't even remember what it was like to have healthy lungs. So thrilled am I to be doing anything remotely requiring physical exertion, that I forget that it is not normal to require five liters of oxygen and a cannula up my nose to assist me. But one day - one day soon, I will be breathing normally and effectively. My new, healthy lungs will let my body do what I want, when I want. It will be my muscles or my willpower that tell me when to stop, and not a lack of oxygen. The only backpack I'll be wearing one day soon will be the one with water and snacks and light sweater and a camera in it. And I promise myself that the only thing that will ever be cinched under my chin again will be a tacky sun-hat on a drunken Mexican vacation.

Day #44

2009-03-25T13:39:00.000-07:00

Day #44 on the transplant list...Today my mother and I are at UW for the transplant caregivers' support meeting. I came with her for the trip, but she will go to the meeting alone. The patients - those of us who need or have had the transplant, are not allowed. I guess it's so they can speak freely about their feelings and experiences. It's not easy to adjust your life to the needs of someone going through this. Sometimes it occurs to me that I am glad it happened to ME instead of a close loved one, because I think it would be even more a pain in the ass to have to deal with this if I actually had the choice not to - if I could just leave and have it all be out of my life. Would I have had the fortitude to stick around?? Some people wouldn't. The fact that my husband is still here after eleven years of dealing with this - with me - as I continue to get worse, is a testament to his courage. My mother moved in with us two months ago to help out before and after the surgery, against her better judgement! I am happy to say though, that it is working out well; the three of us living together. This is when you know you are truly loved. I reminded every day by family and friends that I am, indeed, loved. I am so grateful.

Mom and I lingered over a good breakfast and then went back to our room to relax while we waited for the morning to pass. Now here I sit, in the main lobby of The University of Washington Medical Center. According to a very large banner outside the hospital, it was named among the "Ten Best Hospitals in the Nation." The hospital is quite large with long hallways that go this way and that, taking people to departments with names like "Head and Neck Surgery Center" and "Transplantation Services." Into examination rooms they go; and when they leave, many of their lives will forever be changed. The main lobby is filled with nooks and crannies furnished with velvet arm chairs, pleather couches and foot stools offering some comfort to those who wait for good news and bad.

As I sit here in my comfortable velvet chair and people-watch, I am struck by the fact that walking and wheeling past me are the sickest of the sick, accompanied by their loved ones. Many of the people who have come here have been to other doctors and medical centers and told that they were unable to help. This is the end of the line for some. I see people with Lou Gehrig's disease in wheelchairs with keyboards attached, enabling the passengers to communicate. Bloated abdomens and jaundiced faces of liver patients - their eyes tired and weary. And lots of smart-looking people in lab coats or scrubs, with stethoscopes around their necks; the physicians and staff of this facility full of tragedy and hope. As I sit here, typing and looking about, I realize that many are staring back at me. And then I realize that they are seeing a young woman, neat and relatively attractive, and much too young to be wearing oxygen. And although they can't see the diseased state of my lungs, the nasal cannula gives me away. I am one of them: among the sickest of the sick. How did I get here? How did this come to pass? It sounds melodramatic, even to me...but I guess it must be true, or I would not be on the transplant list. Right?

A tall, slim man walks by in long strides, with spine erect, energy in his step...and a mask over his face. He sees me watching him and we lock eyes. I instinctively know he has had a lung transplant by the way he stares at me until he is out of my line of sight. There is a smile behind that mask - I know it, even though I will never see it; but it's there in his eyes. He just told me "It's all going to be worth it; hang in there," without saying a word. I smile back at him for but a second before he is gone, and I nod, "I believe you."

Today

2009-03-08T15:01:00.000-07:00

Day #27 on the transplant list. Almost one month ago, I was so anxious to be listed! It was a milestone in this long struggle. I felt so full of hope and positive energy. Today, I'm not even sure that person exists. But this is a temporary sense of doubt....surely it must be?

I remember back to 1979, when I lived in Santa Rosa, California. I was in 7th grade, and the local roller skating rink was THE place to be on weekend nights. Parents would drop the kids off, or the more protective parents would come in and set up camp at a table for the evening, to keep an eye on their offspring. "My Sharona," "Sad Eyes," "Lonesome Loser" - these are the songs that take me back there. I can see it in my mind. Every one was there - it was a big social scene. Teen and pre-teen crushes bloomed and withered in the same evening. I never was a very good skater. Some of the kids could skate backward, or cross foot-over-foot to go around the bend at either end of the rink. I was always the one with my arms out for balance - knees bent, leaning forward - all in anticipation of falling, which I would do time and time again before the evening was over. When it came time to turn the bend, I was the dorky one who took little baby steps; quick-stepping to make the turn, rather than stepping smoothly and crossing foot over foot...I never did stand tall, or straighten my knees, and I never became proficient at that whole brake-thing: putting one foot behind with the toes down and making that rubber-stopper thing touch the floor, to slow myself. I was out of control with every lap, throughout my entire roller skating career! I would step into the skates and walk assuredly along the rubber floors to the edge of the rink, but the moment those wheels touched that highly-polished maple rink, I became another person. I would just skate from Point A to Point B, slamming gracelessly into the railing where, for a moment, I had something stable to grab onto before taking off again, looking for Point C, where I would again slam gracelessly into the railing. Today I can admit: I hated skating.....but the music was soo good! "Bad Girls.......talkin' 'bout the bad girls..."

Whereas so recently I felt elated that finally I was on the transplant list, I now find that this seemingly endless waiting is but one degree short of agony. One would be correct in observing that I am not a patient person, and this experience is nothing if not a lesson in patience to an extreme degree. 27 days ago I pushed off from the milestone of being listed (Point A) and today, I find myself wandering, waiting....filling the time until that magical moment when my phone will ring; when the Caller-ID screen reads a phone number that begins, "206-," for this is Seattle's area code - and that of my transplant hospital; Point B. Today, I find myself floundering between Point A and Point B. Surely I should have some sense of purpose in this period between being listed and getting the call? Surely someone with more fortitude than I possess, today, would be savoring all this free time to do with what they wish! There are things to be done; weeds to pull, cookies to bake, books to read - it sounds romantic, even to me. And yet, today, I am ungrateful for any of them. Instead, today, I want what I do not have. I want to take my dog on the walk that will tire her instead of me. I want to be in the forest with a knapsack full of snacks and a sweater and a bottle of water, instead of one containing only an oxygen tank. I want to be the light-hearted guest at a party or in a bar having a night out with friends, instead of staying home and watching a movie or reading again. I would even settle for being the dorky one, slamming gracelessly into the railing on roller skates....today. Hopefully tomorrow will be better.

In the meantime, I have that song "Sad Eyes" from 1979 stuck in my head. I only know one verse, and it's playing over and over, and over. "Saaaaaaaad Eyyyyyyyes, turn the other way...."

The Calm Before the Storm

2009-02-28T20:14:00.000-08:00

Day #19 on the transplant list. Time is moving slowly, and I am reminded of the nautical saying, "Dead in the water." It refers to the old sailing schooners that relied upon the wind to propel them through the seas and toward their destination. Occasionally, the winds died down and the ship simply drifted, powerless to determine its course or speed. I feel just this way; dead in the water. No longer do I have the luxury of a job that would dictate my activities for half of the week. Sure; idea of not having to work is always the stuff that day dreams are made of. But when one's activities are so limited, it can be discouraging. Most days - most moments of the day, I am fine - I read, do my exercises, I talk with friends and do my household chores, etc.; the mundane, day to day activities. Then a moment will come that I am reminded: I am simply waiting - biding time until that beeper goes off and we can move on to the next phase. At those moments I feel just the slightest bit of insanity trying to burst forth from my soul, and for a split second I want to pull at my hair like a madwoman and cry out, "I can't stand it!!" Whereas at another time in my life I would cherish the time off to take my dog for a long walk in the forest or a swim in the river, or I would go for a bike ride, host friends for dinner, or even go to the mall; at this time - for now, those things just sound like a lifetime ago. My idea of "activity" for now is a trip to the grocery store, the library, picking up dog poop in the backyard - usually one or the other, and never all three in one day. Much more than that and I no doubt have a two hour nap coming that afternoon. Even a nap is welcome, to help pass the time.

Ron and I have been invited to a couple of parties by friends recently. I've chosen not to go. Not because I don't love a good party - I LOVE parties! But I realize that I have reached a point in my illness where people, naturally, are concerned. I am grateful for this concern, and it touches me that friends and acquaintances even care to ask. I don't mind the inquiries, and I don't mind talking about what is going on in this process. I love getting together with my friends and talking about everything - my life and theirs. But I have found myself at a point in my illness, that when I go to a party or gathering of some sort, it's no fun anymore. It turns out to be twenty or thirty people all asking me, one after another; "how are you doing/feeling?" And it is agonizing! I mean really - explaining the current situation once or twice in an evening is fine. But when person after person after person shows genuine concern and interest in how you're doing, you start to feel like a spectacle and an invalid. I think to myself "Is this what I have become? Is this all I am - this illness?" The answer terrifies. I have thought about writing down the current synopsis and tacking it to the back of my shirt, or passing out flyers to everyone as they come in the door "To be read prior to approaching Rebecca." This way, people have been apprised of the situation and we can talk about something else, for godsake! Everybody wins! But that may be considered rude, or at the least presumptuous. For now, few people can think of anything else to talk about with me, and I get interrupted half-way through my story when someone else enters the conversation and asks, again with genuine concern and interest, "how are you doing?" And so on, and so on. I understand that for each person who is asking only once, and for whom I am simply one person at the get-together, they may not see it from this perspective. Sure, I give a brief synopsis and then in short order try to turn the subject to something about the other person, or to some other mutual subject of interest...until the next person joins the conversation, and here we go again. From where I stand, the party never gets off the ground - it becomes like an echo in a deep cave: "howareyou??howareyou?? howareyou??howareyou??" And invariably I leave this wonderful party, having spoken of little other than my illness all evening. And so, for now, party invitations will be declined by me. You may see Ron out there, though! Ha.

I SO look forward to the day when we are able to step back from this, far enough to observe from a distance and say, "Oh my God - look at what we went through." And I can't wait for the day when I can go to a party and talk about everything but this - when acquaintances can look at me and see something other than a big sign that says "Waiting for a Transplant" written across my forehead. It'll happen, I know. I must be patient. I just hope when that time comes and I finally go to parties again, that I have the insight to give the person at the party who is going through a difficult time a break and an opportunity to chat about something other than their situation. Believe it or not; it can get really boring talking about yourself!

Lara Croft; Tomb Raider

2009-02-20T20:46:00.000-08:00

Oh, my God....I guess I'm a little slow on the uptake. Today I needed to run some errands and so was getting ready to go out. Grabbed my purse, my jacket, some bags for the grocery store, my keys, sunglasses (it was a gorgeous, sunny day) and headed out the door. I loaded everything into my car, got in and started up the engine. I stopped to rest because I was out of breath, letting the engine warm up a bit - huff....gasp. And then I realized, I was out of breath because I didn't have on the oxygen! Hullo!!! I had forgotten the oxygen in the house. I have had this disease for eleven years now, and have used oxygen for about four - more and more this past year. And still, I have difficulty reconciling the two people within me: the active, capable, snappy person; and this sedentary, debilitated, sloth-like creature that increasingly tries to take over. Of course, there are more characters in here....but that is another blog entirely. I went back inside the house and got my stupid O2 backpack, and carried on with my errands. I still occasionally find myself in some degree of denial about this illness, such as when I try to do things without the backpack, or when I just forget. Unfortunately the nature of the beast is that I am unable to forget for long if I'm doing something other than watching Oprah. I'll be in the middle of a task, such as shopping or doing something in the garden, and my tank will run out. I try to go on about my business, thinking I can do it without supplemental O2. Then the huffing and puffing starts. It's like the batteries on the Ever-Ready bunny have finally worn out...Suddenly, I just sloowwwww dowwwwwnnnn. Smack down! The fibrosis wins. I can't tell you how much I hate that.

I read an article online recently which discussed the idea that home invasions are on the rise due to the economy taking a nose dive. I have to admit that the scariest thing about this lung disease is that, as I have gotten worse, I just feel more and more physically vulnerable. Like, right now, I couldn't run for my life if my life depended on it! I find myself taking safety measures that, while a great idea anyway, I wouldn't necessarily have taken a year or two or four years ago. Women always feel vulnerable on some level anyway. I've always noted that we live, mentally, in a different world than men do on a day to day basis where our safety is concerned. Women learn from an early age not to go out alone at night; to avoid unlit parking lots - to carry our keys splayed out between our fingers on the way to the car. "Go for the eyes! Kick 'em in the nuts," we are taught in high school gym class on self-defense day. Men simply don't live with that instinctive, continual low-level fear and caution for danger, throughout their lives. Of course, that's not to say that I'm walking around the house with our Sig Sauer 9mm stuck down my pants, like Dirty Harry; waiting for the bad guy to kick in the door. Haha. No: It's more like just feeling puny - small. I have the realization that to a predator, I look like the "weakest link." To know - really know - the difference between having once felt like a strong woman who could absolutely kick some butt if I needed to; and then realizing that, for the time being anyway, my "fight or flight" would last about ten seconds, is sobering. So I've stepped up the measures I take to maintain peace of mind that I will be safe. The car door gets locked as soon as I'm in. I keep the bolt on the door locked at home. The Charley bar is down on the sliding door. And I always take heed when Chiba alerts to a noise; I know she'll save my life if she ever gets the opportunity. It helps alot that I have been working out; my muscles are strong - even if my lungs don't deliver the o2 I would need to put up any sustained resistance. As I said earlier; I have many characters within. And so I have decided that this week when I work out, my inner "Lara Croft: Tomb Raider" will be the character looking back at me from the mirror. And Lara Croft ain't no victim.

In the Garden

2009-02-15T17:45:00.000-08:00

It has been two and a half months since I quit working. I don't know where the time has gone, but I can tell you that suddenly, the novelty has worn off. The last few days, I find myself wondering, what now? I sleep well at night and wake up feeling refreshed. But as the day wears on, I am discovering that I'm bored. I want to DO, when I have been relegated to mostly watch. I want to participate, but I must be content (for now) with mostly standing on the sidelines. I would love to walk five blocks to the mall from the great parking spot we've found on a Portland street; to enjoy passing the shop windows and restaurant scenes - but then I would need to bring an extra oxygen tank (they don't last long at this point.) So we continue looking for a spot closer to our destination.

Once upon a time, I was that person who couldn't wait for the next season to be upon us: "Christmas will be here soon; I can't wait to get out all the decorations!" or "It's almost Spring; time to start planning the garden and preparing the beds for planting!" Each new season was looked upon with eagerness and anticipation. These days, it seems that life has just been going too fast for me. I realized the other day that, deep down inside, I wish the next season would stay ever in the future, until I am ready to call on it. In November, my mindset was "Ugh - it's almost Christmas - I can't believe I have to get out all the decorations." Now, I find myself thinking, "There is so much to do in the garden. How am I going to keep up?" My energy levels are such that I can do a few chores or run several errands before I end up, spent, on my bed for a two-hour nap. I do love my naps; I used to say naps are a true sign you are leading a rich life. Now they are more a survival tactic.

Yesterday was one of the first sunny, beautiful days in a long time here in Vancouver. Well, it was the first one that I wasn't napping through, anyway. This winter has been long, dark and cold, and I'm pretty sure that the leather on my couch is no longer "full grain," but something a little thinner; based on the number of hours I've had my ass planted on it. But yesterday the temperature climbed to almost 60 degrees. Rebecca had an energy burst! I found myself in the garden, sizing up the chores to be conquered before the temps really start climbing and the growth starts. My crocuses are peeking through the dirt, and the daffodils are already four inches tall - it won't be long. Lots of cleanup to do. I put on the oxygen backpack, cranked it up to five and pulled out the rake and some pruning shears. That's when the trouble started....

Now that I am officially on The List, I have to be accessible at all times - we could get The Call at any moment, saying it's time for surgery. Not only do I have to carry my phone with me everywhere, but also a beeper; so that I don't miss The Call! So here's Rebecca; nasal cannula in the nose; my oxygen backpack is on my back, I've got the beeper hanging out of one pocket, cell phone in another, and my thick garden gloves on my hands. It occurred to me that the only things missing were the tambourines between my knees and a kazoo. I decide to rake out the sloped perennial bed at the end of the garden - the area that most urgently calls to me. Hey - I was feeling energetic! It didn't occur to me to choose a flatter area that would be easier to conquer; to save this large, sloped and rocky area for a time when Ron or Mom could help. Here I go, raking, trimming the vinca, pulling a few weeds. I am feeling a little out of breath even with five liters of oxygen - but I'm outdoors! I'm in no hurry, so I can pace myself; stop when I need to. I feel the fresh air in my nose and smell the earth being stirred, and it's wonderful! I had forgotten over this long winter, what joy I feel when I work in the garden. I trimmed some of the decorative grasses that have dried up over the winter so that the new growth will be lush and green. I've pulled the wheelbarrow over to where I can load it with the debris I have collected with the rake. I bend down and oops - my beeper falls out of my pocket...down between some stones and the shed. So I put down the rake and I bend down on all fours reaching down into the crevasse between the stones and shed, about 14 inches into spiderwebs and pine needles and such. As I bend down, my backpack slides over to my side and up my back, one strap falling off my shoulder. I grab the beeper and go to stand up, but my cannula tubing somehow gets caught on a stone, half-pulling off one ear, and bending my nose to the other side of my face as it snags. I have to bend back down a bit to un-snag the tubing, and I wobble on the uneven surface of the slope - almost falling.

I had forgotten, once again, how cumbersome it is to do these chores with the oxygen, the backpack, and a set of lungs that are on the recall-list. But my love of gardening; of participating, is like what they say about child-birth: you forget the pain. Each time I try to do something I have loved in the past, I am reminded yet again that I was once a very physical person, and now I am not. Over time, I have developed tactics to avoid situations that would cause me to have to put out that extra effort - effort that causes me to gasp, exhausted after even just moments. But today, I will NOT be defeated. Today I will get this bed cleaned up, and then be able to sit back and observe my work, basking in the glow of a job well-done. I shove the beeper deep into my pocket, straighten out the cannula in my nose, adjust the straps on the oxygen backpack and tuck a loose strand of hair behind my ear, regaining my composure. I take a few deep breaths and pick up the rake again, determined to win. And I say a prayer that the beeper will go off soon.

It's Official!

2009-02-12T20:11:00.000-08:00

Oh, Boy....I got some catching up to do!! My blogging has fallen by the way side, I'm afraid. However, I will try to get back in the habit of writing, as Ron has told me that he's being besieged by inquiries. "Please update your blog," he pleaded the other day. Ha.

Well, the biggest and best news is; I am officially on the Lung Transplant List!!!

I was notified on Monday the 9th that UNOS (the United Network for Organ Sharing) now has me in its sights. Finally!! The University of Washington Medical Center Transplant team will notify me when they have a donor match. The Nurse Transplant Coordinator, Kathy Weakly, told me that there are 55 patients waiting for lungs with UWMC (they were transplanting one patient that day!), and that I am about at the top 1/3 of the list. It's all calculated based on disease type and patient health-status, and it does not neccessarily go in order, because the donor lungs that become available may or may not be a good match for the persons at the top of the list . She estimated that I would be getting The Call in about 3-6 months, but gave the caveat that it can happen at any time. So now we wait! When Ron, Mom and I attended the Lung Transplant Class, it was made clear to us by Kathy that once you get on the transplant list, the phone falls silent. In the period of time leading up to getting listed, there are appointments and calls and tests and lots of coordinating to be done, so you are getting and making calls all the time - which was true! But then once you are actually listed, all we really have to do is wait, with an occasional lab draw or pulmonary function test, to make sure all is still going well.

Mom moved in about three weeks ago now, and the adjustment has been smooth for all of us. Our dog, Chiba, is loving our new room-mate, as she is getting even more petting and loving, and is once again being taken on regular walks to the park. So things are going well! It is nice to have mom here - we have been having Happy hour almost every evening, when she pulls out the wine and a snack! Lovely!

We have developed a checklist of things to do once we get The Call, because no doubt we will all be running around like chickens with our heads cut off! What to do, what to grab, closing down the house, etc. I imagine it's easy to forget even your cell phone when such an important call comes! Hopefully we will get The Call in the middle of the night, when we are all home and it can go smoothly. That may be asking too much! But while I'm hoping, I also hope that the call comes the day AFTER I have done my manicure and pedicure, and have had my hair cut and whatever waxing that gets done has been done! I would MUCH rather go into the operating room well groomed from head to toe, than not having had any of the above done in weeks, looking like the Geico Caveman's wife......Ha! I'll be in the hospital for two to three weeks: a woman can really go downhill in the grooming department in that period of time....I wonder if UWMC has an aesthetician. Ahh, you may be chuckling, but every woman reading this blog entry knows exactly what I'm talking about, and can relate. Eh, ladies??? Am I right?

My sister Ingrid and her husband Karl came to visit over Superbowl weekend. We had such a lovely time with them! I even won $400 for having the right numbers for the final score in the betting squares that Ron organizes every Superbowl!! Yay!! Now that was a surprise, as I rarely win anything!! Not bad for a $20 investment!

And so I resolve to keep my blog better up-to-date, as I understand that people are concerned. "Rebecca; your blog has fallen silent," as one friend has told me. Thank for nudging me, you guys!! It's nice to know that people noticed. I'll be writing.

The Transplant Agility Course

2009-01-17T11:50:00.000-08:00

Our day at UW was a long one. To answer the question: no, I am still not on the transplant list. I KNOW! One has to jump through an insane number of hoops to get on a list they wish they were not even on! I feel like one of those Border Collies who do the agility courses....only my agility course consists of jumping through a million hoops, all of which have loud banners waiving above them, advertising "UWMC Lung Transplant." "Ooh, look, Mommy! Look at that one, jumping so fast! Oops - she tripped on her oxygen tubing...."

Our first appointment was with Angela, the social worker. We discussed things like our plans for transportation (I can't drive for at least six weeks after surgery), housing (generally, families start a frantic search for an apartment when the patient is in the ICU), and who will be my primary caregivers. I am so lucky. I swear; while it goes without saying that I would rather not be dealing with this situation, I have the full realization and appreciation that there is no one I would rather have on my team than Ron and Mom. Ron is a man of amazing strength, humor, love and patience. Mom has chutzpah, the energy of a 20-year old, and the love of a lioness - not to mention 30 years of bedside nursing under her belt. If it weren't for these two, I know that this journey would not be nearly as smooth and seamless as it has been so far, or that I hope it will continue to be. We were given forms to fill out and return. I have to have a Living Will and Medical Power of Attorney completed. Angela finished our appointment by taking a Polaroid photo of me, so that the committee members could remember who they are talking about at the transplant committee meeting on Wed. She, Ron and Mom all laughed at me when I insisted on putting on fresh lipstick before letting her shoot the photo! Hey - lipstick is a very important part of my identity!!

The Dietician was very busy. She didn't have time for small talk, and we got through that appointment lickety-split. Suffice to say I need to increase my protein and calcium intake, and watch my weight after surgery due to the steroids that I will be on. But I will never forgive her for writing down my clothed weight!

The transplant class was quite interesting. We were only one out of about eight patients/caregivers attending, and it was eye opening to see that in fact there ARE others going through this same journey right this very minute. Some had just one caregiver with them, and one had four. The hospital had brought in a rack of oxygen tanks to supply the "guests of honor" and Ron noticed that at least one woman went through two tanks just in the hour and a half class. Clearly, I am not as bad off as I could be. I already knew that...it was good to see it in such reality.

The Transplant Pharmacist went over the list of medications that they use for transplant patients. While the main focus of post-transplant medications is on preventing rejection, the anti-rejection medications themselves cause a variety of side effects, for which recipients must take even more medications. I will probably be on about ten meds in all. Side effects of the anti-rejection medications can include increased cholesterol, varying degrees of diabetes (ranging from none to being insulin dependent), osteoporosis, and impaired kidney function. Oh, and they slipped in a quiet mention about increased hair growth....Isn't that just wonderful? I may turn into the Wolf Woman, and have those ungodly amounts of hair I disdainfully spoke of earlier, afterall. Imagine the head lines in the local paper when I go for my first hike in the forest with my new coat of fur: "Wolf Woman found scaling Multnomah Falls!" Of course, it was also stressed to us that they treat for these conditions preventatively, meaning I will be taking Lipitor right out of the gate; I will be sent home with a glucometer to check my blood sugars, Actonel to prevent/reverse bone loss, calcium and vitamin D and Magnesium supplements. I should have asked if they send us home with a years supply of shaving cream and razors, too! Ha. There will be Aspirin to prevent clots, antivirals to prevent shingles, antibiotics to prevent pneumonias, and even possibly antiarrhythmics - they said about 30-40% of transplant recipients develop A-Fib. They also discussed and estimated the costs of some of these medications....staggering amounts. It was my main mission to get home and find out what my insurance will cover, to see how many bowls of Ramen Noodles and peanut butter and jelly sandwiches are in my and Ron's future.

I am happy to report that my intake of Ramen Noodles and peanut butter may not go up very drastically. I have spent several hours thanking God that I have amazing health insurance benefits. I knew prior to this week that they were very good, but after getting home and doing some research in my benefit booklet, talking to my pharmacist and to my benefits coordinator at work, I am here to tell you that Legacy Health System ROCKS. For anyone out there reading this who is an employee of LHS, or if you hear of one complaining about our benefits package - please send them to me. I have spent a significant period of time being thankful and praying that blessings be bestowed on whoever it is that negotiates our health benefits. All but one of the meds that I will potentially be on after my transplant will be covered. The one that is not will run about $450 a month - and that is not nearly the most expensive medication on the list. But even this one will only be given for the first several months.

We finally finished our appointments right in the middle of rush hour. Seattle's traffic was quite impressive, although since we were able to use the carpool lane it was relatively painless. Another exhausting day. The Transplant Committee will meet this Wednesday, and we were told we should be getting a call on Thursday or so to let us know whether our case has been approved. At that point, they will call my insurance to get final authorization for listing, and only after my insurance gives the go ahead and has agreed that they will pay for the surgery and after-treatment, will I officially be listed. Only one or two more hoops to jump through.

And then, we wait.

Life is Like a Tapas Bar

2009-01-14T21:36:00.000-08:00

Here we are, in Seattle. Tomorrow we will go to our final appointments. We drove up this evening, to get here and be able to relax before getting up early for the long day. We finally arrived after battling Seattle traffic. Checked into our hotel room and decided to go to a Spanish tapas restaurant for dinner. After being in the car for almost three hours straight, we decided to try to walk the three blocks to the restaurant. No point in driving three blocks, right? I took out a new o2 tank, knowing that I'd have to turn it up to max to get up the "hill" on the way to the restaurant. Well, it looks like a hill from where I stand. My mother, who is an avid walker, didn't even notice it until I had to stop to rest from the slight incline. To her, it probably looked like a bump; to me it was something from an episode of "Survivor." ha. We finally got to the intersection two blocks from our hotel, and if we turned left and crossed with the light, we could have gone right away. To go straight, cross the street and then turn left, we had to wait for the crossing light to change. Mom said, "Lets turn here, and we can cross now," with her usual "let's getter done" enthusiasm. I realized again, that she has no idea just how little it takes to get me short of breath. I do understand; it's almost impossible to comprehend if one does not have lung disease. Why in the HELL would I want to cross the street right now, when I can stand on the sidewalk for a few moments and watch all the pretty cars go by?? Has this woman never heard of a leisurely walk? In my world, that includes rest stops at cross-walks, thankyouverymuch! As we continued on I found myself, for a quick moment, fantasizing in an especially sick way that I would pass out from the effort of climbing that hill...that'll teach them to make me walk three blocks for my dinner! But no luck....I survived.

We made it to the restaurant. It was a lovely little place, called Bilbao. Oh - I highly recommend it!! Lovely lighting, and decor, with lots of red drapes and brightly colored paintings, soft music. I had never been to a tapas bar....what a lovely suprise. We ordered a variety of dishes. Some we liked and most we liked a LOT! And one we decided none of us really cared for; we wouldn't order again. That's kindof how life is, isn't it? Most of our experiences are good, or okay. It is peppered with excellent times that we want to experience over and over again. And unfortunately, some that we really would rather do without. But if it weren't for the bad times or even the mediocre experiences, would we truly take in the good with such appreciation and zest? Would we savor the good times if it weren't for the rough spots? I think not.

A Major Inconvenience

2009-01-11T18:49:00.000-08:00

This temporary retirement is a good thing. I highly recommend it. I know, I know...no one reading this would willingly put themselves in my shoes. But I'm tellin' ya, it's really not so bad. Oh, yeah, there's a little bit of crap I would rather not deal with....like, oh, I dunno....needing a lung transplant. But you gotta look on the bright side. My life rocks!

I was watching the Golden Globes this evening. Actually, it was just the Red Carpet portion; where all the pretty people walk down the red carpet and give short, superficial interviews about their jewelry, their dresses, their latest movies. I LOVE these shows: the Oscars, the Grammy's, etc. It is so fun to see the pretty people, all happy - maybe with a good buzz going from a couple of cocktails and such. So all these stars come and give their little one-minute interview with Ryan Seacrest...and then Christina Applegate came up to be interviewed. You remember: she was the one who played the blonde sister on Married w/ Children years ago. Christina is young, and just really beautiful. Last year she was diagnosed with breast cancer and chose to have a double mastectomy. Anyway, so Ryan Seacrest is interviewing her and asking how she's holding up, and I was really moved when she responded, "you just gotta have joy in your life." And it is sooo true! Joy isn't something one has as a result of all the good fortune in their life. Each of us is dealing with something horrifying; whether it is abuse, or weight, or drugs, or ill-health, or ungodly amounts of hair. I wouldn't trade my lung disease for any of those (especially the hair....) No one is getting out of here unscathed. The difference is whether, at our core, we can find joy in spite of the difficulties and challenges we face. Joy isn't a goal that can be achieved. It is a muscle that must be exercised: Joy is a state of mind. Despite this amazingly huge hurdle that I am having to jump - have had to jump for the past ten years - I am really, really happy with my life.

So anyway; this evening I made this yummy pasta dish for dinner; shrimp in a pesto-cream sauce with linguine, and a caesar salad (my favorite.) Yeah - not low fat. We sat down to eat and Ron just loved it. "Mmmm" he moaned. "Honey, excellent."At one point, he started humming a tune - his mouth full of linguine, a little dab of pesto on his mustache. I was glowing and felt all warm and happy inside, knowing I hit that spot! I always know when Ron is really enjoying his food when he starts humming a tune at the table. He'll do a little jig in his chair, fork and pasta spoon in hand, head bobbing from side to side...then he just digs in again for another bite. SO effin' cute. It makes me happy to know someone is enjoying something I made; because I love to cook. Really: I lovvve to cook. No recipe is too complex - if it looks like something I'd like, I'll try it. Of course, that's NOT to say that everything I cook turns out good. ha. But that's another blog altogether.....It's only been in the last few years that I have realized I probably should have had, like, twelve children; so I could be justified in cooking all day long. Damn! I didn't even think of that! Well, maybe next time around...

So, we got to talking after Ron was finished doing his little happy dance; and he deadpans: "I'm going to starve while you're gone." I realized; I am really going to be gone for a long while when I get this transplant! I have to leave my home! I have to move - without my life-partner, to another town. By the time I am back in my own home after this surgery, it will have been a minimum of almost three months - and quite possibly more - since I have slept in my own bed. Or cooked in MY kitchen, with my favorite tools. Or hugged, even touched, my dog! Or walked a lap in my garden to see how things are growing. Our lifestyle: our whole routine is going to be completely changed for an undetermined period of time. Ron will have to fend for himself for a while: I cringe to think of what he will be eating...probably sausage and cereal for three months....ack!! These are the thoughts that are more disturbing than the thoughts of IVs and tubes and drains.

But then...my thoughts go to what our life will be like when the surgery is behind us. And it is always "us:" Ron, Mom and me. We will always be dealing with my lungs; I will trade the problems I have now for new issues that we will deal with. And deal with them, we will. This challenge, while it has dragged on and on (and on...) for over ten years, is coming to a head. That old saying, "It's going to get worse before it gets better," is really true. But oh, how much better it is going to get!! I will hike. I will run (if I want to!) I will sing Karaoke (once.) I will garden. I will get on top!! ;-) The possibilities are endless! Yes - Joy is a state of mind. I have it now. But soon, I will be unstoppable.

Girlfriend Therapy

2009-01-09T07:12:00.000-08:00

Yesterday was the most lovely day! It was raining much of the day; that in itself (to me) is beautiful. Ron and I lived in Reno for the better part of a decade, where they get seven inches of precipitation a year - whether they need it or not. I think the state flower is sage brush. In stark contrast; there are parts of Washington that have gotten that much rain in the past ten days - literally. I remember when we were in Reno; on the rare occasion that it was raining at night I would lie in bed and actually hold my breath for a moment, straining to hear the rain fall. It would rain for ten minutes and then stop. Most of our precipitation was in the form of snow. In Washington we get almost a daily dose of "liquid sunshine." We've been here three and a half years and I still never get sick of the rain. I lay in bed many nights, and as I drift off to sleep I can hear the rain falling; trees blowing in the wind. Even the sound of an occasional car rolling down the street, its tires splashing on the shiny, wet pavement fading in the distance, is hypnotic to me. These days, I don't even have to hold my breath to listen for fear it will end before I get my fill: we always know the rain will come again soon. Forests here are absolutely amazing: trees with moss two inches deep on their trunks and limbs; with ferns growing out of the moss. I love it.

But I digress. Yesterday was such a great day because most of it was time spent with my girlfriends. I have an amazing group of women in my life, both near and far. We support and learn from each other. It's nothing less than therapeutic when we share our secrets, howl with laughter and even give each other a good dose of tough love when necessary. I had coffee at Starbucks with Jill, and we talked about our families, our frustrations; our lives. A bit later, I moseyed on up the road to Brandi's house, where she, Tiffany and I were "Ladies who Lunch." We enjoyed a simple meal with Brandi's little girls and Tiffany's youngest daughter. The little girls were able to sit still for about fifteen minutes to eat their lunch before their energy levels were just bursting and they were off and running - screaming with squeals of laughter and delight throughout the house. Brandi's two-year old boy managed to climb on everything and make an amazing mess...at one point the conversation between the three of us rambled on, uninterrupted and as natural as anything, while Brandi crawled around on the floor under the kitchen table trying to contain just some of "Hurricane Caleb." When we realized what she was doing, we shared a good giggle. As a woman who has no children it was a unique vantage point! Later in the evening, Norah called, and we caught up for about an hour on the phone - a great, long, overdue talk. This was followed by an hour with MaryPat on the phone. It was a special day! My heart was full, knowing how incredibly rich my life is.

Girlfriends are so important. Of all the hours I spent with the ladies yesterday, there may have been a total of an hour spent talking about my illness, or this impending surgery and it's implications. We talked mostly about anything and everything else: our lives, politics, aging (and the strange, wild hairs that come along with it,) diets, careers, the uncertainties of our futures; just whatever happened to come up. Life moves so fast, and we are all so busy in this day and age, that the most valuable gifts we have to offer are our time, our ears; our hearts. It's the time we intentionally carve out time for our friends, despite all of our obligations and time constraints - that fills our bucket to the brim. My friends let me forget - even if it's just for that little while - that my life has become in large part a world of tests and appointments and preparation. They make me remember the lighter side of what life is about and that the world - my world, does not revolve around this illness; it does not own me. And for me, right now, that is the best therapy in the world.

Details, details

2009-01-07T07:16:00.000-08:00

On Monday Ron, Mom and I went to UW to see Dr. Mulligan, the transplant surgeon. I didn't think I was nervous, but I guess I was. We were in with him for about 45 minutes. I understood most of what he said and it was all pretty much what we hoped to hear. But sitting here now, trying to paraphrase it, I realize much went in one ear and out the other. I know that I mentally "checked out" a couple of times during the time he was talking. I remember sitting there thinking to myself, "We are really here. We are actually talking about me getting a lung transplant.....this is insane!!!" Then I snapped out of it and checked back in, only to realize I had missed a small chunk of his discussion. That's why you bring your posse' with you! Even though we've been anticipating this appointment and have known for a long time that a lung transplant was in my future, it still just rushes in on me sometimes; a feeling of shock, of feeling overwhelmed with the gravity and seriousness of the situation. How the HELL did I get here? I was perfectly healthy!!!! .....ten years ago. Sometimes - though not often anymore - I still mourn the loss of my perfect health. Now it is only with nostalgia that I look back upon a time when I could go an entire day without even considering my health or ability to perform a chosen task. It was a lifetime ago.

I did ask Dr. Mulligan how many lung transplants he has performed and he said it was about 700 total lungs transplanted. He's been doing this since 1995 and is not only performing the transplants, but is procuring most of the donor-lungs as well. I really got the impression he is a control freak, which is just fine with me (I can totally relate!) He said that he likes to perform the procurements himself because he can do them and the transplants very quickly, which vastly influences the viability of the tissue. When he does have a resident in training (a Fellow, they are called) he doesn't let them go out alone on procurements without him, until they have performed at least 20 procurements and transplants with him, and he is absolutely sure they know what they are doing and can do so in a timely manner.

I also asked Dr. Mulligan how long it takes to do a double lung transplant, and I was completely shocked at his answer. But now that I think about it, it makes total sense! He said it takes him about three and 1/2 hours to do a double! Ron, Mom and I were like, "WHAT?? Three and a half hours??" We always understood that this was an amazingly long surgery. Even coming from the surgical world (Ron is a Surgical Tech, I have been both an OR nurse and a Recovery Room nurse, and my mom was a Med/Surg nurse for like a million years.) we never put together the details of what goes into a transplant surgery. He said his part - from when he makes his first incision to when he closes the incision, only takes about 3 1/2 hours. But all of the other details that have to be performed are what take the bulk of the time from when a patient says goodbye to family and gets wheeled into the OR, to when family and patient are reunited. Crap...we knew that! I guess this is an absolutely perfect example of being too close; too emotionally attached to the situation to see it clearly. There is the placement of the multiple IV lines and monitoring devices, the induction of anesthesia, positioning, prepping, draping, closing, dressing placement, getting the pt back into the bed and brought to the ICU, the ICU report from surgery/anesthesia, the settling into ICU by the RN, and a million other things in between all that. All of this combined is what takes the 10 to 16 hours all of us have always heard about. WOW! What a revelation! What an education all of us are getting! But now thinking on it, it does make total sense. How on Earth could an organ survive outside the body for that period of time? This is why we have to be there within three hours of getting The Call. Duh......

Dr. Mulligan said that he would like to see me get two lungs (he is ultimately the one who decides, he said) and that really he does push for two lungs on many patients. I asked what would be the deciding factor, and he told us that not all donors have two transplantable lungs for various reasons; some only have one that is suitable for transplant - I'm thinking most probably trauma, or suspect lesions, previous lung surgeries, etc. Of course, there are lots of details I am leaving out because I either have forgotten or not completely understood - this is a complex thing, much of which is waaaaayyy above the ability of my little hypoxic brain cells to comprehend! ha. He said that they would probably pass up single lungs that were a match for me, and instead wait until a donor match that had two viable lungs could be found...unless either there was one lung that was from a very athletic donor that would just be a "super-lung", or; if my condition starts to deteriorate and the team doesn't feel they should wait to transplant. In these circumstances I may get one lung. This, of course, is leaving out all the complexities of who is higher on the list, etc. I have chosen not to bother my little head about that stuff which beyond my analytical capabilities, not to mention completely out of my control. So... the goal is that I will receive a double-lung transplant, but it is possible that I would get only one. Stay tuned!

Next up is our appointment on the 15th, when we have the Transplant Class - that will last about 1 1/2 hours (of course, my understanding of time estimates are now completely suspect! ha) and will also include a talk by a transplant pharmacist. Also on that day we will meet with a Dietician and the Social Worker. Dr Mulligan said that after the surgery, my care-givers and I will spend about five days with a pharmacist, going over and over about all of the different medications, to ensure we have a thorough understanding of what they are for, when to take them, side effects, etc.

NOTE: I know that many of you who read my blog probably have questions about this situation, or transplants in general. I have, necessarily, done a lot of research; but as evidenced above, am still learning alot too as we move along on this journey. If you like, feel free to write questions in the Comments section and I will be happy to answer them to the best of my ability. My family and I are so appreciative of all the support and well-wishes we have all received, and really love to read the comments that you write. This blog is meant as much to keep everyone informed and act as a cathartic outlet for me, as it is a tool for us to hear your thoughts and insight. Thanks so much.

Swedish-American Gladiator!

2009-01-03T14:47:00.000-08:00

This morning as I was doing my workout, it occurred to me that lately as I exercise I have a little scenario going on in my head. I find myself envisioning that I'm a gladiator, getting ready for the battle of my life. That's really what it is! My limits are about to be tested, and my body is going to be put through the ringer, if not the shredder!

Last year, when my 40th birthday was approaching, I took stock of myself. My reality was that I was heavier, more out of shape and weaker than ever. My lungs were bad and I was carrying around an extra 30 pounds. Imagine carrying around a 30 pound backpack, and how much extra work that represents! It was clear to me that this could go on indefinitely if I didn't do something about it. We can literally become as big as we choose if we don't summon the discipline to stop the madness! And it is so easy to get demoralized with lung disease; every movement becomes an effort greater than the task merits - every time I change clothes, take a shower, carry a load of laundry, it makes me short of breath to the point that I have to stop to rest. Slowly, over time you learn to avoid the tasks, let someone else do them if they are willing. It's not laziness (well - not always...smile); it's conserving your energy! But here I was; bigger than I found acceptable, and having a harder time than ever. I decided that enough was enough. Ron was excited that I had this new fire in my belly! He put mirrored closet doors on our linen closet in the basement, and built a small rack for me to place a few sets of light dumb bells and some exercise bands so I could work out in that small, out of the way corner. I called up Lincare and had them deliver two big oxygen tanks, so I could crank it up and exercise without passing out! I bought a swiss ball and a six-pound ball. And I had no idea where to even begin! I hired a personal trainer. It was the best $500 I've ever spent. Eight sessions with this lady and I was on a totally new track in my life. I lost 20 pounds and had more energy and felt strong. I worked out 3 days a week for about eight months. But I have slowly fallen off the wagon; I'm not naturally a fitness freak. I've kept the weight off but have softened up a bit...too much so to face this challenge comfortably. Now it's time to hit the gym once more, so I can have a running start when UW calls. These past two weeks I've been working out again, knowing I've got a big battle ahead of me. I am facing a surgery that will be anywhere from ten to 16 hours. When I wake up I'll have an incision that goes beneath my breasts from side to side...one big "W" - my new scar! I'll have an arterial line, a Swan-Ganz in my neck, and four chest tubes. There will be a tube in every oriface, and even new orifaces made where before there were none! My hospital stay will be anywhere from two to three weeks; if everything goes well.

I go down to my little "gym," put on the nasal canula and crank the tank up to 5 or 6 liters per minute. I do a little stretching, take some deep breaths. As I warm up I smile in the mirror: I am my own cheering section. Eight pound dumb bells and I'm counting repetitions...again I look in the mirror; but as the reps go on, the weight gets heavier on my muscles; my smile disappears. In it's place is a look of determination. "Be strong!" "Get fit." "You are going to win this battle!" "You can totally do this!!" I know that each exercise, each repetition, will make it that much easier to get out of bed, to take those first deep breaths - take that first walk without oxygen! This will be a battle! And it will be long and difficult. But I look forward to it, and I will win it! And I will even have the scar to prove it. Now that will be a cool scar.

New Year's Resolutions

2009-01-02T11:33:00.000-08:00

I love the hope and optimism that a New Year brings with it. Each year I try to make several resolutions that would be fun to succeed at. Some year I succeed, and others I do not. Of course there is always the "live healthier/exercise/lose weight" ones that are standard for many. I try not to list those as my resolutions...they just aren't any fun. Those are things that I know I should be doing year-round, anyway and usually fail at to some degree - so why waste a perfectly good resolution?

One year I resolved to learn how to juggle. It was 1995. I was in Las Vegas as a travel nurse at the time, and found some "professional" juggling balls in a magic store at that ridiculously luxurious mall in Caesar's Palace, right where that huge fountain is (was?) which comes to life every 15 minutes or so. Somehow, I thought that I would have better success learning how to juggle with colorful, $30 balls than, say, three oranges or three golf balls - or even three potatoes. Maybe it was the "instruction booklet" that sold me, which measured 3 inches X 3 inches and had two pages... half in Japanese. Guess that's the shopper in me. I still don't know how to juggle, and I think I took those balls to the Goodwill store several years ago.

Another year I resolved to entertain more. Ron and I were newly married, and we were living in this lovely, old bungalow in Reno, Nevada. It had hardwood floors and beautiful wood work and built-in cabinets in the dining room and living room. We started having people over for dinners or cocktails and hors d'oeuvres. Now that resolution was successful....I like to have dinner guests to this day, and generally don't get nervous about it anymore, because we've done it so many times. Could be too, that I don't get nervous about it anymore because I'm in my 40's. ha. Another year, I resolved to learn how to spell "hors d'oeuvres" after having to look it up 15 times. I don't have to look it up anymore! And doesn't "hors d'oeuvres" sound so much more appealing than "appetizers?" The word "Appetizer" brings visions of being in some chain restaurant; like Bennigans or TGI Fridays, ordering twice baked potatoes with chili over them....never a good thing!

So I usually do like to make at least one New Year's Resolution, and often spend a month or more figuring it, or them, out so that they are measurable, realistic, and mostly fun: something I actually want to accomplish or improve upon for myself. This year I've been distracted from deciding on a good resolution - go figure. Of course there has been the obvious: "Get a new set of lungs." But that is completely out of my control, so therefore it's not something I can resolve to do. I'm going to have to exercise and live a healthy life-style - it's not an option. The new lungs that I receive will serve me best only if I challenge them. So that would again be a waste of a perfectly good resolution.

A good friend gave Ron and I a book at our going-away party when we left Reno to move to Vancouver. It's titled, "60 Hikes Within 60 Miles: Portland." It cross-references the hikes into categories like, Hikes Good for Children; Flat Hikes; Steep Hikes; Urban Hikes; Rural Hikes; Hikes Good for Wildlife Watching; Hikes Less Than 1 Mile/1 to 3 Miles/3 to 6 miles...well, you get the picture. I was so thrilled by the book! I felt excited that I would be able to learn the area this way. We were moving from Reno, which is at 4,500 feet elevation, to Vancouver, WA which is something like 150 feet elevation, in large part because at the time, whenever I visited somewhere that was lower in altitude my exercise capacity was much improved. The high elevation of Reno was just a killer for me, and my days of long walks in the Tahoe National Forest had been short-lived. We knew that moving to lower altitude would buy me some time in the way of staying functional with lung disease that we knew would continue to progressively worsen. I've only walked three of the hikes in that book.

On December 3rd, we met with Dr. Edelman for the first time. Accompanying him was a young physician who was in her fellowship to become a transplant pulmonologist. After Dr. Edelman had given his oration about UW's transplant program, and then talked about my case in particular, he asked if Ron, Mom or I had questions. Well, I had about 50 questions written down for the poor man. I could see that any hopes he had had for a lunch break were dashed when I opened my notebook. smiles. After some general talk about our situation, I asked him if it was true that there is a marked difference in exercise capacity between getting one or two lungs transplanted. He responded yes - that patients do relatively well with just one lung transplanted, but in general people who get two lungs have an easier time with an active lifestyle. Good news so far. I asked him could I expect to receive one lung or two? He said due to the nature and extent of my disease, coupled with my young age (ahem....) that I would be in need of a double lung transplant. YAY!! This was great news!! Then I said to Dr Edelman "Well, I guess that we've come to the Show and Tell portion of this appointment, Dr. Edelman. If you would indulge me for thirty seconds, I'd like to show you something." I pulled out my "60 Hikes Within 60 Miles: Portland," held it up for Dr Edelman like a bad impression of Vanna White and said, "Dr. Edelman: This is going to be my rehab program." I then handed Dr. E. four photos of myself from my life prior to lung disease. One was of me white-water rafting in Austria - hamming it up for the camera with a wet-suit and helmet on: another of me snow-shoeing in Tahoe National Forest with Ron, our faces pink from the cold and smiling; another of me with a backpack, hiking up an incline in Germany - my face tired, hair dampened with sweat; and a fourth, me with skis on, on some snowy slopes somewhere in California. I said to Dr. Edelman, "This is who I was, ten years ago. And this is who I am really, really hoping to be again, after I get my lung transplant." Dr Edelman smiled and took the photos from me. He and his Fellow looked at each photo and passed them to the other, asking where each was taken. After a moment Dr. Edelman handed me back the photos, smiled again and said, "I think we can make that happen for you, Rebecca." My heart flew!!

So having told this story and having had time to think about a few things I would like to do, I have decided on my New Year's Resolutions, 2009. I resolve to experience the majority of the hikes in that book! I resolve to run on the beach with my dog Chiba within three months of my surgery. And I resolve to sing Karaoke with my friend Annie...Not because I want to sing Karaoke: I don't! I tricked her once into singing when we were at a Karaoke bar with friends, telling her I would after she did. She sang, and then I refused. But I didn't tell her why: I was too embarrassed to tell her I could not, because I didn't have the lung capacity to sing without losing my breath! This time I will not have that excuse, and I'll make good on my word. Hey, better late than never! Get your earplugs out, Annie.

Henry VIII I Am...

2008-12-31T08:05:00.000-08:00

Well, that's it! All the testing and hoops they told me to jump through, I have jumped. I have finished the last of the required pre-transplant testing. Next up is a meeting with the transplant surgeon on Jan 5th. On the 15th we will go back up to Seattle to attend the official Lung Transplant Class that all transplant patients and their care-takers are required to attend. We also will meet with the social worker who will help us with finding housing, make sure the insurance is on-board and squared away, etc. And the Dietician...not so sure what she/he will have to say. Probably something about calcium for my bones (the immunosuppressive drugs tend to cause osteoporosis), staying away from high-sodium foods, watching my weight. Prednisone - one of the drugs I'll be taking to prevent rejection postop, tends to make you eat like a pig and gain weight. I'll be on very high doses initially and will be tapered down as time goes on. It also, even if you don't gain weight from it, makes you have this amazingly gigantic "moonface." They call it that because that is exactly what people who take large doses of prednisone look like. So when you're in the mall and you see these people who are of generally normal size, but who have those amazingly large chipmunk cheeks? You can bet they are on prednisone and dealing with some major illness - it's probably not that they are just genetically blessed to look like a 5th grader for the rest of their lives.

I've been on varying doses of Prednisone for ten years now. Thankfully, most of the time I've been on very small doses. At times when I've had a flare or a respiratory infection, they increase the dose in hopes of minimizing any advance of the scar-tissue formation in my lungs. If you've never been on high-dose prednisone - and I hope you have not - let me tell you: it's a trip. It turns one into the reincarnation of King Henry VIII - or whichever of those english kings was the gluttonous pig. I'd be eating one meal, and planning the next in my mind, while simultaneously scouting the plates of the other people around the table to see what they're not going to finish! Chomp, slurp, burp: "You gonna eat that?" It makes you feel entitled to large quantities of food...like every day is Thanksgiving. Two hands are simply not enough to get it all in! Prednisone in high doses also makes one's energy level skyrocket! You become this manic person - up at all hours of the night, wide awake. I imagine it's like someone who's on crystal meth. Wide-eyed and hyper-alert, you are way ahead of any incoming stimuli. I could hear a leaf falling off my ficus tree. If I had those gold wrist-cuffs of Wonder Woman, I too, on high-dose prednisone, could fend off speeding bullets coming at me! Bring it on! If someone would invent a silent vacuum cleaner, it could be marketed exclusively to people who take high-dose prednisone, and it would fly off the shelves. I can't tell you how many nights when I was on high doses that I would get up at 2am and clean the house or straighten cabinets; or I'd be sitting there in my living room, rearranging the furniture in my mind. It was only because I knew if I woke up my husband he would about kill me, that I had the discipline NOT to move the living room into the dining room, and the dining room into the living room...just to see how it looked. That's when I have written emails to everyone I have ever known...at 3am. Be prepared for some epic blog entries here in the first several weeks of my postop period, when I am on the highest doses. How much data can the internet store, anyways?

There will be lots of medications, and lots of side effects, for the rest of my life after transplant. Actually I'm not very worried about that part - I've been on many of the same meds for years, trying to stave off this scarring, this fibrosis of my lungs. After surgery there will be higher doses of some - including the prednisone; and even a few new drugs, all to be taken several times a day. And I will happily take them... probably right before I lace up my hiking boots or strap on my bike helmet and take my chubby cheeks, my new lungs, and the spirit of my donor for a nice, long adventure with my husband and my dog.

Note: This photo was taken about three years ago, at the top of the falls, Multnomah Falls. This was the last time I went for a hike. It is just over a mile to the top, and it took me an hour and 45 minutes, stopping to catch my breath every few feet. You can see that I have my little oxygen backpack on, but have taken the cannula out of my nose for the photos. I was determined, and it was miserable - not sure if it was more miserable for me or for Ron, who could have easily hiked up and down five times in that same period of time! He, as is his M.O., was ever so patient and encouraging. But the view was beautiful, and you can see that I was happy and exhilarated for having made it! That same trail goes on for about seven more miles, I am told, and I understand it is just a beautiful hike. It's my goal to get to the end of that trail six months after my transplant! You can hold me to it.

Barishnikov and the Bunny Rabbit

2008-12-30T01:31:00.000-08:00

Today I got a lot of things crossed off my list of things to do. Actually, the list has gotten really short. That's kinda scary. It means that I'm that much closer to getting on the list. Suddenly I'm not sure that capitalizing that is so cute. It doesn't feel cute right now. Maybe tomorrow.

Last week it was the Right Heart Cath. Today I had my PPD skin test; a blood draw to get updated lab results; and a six-minute walk test, without oxygen. I've done six minute walk tests before, but the information they were gathering this time was different. Before, I was getting the 6-min walk tests to determine how much o2 I need to be wearing with exertion. This time was without oxygen, because they wanted to see how low my sats would go on just room air, in order to place me at the appropriate place "in the line" on the transplant list. My sats went down to 76% walking on room air. Guess I'll start walking around with an amboo bag, too. Thank God they don't hang on your ears.... (If you've read previous blogs, you get it.)

I had someone who didn't know I had lung disease say "But you're not blue." Well, I've got news for us all....you don't turn blue at 76%, either. Scary thought, but I was actually still standing, eyes open and talking, at 76%. Gasping, yes - but talking: even if it was in two word sentences.

Hypoxia gets you out of all sorts of trouble. If I get lost, I can just blame it on hypoxia. I can't really prove it, since I probably won't be blue: you'll just have to trust me. If I "forget" to do the dishes, I can just blame it on hypoxia. If the Christmas tree stays up until July......you get the picture.

But it can also be blamed for at least one uncomfortable, but memorable, situation that I can think of...One time several years ago, I was visiting my sister and brother-in-law in San Francisco with Miss Elsa. We were having a grand old time one evening. We were listening to old jazz music while Ingrid made her famous filet of sole in the kitchen. Karl had gotten both mom and I up and danced with us once or twice, twirling and dipping the old way that is not done anymore. The conversation between us all was going nicely, but the kitchen in that apartment was a little shut-off from the living and dining room, and little sister here - a couple of glasses of cheap white wine under my belt - didn't feel that Ingrid was getting enough attention. Most people would just go in the kitchen and help. But this was a old San Francisco apartment; there was only room for one chef. So I decided to entertain Ingy while she slaved over dishes of egg and flour and pots and pans, while Karl and Mom danced in the living room. I started walking back and forth past the doorway of the kitchen, doing a different little skit with each pass. First, I was Groucho Marx, cigar in hand. Then I walked past the doorway again; this time in the opposite direction. I pretended I was walking down a flight of steps...getting shorter and shorter with each step. Another pass and I was blowing on an imaginary horn, marching in a band. Then I was Emily Littella from Saturday Night Live (shit if that doesn't date me....). Ingrid being the big sister that she is, let me know that I was little more than an annoyance and a distraction from her culinary masterpiece. I decided that I just wasn't being funny enough! Of course, all this improv is hard work! I was getting short of breath (this was all before I got started on oxygen, when my lungs weren't quite as bad.) A couple deep breaths and I was at it again. Another trip past the kitchen doorway: I was a hunched over little old lady walking feebly and mumbling; her umbrella my cane. Next pass; Jack Lalane, doing jumping jacks. I got a giggle out of her! Gasp, pant. Then I was a rabbit, hopping down the hallway; a quick glance her way with my teeth bared, the lip-smacking of a rodent and my little rabbit-hands up to my chest....I was kinda losing it with all this hopping and jumping jacks. We should have known.....But I heard a snort coming from Ingrid's general direction....it was working! A sly glance into the kitchen and I saw she was laughing! I was breaking her dowwwwwwnnnnn!!! Suddenly, I was Barishnikov in Swan Lake, flying by the doorway! Leap! Whooosh! Ingrid had stopped what she was doing, turning red with laughter. For my finale (for I too was laughing hard and getting quite breathless: ahh, the lengths to which I will go to entertain my family) I paid homage to the great streakers of the 60's and tore off my top as I ran by, breasts bouncing, one final Barishnikov leap...so high and graceful! My mom, Karl and Ingrid and I laughed and laughed, for we had all enjoyed that cheap white wine equally. Of course, I got into a coughing fit and as we calmed down, Becca here needed to go lie down to wait for dinner to be served. 15 minutes in the bedroom in solitude should have done it, but I just couldn't catch my breath, couldn't get comfortable. Mom came to check on me, and she saw I was having trouble. She tried a few nursing tricks (she is now retired after 30+ years of nursing), but to no avail. Mom was worried, and quite frankly so was I. There was a hospital nearby, so we decided to go to the ER; I needed a breathing treatment. I knew from experience that it wouldn't take long in the ER, so Ingrid put dinner on hold. We took a cab, got taken care of at the ER and, miraculously, were back home eating a late dinner within less than two hours. My oxygenation had indeed been low when we arrived at the Emergency room and they took me back quickly to a room and took the necessary steps. We were able to enjoy Ingrid's dinner after all.

For the rest of the weekend, I was under continuous watch from the gestapo!! I was not to do any fancy doorway skits, any Barishnikov moves! They kept me calm and tame. And to this day, I still have not lived down the evening that I got hypoxic in San Francisco.

It's trouble, I tell ya - this lung disease. I better get on The List so I can have that fun in my life again! This sedate life is cramping my style!

Lilliputians and Loud People

2008-12-28T16:09:00.001-08:00

I spent the better half of the morning cleaning and straightening the cabinets and drawers of my bathroom to clear some space. Facing a transplant brings all kinds of chaos. Not only in the life of the person who is in need of the transplant; that goes without saying. But everyone around that person has to make adjustments in their lives, or the way they do things, to some degree or other.

I just started an extended leave of absence from my job at the beginning of Dec. But for several months prior to my leaving, my shortness of breath was getting so bad that my co-workers had to take on part of what I should have been able to do. One day, I had a patient that was recovered well enough to go to the next level of care, and was wheeling her down the hall in a gurney from PACU to her room so she could get ready to go home. Our gurneys are the new, fancy ones which are super easy to push (compared to previous generations' gurneys.) We made small talk as I wheeled her along the corridor. In her room, I strapped her in to the automated BP cuff and pulse oximetry, we said our goodbyes and I walked back to PACU. As I was leaving, I realized I was very short of breath - more so than usual - and my heart was pounding - it felt like I had been running. I got back to PACU and immediately put the pulse oximetry probe on my finger (this basically measures your oxygenation level, for those who don't know) - my oxygen sat (short for saturation) measured 82%. Ewww. Anything above about 93% is fine, and considered "within normal limits." In the PACU, also known as the recovery room, we usually put oxygen on a patient if they are unable to maintain their sats above 90%. At about 87% we raise an eyebrow and tell the patient to take a deep breath or two. At 85% we quit charting (or typing the email we're working on, or the sudoku puzzle we're trying to conquer) and just watch the patient - while simultaneously holding our own breath, unblinking and waiting to see if they will self-stimulate. When a pt hits 79% we start wondering what the HELL did the anesthesiologist gave him just prior to arrival to PACU!? At 75% we're getting an ambu bag out "just in case." (Studies have shown that if you wave an ambu bag over a patient's bed, they often will start breathing...;-) If you're sitting down reading this right now, your sat is probably about 97% or more. Yeah....that was a wake up call for me. It's poor form for the nurse to be getting more medical care than the patients, and I was scared. I have been desaturating with exertion for several years, but this small amount of exertion - and more so how I felt with it, was different; worse. The next day I went to my manager's office and told him what had happened. After talking, we decided that we would have to ask my co-workers to take on the task of transporting all of my patients for me. My co-workers were extremely gracious and supportive, and not a single person gave me a bit of guff for needing this favor. PACU nursing is one of the least physically strenuous nursing jobs there are (we're more brains than brawn...ha), so there really was no other position for me to move into. Over the next several months it became clearer that the progression of this disease was picking up speed. In late October, my Pulmonologist and I decided that it was time to start the paperwork for a medical leave of absence; to officially start the wheels of the transplant machine working.

But I digress. I spent this morning cleaning and straightening the drawers and cabinets of my bathroom because at the end of January.............................. my Mother is moving in with us. I am forty-one years old, and Miss Elsa is going to be our roommate. Not for a visit. Not for a sleepover. For an undetermined period of time..... :-o ( camera zooms in for a close-up: deer-in-the-headlights-look on face, scary violin music) She's moving in because after I've had the lung transplant and get released from the hospital (about two or three weeks after the surgery), I will have to live in Seattle for anywhere from two to six months, and I have to have a care giver live with me. But we won't know when I will get The Call; it could be hours or months. When I do get The Call, we'll have three hours to get to the hospital. So obviously she won't have time to pack her bongos and move right then. Our solution is that she will move in with Ron and I just prior to my getting on the list (around the 1st of Feb) and then she will be able to get an apartment up there while I'm in the hospital still, and we'll live together up there until I'm released to come home. Ron will maintain his job and our home here, coming up to be with me on his days off, while mom returns to Vancouver to get some down time and give us some privacy.

I sure hope I get that call quickly! ha. Now, you gotta know that my mother is in great health; she has great spunk and strength, and possesses an amazingly generous spirit. She's a very soft spoken, gentle and small person...she's like one size up from a Lilliputian. smiles. One should also know that Miss Elsa has lived alone, with the exception of a cat or two, for over 20 years. Elsa is such a quiet person that when she has company, her cat thinks there's an invasion going on and hides under the bed. Most people don't believe she has a cat, but I have seen photographic evidence. Miss Elsa is about to have an awakening of sorts. You see; my husband Ron is six foot, four inches tall and about 230 pounds and has a mouth that can take on a piece of pizza in three bites. This is a guy who loves sports, and he loves to talk to and swear at his teams when they are playing on the flat screen. He eats more chocolate in a week than you do in a month. Ron comes from a family with two brothers and a sister, and lots of relatives who have been hard of hearing. This is not a quiet man. When he's on the phone, the neighbors have to shut their windows. He's big and loud and takes up a lot of room! In order to hold my own, I have, on occasion (haha) been known to holler as loudly as he does in order to get my point across. We don't consider it yelling....we consider it communicating clearly. She calls us "The Loud Family." Of course, as I like to say; it's all a matter of perspective. They've known each other for ten years now, and they get along quite well - thank God. But she's always been able to say, "Can you take me home now?" This is going to be an experience, to say the least. It's going to be something like "Tinkerbell moves in with Young Frankenstein."

I'm trying to remember if the Valium Rx our vet gave Chiba for her Fourth of July anxiety had any refills.......8-}

Rock on!

2008-12-26T07:15:00.000-08:00

On Tuesday, Ron and I went to the hospital so I could get my Right Heart Cath. I had the procedure done at the hospital we both work at, in the same Surgical Services Department that we both work in. I still include myself as a member of Surgical Services, because; #1 - my heart is still there, and #2 - in the words of the Gov'ner of California: "I'll be bahk." This is only a "temporary retirement."

I've heard many health care workers over the years say they wouldn't get their procedures or surgeries done at the place they work. They don't want people they know working on them, or seein' their "privates," or I guess reading their charts/medical histories; or maybe knowing which antidepressants (or anti-psychotic meds) they take! ha. But in my mind it's the exact opposite. I know the standard of care that my co-workers meet. This is a group of people who have nothing but the best intentions and levels of experience. There was no question that I would be safe and cared for; that, should anything go wrong, this group of professionals would take care of it. It is hard I admit, but sometimes you just gotta relinquish control. I'm trying to get used to that idea, 'cause pretty soon I won't have a choice. I imagine myself in that scene we've all seen: The big rock concert where the music is loud and the lights are flashing and the lead singer is on the stage just totally rockin' out... and then he turns and intentionally falls backward, spread eagle onto the crazed audience, and they actually catch him! His body is just so relaxed...so trusting is he that the fans will hold him up - and they do! He allows himself to be transported by many hands, high in the air, only to be returned safely to the stage after a period...and he never stops singing the whole time! And the concert just continues! Yeah!!! Whoo-hoo!! Of course, since it's my scenario, I get to be that rock star. ha!

Everyone at the hospital made me feel special. I don't know how many - a lot, though - of our friends and co-workers just took that moment to stop by my room and say hello; just to let us know they knew we were there. A few asked questions about what's happening with this whole, crazy transplant thing. I know that this entire group of people - every nurse and tech and CHT on that second floor - takes pride in their work. But when it's one of our own needing our services....well then we pull out all the stops. Who wouldn't want that when they need healthcare? To me it's a no-brainer: it's like not wanting the best table at a good restaurant! Hullooo!?

Of course, when that Versed went drifting into my vein, the feeling of peace and security only got better...much better! Ha. Fabulous! Relinquish control?? Hell - do anything you want! smiles. The sterile field was draped over my chest and head, and I could hear Dr Harper and the Cath/Angio team talking - this and that intervention alternating with humorous banter and stories of their holiday goings-on. The blue drape hovering over my face was suddenly the most fascinating, peaceful shade of blue, and my eyes wandered along the folds and creases in it like it was a roadmap to....somewhere. I felt the prick of the needle in my neck, and the burn of the anesthetic he used to numb the site on my neck where they were working, but I didn't care a bit. Versed washes away all of the worry, even if just for a few minutes.

And then it was over! Bandage in place, I moved back over onto the gurney and was wheeled back into my room. Dr. Harper said all my heart and lung pressures and numbers looked good! No surprises...thank God. Ron was right there, waiting in my room when I came back. One more test to cross off the list of things to do! One step closer to getting on The List. It is getting closer...and I vacillate between really feeling 95% brave and excited and ready... and 5% scared; totally unprepared and just wanting to wake up and have this all be a bad dream.

Merry Christmas!!

2008-12-24T07:52:00.000-08:00

Merry Christmas!! As I write this, our Arctic Blast 2008 continues. Another 3-4 inches of snow fell overnight, and it is falling heavily even now. This evening Ron, Mom and I will have our quiet Christmas celebration. My mother - Miss Elsa as we affectionately call her, is a first-generation American; her parents came from Sweden and arrived at Ellis Island in the 1930's. So our traditional Christmas meal is a swedish smorgasbord, which essentially means we have small amounts of many different foods, but it always includes Swedish Meatballs and some kind of cured fish; either smoked salmon or pickled herring. We'll snack as we open a few small gifts and listen to music around the tree. Later we'll share some white russian cocktails over a game of Trivial Pursuit or Scrabble, and laugh and give Thanks.

I mentioned in a previous blog-entry that I have had to change career paths several times to accomodate this progressive illness. Each time, I have entered a new position with a sort of anonymity, if you will - only a handful of people knew I was dealing with a major health issue. And that's how I have preferred it. I have resisted being seen primarily as someone with lung disease. I would prefer anything over that identity! Assertive, smart, funny, cranky, outspoken, nervy - even difficult-at-times...all much preferred! Call me anything else first - you can include the fact that I have lung disease later; but please not the first thing that comes out of one's mouth. It's not "who I am." HOWEVER....now I am crying "Uncle!" Okay - I admit it. The warm cloak of denial that has kept my lung disease from being so widely known (I like to think....) now has been shed. It has gotten to the point that I don't care - I cannot hide it anymore. I've never felt it was a secret; it's just been important that others see ME first, rather than the lung disease. Chronic illness will consume you if you allow it to. I hope to get the transplant before "Rebecca the Character" gets chewed up and swallowed by "Rebecca the Patient."

A few people who are close in heart and close to God have called or written and let me know it's not unreasonable to be angry with God during this very difficult time. My mother has always been a Christian. She has told me on different occasions over the years how she has cursed God, yelled at him over this! Her anger that he should burden me - us - with this disease has overwhelmed her at times. But throughout this ordeal; and it has been an ordeal - I've really never felt angry with God that this should happen to me. I have been blessed with an amazingly fortunate life! So few people in this world receive the gifts and experiences that I have! I have traveled much of the world; served in the military; and I have an incredibly satisfying career which has afforded me opportunities to help people and witness fascinating things everyday, and for a paycheck! I have an amazingly loving husband with a generous heart whom I adore; a family that melts my heart; and a dog who seems convinced that the sun and the moon rise and fall by me. My mother is my best friend. My home is a haven where I am safe and loved. There is heat and food and clothing and a beautiful garden - all at my fingertips. I have friends who share with me their secrets, their triumphs and their struggles; and who listen to mine - who laugh and cry with me. Oh, how I love my life! I am wealthy beyond dollars. It is and has been SOOO much fun! I have wanted for nothing. To think that I should have all of this, and still be exempt from any form of suffering would be Sin in itself. My God never promised a perfect life, free of struggle. Of course I would rather not have this disease. Of course there have been tears and fear and times that I could not get myself out of bed for being so depressed. We don't understand why things happen in our lives; why we suffer or struggle, or even triumph, in the ways we do. But I have no doubt that somewhere down the road it will all become clear. Sure, this lung disease sucks - it really does. I would much rather be out there, hiking in the snow, skiing down a mountain - getting short of breath for a good reason! And I have faith those things will all come to me again... later. We each have our cross to bear, and this is mine. I would not trade my lung disease for another person's addiction or abusive relationship, or financial struggles, or mental illness, or cancer. This is my struggle. I know it, and I will own it and work with it until God decides otherwise. I know he's got my back.

Merry Christmas. God bless you and yours.

Chiba

2008-12-22T16:59:00.001-08:00

It's been snowing here in Vancouver for the better part of a week now. The worst winter storm in 40 years! Outside is a winter wonderland. Ron and I have been lucky; it's been a week of few obligations that we had to leave the house for. We have surfed, read, cooked, watched movies, even exercised (yes; I workout with oxygen, at home.) Not a bad life! Today I took Chiba, our nine yr old border collie, for a quick walk to the park just a block and half down the street with my mother. Chiba was soo thrilled to be out in the fresh air and snow! I put on sweater, jacket, gloves, a fleece head-band...and the little backpack that holds my oxygen tank. Thank God it wasn't sunny, or I'd have to wear sunglasses, too! My ears get very busy sometimes. Between earrings (the only piece of jewelery I usually wear), the oxygen tubing that goes over the ears, and sunglasses, my ears need hands! A couple of months ago, Ron surprised me with a gift: Jaw Bone Blue-Tooth ear pieces for our cell phones. He was happy to have found such a great device. "Look honey: It goes over the ear! It's hands-free!" No kidding.... :-|

I better get this transplant soon, or my ears will be down to my nipples from all the weight they carry.

Mom and I head down the pretty, snow-covered street. When there are six inches of snow on the ground you have to march a bit - pick up your legs and feet. It takes even a person with a healthy set of lungs a bit more effort than normal. The cold, fresh air felt so good and crisp in my nose. We were laughing at how happy Chiba was to sniff every bush and post. March, march, march; the snow crunching beneath our feet. "It's almost Christmas, can you believe?" March, march, huff. "Look at the pretty decorations people have put up." March, huff, march. "That soup will taste so good when we get home!" March, cough, huff..."Chiba, heel girl!" Gasp, cough, moan. Mom is so sweet; she sees that my speech and breathing are becoming labored, so she goes into a mini-monologue about the squirrels and stray cats she feeds each morning, to save my having to talk for a moment. We continue on to the park; I am determined to take my dog for a walk! This simple pleasure has become a difficult chore even on clear days in recent months, so I have my mom turn up the rate of delivery of the oxygen in my tank; six liters per minute - the max. Chiba is so thrilled to be out. I throw her ball with the $17 super-duper ball thrower that no dog should be without. The ball sinks in the snow and disappears; she can't see it. Please find the ball Chiba... She can't, so I stubbornly walk what seems like a mile to retrieve the ball, and now I am spent. Gasp, huff, gasp. We rest until I catch my breath enough to walk the distance home. March, march, march. Huff... Gasp. Huff. My beloved border collie has gotten a short 15-minute walk. She doesn't know it yet, but she will be happy for this transplant, too.

***NOTE: Several of you have written to say you would like to post comments, but are unable to. I would love to hear from you - your support and kind words for Ron and I at this time in our lives is so appreciated. I've adjusted the settings to make it easier for you to leave comments. At the bottom of each post, you will see "comments." Just click on "comments" and a page will up in which you can post your message, as well as read others'. Below that you will see "Choose an Identity" If you click "Name/URL," you can sign your name. Then click "Publish your Comment," and your comment will be posted. Thanks! Rebecca.

The handicapped costume

2008-12-21T08:18:00.000-08:00

This morning my chest is a vacuum of anxiety. It's hard to take a deep, cleansing breath to calm oneself, when the deep breathing part is out of the question. Are these final tests going to reveal something that will delay my getting on The List? Is that person who loved to hike and bike and MOVE, still in here? What if I've just become a slouch, at my core - if this person who moves in very short bursts, if at all, is who I have become? My mind is spry...but my stingy, scarred-up lungs refuse to dole out oxygen to the cells which beg to be nourished so they can take me places! I have so many days of activity to make up to my husband. Ron has been unfailingly patient, loving and understanding throughout this ordeal. When we met I was active, healthy. We traveled, we moved, we planned activities; went for walks, ice skated, went sledding, skiing. These past several years our interaction has been increasingly static; on the couch, at the dinner table, in bed. Thank God we love to talk, and to listen to each other talk.

The surgery itself doesn't worry me. I've always been of the mindset that scars are fascinating. They tell your story like a tattoo never will! I've always felt a bit of envy and admiration for those who were attacked by a mountain lion and survived...what a story those scars tell!! I like to think that I will be friends with the scar that will come with this surgery. The pain, the rehab - that's nothing - it will be temporary. But what am I going to make of this gift? Will I honor my donor sufficiently? How can I do him or her justice for their sacrifice?

The day I met with Dr. Edelman at UW, my biggest fear was that he would turn us around at the door, saying I am not sick enough to need a transplant. I for one have always had this preconceived notion of what a person who needed a LifeSavingTransplant looked like. Someone who needs a transplant, in my mind, was lying flat in a hospital bed - skin sallow, lips cracked, voice weak, oxygen tubing in their nose and IV dripping. I guess I need to back off on the television....haha. I don't fit that scenario, and so even I have had a very difficult time believing that I really do need a transplant! I had visions of Edelman pointing to the Exit, not even making eye contact and telling me "Come back when you're really sick." I think several of us thought that was a possibility! I have said several times that I feel like I'm living a dual life. There's the person I am when sitting still or moving within a tight area (such as when I am moving about a patient's bed at work.) That Rebecca is loud, boisterous, smiling, healthy, Laughing, joking, smart. When still, I can almost believe that I am completely healthy - not a thing wrong with me. And then I get the slap in the face: I'll make the bed and then have to lay down on it after, to catch my breath. I walk to the car and have a coughing fit for the next five minutes. Suddenly I am handicapped, debilitated...and feeling so physically vulnerable - the Other Rebecca. Oxygen is a magical thing!

They say nurses make the worst patients. What a cliche'! Ahh, but so true! The oxygen has been prescribed to me for several years. When we lived in Reno, the only oxygen that my insurance (hex on them!) would pay for was the big E-tanks...the ones that you have to roll around in a cart behind you, like we used in the hospital. I was in my 30's! Young, proud and vain, I begged for something smaller, less conspicuous. They refused. It was my 80-year old lady costume, and I refused to wear it. So, when I walked or moved around much, my sats would drop. Same thing here in Vancouver, for the past several years. Several months ago I went to the grocery store, wearing my little oxygen backpack for the first time. The cashier said "I've never seen you with oxygen before...is this new?" and I said "No, but there are these little things called Compliance, Denial and Vanity." These are such powerful forces in our lives - well, in my life. I have very, VERY strongly resisted being identified as someone who is handicapped. If I don't wear oxygen, people see the person I want them to see - young-ish (smiles), healthy - spunky! The irony is that this is when I am most handicapped - couldn't run for my life if you held a gun to my head. When I do wear the oxygen, this is when I can do more, move faster - breathe easily. But this is also much of what people see. I'll get the sympathetic tilt of the head..."aww." Waiters become saccharin-sweet; I catch strangers staring at me and then quickly look away when they see they have been "caught." Blecckkkk!! Not always - but too much! So, it has taken me a long, long time to come to terms with wearing the oxygen. And sometimes I still cannot get myself to put on my "handicapped costume!" I hate it!

But if I have learned one thing from having to wear the oxygen in public - my "costume," it is that people who have a visible handicap are lonely! Rarely have I felt so alone as when I am walking around in the grocery store with the nasal cannula in my nose and am ignored, even avoided, by the majority of people. I did it, too - before this. Having gained this perspective, today I try to make an effort to make eye contact, smile and give a regular "Hello" or nod of the head to Grandma in the motor-chair or the kid with the braces, or the person with the oxygen. You would be surprised at how few people do.

The "T" word

2008-12-20T10:11:00.000-08:00

Yesterday I received a packet in the mail from University of Washington Medical Center. I have appointments! I have already met with the transplant pulmonologist, Dr Edelman. We went up to see him about two weeks ago. Nice man; I will have no problem trusting him. Now I have appointments to see the transplant surgeon, Dr. Mulligan, in about a week.... and then on the 15th we will meet with the social worker, the dietitian and will all (Ron, Mom and I) attend the Transplant Education Session. There are few hoops left to jump through. They expect I will be on "The List" (I think it merits capital letters, don't you?) by February 1st. Tuesday (Dec 23rd), I will get a Right Heart Catheterization procedure, which will determine the status and health of my heart and pulmonary pressures, so that there are no surprises when time comes for surgery. This train is really starting to leave the station! I am so psyched!

One other thing to be done the morning I meet with Dr. Mulligan the surgeon: a chest X-ray "for sizing," they said. Ewww. That is a bit daunting. It really lays it out, doesn't it? That'll make you wrap your head around the sitchy-ation real quick-like. Hmm. Okay... I won't focus on that...not quite there yet. Of course it makes sense, though. But still....ewww.

It's been about nine years since the "T" word was first used in reference to my - our - future. For years I railed against the idea. "Uh-uh. No way in Hell! Not me! I'm ain't gettin' no transplant!" I swore! The very idea disgusted me. I was working at a Level II Trauma Center at the time; so I knew - had seen(!) - how things were done. One day several years ago, I was at my pulmonologist's office and he left my file on the counter while he left the room to answer a phone call. I saw that he had written a note that said something to the effect of, "presently rejects the idea of transplantation in her future...she probably will reconsider as the disease progresses." In other words he was saying I simply wasn't sick enough to know any better. Hmmph! How dare he think he knew better as to what I would want in my future! I was indignant. My, my, my....interesting how our opinions change over time, and with a different perspective. Humble pie.....yummy. It's very good for you.

In the beginning.....

2008-12-19T10:00:00.000-08:00

So here we are....hmm. What to write; what to write. I guess this blog should begin with a brief (hahaha) synopsis of how this journey began. Twelve years ago, I fell madly in love at high speed with Ron when we were both living in Chicago. We got a little tipsy one evening over dinner after a frustrating day at work. Somehow by the end of the meal we had signed a pact on the restaurant receipt that said, "Europe summer 2007." Signed it, mind you; not just a verbal agreement, but a written contract. Fast forward and six months later we were at 40,000 feet on our way to Frankfurt, having quit our jobs, cashed out our 401Ks (okay, not such a smart thing to do, but thank God now that we did) and put everything we owned in storage. The plan was to stay six months or until our $ ran out, whichever came first. We called it our "Stopping to Smell the Roses Tour." God - it was fabulous! The memories are priceless: we bicycled hundreds of miles, caught trains on a whim and climbed mountains with our backpacks loaded for bear. We camped for days, climbed waterfalls and picnicked in the alps. We ate pasta in Italy, pastries in France and chocolate in Belgium. We drank Ouzo in Greece, beer in Germany and "coffee" in Amsterdam (smiles.) We were crazy in-love, extremely fit and oh, so happy. Came back to the states three months later (okay - our 401ks were kinda small....ha) and I took a travel job in Reno, NV. It was the perfect place! We could ski in the winter and hike in the summer! The STSTR tour would continue! Fast forward about three months and I started noticing that I was achy a lot of the time, and that I just couldn't hike the distance or with the intensity that I had in the past. I chalked it up to getting out of shape, as I was now working a lot and unable to do it as much. I hiked harder, determined to shake it off. I developed a dry cough. One day I was at work on my travel job - as a dialysis nurse, and it hit me like a freight train! I didn't know at the time what an epiphany was.....but I was having one. My joints ached fiercely...I was having shortness of breath...I was exhausted all of the time...My hands and knees were unmistakably swollen. THIS is the moment, the very moment, that my life turned in a new direction; forever. I ran to the phone at that very instant and dialed the hospital operator; I lied: "This is Rebecca in Dialysis. I am making a long-distance call for Doctor so-and-so." I gave her my mother's phone number. Hearing Mom's voice was all it took for the dam to break. Immediately I was sobbing. "Mama? Mom? Mom...There is something bad wrong...I think I am really sick." "Rebecca: you must go to the doctor. Go now." I was 30 years old.

The achiness and shortness of breath continued and increased. It was quickly obvious to the family practice physician I had found in the yellow pages that this was beyond his realm. He referred me urgently to a Rheumatologist and Pulmonologist. Lots of tests, blood draws, and money - I had no health insurance at the time...I hadn't needed any! I was healthy! Blah, blah, blah...doctor, doctor, doctor..."You have Polymyositis with Interstitial Lung Disease." "It's progressive." Steroids, bedrest, immunosuppressants, chemotherapy, pulmonary function tests, blood work, tears, worry. A year passed. Three years. Five years. The polymyositis went into remission, and the worst part - the pain - ceased. The pain I would not wish on anyone. It was relentless and it broke me on many occasions. I remember at one point I called my sister Ingrid and said I could not bear it anymore: I wanted to die. She listened. She gave me three days to be depressed, and then I would have to get out of bed. I needed that direction. But this pain brought with it a gift: I learned. Having experienced what real pain is has made me a better nurse. It was a lesson in empathy I would not have otherwise have truly learned and, looking back, it was a blessing. The shortness of breath and the disability that comes with it was just beginning, and that portion of my story is the reason for this blog.

The good news about a chronic illness is that, eventually, it does become somehow integrated into your life. You learn to live with it. You adjust your expectations, your hobbies, your interests. It, in some sick way, becomes a part (albeit some days a larger part than others) of who you are. But I like to think that I have kept it a relatively small part of who I am - that the majority of my person has continued to grow, be able to hear other peoples' stories; instead of only "me, me, me." It has affected every single part of my life; of Ron's life. I liken it to a circus trainer and a lion; the trainer with the chair held in front of him; the whip held back and snapping loudly "thwack!" The roaring, ferocious lion salivating, held at bay..."back!!! Back you beast!!" It will eat you alive, leaving only bones and gristle, if you don't control it. Once in a while it gets a nibble, takes a chunk of who you are. Ouch.

You learn what you are made of. It gives you "character." Ha. Yeah - that's it....character! Kind of like the "character" that a batch of chocolate chip cookies gain when you forget to set the timer and leave them in the oven until smoke sets off your smoke detector. I have had to change jobs and the course of my career three times to accommodate this lung disease. I've been forced to abandon things that I loved doing and change where I live (we moved to Vancouver, Washington to escape the exceedingly arid climate and 4,500 altitude of Reno.) But an acquaintance once said "Different seasons in life." That really struck me. And it made me realize that, while I am no longer the Dialysis nurse I was when this all started, and I am no longer the hiker or adventurer that I once fancied myself as being, I still possess those facets. But in addition to those, I have also become other things that I may never have become, had it not been for these health challenges! Today I am a person who loves to cook! I am a gardener! I am a blogger! I have, in the process, become an Operating Room Nurse, a Telephone Triage Nurse (shit if that wasn't a dark period in my career....ugh.) and then I became a PACU nurse: the best part of it all. Now I have temporarily retired, as we go on to this next phase of the journey.

And so in a nutshell, there is the first half of the story, and how I got here. Of course there are many details and stories and people left out. Maybe some of those will come up as this blog continues. I have but just begun.....