The Lung Transplant Diary
When I last wrote, I was on the lung transplant list, but I can’t really say that I was waiting for lungs. I wasn’t expecting to be called for many months. Before I dive into the last four chaotic months of my life, I must disclose that my most recent post (December 2014) left me in limbo on the transplant list. However, there was a communication error on my part and it turns out I wasn’t officially listed until January 7, 2015. I only note this because it means that I was listed for transplant a miraculously meager 30-some days before my time came. It’s one thing to know logically that “the call” is coming, but it’s another state of being to actually live with the constant notion that any minute could ignite my new life. I don’t really know where or how to begin a recap of the last four months, however. I want to share my story in all its ups and downs in the hope that I might reach someone and inspire them to be a donor. Without my donor, I might not have been here this year- certainly not a few years from now.
New Lungs Test-Drive
I should start by expressing my ultimate gratitude for the chance to have a new life with new lungs. My donor is my angel. I’m so extremely fortunate. I have as yet been unable to find the words to convey my gratitude to my donor’s family. I’m also incredibly blessed by a phenomenal support system, at the forefront of which is my family. They have been with me through everything and I’d be lost without them. My entire community has also shown me such love and kindness- through their faith and encouragement, I always knew someone was thinking of me and praying. Although this quest has tested me in ways I thought I couldn’t handle, I am STILL HERE. I’m still standing. I’m perpetually working on myself and my health. There is nothing static about my life; things can happen in the blink of an eye.
“The call” happened mid-afternoon, in quite a casual way on February 10, 2015. My mom had just hung up the phone after scheduling my next clinic visit with the Madison pulmonary care team. I therefore almost didn’t answer my phone when my transplant coordinator Kelly called me a few moments later and nonchalantly inquired as to whether I’d “want to have a lung transplant” that day. She could have been reading the want-ads out loud, for as calm as she was. My body began to shake violently as I tried to digest this weighted question. My mom saw my eyes develop into wide saucers as Kelly imparted to me a last few pieces of advice and direction before I jumped into action. Luckily my mom was home early from work for the day, and my dad was working in the woods (a self-employed logger) no more than 20 minutes from home. After ransacking the house, trying to plan and pack for something so momentous, the three of us were on the road in about 45 minutes. I also called my sister Sarah (Dr. Carlson, actually) and she immediately booked a flight to meet us in Madison.
From this point on, timelines get blurred and some events seem fuzzy because of the nature of the whole ordeal. Medications, emotions, and situations changed how I perceived things, and changed my reality of things so one can imagine how difficult it was and still is to sort out everything that’s occurred.
The transplant itself went extremely well, I’m told. I was taken into surgery late on February 11th and it was finished about 8 hours later on the 12th. In a quick recap of events, I began this first transplant hospital stay by spending about 2½ weeks post-transplant on the transplant unit until I grew well enough to transfer to the rehabilitation unit, where I worked on strength, endurance, and stretching exercises for an additional week. After multiple hurdles and triumphs, I was discharged on March 13th to stay at a Madison hotel.
This is obviously the abridged version of the odyssey that has become my story. In more detail, the surgeons and those whom assisted with the transplant were pleased with the results, and within the first 6 hours after the surgery, they decided that they could take me off the ventilator (the breathing machine) and let me breathe on my own. As is turns out, my body was just not quite strong enough to breathe for itself. I was struggling too much and needed more oxygen than I could obtain on my own, so the next day the surgical team had to sedate and reintubate me (put the ventilator’s breathing tube back into my windpipe). After a few days on the ventilator, the team tried it again- they took out the tube and I felt great. I even got up and walked to the nurses’ station with assistance. As I’ve learned, though, anything worth having is not usually easily attained- I started to backslide again and I had to be re-reintubated (that’s the third time, if you count the initial intubation). After my body could rest some more, I was finally able to be taken off the ventilator for the final time. I don’t really recall much of that time after the transplant, but I do remember that simply walking a few yards was incredibly difficult. My weakened body had to push itselfself mentally and physically with the encouragement of my family; if I wouldn’t/couldn’t get up and keep moving about, I might end up back on the ventilator. I can’t credit my determination alone, though, because with every step of the way, there were people cheering me on and assuring me that my progress was nothing less than stellar.
At some point among the multiple intubations, my vocal cords were damaged. I found I was unable to speak above a whisper, and therefore swallowing was also precarious. Because my vocal folds wouldn’t close all the way, any small food particles or liquids could go down my wind pipe into my new lungs instead of into my esophagus and then stomach as it’s supposed to happen. If anything were to accidentally get into my lungs, it could cause very severe pneumonia to develop, which would be detrimental to such new and fragile organs. Therefore, no eating or drinking. This whole situation was only one of many complications that arose after the transplant surgery. I also developed a deep blood clot in my neck/upper arm region from having an IV placed in my jugular vein. This seemingly small problem posed larger problems further down the road.
Two of the chest tubes that were placed into my lungs were left in to drain all the fluid that collected as I recovered. (I had come out of surgery with 5 chest tubes.) They wouldn’t stop draining even after I left the hospital to stay at a hotel, and the doctors didn’t want to pull them out too soon and have the fluid collect in my lungs. After 50-odd days with these painful, inconvenient tubes, the doctors took a leap of faith and pulled them with the hopes that my lungs would acclimate to the fluid and eventually equalize. I would have no such luck. Approximately a week passed before the fluid was too much for my lungs and caused me to be short of breath and gain an excess of water weight. This caused me to be hospitalized for a second time. I didn’t fully know, even at that point, how much harder this journey would become.
Back into the “Real World”
Being such a fragile patient so recently discharged, my pulmonary team, the surgeons, and my coordinator decided that I shouldn’t leave the Madison area any time soon. On March 13th, I was sent out into the “real” world to live at a hotel. Since I was still unable to eat normal food or drink liquids because of my vocal cord paralysis, I needed to stay in a hotel room with a kitchenette so I could prepare my own food and drink. We were fortunate enough to find a clean comfortable room in a good part of town, where I lived until I had to be re-hospitalized on April 6th. It had only been about a week since the final two chest tubes had been removed, and I began having a great deal of difficulty with fluid retention in my lungs. I was increasingly short of breath, and my lungs had a small amount of air around them. These circumstances were obviously NOT conducive to the immediately spectacular outcomes to which I had aspired.
So on the 6th, I went back to UWH, where my fluid levels were managed until I was back on track to recovery. The doctors also had to tweak some of my medications in order to boost my white blood count, and to control my blood thinners. It’s common to need to switch or re-dose transplant medications, and it’s always a balancing act between how the body reacts and how the meds affect it.
Until April 14th, I stayed in the hospital in order to navigate the bumps in the road that needed to be addressed; afterwards I returned to the hotel in which we’d been living until I was FINALLY deemed safe to return “home” home to Iron River (called such since so many other places have unfortunately become like other homes to our family) on April 17th. This was not to last, much to my dismay; by April 24th I was having difficulty breathing again and my oxygen saturation was dipping rapidly. I rushed to Iron River’s local hospital, and was promptly set up for a helicopter air ambulance ride. When I arrived at the UW Hospital, I was put back on the ventilator in the Trauma & Life Support Center (TLC) for the FOURTH time. Given enough time and some changes in medications, my lungs began to cooperate again, though, so that I was able to be moved to the “normal” part of the hospital where I had stayed in the initial days of my transplant (the B4/5 unit).
We thought I was out of the woods, but we were incredibly mistaken. Apparently, at some point after Mother’s Day, I took a real turn for the worst. I began coughing up blood and needed to be moved BACK to TLC and put on the ventilator for a 5th time (the pattern gets pretty monotonous here). This time, however, my body was laid face-down in a prone position in an attempt to take some of the pressure off of my exhausted lungs. I was kept this way from May 15th through the 17th while my family and doctors prayed that I would make it through another bout of illness.
I recovered eventually, and was moved back to the general care of B4/5 for a few days. After I was released THIS time, I moved into a wonderful place called the “Restoring Hope Transplant House”. Almost like a bed-and-breakfast for those who are involved in the transplant process, the house was a comforting place to regain some normalcy in my new life. It would be much too difficult to describe how incredible this house was/is, so I will simply note that I caught glimpses of the great life to come while living there. When I was allowed to leave Madison again and make a go of it in Iron River (June 16th) for the second time, I really missed those who run the house because they were my family now.
In order to spare some of the tedium of the revolving door narrative of my time in and out of the hospital, I’ll simply note that I’ve only been home to Iron River on three separate occasions since my transplant was completed in February- while I’ve been in the hospital SIX times, if I’ve counted correctly. Each time I’m hospitalized, my doctors edge a little closer to understanding what is going wrong just when I believe I’m improving. However, it seems that before I can fully recuperate (or even partially regain some significant measure of health) I am knocked down again by some unforeseen complication. Such has become the way I live, but only for now. Anyone who is familiar with bilateral lung transplants (especially for those with Cystic Fibrosis) tells me that the first year is hell, but after that things do improve and life is truly miraculous. I cling to that promise every moment that I’m awake.
The Journey Continues…
Things are quite a bit more settled than when I last wrote in August. Circumstances required me to be hospitalized again for a few weeks. I was really uneasy and anxious this time because I had grown too weak to do much of anything. With my huge 30th birthday party quickly approaching, I needed to be recovered enough to first get out of the hospital and situated at home again. I worked hard, but progress was slow to non-existent. Even though I wasn’t truly ready, I got discharged and went home the week before my party. Back in my house, I was severely debilitated and deconditioned. I spent nearly all of my time in a recliner since I was virtually unable to walk or stand up. Still, I was dead-set on enjoying my birthday.
The party was AMAZING and there were over a hundred wonderful people there to help me celebrate both my lung transplant and my 30th birthday. I really felt special just knowing how many people cared. I was wheelchair bound but I was still able to dance around from the chair thanks to some great friends who helped wheel me around the dance floor. I thought that this would be the start of a hospital-free future, at least for a while. I was wrong.
I wound up needing to stay in the hospital for a couple weeks sometime between September and October (by now, I’ve lost track of when/why each hospitalization occurred). If I remember correctly, I was discharged a few weeks before Halloween (my FAVORITE holiday). This was the most recent hospital stay. I’ve only been back to Madison for checkups since then, which is a great leap forward for me! So, that’s my last few months in a nutshell. I’m still working on my strength and endurance and dealing with some fierce lower-back pain, but I’ve come a very long way just since August. And if I may say so, I’m proud of myself.
Sharing this long, hard transplant journey through my writing has been quite a healing mechanism for my soul. I feel the need for my family and friends to be a part of such important milestones in my life and the only logical way I know to do this is by bringing everyone around the proverbial campfire to hear me tell the story. Perhaps this is a way to make the whole experience more real to me because sometimes I feel like this year has been a dream. I need only look at my scars, feel the cool air circulate in my new lungs, or remember my donor and her family, however, in order to remember that all of these blessings have truly come to me. This is REAL life, and it’s getting better every day.