I've been expecting transplant to be around the corner for many years. I've been slightly too “healthy” to be in the window for transplant in the eight years since I was first evaluated (what happened after learning I needed a transplant is a separate story). But I'm digressing. Last winter, I became very ill, and decided to move forward with the process. The transplant center at Duke University requires extensive pulmonary rehabilitation and education before they will agree to add someone to the transplant list. I was surprised by what I learned and the relationships I forged with those going through the process with me.
The only things others who have gone through the transplant process told me were that I would be exercising for nearly half the day in the pulmonary rehabilitation center and that the physical therapists mean business. Some evenings after a day of exercising and lectures, however, I questioned whether life after a transplant would really be that much better because of all of the things they told me could go wrong. But the lectures left me with realistic expectations, something I viewed positively.
The level of detail has been eye-opening. I have gained extensive knowledge about the names, both generic and brand, of all the medications to suppress my immune system I will be on after transplant, their typical dosage, the time they are to be taken, and the mechanism by which they work. They described my anatomy and showed me how the incisions will be made on a dummy skeleton. I learned I may experience back pain after surgery because my arms will be pinned overhead for hours on the operating table. I've practiced swallowing exercises weekly to strengthen neck muscles so I don't aspirate into my new lungs after surgery. I learned to get comfortable with the possibility that I may have severe bowel problems immediately after surgery and could need a diaper. Hopefully that was a joke!
Some pieces of information were more bothersome than others, especially understanding the immediate and long-term side effects of the medications, risk of cancers and kidney and liver failures, and the possibility of organ rejection, which I had already known, in a post-transplant journey.
But being required to exercise for two hours five days a week motivated me and gave me a sense of accomplishment. Biking just one-tenth of a mile further encouraged me. Trying to pedal as fast as the lady next to me challenged me.
The best part of this journey has been forming bonds with the other transplant candidates and their families, rooted in the shared experience of going through it at same time. My parents (who are my caregivers during the transplant process) and I moved to apartments across the street from the pulmonary rehab facility along with most other transplant patients and families. I knew everyone's names after three days. We learned about each other's families and interests outside of our lives at the rehab center. Most people were typically older, but we care about each other just the same. When we learned that someone was listed during our group exercise class, we would all cheer. When someone got their call to transplant, the word would spread by the next day and we would all be thinking about them.
The bonds we developed run deep. We received updates on the progress of members of my rehab group after they underwent transplant. I visited a transplant recipient when she was close to discharge after her transplant, and her smile and happiness gave me so much joy and hope.
So many of my fears of this process have been eased through hearing about a full life on the other side of this journey and watching a re-transplant recovery go smoothly with the help of an amazing transplant team, family support, and individual will power. Forming these friendships through this process has eased my fears and anxieties about my own tremendously. I have seen the real-life examples of the amazingly resilient human body and spirit of those who have gone through it before me.
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