I am so thankful that U of M has given me an opportunity to share my story with so many people, and that they have permitted me to write however much I need to get the story told. They even allow for my long and quirky titles! Such as...
Doctors, Stranger, Lungs, or:
How I Learned to Stop Worrying and Love my Transplant
How I Learned to Stop Worrying and Love my Transplant
By Evin Green
For those of you who vividly remember my previous contribution to this newsletter, this may be all you need to know: We “just did it.” In late August we moved to San Marino, which is paradise. We haven’t looked back since.
Now, for the rest of you, I won’t belabor that analogy any further. Instead I will tell you all about my experience of having a bilateral lung transplant and the recovery which has followed over the past four months.
On the day the call came, Wednesday, August 20, we had planned to use one of our last days of summer vacation to go to Greenfield Village. But my just-turned-six year old son said he’d rather stay home, and since my wife is a teacher, we could be flexible and pick a day later that week or the next to go before school resumed. So, instead of being on a train when we got the call, I was sitting on my couch. The details of the call are now a blur, but since we live so close to the hospital, we had a leisurely two hours before we needed to leave. Even though we already had all the bags packed and plans in place, that time still felt harried, no doubt because of the surge of emotions we were all feeling. Someone I didn’t know and would never meet had died. And this stranger was donating his or her organs, giving this incredible gift to me. The wait was over and it was really happening.
Except maybe it wasn’t. This call wasn’t a guarantee that I would have a lung transplant in the coming hours. The lungs needed to arrive at the hospital and be evaluated on site, so during the entire process, we were all keenly aware of the possibility of a “dry run,” which the doctors had prepared me for during conversations about what to expect once I got the call. The family members who planned to wait at the hospital all live at least two hours away, so they were driving to Ann Arbor as my wife Kayla and I said goodbye to my son and stepped out the door. It was very strange saying goodbye to Henry, who had been hearing for over a year about how “daddy was going to get new lungs.” He had a pretty solid grasp of what that meant, if you ignore the fact that he once declared that Dr. Simon was going to Argentina to get the lungs. However, the true gravity of the situation eluded him. I hugged and kissed him and pushed away any thoughts that it could be the last time I ever did so. No negativity allowed on this journey.
The preparation for the surgery was long and tedious, and the worst part of it was, as my friend who is now three years post-transplant told me it would be, having the catheter placed in my neck. I’ve had plenty of IVs and other lines placed in me during hospital visits to deal with issues stemming from Cystic Fibrosis, but this was new. And unpleasant. But once it was in, the rest was just waiting. So much waiting. I was so relieved when it was finally time to take me back into the operating room, despite the fact that it meant saying more goodbyes to my wife, her sister, and my parents. From this point on, I had the easy job—stay unconscious and alive. They bore the burden of more waiting, more wondering, and more worrying.
In the operating room, they played Dave Matthews Band at my request, and informed me that it was still possible that I would not have a transplant that day. In fact, they might put me under, determine the lungs were not ideal for transplantation, and wake me up with my old lungs. This became my primary fear—that all of this would be for nothing and I’d go back to being at home on six liters of oxygen waiting for this process to happen all over again. About a half an hour after I was wheeled into the room, a phone rang and one of the many doctors there answered it. I could not make out what was said, so once the call ended I asked, “What was that, a wrong number?” Humor was my defense against my fears at that point, and it was working well enough. The anesthesiologist spoke with me and said they’d be putting me under in the next few minutes. My last memories in the operating room were of a warm, dark, swirling sensation, like slowly going down a drain, and a comforting feeling of immense love. Whatever was on the other side of this surgery, I was ready for it.
As I said before, after this point, I had the easy job for what turned out to be the next 36 hours. Sixteen of those were the actual surgery, which took longer than most since my own lungs were so scarred and needed to be cut out very slowly, centimeter by centimeter. Dr. Jules Lin did the entire procedure, including the “second surgery” which was required because I began bleeding internally after the donor lungs were successfully placed. Thirty units of blood later, the bleeding had been stopped and I was in the recovery room. My loved ones watched and waited for me to awaken, which I did not do until Saturday morning. My wife said that she wanted more than anything for me to be extubated and start breathing on my own because she needed to hear my voice—that would reassure her that I was really and truly “back.”
When I did regain consciousness, a respiratory therapist named Jason was there, and he promptly told me I needed to breathe into an incentive spirometer ten times every hour. If I had realized that he is almost seven feet tall, I might not have responded by saing, “You’re a jerk.” It turned out he wasn’t, though. He was among the best in a long line of fantastic caregivers who got me through those first few days of my recovery. I could write an entire article about the individuals who went above and beyond the call of duty to make my experience in the ICU, and later the stepdown unit, easier and brighter. The progress I made in the first few days, including getting out of bed and sitting in a chair on the same day I regained consciousness, was very encouraging. I was on four liters of oxygen, but that was already an improvement from my pre-op state.
Every transplant recovery has its complications. Mine involved a night where my oxygen need tripled, my vivid (though not frightening) hallucinations (a side effect from the medicine) kept me awake every time I closed my eyes, and, we would later discover, my epidural had fallen out and stopped working, so the pain, which had been well managed prior to that, really hit me. I was understandably worried about what was happening to me, and felt like I was not in control of anything. Thankfully, the morning brought some answers and the RT whom I had previously called a jerk had a theory about why I was all of a sudden not breathing as well as I had been. My family’s worst fear was that my body was rejecting the lungs, but his first thought was the issue was as much psychological as physical. And he was on to something. The doctors determined that I was dealing with “perfusion edema,” which is a fancy way of saying my lungs were angry about the transplantation process and they just needed to keep an eye on the fluid draining from my lungs. To help the fluid drain faster, I had to learn to stop worrying and, as the Faith Hill lyric goes, “just breathe.” Retraining myself to inhale and exhale in a way that was befitting these new healthy lungs and discontinue the compensatory techniques my body had learned to use due to my old, failing lungs, was crucial, difficult, and only possible because of the encouragement of the nurses, doctors, therapists, and, of course, my family.
After that day, the remainder of my recovery in the hospital went pretty smoothly. I continued to be flooded with support through Facebook and excitedly updated everyone about each little moment of progress. Right after I was transferred to the main floor, I graduated to breathing room air. After over a year of needing supplemental oxygen, two weeks with these new lungs put an end to that. My son was able to visit me, which felt like a national holiday. As I continued to improve and was nearing a departure date, the doctors prepared me for the biggest adjustment I would face at home: being responsible for taking all of my medicine at the right times and in the right dosages. The transplant coordinator Cathy also assured me that I could call with any question or concern, and that there was no such thing as a silly reason to call her. These final pieces came together, and three weeks after the surgery, I stepped outside for the first time, in the warm bright sunshine breathing the fresh air (through a surgical mask, of course).
Having now been home for almost three months, my life has done a 180 degree turn when compared to my pre-transplant life. Almost every part of my day is better and different than it was with my old lungs. Under the care of the amazing Dr. Tammy Ojo, I no longer do any nebulizer treatments, I’ve gained almost 30 lbs. and my lung function is currently only a few percentage points below that of the average male my height and weight. While a return to teaching is still a ways off, I am relishing my ability to do work around the house and run errands to make our family run as smoothly as possible. I never thought there’d be a day when I appreciated the fact that I can sweep the whole upstairs without getting tangled in an oxygen cord or getting short of breath, but by golly, that day has come.
Perhaps best of all, in November I was invited to speak to the very same students I taught on my last day prior to needing to go on medical leave, because they chose to honor me by organizing a fundraiser for Gift of Life Michigan. Standing in front of them, telling them the story you just read, and further igniting their passion for helping to raise money for the cause of organ donation has been a highlight of my post-transplant experience. After the speech, one of the students asked my about my donor and if I had any contact with the family. I told them that six months was the timeframe the doctors put in place for that to happen, but I was looking forward to that day, because I am continuing the crusade I started when I went on the lung transplant list. It is a crusade of gratitude, a mission to tell everyone, even those who I think are already aware of it, how grateful I am for their impact in my life—a new life that I would not have if not for my doctors, a stranger, and these wonderful, beautiful lungs.