The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.
Twenty days and 20 nights have passed since the last time I sat down to write an entry in this series, and in that time, a lot has happened — most of it hastening the process by which I may soon finally find myself carted away to the operating room.
I waxed philosophical, as I am wont to do, quite a bit in the previous post, so this time I will try to be a little more to the point. My doctors at the University of Pittsburgh Medical Center submitted a series of appeals to my insurance company in an attempt to get me approved for a bone marrow transplant that is supposed to take place a couple months after I receive the new lungs. The bone marrow transplant is crucial to the entire plan because without the bone marrow transplant component, I don’t qualify for the lung transplant at all for the simple fact that my current immune system, compromised as it is, will not respond well to the battery of immune suppression medicine that I will have to take post-transplant in order to prevent an organ rejection. So, doctors are seeking to do the bone marrow transplant fairly quickly after I receive the lungs and am more or less recovered.
In short, a previous appeal was denied because the insurance company said the policy only covered bone marrow transplants for terminal cancer patients. I obviously don’t have terminal cancer, so that appeal failed. In a subsequent, expedited appeal — expedited because of the sensitive and timely nature of my particular case — new or modified language was “uncovered” that allowed for BMTs in the case of terminal cancer patients or those with other critical conditions. Thus, my doctors won the appeal, and I was added back to the list Oct. 17 after being deactivated for a couple weeks.
In the meantime, I have been undergoing pulmonary rehabilitation three times per week (Tuesday, Thursday and Friday) at UPMC and have been working to build more tolerance each week. The details are boring as hell, but suffice it to say my workout times are increasing and my oxygen saturation levels have actually gotten a little better since starting the regimen, so that seems to be a good sign. The goal is to just make sure I’m in good enough shape that I am able to get out of bed and begin walking around a little after the transplant. As I understand it, at some point after the immediate recovery period of three to five days in the ICU, I will reenter the same rehab program, this time with the goal of making me stronger and more physically ready to step back out into the world with the new lungs.
I unexpectedly received my first call for a transplant last Thursday about 11:45 p.m. as I was in the middle of a conversation with my friend, Kim. When I looked down and saw the Pittsburgh area code and a number that looked like it was coming from the hospital, I was, of course, in shock for split second before I picked up the phone. The nurse on the other end said the hospital was prepared to offer me a lung transplant and to get to the facility as quickly as possible. When I hung up the phone, I told Kim, “Oh my god. I just got a call to come to the hospital now,” to which, she replied simply with a stunned
I then finished up what I had to say to her in that moment and began to get ready.
My parents and I set off in the rain and got to the hospital as quick as possible. After a waiting period in the ER lobby, I was taken to a room on the ninth floor, where I underwent a quick and successive series of tests, including a lot of blood work, an X-ray and an electrocardiogram. After this, a physician’s assistant came in and told me what was going to happen next. During talks with doctors before being added to the list, I chose an option by which the new lungs, before being transported to Pittsburgh, would go to Maryland (I think) to be tested on a machine to ensure they were working properly. I knew this would add a few hours to the waiting process, but I thought it would be an important fail-safe. After the series of test, we were told that the doctors’ goal was to have me in the operating room by 7 a.m. assuming the lungs were in good shape and could be transplanted. The hang of it is that I would have been put to sleep before knowing for sure whether or not the surgery was actually going to happen.
Because doctors plan to use cells from the lung donor in the subsequent bone marrow transplant, the bone marrow has to match as well, so about 6 a.m., the PA came in and told us that the bone marrow was not a close enough match to make it feasible to go forward with the transplant. We were sent home that morning. Later that day, I learned from my hospital case manager that the lungs were not of high enough quality to transplant anyway, so this is what they call a “dry run.” My case manager made it a point to tell me multiple that these “dry runs” happen fairly frequently because right before the transplant takes place, the lungs have to checked one last time to ensure viability, and that can’t take place until the patient is on-site and completely ready to enter the operating room. So, the news, a letdown though it was, was not a surprise.
Needless to say, last Thursday night was a surreal experience, perhaps made even more so by the fact that I didn’t sleep at all until I got back home, surmising that if the transplant went forward, I would have all the sleep I would need and then some. That, and the fact that, up until about 5:30 a.m., I was too wired and consumed by own thoughts to attempt sleep.
Kim stayed up and talked with me through almost the whole night, from the car ride to the hospital in those first few anxious moments, in between all those tests and up until I decided, unsuccessfully, to try to get some shut-eye. And so, in those dim hours as I was waiting high above the city, we talked from about 2:40 a.m. until 5 a.m. and covered a lot of ground about the state of my current life, what I might hope to achieve after a successful transplant and what life could be like on the other side of the precipice. Mostly, the long conversation, just one of too many to name these last few weeks, helped me to remain positive, not just about the surgery itself, but about my future.
My physical therapist asked me earlier today if I was frightening that night, having been called for my first potential transplant, which, as everyone knows, is one of the most invasive surgeries, if not the most invasive, a person can undergo and more than a little risky. I wouldn’t describe what I felt as fear; I was, and still am, confident that I will get through the surgery and confident in the doctors’ abilities to get me through it. I was certainly anxious most of the time that night, and as I told Kim, I used the half hour between 5-5:30 a.m. as a time to gather my thoughts and come to terms with what might be about to happen; that is, being put to sleep for most of the day, undergoing a serious surgery and not knowing whether I was going to wake up at all, much less wake up in better or worse shape.
In any case, until next time, I remain in the struggle and the struggle remains in me.
Tomorrow, I will be going in to receive a dose of Rituximab, an antibody that is used to deplete B cells in certain patients, which is a step geared to prepare me, not only for the lung transplant, but for the bone marrow procedure. As I understand it, a depletion of B cells decreases the likelihood for a rejection of the new lungs, and of course, as I said, the full BMT will be quick to follow after the lung surgery. When that times comes, my current immune system will essentially be wiped clean by a small dose of chemotherapy and radiation and be supplanted with cells from the donor of the lung.
It is a sound plan … in theory. We will see how it pans out in practice.