The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.
My first recollections after crawling out from under the thick wall of anaesthesia are of two hospital employees talking about my case as I peered up from my bed to their workstations. I knew they were talking about me because, although I didn’t catch my name, I did hear other identifying information. One of them mentioned that a doctor had said “no” to my case, but I reckoned in my mind that others on the team were persuasive in giving the transplant the green light; or, it could have been that the doctor said “no” to the donor organ. I couldn’t tell in my bleary-eyed state. At some point after, one of these same two staff members said that I needed to try to cough and get some of the mucous up; he implied that this was dire in that early stage of recovery; that I might not make it if I didn’t. Or, given the continued sedation, wild early side effects of anti-rejection medicine and trauma associated with such an invasive procedure, perhaps none of that dialogue happened at all.
Another memory from the intensive care unit: When consciousness began to unfold, I noticed that the new lungs were extremely tight, and in my mind’s eye, I pictured a narrow rectangle above my head, representing the limited range of my breathing capacity, that was surrounded by amorphous shapes or clouds. This was a panicky time during the recovery process because I, indeed, felt a continuous need to cough up a lot of mucous but at the same time, I either wasn’t strong enough or the pain from the surgery was too sharp to make this possible.
Memory three: I came out of the operating room with about five chest tubes that were supposed to catch excess air and fluid coming from the lungs, so I remember a young UPMC fellow huddled over my chest hurriedly trying to undue one of these tubes while I was still under some sedation. He got one off and started on a second, but apparently my tolerance for grinding metal against skin had reached its limit, and when I began to call out in pain, he threw up his arms and said, “We’re done!”
And then came the victory lap. I was still drugged as hell at this point, but at the coaxing of a physician’s assistant in the ICU, I was able to get on my feet, with four chest tubes still in toe, I slowly walked some small distance. I guess I have four months of pulmonary rehab to thank for that ability. I could have heard clapping during this walk, but I really can’t remember. Emotionally, I felt little at this early stage. I was too numb.
The morning of January 31 had already gotten off to an unusual start. It was 8:30 a.m. on a Tuesday and a new coat of snow had covered the ground and road, such that the snow plows either hadn’t come or had been in effectual at clearing the apartment roadway. This was the most snow we had gotten on the road up until this point in the season, and knowing that I hadn’t missed any pulmonary rehab appointments since joining the program in September, I thought I was justified in taking a day off rather than trying to break my neck and brave the elements. I only learned this later, but when I called in to the rehab clinic, my therapist put me on hold to consult with my lung transplant coordinator who was, unbeknownst to me, on the other line at the same time. Minutes after telling my therapist that I was snowed in, my coordinator called and said they had a potential transplant offer for me. I was instructed go into nil per os mode (NPO, or no eating or drinking) and hang tight until further word.
Unfortunately, I had gotten into the habit of only having coffee before rehab because I tended to breathe better and had better oxygen saturation levels without a bunch of food on my stomach, so when I got the initial call, I was already NPO from the night before. In any case, the coordinator said rather than waiting around at the hospital, I could just stay at home until doctors had more information about the possible match. I called to check on my case at 2 p.m. and was told to have a light lunch — I had a Hot Pocket, which is the last bit of solid food I have eaten since that day — but to remain NPO from that point forward.
Later that evening, I was called to the hospital, got checked in and went through the usual array of routine tests — X-ray, EKG, vials and vials of blood work — before making it down to the pre-operational area feet away from the operating room. Right before one knows whether the operation is going to happen for real or not, hospital personnel give a full rundown of the transplant process and convey information about the various contraptions that may or may not be needed for the operation to be a success. In my case, because the pulmonary hypertension was so high, a special heart machine needed to be deployed. At some point during this extra hour of waiting, one of the doctors told my parents and I that a female patient had been called and sent back home from the hospital 19 times before getting the final green light on her operation. My dad asked hypothetically whether I could handle going through that process that many times. At the time, I said, reluctantly, that I didn’t know, but having thought about it further and having only suffered the stinging disappointment of being turned away twice, I’m still not sure that I could have.
That said, after an hour, I was finally called back to the operating room just at 2 a.m. the next day. The last thing I remember saying to the medical assistant as I was carted in the cold, cavernous place, taking a quick pan around the room as numerous cloaked people wrestled with tubes and wires: “Well, this is intimidating.”
I have already described the initial feeling of waking up from the transplant as panicky. I felt like I was being forced to breathe through an even a smaller straw than the one I had with lung disease. I was congested and wasn’t strong enough to cough up the mucous, and even if I was, it hurt too much to do so. Luckily, this stage of the process passed fairly quickly as my lungs began to open up little by little. The Thursday and Friday after the transplant are more or less a blur. I began to come to my senses a little on Saturday, but I would remain on heavy pain killers for the next several days. The main life goals of a transplant patient at this early stage seem to be to try to walk down the hospital halls once or twice a day and blow into the cucumber (air resistance device) and air incentive spirometer as many times as possible to help expand the alveoli sacs inside the lungs. Other than that, my days since getting transported from the ICU to my main hospital room on the ninth floor of UPMC Presbyterian have generally looked something like this:
- 4-6 a.m.: X-ray inside room
- 6 a.m.: Blood work
- 7-9 a.m.: Breathing treatment
- 8-10 a.m.: Medicine dispensing, check-in from nurse
- 9-11 a.m.: Various visits from doctors, nurses and physician’s assistants from the lung transplant program and typically a walk down the halls.
- 12-5 p.m.: Free time, sporadic visits from doctors, bath (if needed), etc. Since the first two weeks were largely spent in pain, mostly this free time for me has meant vegging out at the TV, sleeping or just staring at the bed and nodding off.
- 7-9 p.m.: Second breathing treatment
- 8-10 p.m.: Check-in with night shift nurse, medicine dispensing
- Midnight: Final vital sign check.
As you can see, even if you can sleep in theory, you won’t sleep much with so many interruptions throughout the day and night, but it does make sense that people who are trying to recover from a major surgery need to be engaged and active in the process and not just left to occupy their own little corner of their room for 12 hours or more a day.
Let me back up. I need to describe the experience of breathing with the new lungs. As I said, I was a little out of it the first time hospital staff got me to my feet to walk in the ICU, but when I got the semi-permanent room on the ninth floor, therapists took me for a walk or two every day. The first walk on the ninth floor without oxygen felt like a true triumph. COPD is a slow, degenerative disease, so I didn’t always feel like I was breathing through a straw; I remember a time, sick as I was, when I could still pass a fair amount of oxygen through my lungs. I could still remember what it was like to walk for yards along the beach without feeling breathless; to take short hikes through the woods; to bowl; to toss the football around with friends; to shoot hoops; to set up my own musical equipment and play open mic night on the guitar. But in the last 10 years, and certainly the last five, those memories have been fleeting as my pace without oxygen has steadily declined, such that simply walking to the back of a department or grocery store took real effort.
Although I was still hampered by those chest tubes, the experience of freely passing air in and out of my lungs — physically feeling the increased volume — was like no other after being penned for so long inside my own respiratory prison.
The last three weeks haven’t been without setbacks though. The next week after the transplant, I developed a minor infection that had to be treated with a round of antibiotics. This was disheartening at first because by that time, through breathing exercises and walking, my respiration was steadily increasing and my oxygen saturation levels were hanging in the normal 97-100 percent range. I was surprised by how quickly these metrics changed when I got sick, as my chest suddenly got tight, my O2 saturation dropped into the low 90s at rest and I was getting tired just getting out of bed and going to the portable toilet. I suppose this speaks to the relative fragility of newly transplanted lungs. As I understand it, they are supposed to get stronger over time. In any case, thanks to a quickly scheduled bronchoscopy, doctors were able to clear out a lot of mucous and identify the specific illness that was attacking my system. After they started antibiotics, I began to feel better and get back to normal.
Perhaps the most difficult thing with which to deal throughout this whole process was, not the transplant itself, but proper implementation of a simple feeding tube. As a matter of convenience, doctors decided to add the tube in my stomach during the bronchoscopy procedure so I wouldn’t have to go to the OR for two routine procedures on different days. The feeding tube was, and is, necessary, because as I may have mentioned elsewhere, I have an abnormality called achalasia, which means that the esophagus does not properly move food down the throat into the stomach. Also, I can’t swallow pills, so doctors planned to install a feeding tube as a workaround and to keep my nutrients up during a prolonged NPO period.
The first feeding tube began leaking gastric fluids, possibly stool, right out of the gate, and the problem only seemed to get worse when the feeding tube was on. My transplant doctors wanted me to ideally have what is known as a combination G and J feeding tube, with the G section going into the stomach and the J tube emptying into the small intestines. I would be given food through the latter portion and only receive medicine through the G tube. Doctors wanted me to be fed through the deeper J tube because that presented a decreased risk of aspirating contents back into the new lungs. However, the surgeon charged with fixing the original, leaky feeding tube only put in a G tube and not the combination, so all contents, including food, would have been going right into my stomach. A smaller J tube was supposed to be installed inside the G tube in the interventional radiology lab, but the hospital did not have a small enough size. That trip to the IR being a waste of time, I was sent back a couple days later, and the doctor just removed the G portion of the original feeding tube and installed a J tube, which is what I have now. The smaller tube comes with an increased risk of blockage, but surgeons insisted that the tube needs to stay in at least a couple weeks, so the plan now is for me to go home with this tube in place.
In addition to the revolving door hell of being carted from the OR to the IR several times over the course of two weeks, the real headache in all of this has been the physical pain. Indeed, trying to recover from the initial surgical work after the first feeding tube was far worse that anything I experienced from the lung transplant — even worse that those chest tubes — and because of that, I have been on fairly high doses of oxycodone and Tylenol since the first feeding tube was implemented. The good news now is that the wounds are starting to heal up, and the pain is beginning to wane, and since doctors are just going to leave the current tube alone for the moment, I will have extra time to heal before they decide whether to add an extra access of point or just take it out altogether in a couple weeks.
The lung transplant was three weeks ago today, and from a breathing standpoint, I haven’t felt this healthy in at least 10-15 years. My doctors tell me this is just the beginning, that the lungs should continue to improve as I use them on a daily basis, with peak performance typically coming one or two years after transplant. As it currently stands, I am sitting here writing this on room air at 100 percent oxygen saturation and feel no breathlessness walking the halls of the hospital, whereas before the transplant, I averaged 93-96 percent sitting completely still, and the percentage would plummet the moment I began exerting myself with any activity from walking to the car or tying my shoes.
The best news that I have received since coming to the hospital came yesterday. Results from my lung biopsy showed no rejections from the new lungs (90 percent of lung transplant patients have some kind of rejection), and as such, I could be discharged as early as Friday or Saturday if all goes well.
All of this is incredible, of course. The skeptical, or realistic, side of me actually wondered whether it would ever happen or not. I wasn’t convinced, but remained hopeful in the midst of more than a few despairing nights, of windswept snow and the barren dawn and endless cycles of waking and dreaming that perhaps my time would come — and it did, and for that, I feel extremely fortunate and grateful. I guess that’s all I needed. That, and no shortage of support from my parents and family and good friends, all of whom convinced me, even if they don’t know it, to keep going and to fight for everything, for all that is, for love, for truth and beauty, for beauty and truth.
Next time, I will offer more insight into what the transplant actually means to me, and I will discuss perhaps the most important person in this whole process — the donor.