Clearing the Air: No. 7: D-Day

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 sutures 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 ineffectual 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 to 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.

Read more: Clearing the Air: Nos. 1, 2, 3, 4, 5, 6.

[Artwork credit: “Lungs” by DeviantArt user JeanFan.]

Clearing the Air: No. 6

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.


Since arriving in the Pittsburgh area late last summer to get prepared for a double lung transplant and through those interminably long and portentousness days and nights of fall and winter — full up with hope, restless and boredom largely pent away inside myself — the waiting process was beginning to weigh on me as the holidays passed and one year bled into another.

Before Christmas, I learned that a doctor who was crucial to the lung-and-bone-marrow-transplant timelime was going to be away for 10 days and would not be back to town until Jan. 3, so I was taken off the transplant list temporarily, which gave me the chance to check on my place in Tennessee and see family and friends over Christmas and New Year’s. Even so, given my precarious health predicament at the time, I thought I could have ill-afforded to lose the 10 days off the list, but lose them I did.

Then came the second call to the hospital Jan. 6 when I again received notice that the night’s proceedings would not end with a date with my own destiny, but with a trip back home out into the darkness. After sitting around at the hospital most of the day and then well into the night, my parents and I, occupying a small station inside the pre-operational area of University of Pittsburgh Medical Center Presbyterian and surrounded by dangling wires and silent machines, a young fellow at UPMC had the unfortunate task of informing us that the potential donor lungs could not be transplanted because they contained pneumonia and some kind of mass.

Even though I was a little anxious to go under the knife at any time, as most sane people would be, this rejection was a big disappointment because I knew, as I mentioned elsewhere, the clock was ticking on my current medical state. I had been diagnosed with severe pulmonary hypertension a full 1 1/2 years before this night, and hearts can only handle the pressure for so long before they simply wear out. Once heart failure develops, a patient’s life expectancy greatly diminishes, and since more than two months had passed between this night and my last call back in October, I was concerned that time was increasingly not on my side if several more weeks or months had passed without finding a potential match.

But three weeks later, the sky above did break …

Read more: Clearing the Air: Nos. 1, 2, 3, 4, 5.

Clearing the Air: No. 4

The notorious stage theory of Elisabeth Kübler-Ross, whereby one progresses from denial to rage through bargaining to depression and the eventual bliss of “acceptance,” hasn’t so far had much application in my case. In one way, I suppose, I have been “in denial” for some time, knowingly burning the candle at both ends and finding that it often gives a lovely light. But for precisely that reason, I can’t see myself smiting my brow with shock or hear myself whining about how it’s all so unfair: I have been taunting the Reaper into taking a free scythe in my direction and have now succumbed to something so predictable and banal that it bores even me. Rage would be beside the point for the same reason. — Christopher Hitchens, “Topic of Cancer,” Vanity Fair, August 2010


Christopher Hitchens has said, upon contemplating his own medical predicament in the above piece and in interviews, that having cancer was nothing like a “battle,” as most people politely frame the discussion when the grim news comes around. There is no battle, he said. “You feel as if you’re drowning in powerlessness,” he said, and elsewhere, “I’m not fighting or battling the cancer. It’s fighting me.”

As for myself, I wasn’t as far along into respiratory degeneration as I am now when the Reaper turned his wintry stare on Hitch six years ago — and in the process, cut down one of the preeminent thinkers of our time and one of the greatest writers of any time — but I think I knew, even then, what he was ultimately implying, even if he didn’t come right out and say it. Outside of extreme intervention — aggressive chemotherapy, bypass heart surgery and organ transplantation — human beings usually can’t come back from the brink when faced with certain forms of cancer, obstructed arteries or lung disease. And fortunate as we are to live in an era of research and discovery, without modern medicine and science, we, as a species, would be left exactly where we started: trembling before the stars and wondering, in our own baffled ignorance, what capricious god we must have angered to be stricken with all sorts of maladies — a weak heart, bad sight, a wobbly gait — to send us to our unceremonious graves. In many cases, then, cancer isn’t a battle so much as it is a civil war; a person’s own cells, metastasizing and turning against them in an unwinnable, merciless onslaught. It’s Pickett’s charge without the bayonets and the ensuing inevitability of surrender. That’s certainly what cancer is without medicine, and that’s sometimes what it is with chemotherapy, which Hitchens preferred to call “venom.” With cancer, then, there are a few winners, no shortage of brave fighters and unfortunately, a disproportionate number of losers.

The struggle

Hitchens, as do I, preferred the analogy of the struggle when thinking about chronic illness. Readers, or people who know me personally, will no doubt know by now that I draw a lot of inspiration from “The Myth of Sisyphus” essay by Albert Camus and the tale of a man who, after daring to trick one of the gods, was ordered to heave a rock up a mountain, only to have it roll back down to the bottom and to repeat the process endlessly. It is in this essay and in the imagery of Sisyphus’ seemingly “futile and hopeless labor” that we see one of the most profound illustrations of struggle and perseverance.


Camus invites us to imagine the sweat and toil Sisyphus mustered to get the boulder up the mighty slope just one time and then, as with all other subsequent ascensions, he watched as the rock inevitably crept back down the mountain. At the summit, Sisyphus turns and prepares to meet his fate once again.

Camus calls this brief interlude — “that pause” — Sisyphus’ “hour of consciousness” constituting mankind’s singular point of triumph:

At each of those moments when he leaves the heights and gradually sinks toward the lairs of the gods, he is superior to his fate. He is stronger than his rock. … If this myth is tragic, that is because its hero is conscious. Where would his torture be, indeed, if at every step the hope of succeeding upheld him? The workman of today works everyday in his life at the same tasks, and his fate is no less absurd. But it is tragic only at the rare moments when it becomes conscious. Sisyphus, proletarian of the gods, powerless and rebellious, knows the whole extent of his wretched condition: it is what he thinks of during his descent. The lucidity that was to constitute his torture at the same time crowns his victory. There is no fate that can not be surmounted by scorn.

Sisyphus, then, becomes what Camus calls an “absurd hero,” who relishes in what it means to be alive, spurns death and defeat and goes about the only things that he now knows: self-preservation and his rock. Thus like Oedipus, Sisyphus and modern man must eventually conclude, “Despite so many ordeals, my advanced age and the nobility of my soul make me conclude that all is well”:

I leave Sisyphus at the foot of the mountain! One always finds one’s burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.

Unlike Oedipus, Sisyphus is not a tragic figure, but a person who perseveres and finds purpose, and possibly even contentment, in circumstances that, on the surface, seem to offer little. He finds wonder in each atom of that rock; he marvels at life in the void of night. The lesson is poignant because it teaches us to appreciate life, to carve out a little corner of happiness and enjoyment for ourselves, regardless of the circumstances. Or, as Milton said, to “possess a Paradise within thee, happier farr.”

Indeed, in order to weather the inevitable battery of tragedies that could befall us at any given time, one must imagine what life would be like during a worst case scenario, and we should emotionally prepare ourselves for it because before I get to the end of this paragraph, someone, somewhere, is indeed approaching the precipice and lowering their eyes on the darkness. None of us are all that far away from the edge, from the worst of things, as we might like to imagine.

And so, realistic hopefulness is where you find me here amid the struggle — the creeping ascent, an upward gaze, a cloudbreak before the retreating fall and a turn toward the heights in the gathering dust.

Philosophical musings notwithstanding, the physical analogies I draw from Sisyphus should, by now, be obvious. The process of breathing with COPD is like walking up a steep hill all the time or holding your breath too long in the deep end of the pool. It’s a slow and inevitable march that will catch up with me sooner or later without a transplant. That’s not resignation; it’s just basic medicine, and so, realistic hopefulness is where you find me here amid the struggle — the creeping ascent, an upward gaze, a cloudbreak before the retreating fall and a turn toward the heights in the gathering dust.

The middle

I said in the last post that I would cover some of the other complications that have made getting on the list and on the operating table a tough sell. In addition to an irregular immune system, I also have what is known as achalasia, which, compared with these other health issues, is actually pretty common. It simply means that the esophagus does not carry food down the throat to the stomach as well as it should. As such, food sometimes gets lodged down the gullet, and in bad cases, patients have to regurgitate and just hope the passageway opens back up on its own. So far as I know, I have had this since I was a child, and I have had to eat slowly and at a measured pace ever since.

A person with this condition doesn’t have to swallow food whole in order for substances to get stuck. Some foods, like rice, pasta, chicken and steak, require lots of chewing, and even then, if you eat too fast, they will get stuck. Since I have lived with this for the better part of three decades, I usually don’t throw up anymore. I know what foods tend to get stuck and eat and drink accordingly.

It’s hard for me to describe what it feels like when food does get stuck. Most people will be familiar with the experience of drinking a cold swallow of water and feeling it go down their throats. If the esophagus is closed, even water doesn’t go down, so if you keep drinking or eating after the problem occurs, it feels like fluid and food is building up in the middle of your throat. If it doesn’t “clear” on its own, there’s nowhere for it go but up. Once enough food and liquid start to build up, patients tend to feel a lot of pressure until eventually, it just feels better to throw up than to continue to hold it down. In the past, I have been able to hold it long enough where it did clear on its own, but that’s a far from pleasant experience. The best of all options, of course, is to eat slowly and don’t get sick in the first place because once a person throws up the first time, it usually takes longer for the esophagus to go back to its normal state. In previous episodes, I have spent the better part of a day waiting for the damn thing to open back up. Pretty disgusting, huh?

Doctors have a few treatments for this, including muscle relaxers, a rather routine surgery called an esophageal dilation and a more complicated procedure known as a heller myotomy. I have had numerous dilations, and if I move forward with a lung transplant, at some point after the operation, doctors will want to perform a myotomy to mitigate the issue.

The complication, as it relates to the lung transplant, is that achalasia patients usually also have problems with acid reflux and aspiration, which means, because the esophageal muscles don’t function properly, materials from the stomach can come back up into the throat and damage the lungs. As I said earlier, doctors don’t seem to know for sure, but this could have been what contributed to some or all of the initial lung damage in the first place, and this is why Duke did not approve me for the lung transplant, although they knew beforehand that I had achalasia.

In any case, the sequence of steps will be to first get me through the lung transplant, look at performing the myotomy a few weeks into the recovery period and then the bone marrow transplant two or three months after the lung transplant. The kick in the nuts about the swallowing problem is that I will not be allowed to eat or drink anything for four to eight weeks after the lung transplant and will get nutrients through a feeding tube. I have assured doctors that I have the wherewithal to sustain this exercise in mental endurance. We will see if I actually do. Not eating is one thing; not drowning myself in coffee every day will be another one altogether.


I’m not sure yet what I will write about next, as I have been fairly restless the last several days. My parents and I have since left the Family House in the medical district of Pittsburgh and am currently living in an apartment in a place called Wexford. I sustained what hopefully will be a minor setback regarding insurance. While the lung transplant itself was covered, the bone marrow transplant has yet to be approved. The two procedures go together. Because of the aforementioned complications, I don’t qualify for new lungs without the bone marrow transplant. My case manager at the hospital was under the impression that the bone marrow procedure would be covered through a research grant, and it may well be, but at this preliminary juncture, the insurance has to be approved before we can move forward. As such, I was made inactive on the transplant list temporarily until funding is approved for the bone marrow transplant. I am hoping for a resolution this week.

[Artwork credit: “Sisyphus” by DeviantArt user ahermin.]