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. 5

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.

hospital

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.

[Artwork credit: “Hospital” by DeviantArt user FarDareisMai.]

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.

sisyphus_by_ahermin

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.]

Clearing the Air: No. 3

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

***

Lest it appear that my last post was nothing short of a whole-cloth evisceration of all private health insurance companies everywhere, I do have more information to share that may balance the scales a little. Obviously, I did get another evaluation and did get approved for a transplant, or else I would not be sitting here looking out over UPMC at this moment. But more on all that later.

But first, let me say a word about customer service. In dealing with my company’s insurance carrier, UMR, I was almost solely in communication with one person — the transplant case manager. As we all know, the robotically trained peons who answer the phone at any insurance company’s 800 number are, by and large, utterly useless. Case managers, then, are supposed to be more skillfully trained in being able to answer complicated questions, and my particular case was about as complicated as it gets. Even so, the failures were many.

corporate_lobby

Here is what I tried to explain for weeks and months during the previously referenced appeals process: I didn’t know that my insurance company even had a limit on the number of medical evaluations a potential transplant recipient could receive until I had already reached the mark. There is nothing special about a transplant evaluation. All it is, is a weeklong series of tests and meetings with doctors and consultants to ascertain whether a patient can be accepted into the program. As such, I was under the impression that these appointments would, for insurance purposes, be treated like all other appointments. But no. Transplant evaluations are categorized differently because they can get quite costly, usually totaling $50,000 or more. Thus, from an insurance company’s perspective, if a patient is unhealthy enough to “fail” two evaluations, she is unlikely to be approved on the third try, so companies usually set the cap at two. So, while I wasn’t aware of the limit — technically, again from the insurance’s perspective, it was my fault for failing to find the pertinent language, plainly spelled out in black and white, on page 80-something of the voluminous policy — perhaps I could have been afforded a little slack in being solely concerned about getting access to health care rather than having an atomic-level knowledge of every nuanced detail in the document.

Although my insurance case manager knew that I was trying to get approved for a transplant, no one bothered to mention before I set up the second evaluation at Duke that the University of Pittsburgh Medical Center could become an in-network facility in a matter of weeks (see previous post) or that it was even being considered. Surely, this process doesn’t take place overnight. At the time, I was more confident than not that Duke would accept my case, so it’s not like I went there kicking and screaming, but had I known that UPMC was a possibility in the near future or if someone had told me about other in-network options like Cleveland Clinic or John Hopkins — both of which treat high-risk cases like myself — perhaps I would have waited. 1 As I have said, only after I used up the second evaluation did I learn that UPMC had become an in-network facility, which is what I tried to explain multiple times to my case manager who should have had my best interests at heart. I saw little evidence of it.

With the above information, I requested a narrow exemption given the particulars of my case, the severity of my condition and the requisite expediency. During the earlier, verbal part of my appeal, the case manager claimed she would take my case to her superior, but after that failed — who knows whether she actually did or not — I was told to write a letter and send it to some shady post office box address in Wisconsin. That was the second appeal. After that was rejected, I was told to send yet another one, and following the third fruitless endeavor, which included the aforementioned letter from myself and my doctor in New York, I was told I could then petition my secondary insurance for evaluation coverage. During all of their delays, belated return phone calls and long waiting periods between appeal responses, I lost at least five to six months, jerked along all the while, that could have been spent on a waiting list.

… It’s water off my back as long as I maintain the physical and mental ability to excoriate the idiocy and cold intractability of the system, plainly spelled out in black and white, as I am doing now.

The fire drives me on. I’m fairly young and have a strong constitution, and so, although all of this was certainly irritating and makes me think we should rip the insurance industry asunder and start anew, it’s water off my back as long as I maintain the physical and mental ability to excoriate the idiocy and cold intractability of the system, plainly spelled out in black and white, as I am doing now. But imagine the typical transplant patient: weak, infirm, emotionally drained. How much more difficult would it have been for them to go through this labyrinthine process only to get turned away with a few blithe keystrokes? How much more defeating to have gotten that far and have to start over?

Back to the story. Having thus exhausted all options to get coverage for a transplant evaluation with my company’s insurance carrier, I, along with a helpful case manager from my secondary carrier, who had more sympathy in her voice on the first phone call than I got with the other company in six months, began the process by which I am here today. Essentially, the medical director at the second insurance company discussed my case with the transplant director at UPMC and got the necessary approval for me to be seen, assuring the insurance director that the hospital in Pittsburgh had “different techniques” that could be deployed to mitigate my particular set of complications, of which, I will take up next time.

[Artwork credit: “Corporate Lobby” by DeviantArt user ianllanas.]