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.

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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. 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.

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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.]