The Comeback

Sat 12/21/13 at 2:37 pm

What follows is a Walking Raven entry I wrote a couple years back. I found it the other day while performing the Sisyphusian task of organizing my virtual life. I fixed a few typos, but pretty much I decided to post as written. On this, the fourth anniversary of my transplant, I thought some of you might find it of interest.  Not much has changed except, instead of WOW, I’ve been playing Skyrim. (I have measured out my life in video games.)

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So, it’s June. 2011. Where have I been? Playing World of Warcraft (WOW) mostly, and my addiction to it may pretty much explain my absence, but I like to think there were other reasons, too – some of which I’ve decided I want to try and explain in what I hope proves to be a “come back” post. I doubt many of you will read much beyond this point (if even to this point). After all, what follows is way more than 140 or even 420 characters. So I write for me, and those few, those happy few I am honored to call my band of comrades.

As I think most of you know, several years ago I was diagnosed with severe COPD a/k/a emphysema. I spent the next few years managing that insidious disease. During that time I think/hope I learned how to die, or more specifically, learned I didn’t have to learn how to die. Nothing to learn. One just dies, or not.

During those years, I never read Sontag’s Illness as Metaphor. I’m not sure why. It seems so appropriate given my illness and obsession with metaphors. Perhaps someday I’ll choose it as my next “to read.” I’m unsure why I bring it up other than to acknowledge I thought about reading it, and maybe on some level to remind that sometimes an illness is just an illness.

I’ve just kept the promise to myself which was that I would write something first thing. WOW is off-limits except while watching various and sundry (usually these days) streaming videos. The next three books (four if one counts The Bible) are either begun or queued. I still have some things to attend to on my list and some significant nerd maintenance, but I will write through it all. I want/need to explain. Which explanation I will endeavor to tease out from the fabric of the written universe in the coming days.

It’s been about a year and a half since I underwent a single lung transplant. I received a new left lung, and at some point every day I wonder at my good fortune. By the end, I was pretty sick and pretty miserable, but I did it the way I did it to give me as long a life as possible. My initial evaluation as a lung transplant candidate occurred in June of 2002. I had been diagnosed a few years before and told that in five to ten years I would probably need a transplant. A change in health insurance providers resulted in a temporary pulmonologist change, and my new doc was much more proactive (in retrospect more an alarmist) concerning the transplant. He advised I should take steps to get “on the list” as soon as possible. At the time, lungs were allocated according to blood type, size, and seniority (on the list). The wait was approximately three years. He told me given the current state of my lungs I had two and a half, maybe three, years to live.

I was devastated. I really like being among the living.

Long story short, I immediately began to get my transplant ducks in a row. Because no New Mexico facilities perform lung transplants I pretty much had carte blanche where to go. Given my beloved sister lives just outside Minneapolis and University of Minnesota/Fairview is one of the premiere transplant centers in the United States, it was a no brainer I would start there. I arranged for an evaluation and spent several days being poked, prodded, and measured. The highlight was a heart cath accompanied by a Benadryl drip. Oh, yeah. At the end of it all, I met with an amazing surgeon who recommended I be listed for a bilateral sequential transplant. And so began the wait.

My pre-transplant pulmonologist advised that after my transplant I would need to find a new home for my wonderful yellow-naped Amazon parrot, Lexis. As it was, his presence in my life was causing irritation in my native lungs. I decided it would be difficult not to let the knowledge I would one day have to give him up interfere with our relationship, and so we found him a home with a young male member of the Parrot Clan at the Zuni Pueblo. Lex would be treasured. We were companions for 17 years. I still miss him, but know he’s had a good life, and will hopefully continue to have a good life for a few more decades yet. (Average lifespan for yellow-napes is 63 years.)

As I moved up the list, and just as I was about at the point when I could realistically be called, the rules changed from blood type, size, and seniority to “need based.” Would-be recipients with COPD were generally at the bottom as it was really impossible to predict how long any of us would hang on whereas cystic fibrosis and pulmonary fibrosis have fairly predictable life expectancies; e.g., no one with a certain type of pulmonary fibrosis lived beyond three (3) years. I was 50, and for me it was decision time. I asked my transplant center pulmonologist to give me survival odds with my old lungs. At the time my lung function was approximately 24%. She estimated a 45% 5-year survival. I asked the odds with transplanted lungs. 55%.

Knowing that no one has survived beyond 15 years after a lung transplant, I made the decision to stick with my old lungs as long as possible. I took my name off the list since seniority no longer mattered, and began the saga of managing the disease. The next five years certainly took their toll. Shortly after my decision, I contracted pneumonia and spent 10 days in the hospital as a very sick puppy. I was unable to do much of anything except lie in a fetal position, sleeping fitfully, waiting for my lungs to clear. Eventually, they did. I took a shower and went home. As I understand it, frequent hospitalizations of pneumonia was pretty much par for the course.

The culprit(s) were “mucous plugs” that periodically blocked whatever airways I had left thereby drastically reducing my already totally compromised lung function. The danger was I would not have the strength to clear the blockage (or, as the alarmist pulmonologist once remarked, sneeze and collapse a lung).

Amazingly, that was my only hospitalization. Over the years I would require ambulance transport to the emergency room, but after a blast of intravenous steroids and antibiotics I went home, as hospitals were full of nasty germs. At the insistence of my sister Mary, I acquired The Vest by Hillrom. Normally only used by cystic fibrosis patients, its user-base was slowly expanding to include other lung conditions. I am convinced it kept the infections at bay and I am grateful to my sister for her tenacity in this regard.

The amount of oxygen you are on is measured by litres. I went from 2 liters at rest to 3 liters. 4 to 6 with nearly any kind of exertion. By the end, I was having to crank my oxygen up to 6 (as far as my liquid oxygen home tank would go) just to walk down the hall to the bathroom. I rarely went out, in part because it was just too hard; in part because there were germs out there. Being an off-the-charts introvert, spending my days hanging out with various farm members (that at present total a greyhound, a whippet, and 5 cats) was actually quite pleasant. I rekindled my love of reading, watched the occasional video. In 2007, I began playing WOW. Until that day, I had managed to write at least a third of my novel, The First Voice. After that, not so much. Indeed, not at all. I’m still struggling with finding a balance. On some level I know I must let go, but the opportunity to make order and the vibrant graphics of WOW continue to suck me in. I am an addict. It’s pathetic. I am a willful, stubborn addict — but I leave my WOW addiction for another day, or not.

On December 20, 2009 at 4:13 p.m. I got the call offering me a lung. By 6:30 p.m. we were wheels up at the Albuquerque Sunport hurtling toward Minneapolis at the speed of a Lear jet at altitude. Ground transportation to U of M/Fairview awaited us there. Now, I’m something of a word snob, though notoriously bad about using cliches. One word I particularly dislike is “surreal.” But the only word to describe what awaited us at the Minneapolis airport is “surreal.” The flight nurse, EMT, Darcy and I were directed to a Hummer stretch limo the interior of which was illuminated by multi-colored neon which glinted off the bar and the several champagne glasses hanging overhead. By the time we made it to the limousine, though, the shock of what was about to happen had really set in. I was floating in metaphorical amniotic fluid. My fugue state continued once we reached the hospital where my sister Mary and brother-in-law Marc were awaiting our arrival. I have little memory of the next few hours. I know I was administered 1000 mg of Prozac out of the gate to suppress my immune system. And I remember my surgeon explaining that he thought it was a “good lung.” I thanked him, and distinctly remember him saying, as he walked out of sight, “That’s why I brought you up here tonight.” (Later, he would tell the family it was the most “pristine” lung he had ever seen.)

I rely on others who were there to describe the next few days. The surgery took approximately __ hours. I hated being intubated. The first day off the tube I was in exceptionally good spirits. Then it all fell apart. Apparently I had uncontrollable diarrhea that eventually developed into an excruciating case of diaper rash. My back, from an old injury, was killing me. They’d broken three ribs on my left side to gain egress and ingress into my thoracic cavity. I had chest tubes that kept getting entangled. I was, in a word, “miserable,” which is why my reaction was not exactly joyful when people would suggest the transplant was my “Christmas miracle.”

Moving from ICU to the regular hospital ward only made things worse as the bed and chairs were horribly uncomfortable. The new year came. I spent approximately 3 weeks sleep-deprived. For the first time in long time, I wanted to die.

‘Roid rage episodes led to the alienation of everyone with whom I came in contact — especially those nearest and dearest. It is most frustrating watching one’s self be a red-faced, saliva spitting monster berating everyone about one sort of incompetence or another. The medical staff warned us this might happen, but it had little effect. Though I am utterly sorry for the pain I caused, still it would have been nice if my targets had somehow been able to accept that I was possessed by demons and been able to avoid taking it personally. Truly an instance of being “beside myself.”

I also hallucinated for many days. I sat in front of a huge computer console that enabled me to control my world. I would call up on a screen wherever I wanted to go, hit a button, and go there. I tore a rift in the fabric of the universe and slipped over to the other side where I floated amidst the Jungian archetypes. There were also audio hallucinations. One day while sitting in a wheelchair outside my room awaiting transport to X-ray (or somewhere), I “heard” two men conversing in the room next to mine. One said, in a distinct Indian accent, “You have not formed a sufficient personal relationship with God. You need to take a sleep study.” If only it were that easy.

Eventually, the diaper rash, diarrhea cleared up; the chest tubes were pulled, a final chest X-ray taken, and I was on my way to the Argyle apartment complex on Delaware just a few short blocks away from the transplant center and the hospital. For a reasonable rental fee, U of M/Fairview kept a block of apartments available for patients who required extended care.

Arrangements had been made for 24/7 care — Tim and Matthew (two cousins of good friends) and my baby sister on weekends. I bought a Samsung flatscreen TV and PS3 to keep the boys amused. I spent the next 3 months more or less sleeping in between clinic appointments and rehab. I started the latest J.D. Robb title on the plane to Minneapolis. The suitcase brought with me on the plane had been mostly filled with many wonderful books. I finished the J.D. Robb the first week in March. In other words, my fantasies of spending those days reading, reading, reading were a bit off. My attention span was that of a gnat. All was not lost, however. My dear friends mjh and Merri Rudd arranged to ship my iMac so I could play WOW. (There’s always time and energy to indulge an addiction.)

I’d had a reaction to Cellcept, one of the immunosuppression drugs, early on, and been put on Immuran instead. A couple weeks after I moved into the apartment, I developed symptoms of pancreatitis as a side-effect of the Immuran. That led to intravenous drug administration, a switch to Myfortic, and another week in the hospital.

In mid-March, 2010, I purchased the 1997 Buick LeSabre Tim’s grandfather had passed on to him. It easily accommodated my stuff and Tim’s. The two of us drove straight through and arrived in Albuquerque the following day.


previous post: Progress

Progress

Tue 06/25/13 at 10:28 am

I can look a friend or family member in the eye, and say, matter-of-factly and without flinching, “I am really smart.” Yet, just the thought of posting such a statement to the world wide web causes me to wince. It feels, at best, arrogant, at worst, really arrogant. The audacity felt by some at such a declaration is nearly palpable, sending a shudder through certainly the  Norwegian Lutheran members of my audience. As a group, we have rules to which there must be strict adherence. One of these rules prohibits an individual from any sort of self-praise unless it is accompanied by some sort of negation expression in the form of a self-depracating tone or gesture.

Well, I too, have rules. Some of these rules are specifically directed to breaking free from living what I best describe as a shame-based existence. One way I realized I could do this was to promise myself that if I wrote a Walking Raven post, I would publish it, no matter how flushed I became at the thought of doing so. In keeping with this promise then, I’m here to tell you all, “I am really smart.” There, I’ve said (so have I done) it. Anyone else out there care to give it a try? If you do, I’m fairly certain your  heart rate, like mine, will eventually return to normal. If you’re not yet ready for prime time, then go stand in front of a mirror, look yourself in the eye and see if you can say it and mean it to the person returning your gaze.

next post: The Comeback



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