Liver Transplant Story

A Personal Account,
with some random notes on organ allocation policy,
as well as a few musings and meditations for candidates and recipients...

What follows is an account of my experiences during the years from 1993 to 1998, coping with the onset of End Stage Liver Disease subsequent to Hepatitis C, and the two Liver Transplants I consequently received. It is offered primarily for the benefit of others who are about to tread this path; also for anyone wishing to educate themselves about transplantation in general from a more or less personal point of view. There is so very much that is experienced in the course of such a challenge; this account is primarily a factual, medical one, of how my case advanced, what I encountered, how I was treated. Here and there I offer what I think are more personal points of perhaps a certain unique interest; but it would be impossible (and not necessarily very interesting: living with liver disease is basically just a terrible drag) to try and characterize all the ups and downs, the day to day. At any rate, here goes.
As I write this, I am recovering very well (disregarding some unpleasant side effects of the temporarily high-level immune suppression medication) from a second liver transplant I received on April 12 (1998) -- incidentally, Easter Sunday. I've also just passed the third year anniversary of my first transplant, and it seems like a good time to try and bring closure to this phase by attempting to paint a complete picture. I'm starting by dusting off an incomplete account I wrote a couple of years ago, and which has been posted to the Stanford University Medical Center web site. Even though the story was written after my first transplant, the account was not even completed through the transplant experience. This reflected a couple of things: first, that, for a while, I was living relatively free of complications of my liver disease and trying to enjoy life, and secondly, I knew that the story was ultimately incomplete, as the complications that led to my second transplant were still unresolved.
In almost complete opposition to my first transplant, where it seemed that almost everything that could go wrong, did, everything in this case seemed like it couldn't be better. Having lived through both of these experiences, I have a somewhat unique opportunity to present a 'full-spectrum' picture of the liver transplant experience. The whole cycle has also given me some particular perspectives on some issues affecting all organ transplant candidates, most particularly the very topical question of organ allocation. All in all, the "Easy Way" is certainly preferable to the "Hard Way," unfortunately, we don't really get to choose which way it goes down. And although the hard way described here is pretty hard, I hope the underlying tone here is optimistic. A positive attitude is the first requirement; so is taking it one day at a time. I'm not sure I would have signed up if I knew all that lay ahead, but I'm glad I did.
One final thing before getting underway -- I want to express at this point a blanket debt of gratitude to everyone at both institutions where I was transplanted -- Stanford University Medical Center (now UCSF Stanford) and UC Davis Medical Center -- for the fabulous, lifesaving treatment I received in your care. These people are all heroes of mine. If I complain or kvetch here or there, this is simply part of the story and is not to be taken to heart, as it certainly isn't by me. I also want to make clear that, although this is the story of the "Hard Way" and the "Easy Way", and each case is associated with a different institution, the fact that Stanford is associated with the "Hard Way" story is no negative reflection on them: my case was a hard case, and the primary factors that led to the complications I experienced were largely out of their control. The second case was in many ways easier, starting with my overall good general health status going in. At the same time, this shouldn't detract from the absolutely first-class performance at UC Davis either.
But let's begin at the (more or less) beginning.
I had just moved into the San Lorenzo Valley area near Santa Cruz in 1989, when a semi-routine blood check revealed abnormal liver function (i. e., elevated liver enzymes). Hepatitis A and B were eliminated, and I was told that I had non-A non-B hepatitis "although by next year they'll have an antibody test for it, and it will be called hepatitis C."
There didn't seem to be much I could do about it - and maybe it won't be a problem, or at least "not for 10 years or so." The only thing to do, in the case it developed to end stage liver disease, was to get a liver transplant. Which at the time, sounded like the worst thing in the world happening. My image of liver transplantation was that it was extremely risky, with six-month survival at something like 50%. Well, I was a little out of date. Current one-year survivals at the best centers hover around 90%.
Over the next five years, it was mostly a wait-and-see approach. My blood levels were monitored every six months; every year, I had an ultrasound to see how my portal circulation was doing. Portal hypertension was diagnosed. When the antibody test became available, my diagnosis was confirmed, and my gastroenterologist decided it was time for a liver biopsy. The report described my liver as "pre cirrhotic," with signs of fibrosis and necrosis present. At one point, my doctor told me he thought I had a 75% chance of requiring a transplant, "but let's focus on the 25% chance for now." I appreciated this positive focus. Although I was anxious to explore whatever therapeutic approaches might be available, I did not at that time educate myself about liver transplantation. I did do a course of interferon, which was ineffectual. Interferon is currently the only available protocol for treatment of hepatitis C; it produces a favorable response (remission in elevated liver enzymes) in only 25% of patients, and elevated liver enzyme symptoms tend to recur on discontinuation of treatment. (On the other hand, I have a hepatitis-C positive friend whose disease was activated by chemotherapy for (unrelated) lymphoma treatment; after his cancer went in to remission, he received an aggressive course of interferon treatment; his enzymes are normal now.)
During the year before I was listed (in September of 1994), I had a series of gastroenterolgical complaints, most notably chronic diarrhea and recurrent stomach (or biliary) colic.
As it happened, the development of a diagnosis end-stage liver disease (ESLD) from these symptoms and other clinical signs was only formed when my blood counts and clotting time went way out of bounds. In reality, I had been suffering from the ESLD for months. I later learned listening to other people's stories that in general it seems that it is often difficult to pinpoint the stage at which ESLD has been established, and that even though in retrospect I might have wished for an earlier diagnosis - and an earlier listing - on average I suppose I was luckier than many. End-stage liver disease describes the entire syndrome that occurs when the liver begins to finally fail - a process that can take several years, that can be somewhat managed medically, but which, inevitably, leads to total liver failure and death; the only therapy is transplantation. ESLD can be caused by any number of factors, such as: chronic viral infection (hepatitis B or C), alcoholic liver disease, autoimmune disease, or due to congenital liver defect.
My overall health gradually deteriorated, and a combination of ignorance, denial, and a desire to tough it out made the ultimate diagnosis come a little later than it might have. In retrospect, knowing what I do now, I see that I suffered from a number of symptoms such as muscle wasting (due to impaired nutritional function), readiness to bruise (due to impaired clotting function), irritability and readiness to anger, and increasingly, fatigue. Just recently, I realized that a vomiting episode I had nine months prior to listing was almost certainly due to a gastrointestinal bleed, which fortunately resolved on its own. (At the time I thought I had a stomach bug.) From a clinical viewpoint, I was thought of as "asymptomatic" for a long time - that is, I lacked the gross symptoms of liver disease, such as ascites (fluid buildup in the abdomen) and (frank) GI bleeding. The so-called "subclinical" symptomology is subtler, but very real, and very frustrating. At that time in my life, I was in a particularly stressful work environment, and my basically undiagnosed health issues were making it very difficult to cope effectively; my behavior became somewhat erratic, and the stress no doubt contributed to general decline I was undergoing.
Finally, when having my blood tested for my annual physical with my internist (who was in the same practice as my gastroenterologist), it was learned that my blood count was 50% of normal, that I had an enlarged spleen (that was "sequestering" a large volume of blood cells) and that I really needed to talk to the transplant team at Stanford.
At that time, the liver transplant program was still new, and they had only performed about 35 transplants. (By the time I received my transplant, this was to change dramatically: almost the entire Liver staff from the top-rated and very experienced California Pacific Medical Center team came to Stanford.) When I had previously been to the Stanford GI clinic (for the interferon treatment), the program hadn't even started up. I was seen by Dr. Garcia, who had seen me once previously when I participated a few years earlier in an (unsuccessful) interferon trial. He listened to the catalog of symptoms, pointed out how gaunt my face was becoming, and gently suggested that I might want to "think about" being evaluated for a transplant. At the time, I still needed selling on the idea, and didn't see how all the symptoms tied together to indicate the onset of ESLD. One step led to another, and the next thing I knew I was being evaluated for transplant.
Within two weeks of my evaluation interview, I was back at the clinic. I had developed terrible chills and fever, and a pain in my lower back whenever I drove long distances (like the hour and a ten minutes to the clinic). The onset of these symptoms fortunately coincided with a scheduled clinic visit, and it was very quickly determined that I was in all likelihood suffering from SBP - Spontaneous Bacterial Peritonitis. I was admitted, and this proved to be the case. SBP occurs, in part, because of the buildup of ascites or abdominal fluid provides an attractive host for bacterial infection.
SBP is considered a somewhat ominous indicator; it first of all shows that the advance to ESLD is very progressed; because it can easily progress (as it did in my case) to a systemic infection, it presents an immediate acute risk. Fortunately in my case, the condition was effectively managed via intravenous antibiotic treatment, that were completely effective; my hospitalization lasted seven days, and I was discharged with a PIC line (peripheral catheter) allowing me to continue my IV medication at home for another week.
Based on statistics from the early nineties, at any rate, pre-transplant SBP is correlated with a significantly lower post-transplant patient survival. I believe that if the SBP is successfully managed and a transplant is received in a timely way, it is no longer necessarily as ominous; however, because of the depth of liver disease it indicates, it is now a qualifier for the new '2B' listing status -- not hospitalized, but higher status that other non-hospitalized candidates. At the time, this category didn't exist, and I was to wait a total of nine months (which nowadays, seems like a rather short time).
Being hospitalized did a couple of things: first, it made me realize that I was really, really sick - people who's bodies are functioning normally (or even semi-normally) simply don't have the stomachs blow up like water balloons. From resisting the idea of transplant, I was ready to embrace it - only now I learned I'd have to wait, maybe a long time, to get it. On a practical level, being in the hospital also enabled me to quickly finish some of the outstanding items in my evaluation process. Finally, it was a fantastic relief to be in the care of people who obviously were intimately familiar with all the shades and nuances of end stage liver disease symptomology. Unfortunately, even gastroenterologists who are not hepatology specialists simply don't see enough cases to make them sensitive to all of the symptoms of ESLD onset. Worse, a huge number of practicing primary health care physicians are grossly ignorant of the symptomology and treatment of liver disease, based on the patient stories I hear in support groups.
For a few months after my discharge, I was doing generally much better, with renewed energy and a renewed confidence in my own restorative powers; I was being managed much more closely, and the gross ascites of the SBP receded somewhat thanks to diuretic therapy and a salt restriction diet. But although I was being managed more aggressively and attentively, the progression was quite definite; the ascites progressed slowly, fatigue continued, progressing into 'sleep reversal' -- exhaustion during the day, inability to sleep at night -- and my ability to concentrate and short term memory deteriorated (encephalopathy, due to elevated serum ammonia).
I was now facing the wait. There is one good thing to be said for the wait, is that it gives you some time to come to grips with what is happening to you. The removal of a vital organ and its replacement with that of a deceased fellow human is a somewhat awesome thing to contemplate. For myself, it required that I work through a number of questions and issues.
The one that hit me first is what I call 'anticipatory survival guilt'. Survival guilt is the phenomenon of survivors of a great, irrational catastrophe in which many died, and some (loved ones) lived. Those who live ask 'why me?' and can be plagued with feelings of unworthiness. Of course, the purely rational approach is to coldly regard the donated organs as cast-asides of the inevitably doomed. Yet the psyche will tend to transpose the situation to a zero-sum proposition: someone else is dying, so that I can live. If you have a developed sense for the role of destiny in human life (whatever you define under that heading), it requires a deep confrontation with one's own destiny to realize that, indeed, one's own destiny, one's own seemingly life-threatening illness, is on a separate track, if you will, from that of one's potential donor. I found it important for my psychic health to put myself in the position of wishing positively that, whoever, my donor may ultimately be, that they find every opportunity to fulfill their destiny -- whatever it may be -- and that my need not actively interact with their fate. This may seem extravagant to some; it was very real to me.
During the last two months before my transplant, I began to do very poorly, I was virtually bedridden, or when, I could muster strength for a brief outing (such as a clinic visit), I would pay for it with days of total exhaustion. My encephalopathy progressed to the point where I was experiencing (not totally unpleasant) disassociated states, where I was becoming detached from my body. I began to accept the idea that I might not make it, especially since it seemed that I might still be several months away from reaching the top of the list.
I had several conversations with my doctors, trying to make clear to them that I didn't think I would be able to hang on very much longer. My ascites became refractory to treatment via diuretics, and I had my first paracentisis procedure - where the abdomen is pierced, and the ascites is drained off. They drained three and a half liters; this provided great relief, as the strain on my diaphragm had made breathing difficult. However, it was really just a further bad sign; ascites typically recurs within a week or two after paracentisis.
Nevertheless, it provided me with a 'breather.' A week later, I awoke feeling a bit better than usual; I awoke to fix myself an omelet (very unusual for me) and to breakfast with my family before they left for school. I went back to lie down and watch television, fell asleep very quickly only to be awoke by a phone call. It was Stanford; however, it wasn't my usual nurse/coordinator. I asked if she was out sick today, if this was the reason the other was calling: no, she said, I'm calling because we have a liver for you. Well, at first I simply couldn't believe it. I told her I'd be there in two hours, got off the phone, and tried to beep my wife (she was at her morning aerobics). Then I called my parents, then my wife came home, then I stopped at the kid's school to say good-bye again, then I was at Stanford, starting the prep for my transplant. I met with Dr. Garcia, and with Dr. Waldo Concepcion, who was to perform the surgery. This was my second meeting with him; the transition from Cal Pacific was just underway, and mine was one among the first half-dozen procedures performed at Stanford by the new (to Stanford) team.
By the evening, I found myself in the 'Adult Holding Room' outside the OR. A nurse was there, making various medical-bureaucratic notations and fussing over this and that. My wife peeked into my file: there was a 'preoperative psychological status' check sheet that had three options: Calm, Appropriately Anxious, and Agitated. Mine was checked 'Calm'. Really, at this point, one is quite ready to hop on the table and shout 'do me!' The anesthesia resident came and placed a second IV line (he didn't like the one placed earlier); some Versed (lovely stuff for the situation) was administered.
Soon I was kissing my wife good-bye and being rolled into the OR. Although I at any rate was generally curious about the OR environment, the prone posture and lack of spectacles at this point made it rather difficult to take it all in; they are rather quick about getting you in position and under. They moved me on to the table; there was some futzing about because I had apparently lay on top of something the wrong way. Within two minutes, they had placed the oxygen mask over my face; I was breathing the sweet pure oxygen, the resident was talking to me deliberately and reassuringly: he placed his fingers on my throat, as he described, and pinched while induction began.
Really, the next thing I knew, I was coming to in the ICU. My eyes barely opened, if they did, I could barely 'see', I was still so knocked out: but I knew where I was, I knew I had come through. I couldn't speak, as I was still intubated, as well as having an NG (naso-gastric) tube placed. I made some sort of 'I'm OK' gesture; my wife was there, as well as the ICU nurse and some of the medical team -- one of the residents, the Physician's Assistant, the anesthesia resident. I came in and out over the next few hours, my parents also arrived from the east coast fairly soon. At some point, I gestured for something to write with: I tried to scrawl 'piece of cake', but in my narcotized state, I kept writing each letter on top of the previous -- I couldn't advance the pen. I tried again, and this time managed to communicate.
Sometime during the first postoperative day, within the first 12 hours, I believe, I was extubated and was able to talk. I don't really recall what I talked about, other than I was terribly, terribly thirsty. Unfortunately, even drinking is basically disallowed until the NG tube is removed and your bowels have begun functioning again -- between the insult of surgery and the morphine, they basically stop still for a couple of days. Farting then becomes a very big deal, much to be hoped for. The best they have to offer in ICU is a pathetic lemon/glycerin swab, to 'lubricate' your mouth, or a very strict 15cc per hour of ice chips. The concern is that, with your bowels immobilized, filling the stomach will lead to vomiting -- very undesirable when you've just had you guts ripped (well, cut) open.
Very early after coming to, I felt that my whole left arm and shoulder were asleep. I felt as if my arm had somehow been folded under me -- rather like a shirt sleeve that has just been pressed and folded. I struggled to roll off of it, or to be moved off of it - and found that, in fact, it was almost completely paralyzed and virtually insensitive. This was somewhat upsetting. The surgeon came round after a while, saying 'Oh yes, I've seen this before -- "Dead Fish Syndrome"' -- reassuring, isn't it, that they have a clever name for it. More technically speaking, it was presumably a 'stretched nerve injury'. I don't really have a super clear idea of this, but it comes about during the extended immobility of the arm -- which is stretched out on a side table -- during the procedure. The neurology resident came round, poked me a few times with needles and such, and said "Yeah, I guess it's a stretched nerve injury." Later, the neurophysiology attending came around, with the usual cadre of residents and medical students. The whole feeling here was a bit more like the point of the visit was to demonstrate a stretched nerve injury than to do anything therapeutic. Actually, there isn't much therapeutic that can be done other than let it heal. Someone from occupational therapy came around and made a splint, mostly to keep my wrist from flopping side to side and injuring myself further. Within the first 24 hours, I did get some function back - I could move the arm, and I had a grip in some dimensions. One of my friends came to visit in ICU who had a touch for accupressure; he found a point behind my left shoulder which he held for a VERY long time; it provided great relief, and seemed to block the 'noise' from the injury sufficiently to allow me to tune in on the non-damaged pathways. I believe this was very instrumental in my early partial recovery of function.
The paralysis of my left arm led to my first of a number of 'refusals of treatment'. This is a very important thing to learn to say: if something is happening that you think is very wrong, you need to be able to say very directly to whoever is doing it: "Stop: I refuse treatment." They really have to stop and sort out whatever the problem is, unless of course in their medical opinion to stop at a particular point would be immediately detrimental to your health. Obviously, it's not something you do lightly, but, really, you need to provide feedback from you're point of view. The situation was that I was getting an X-ray in bed via the portable X-ray machine (they had just replace my central line and wanted to make sure it was properly placed). This involves elevating the bed and placing a film plate behind your back. If you are unable to sit up, it requires that the technician sit you up. During the first attempt, I tried to explain to the technician that, if she took my left hand, she was going to have to be responsible for it -- for where she put it down, for instance. I apparently didn't quite communicate the situation clearly (although the other technician present seemed to grasp that special handling was needed) -- she lifted my left arm, and then more or less dropped it, or pushed it, or whatever -- leaving it in some painful, hurtful, uncontrolled place where it just flopped away. I naturally got angry; she got defensive, I told her to get lost. An hour or two later, another technician came up. These outbursts are inevitable; one should try not to make too much of them, one should try and be sympathetic and apologetic to the next worker: but one should not allow oneself to be mishandled, and sometimes it is necessary for one's psychic survival to dump the 'blame' for a situation on someone expendable to the situation in order to facilitate getting on with things.
A side note is that somehow I became aware of an event that was just happening at the same time (it is now the morning of May 25, 1995) -- I'm not sure if it was from the TV on in the ICU (was there one?), or from the nurses discussing it -- Christopher Reeves experienced his terrible accident. I felt a certain sympathy with him, naturally, the both of us being in extremis -- his condition at the time was very grave, and given his prospects, I wondered if it might not be a mercy if he didn't survive. I must say how impressed I am with his recovery, limited though it is, and his incredible positive spirit and will to soldier on and not merely survive, but thrive, albeit, in a radically different form.
I was fairly well sedated in the ICU, well enough that I really had no specific pain complaints; I wasn't really tracking my medication at that point. I really suffered from the thirst and dryness of mouth and throat. I think that, for whatever reason, despite having taken on tons of crystalloid (fluid) during the procedure, my various fluid spaces were sufficiently out of balance that my mouth was a bit dryer than is normal post operatively. Or perhaps I was just more sensitive to it.
After two nights in the ICU, I was moved to the regular floor in the late evening. I had waited all afternoon for a bed to come free; by the time I got there, it seemed they were quite busy, and I was welcomed with a rather unpleasant lecture from the attending nurse about how "things were different" here and they weren't going to wait on me hand and foot, and I'd have to start doing things for myself. Well, I didn't plan on doing much of anything, for myself or anyone else, but things seemed OK at that point.
One thing immediately different from the ICU was that I was expected to undertake my own pain management. In the ICU, they seemed to refresh me with a dose of morphine on their own schedule; I had no complaint. As my preference is for as little medication as necessary (consistent with experiencing as little pain as necessary), I was perhaps a bit lax in requesting medication. But, as is fairly typical, there was little incisional pain, just general discomfort, and as I was to discover, a tendency to become agitated.
Sometime late that first night - well after midnight - I realized a little pain relief in the form of some fentanyl might be nice. I buzzed, and buzzed, and buzzed, for what seemed like an hour; I became extremely agitated, and began thrashing around in my bed (actually, I was more 'humping up and down' in my bed).
Finally, a nurse came - not my nurse either, but then, I didn't really care. I had met her briefly earlier that evening; she was quite pleasant, and I believe Filipino. As she was the first person I interacted with since becoming agitated, she was the first to experience the onset of a rather peculiar symptom -- namely, that I had begun speaking in a Jamaican-style, Rastafarian slang and accent. I wasn't quite sure where I was picking it from, it seemed to be sort of resonating from the Santa Cruz scene. I now understand it to have been an adaptation to a form of tacrolimus-induced aphasia I was developing wherein I was progressively unable to link my words together with prepositions (among other things) -- more on this in a bit. Simply put, I was totally stoned, and adapting a 'stoned' speech pattern in order to function at all. Rather unfortunately, she quite naturally wondered if there wasn't some racist overtone to this -- a sort of 'shout baby-talk at the non-anglo natives and maybe they will understand' ugly American mentality operating. She fairly tactfully queried me about it, and I tried to assure her that no, I didn't know why I was speaking like this, and it had nothing to do with her. The interpersonal awkwardness aside, it was somewhat amusing for me to observe in myself. At any rate, she came across with the stuff, and I was much better.
This was the beginning of the very major psychological symptomology I experienced as an effect of the high-dosage prograf (tacrolimus, FK506) and prednisone I was on. And at this point, the dosage was going up, because my liver enzymes were high and climbing; acute rejection was the first suspect.
Over the next few days, I began to come in to focus a bit. I took my first walk on the third or fourth postoperative day. This brought home to me the feeling of having traveled, during the operation, to the farthest reaches of the universe, and having returned from the brink -- and in so doing, having spent my entire vital reserves, save for one last penny. It was the feeling of having swam to the beach and collapsing, unable to swim another stroke.
My physical condition was really miserable. I did manage to see my children, I was wheeled out to the lobby in a wheel chair, all shrouded and masked. A day or two later, I got a good look at myself in the mirror, and was terrified, and was determined NOT to let them see me again until I looked better. The upper half of my body was absolutely skeletal: the edema, a symptom of ESLD, was gone, and the extent of the muscle wasting was now evident. Below the line demarcated by my lateral abdominal incision, however, I had a huge amount of fluid, mostly taken on in the surgery. I was like a giant bladder of water below. (This included, of course, the notorious 'football sized scrotum effect'. This is somewhat distressing, and you'd think they might give you a 'heads up' about it during your pre-transplant orientation.) I was very jaundiced, more so than pre-transplant. To top it off, I had an absolutely crazed expression, radiating the wild energy of a roaring prograf toxic psychosis. I looked like some kind of new age Frankenstein monster.
Fortunately, I had experienced somewhat similar states in my misspent youth, and I was able (in my mind anyway) to maintain a rational thread side by side with all kinds of wild psychic goings on. The two most marked effects were an aphasia (mentioned earlier) that made it very difficult to form complete sentences. I dropped the 'rasta' style and switched to what I call a 'telegraph' style of speech -- I would simply speak in absolutely minimal terms. Some people found this very disturbing, others seemed to enjoy its spartan simplicity. Trying to speak, in English, was like trying to speak in German or French, which I know only very very poorly. Things got more extreme as my dosage kept going up, I believe at one point I was taking 14 mg twice a day -- this is a huge amount. When I complained of the psychological effects, my surgeon smiled at me and said "Good! That means its working." Oh well.
After a couple of more days, it was pretty clear I was getting nuttier. Finally, one of the other surgeons took mercy and gave me a 'prograf vacation' -- I skipped completely my evening dose. However, the fun continued and the aphasia reached the point where I would simply stop speaking mid-sentence, unable to continue until I physically 'kicked-started' my mouth by stroking my cheek. I suppose there was some kind of mind/body disassociation that the stroke on the cheek helped overcome by reestablishing a sense of connection.
Since the enzymes continued elevated in spite of the high-dose prograf, a round of procedures began: liver biopsy (delightfully, post-transplant you really can't feel this at all - well, hardly); an arteriogram to check out my hepatic artery; cholangiograms; ultrasounds. Quite tiring. Anyway, based on the biopsy, it was determined that I wasn't experiencing rejection, 'only' preservation (or 're-perfusion') injury. This is injury due to the prolonged ischemic time (time when the organ is without a blood supply, and hence, oxygen) my donor organ apparently experienced. I had queried earlier and learned that the total ischemic time my donor liver experienced was 18 hours. I knew then that the nominal maximum preservation time was 24 hours and had been somewhat distressed initially. (The procedure itself was 14 hours, and I was only re-perfused toward the very end of it). Stanford seems to have a meticulous but slow surgical style in general, and my case was I believe a bit more complicated than ideal due to my advance liver disease. The notion of 'preservation injury' refers to damage incurred during the ischemic time; 're-perfusion injury' suggests that the real damage happens when the organ is re-perfused, 'wakes up', and starts dealing with/producing toxic products of the ischemic period. The net is basically the same.
The spin was optimistic. The liver will recover. I honestly don't recall if mention was made of the real problem in preservation injury, namely, biliary tract injury. The liver parenchyme -- the liver tissue proper -- is extremely forgiving and regenerative. It is this regenerative quality that makes ESLD manifest in the mode of cirrhosis, which is really the scarring left from innumerable cycles of damage and restoration. (We really shouldn't complain about cirrhosis, as the alternative is simply much more rapid organ failure). The problem is the biliary tract, the network of ducts that permeates the liver and which is ultimately in contact with every liver cell, draining bile into the gut. This network of ducts is made of tissue that is basically normal epithelium, skin-like tissue, that is much less forgiving and prone to scarring.
Meanwhile, I was still having fun with my prograf. Quite often I would wake with a real start, not sure where I was, or whether or not I was dreaming. I fell asleep to a Perry Mason show, and awoke a short time later believing I was in the middle of a murder mystery taking place at the hospital and in possession of some very definite information or clue. It would take several minutes to orient myself to the actual situation. This episode was probably influenced by the fact that there was convict under police guard in the room across the hall from me; he was handcuffed to the bed, and always arguing with the guard over what TV to watch. Apparently the guard felt that this was a matter for his discretion; ultimately, one of the nurses straightened him out. I found his presence disturbing -- what was he in for -- and this become somewhat of an obsession for a while.
Another night, I had a full-blown waking dream fugue. I imagined I was a 'reindeer person' -- somewhat like the 'cat people' of the movie -- and that members of my brood would, on some 100-odd year cycle, break out with 'reindeer fever'. My consciousness was transferred to the herd-mind of a stampeding herd of reindeer, thundering down from the snowy, Scandinavian north in a mad mating frenzy, tangling horns and hoofs together in an orgy of wild reindeer lust. The problem was, reindeer fever was fatal; in my extended awareness, I had a vision/memory of an ancestor dying in the primitive rural American south, in the last century, of 'reindeer fever'. I became very agitated, and began thrusting my hips up and down in bed (despite the sexual overtone of the reindeer stampede, I wasn't sexually aroused per se myself, just super agitated). I was vaguely aware of being in the hospital, and thought, the doctors should really come and study this, I know they won't be able to help me, but maybe they'll learn something. Meanwhile, I was being sucked deeper into the wild reindeer group soul. As I was thrashing around, I began to come into a kind of rhythm, and I felt I was suddenly getting in touch with my 'inner reindeer shaman' (yes, I won't be offended if you reach for your barf bag now), and that I would be able to recover. I raised my crippled left arm up, continuing to thrash around. I was reaching for something.
Meanwhile, the nurses assistant had come in and was apparently somewhat terrified herself by the spectacle I presented; she quickly ran off for the nurse. The nurse was this really pretty wonderful woman of a certain age who I had chatted with a bit a day or so earlier and had spent half the day trying to guess her nationality. She had this sort of Teutonic 'ordnung' to her coupled with a sort of continental 'savoir-faire'. I think I wound up guessing she was French Canadian; she was Belgian (forced to learn German as a girl during the war, BTW). Anyway, she simply came in, put her hand at my side, looked me straight in the eye, and said -- using 'the voice' -- 'Put your hand down!'. Well, naturally enough, I did, and started calming down a bit. She spoke with me for a minute, then said she had to run off and see another patient for a minute. She flashed a foil package in her hand, through which I could see the outline of a suppository. Although I doubt this was her intent, it communicated a subtle 'Ve have vays of making your cooperate' message. Good show, really, on her part. Pretty weird, hunh?
The other, really nice powerful feeling experienced - amplified no doubt by the prednisone, especially, was the overwhelming feeling of being loved I felt from time to time. Cards and calls and good wishes seemed to be pouring in, especially from far-flung family, folks I had barely thought about really in the longest time, and many others as well. I learned that church groups all over were praying for my recovery. I had the very distinct feeling of how absurd it was for anyone to every feel that they were alone or unloved, because I was feeling an ocean really of love and caring pouring in all around me, and it seemed like it was always there and I simply hadn't noticed. I wanted everyone to feel this, but I didn't want them to have to go through what I did to feel it. In sober hindsight, even though I don't think I will ever lose that feeling, I can see that barriers exist everywhere for many (most) people to feel this.
Even though I only knew that my donor died of a brain aneurysm, that he was 56 (or 54 -- I never got it straight) years old, and came from the Sacramento area, I began to think about my connection to him. I had said above that, pre-transplant, I had striven to feel that my and his destinies were on two distinct tracks. Now, however, the situation was completely reversed; we were somehow wedded in our future destinies. I contemplated, consistent with my own beliefs in the afterlife, his destiny as his spirit pursued its course into the divine -- a course which inevitably implies a confrontation with the moral effects of one's deeds. And here I felt a profound desire to intercede, in some way, to 'stand' for him before the judgment of the world, before the judgment of his maker. And here is the great responsibility: in somehow sacrificing himself (or, if you prefer, a part of himself) so that I may live, it becomes incumbent on me that my life reflect to his credit.
Well, anyway, day by day I did better. My medications were expanded beyond the usual Prograf - Prednisone - Zovirax - Septra - Nystantin, etc., to include Actigall - to thin the bile (anticipating a problem with preservation injury in the bile ducts), and persantin and aspirin to avoid clotting, as it was determined that I may have some problem with my (hepatic) arterial vascularization. On about the eighth or ninth postoperative day, I was able to take my first shower -- this was wonderful. My surgical drains had all been removed, my only appendage was my T-tube. I began to suffer from fussier little complaints - like, the old-fashioned desktop phone sets were ridiculously heavy for someone with my very limited strength and mobility; the controls on the bed required contortionist skills to reach with my limited mobility, etc. Really, the ergonomics of hospital beds and accommodations leave very much to be desired from the point of view of the patient recovering from serious trauma. For the healthy person, everything probably works just fine.
Really, almost from the first day, despite the problems with the preservation injury, my new liver was functioning much, much better than my old one, and I could feel it right away. At the end of the first week, my eyes were clear, my head was clear (never mind that it was buzzing, it was nonetheless clear).
At length -- that is, on my 10th postoperative day -- I was discharged. I spent the next week at a local motel, attended primarily by my parents, who took the room next to mine. (That's a whole other story.) The only medically remarkable thing about this period was I developed a leak in one of surgical drain wound sites. I still had quite a lot of fluid, and the leak would spout out of my belly in a long stream, rather like I was peeing. It was somewhat alarming, but not particularly serious; the next day one of the residents stitched it up tighter. I was still fairly loopy and agitated, I didn't really have anything resembling a normal sleeping pattern for a couple of more days.
I went home to continue my recovery. I was still quite weak, but my water was starting to disappear, and I was beginning to enjoy having a new life. My prograf level was much reduced, and I was quite enjoying being able to concentrate enough to, for example, read more than a paragraph in a book. I began to take walks to town, go out for meals, see friends. I remember being still rather frightened of things like barking dogs, and easily panicked by unnerving traffic situations (as a passenger) -- this is the 'thin-skinned' effect of Prednisone. My arm was still a problem, I still had the splint, and it was hypersensitive to touch and temperature. I began physical therapy, and acquired a TENS (Transcutaneous Electric Nerve Stimulation) unit to help with the pain; I also tried elavil for a week or two, which was alleged to help with the pain (that is, if it didn't make it worse).
A week or so after I came home, I stopped by the pathology lab after one of my clinic visits. The new surgical team was big on having recipients view their diseased livers. The lab itself was kind of new to this idea, but they cooperated. My then five year old son was with me, and together, we saw my liver - sectioned and preserved. If you're interested, I've got pictures.
About a month after the transplant, I began to notice a sharp feeling in my fingertips, which I mentioned to my hepatologist. He remarked it without comment. Later, after a day in the sun (yes, I know there is an increased risk of skin cancer when immune suppressed) I seemed to develop an extreme sunburn. However, it was peculiar in that it seemed to really be all over, and not really associated with a reddening of the skin. I complained of this to my coordinator, who really should have known immediately what was going on: I was experiencing acute pruritis (itching) consequent to obstructive jaundice. It didn't manifest as 'itching" (rather than 'burning') for a couple of days; at that point, I found myself back in the hospital, having a cholangiogram (a radiologic study where they inject radio opaque contrast solution into you biliary system via the T tube). This disclosed a stricture at the anastomosis, that is, at the point where the donor bile duct was grafted to the other end of my bile duct. They then performed another arteriogram, to determine if the stricture was due to poor arterial blood supply to the duct. I was readmitted; this was about six weeks after my transplant. By this time, I was itching like a fiend.
The next day, I was taken to an interventional radiology suite where they were going to attempt to dilate the duct, stretching open the stricture. For some reason, I had the impression that this was all going to be done via the T tube; the procedure began with some manipulation of the tube - placing a wire - that seemed to be proceeding somewhat problematically. Anyway, they completed this part and then proceeded to the really fun part -- the endoscopic procedure.
An endoscope is a fiber optic tube that is jammed down your throat and allows manipulation and visualization of your guts -- at least as far as your bile duct, and with a 'retrograde' endoscopic procedure, they can turn it around and tunnel back up your biliary duct. Pretty amazing, really. But not pleasant at all. A healthy dose of Versed was administered - about 5 mg -- Versed is a diazapoid drug, like Valium, which has the special feature of inducing amnesia. According to the literature, over 75% of patients who receive an appropriate dose of Versed do not recall the 'introduction of the endoscope'. I, however, am in the 25% case in this situation, and I remember it all too well. One lies on one's belly (difficult, post-abdominal surgery); a cute little 'bit' is placed in your mouth with a large tube in the middle. It is difficult to avoid the imagery of the blow-up sex doll at this point. Next, the doctor whips out from behind his or her back the endoscope, and deftly jams it down your throat. Needless to say, this provokes quite a gag reflex, however, it is already halfway down your gut before you can do much about it other than, as they say, 'breathe deeply'. At this point, mercifully, I lost memory or awareness.
When I came to, I knew something was terribly, terribly wrong. I had severe gastric distress, nausea, bloating, cramping. It was really unbearable. I was taken back to my room, where I recovered somewhat; it was opined that the likely culprit was pancreatitis, an inflammation of the pancreas in response to the manipulation by the endoscope. As I had been NPO (nothing per oral, no food preoperatively), I was quite hungry in spite of my GI discomfort; food was brought, which I very quickly vomited all over the attending resident. She was however rather nonplused by this, and the pancreatitis theory ruled the day for the next 24 hours.
During this time, my discomfort increased. The itching recurred as soon as the sedation wore off, but I managed to get enough pain killer and sedative supplied that I could be dosed with something or other every two hours. The GI distress continued unabated. The procedure had apparently been a bust, correctively, as the anastomosis was deemed to be too fragile looking to sustain a dilatation. By the middle of the second day, the team had fairly well concluded that something else was going on here other than your garden variety pancreatitis. My surgeon, who had seen my on rounds, promised to check back in in the afternoon.
Meanwhile, my wife, who had been faithfully and worriedly waiting by my side, noticed - during I suppose one of my fitful periods of rest -- that my pulse was extremely elevated, e. g., around 150. This must have been a sudden development, as I was of course having regular vitals taken (every four hours). This provoked a rather quick response; my surgeon was paged immediately, and I was moved to the ICU.
This part was not very fun at all. They placed an NG tube first, I think -- I've had several placed consciously, not very fun but tolerable if you cooperate and swallow a glass of water while it's inserted. I was too far gone, really to object to this in particular; they then used it to introduce GI contrast for a abdominal CT scan. It seemed to be rather late by the time I got the CT scan, I was probably passing in and out of consciousness. I was in total agony and just wanted to sleep rather than tolerate the moving around on the scanner bed, the injection of venous contrast, the holding the breath. Really miserable.
Eventually, I was back in the ICU; they decided to insert a Foley catheter. This really spooked me, but again, I was so far gone, and they just whipped it in, that it was over before I could resist. Next they told me my O₂ (oxygen) saturation was bad, that I was breathing hard (this due to my stomach distention), and that they wanted to intubate me. NO NO NO I said, and I resolved to prove to them that I could breath just fine, and I concentrated very hard on breathing deeply, painful as it was. This probably lasted about a minute, after which I don't remember anything. I'm sure at this point, they must have dosed me, almost certainly with Versed, as, although I have no memory of it, I later learned that I had quite an interaction with them on the topic of intubation, directing them to call my wife so that she could explain to them that I didn't need to be intubated. They were apparently sophisticated enough to humor me to the point of actually calling my wife, who proceeded to direct me (per their prompting) to allow them to intubate me, which I apparently then did. Hmmmn.
What I next remember is waking up surrounded by doctors, my wife, parents, ICU doctors and nurses: I had just had a fairly urgent surgery to repair what was a bile leak caused by the endoscopic procedure. They opened up the right side of my Mercedes incision, cleaned up 3 liters of bile ascites, and put a stitch in my duct. The previous 24 hours were a blackout to me and the whole thing was somewhat touch and go at some point.
The ICU experience was very strange; because I needed intensive observation, including by the ICU physician, I was in a common area rather than a private room. I was only semi-cognizant of my surroundings, but there was definitely an older man very much 'circling the drain' as they say, also it seemed some medical worker (a nurse) had experienced some extreme medical mishap and was now in critical condition - maybe a stick with some highly infectious agent. I also remember a feeling of drifting off, or away, on a morphine-induced cloud -- actually, swimming out into the ethers. I distinctly remember being met by a being swimming towards me, pushing me back. For various reasons, I interpreted this as the presence of a friend of mine who had died almost twenty years earlier and who had once swam across a large reservoir and frightened me half to death thinking he wouldn't make it.
My recovery proceeded pretty well after that, I was on TPN (total parenteral nutrition) for the rest of the week; I had lost all of the weight I had gained post-transplant, and then some. This was the beginning of a nutritional problem that ultimately became rather troublesome. However, the manipulation of my duct seemed to resolve, temporarily, the obstruction, and I was relatively symptom-free at the time of discharge.
However, the belief was (and it was correct) that the problem would soon recur, and that best available remedy was a bile duct reconstruction, or roux-en-y, surgery. This involves sectioning the intestine, creating two 'limbs,' pulling up the lower limb towards the liver where the stub of the donor bile duct is grafted to it, while the dangling upper limb, from the stomach, is sewn on to an incision in the lower limb of the intestine, restoring the pathway for the digestion. This is part of the standard surgical bag of tricks, and is routinely used in re-transplantation.
Although not too keen on the idea, I basically wanted to deal with it before it became a problem. One round of full-blown, full-body pruritis is enough of a negative motivation to consent to just about any alternative. As it happened, however, the symptoms did recur before the procedure was scheduled; from an overall health status perspective, it is not terribly urgent. The itching is absolute hell, however. There are various degrees of itching associated with liver disease: I'm talking here about the extreme degree, round the clock, tear your flesh out itching. But more on this delightful topic later.
Prior to scheduling surgery, the doctors wanted another cholangiogram. This struck me as somewhat redundant; I had a recent one, we knew there was obstruction. Anyway, a 'study' was scheduled. This word 'study' when blithely used to describe what is in fact an invasive procedure is one of the more annoying forms of medical double talk. The overtone here is that one will simply be 'examined,' -- visually, as it were, or at most, radiographically. Actually, in my case, with my T-tube gone - a victim of the laparotomy to repair the bile leak -- they would need to insert a needle into one of my ducts, hence the name of the procedure, 'Percutaneous Transhepatic Cholangiogram' or PTCH. Under conscious sedation (Versed/Fentanyl combo) and guided fluoroscopically, a needle is introduced into the liver, between two of the right ribs, on the side. It is aspirated (suctioned by withdrawing a plunger) until bile is encountered: this indicated that a bile duct has been breached, and contrast is introduced, allowing the entire biliary tree to be visualized via the fluoroscope.
So much was explained to me, and as far as this went, the procedure, while not exactly fun, was tolerable. However, it was decided that a drain would be placed to keep access open, allow for possible future manipulation of the duct, and drain the obstructed bile flow. The question of allowing for future access was somewhat moot, as in the middle of the procedure one of the surgeons came in, looked at the film, and told me that they would be keeping me in the hospital over the weekend (it was Friday), and would perform the roux-en-y Monday. Nonetheless, the drain was placed.
The drain is quite a bit bigger than the needle used to establish access, and it basically has to be forced over a wire inserted into the duct. It is not pleasant in any case (I've since had this done two additional times), but in this particular instance, it was awful: as the final penetration was effected, my back arched, I felt a terrible spasm up and down my spine, and my diaphragm felt as if I had had the wind knocked out of me. As we were later to learn, my diaphragm and pleural space were penetrated -- actually, a not atypical occurrence as I was told.
The spasm in my back and the feeling of having the wind knocked out persisted after I was taken to my room. I tried to get the resident to give me a Valium, as a muscle relaxant, but he wasn't authorized to prescribe them and wasn't willing to pursue finding someone who would, as he doubted they would. This was very frustrating, as I knew exactly what I needed to relieve the really terrible spasm I was experiencing. Finally, one of the surgeons came round and said "of course, give him a Valium." Duh. I should have pushed harder for one earlier, as the relief -- coupled I think with some morphine -- was almost immediate, and the spasm didn't recur when the Valium wore off.
The whole experience was rather traumatic, but come Monday, I was ready for the roux-en-y, which was to be around a four hour procedure. Induction went well, and I came to, with a fair amount of pain, in transit from the OR to recovery. The procedure went well, in general, but they remarked that they removed a large cast - a calcification - from the duct that continued intra-hepatically, that is, into the liver.
I was returned directly to my room from recovery, and started a reasonable recovery. As usual, I had an NG tube placed. I was walking around fairly soon, but I was pretty week and noticed on the second or third day that, when walking around the floor, I had an odd pain near my right shoulder that limited my range of motion. I didn't remark it to anyone, and thought it was probably a muscle cramp from lying in bed so much in my scrawny condition.
On Thursday they came to remove my NG tube. Once it was out, I was told to sit up and cough. I sat up, with difficulty, and tried to cough (I couldn't quite remember how). Almost immediately upon sitting up, I cried out from a terrible pain in my back and collapsed back onto the bed.
The surgical resident attending me examined me, asked a few questions, and came back after a minute with a large syringe and proceeded to withdraw turbid fluid from my back, that is, from the pleural space around my lungs. As a subsequent cholangiogram (this time, mercifully, I still had the bile drain that had been placed during the roux-en-y, to admit the contrast solution) would disclose, the earlier procedure had produced a fistula (opening) between my duct system and my pleural cavity; bile was leaking into the space around my lungs, causing fluid to form.
A chest drain was placed; this is a surgical drain placed into the pleural space. It drains into a special 'water lock' to prevent pneumothorax, or collapsing of the lung. It is not fun to have placed, nor to try and walk around with. This extended my hospitalization for a week.
At this point, it needs saying that this was clearly one of those medical screw-ups that one is always at risk for, and certainly the more stuff they do to you, the more likely it is some unintended adverse consequence will occur. Oh well. I was fairly angry at the time; however, one needs to keep the air as clear as possible, so I focused my resentment on the physician who performed the PTCH. I figured he was expendable, there were other IR physicians if needed.
Anyway, after a week, the drain came out (although it did have to be replaced during the middle of the week, I'm not sure why, but the drain wounds figure significantly in just a minute), and I was discharged again. As usual, I recovered for a week nearby the hospital (notice a certain pattern forming?). During this time, I was trying to eat hearty, as I was still below my best post-transplant weight. Any major surgery is guaranteed to make you lose five pounds, if not ten. Among other things, I had a few yogurt smoothies from the local juice bar. About the middle of this post-discharge week, I noticed that a small swelling had developed under one of the chest drain wounds. I mentioned this to my surgeon, who said it was just scar tissue forming (he didn't feel it - mistake on both our parts). What I failed to observe and mention, was that it was slowly but definitely getting bigger.
The day I went back home to my family, I started to feel quite lousy. I initially put it down to the effort of the long (hour and a half) drive home, but by the next morning, I was feeling terrible, with violent diarrhea (my usual signal that things aren't right somewhere). I managed to get completely dehydrated fairly quickly; the transplant office wanted me to have another X-ray done. I felt so terrible that I convinced them to let me have the X-ray done locally, so I wouldn't have to drive over the hill to Stanford. This proved to be a sort of bad idea. Anyway, the radiologists at Dominican were naturally rather alarmed at the look of my chest X-ray, although at first the consensus was that this was probably just the remnant of fluid draining off, and was actually normal for my condition. I remember feeling just absolutely at my lowest at the prospect of going back to the hospital. By Thursday (I had come home Sunday) I was due at Stanford for my regular clinic appointment. My surgeon was alarmed by my dehydration, but felt the X-rays were OK. He put me into the ATU (24-hour unit) overnight for a 'tune-up' -- hydration and observation, really, as well as stool cultures for C. Diff and parasites. The fluid perked me up a bit; when the team came round, the big issue was my nutritional state; they thought I might need to go to a skilled nursing facility to receive nutritional therapy, e. g., a feeding tube. Anyway, I was discharged, and prior to that, my bile drain was removed.
By Friday night, the swelling at the chest drain wound was getting noticeably bigger and starting to be uncomfortable. By Saturday, it was painful, and without thinking of anything other than my comfort, I instinctively applied a heating pad, which provided some relief. It also, by Sunday, had caused it to grow into a large, not quite golf-balf sized boil. At his point I called my coordinator and planned to be seen on Monday. Sunday night (early Monday, really), I awoke to a foul smell. Had I 'soiled myself' in my sleep?. Not that way; what had happened was that the boil had burst, and blood and foul-smelling pus was leaking all over my bed. This was a bit distressing; it was around 3am. I was there first thing when the clinic opened, and seen immediately.
My surgeon took one look at the wound and became quite concerned. He proceed to clean the wound, withdrawing rather large amounts of pus via squeezing and swabbing. Specimens were sent for culture. I was admitted. Suspected diagnosis: empyema, or infection of the pleural space. My surgeon wanted the thoracic surgery team to immediately place new drains under general anesthesia with a scope. They on the other hand were rather diffident and asserted that it couldn't be an infection of the pleural space, as I was afebrile, still walking around, and relatively pain-free: they thought I should be in much greater distress, and wanted to 'wait and see' -- they thought it was a superficial infection.
To the great credit of the transplant team, they weren't buying this, and were very concerned about any infection, especially of a cardinal organ, given my immune suppressed condition (I was still on prednisone and prograf at the time) and so recruited Interventional Radiology (whose footprints were all over this case anyway) to place a smaller drain via a CT guided procedure. This was undertaken. I was pretty familiar with the CT suite by this time, but hadn't had any procedures there yet. The analgesia was morphine, I lay on the table while they inserted me into the CT, with some kind of marker on my back; then they rolled me back out, and then proceeded to insert the drain. Despite the morphine, there was a lot of semi-hairy involuntary kicking and jerking as they worked the tube through my back. The findings immediately demonstrated that the infected material was diffused throughout my back pleural space and communicated with the draining wound.
Thoracic surgery were believers now, and the next day I was scheduled to have new, bigger drains placed. As I was being briefed before surgery, there was a small chance that they would have to do an 'open procedure' -- fully exposing my chest and spreading my ribs, but they expected they could most likely place the drains using a fiber scope and be minimally invasive.
As I came to, in incredible pain, I learned quickly that they had indeed performed an 'open procedure'; the first thing I remember from recovery, aside form the pain, was the surgeon and the anesthesiologist discussing my pain management. As it turns out, thoracic surgery causes the most extreme incisional pain (contrary to the transplant incision, with minimal pain). I was still deep under from the anesthesia, but the pain was cutting through like a knife. I struggled to surface to plead for morphine; it couldn't come fast enough, 2 units at a time, up to around 8 or 10 at which point relief came. I was next provided with urinal, which I proved to be unable to manage properly and proceeded to pee all over myself. I was 'seeing triple' at the time, so this is not too surprising.
It turned out that an abscess of the lung had developed, and part of my lung was sectioned during the procedure. I recovered reasonably well from the surgery; I was in for another two weeks, with chest drains. During this time,the 'Infectious Diseases' service determined that the infection was lactobacillus -- yogurt (remember those smoothies?). These guys had either migrated from my gut, up my duct, through the fistula, and into the lung, where they found a nice cozy environment, or just as plausibly, I had aspirated yogurt into my lung (I was rather frequently burping and gagging, coughing, etc., at various points in my recovery). I suspect that the site of the abscess was the result of a wound to the lung tissue at the time of the earlier drain placement.
The one good news in all this was that my prednisone was discontinued while I was fighting the infection, and it was not restarted later. Meanwhile, I was ready for discharge although I was terribly malnourished by this point, with poor appetite. I was very sick of hospital food. They kept throwing cans of 'ENSURE' at me, which I didn't drink. I've since learned that it is much more palatable when chilled (on ice is marginal, refrigerated is best). You'd think they'd figure this out. Free advice: have them chill it if you can't stand it. With normal health and a normal appetite, I can suck down three room-temperature cans in row no problem. In a bad state, it's a different story.
The upshot was that I was to be discharged to a skilled nursing facility with a feeding tube. The tube was placed by the resident on rotation -- she had never done one before, but hey, she's a doctor. Unlike an NG tube, which is semi-rigid and can be inserted and advanced by itself, a feeding tube is so soft and thin that it requires a guide wire to be placed. This is quite uncomfortable, especially if, as was done here, it is left in place for forty five minutes while it is X-rayed to determine if it is properly placed. Oh, by the way, once it is inserted, the wire can be removed and the placement adjusted without the wire. Oh well.
And so I was shipped off to Lytton Gardens, which is basically an old person's home. Stanford and Lytton Gardens were experimenting with using it for general skilled nursing care, and I was one of the early guinea pigs. I found myself there in what seemed to me at the time a really dreadful environment. Everyone else, mostly stroke victims, etc., was clearly here for the duration, and most of the staff in fact smiled at me indulgently when I told them I was only there for a week or two. Unlike the hospital, there was no phone or television, as these were personal items arranged for permanently by permanent residents; there were no 'transient' provisions.
I stayed there all of two days. The food was radically worse than Stanford, boiled carrots seemed to be a feature of every meal, and the feeding tube made eating and swallowing really uncomfortable. It seemed pretty counterproductive, although at night when the 'feed bag' was on, I will say there is a certain cozy feeling to having your tummy slowly fill up with warm nutritious mush while you sleep. However, on the second night, I was woken at midnight for my antibiotic medication and my vitals. I swallowed the antibiotic dry, because I didn't want to to cool my mouth for my temperature: however, this was not a good move as it got stuck somewhere halfway down my throat. It started to burn, but I was by now having my temperature taken and didn't want to open my mouth, swallow, etc. The feeding tube made the whole thing more uncomfortable, and the next thing I knew, I vomited -- and I looked down, and the feeding tube was in my lap. At first I had a moment of panic, I thought the tube had broken off and part of it was in my gut, however, what had happened is I had just jerked away from the pump when I vomited, and the whole thing was tugged/ejected out.
There was no way I was going to let them put another one in. This was agreed to, provided a promised to drink six cans of ENSURE a day. Yes, anything (I did comply with this). And so I went home, and spent the next month lying in bed, drinking ENSURE (or sometimes Carnation Instant Breakfast with a scoop of ice cream) and sucking down antibiotics every six hours.
By this point, Christmas is getting ready to roll around, and I am starting to feel reasonably better. However, by early January, my GGT, Alkaline Phosphatase and Bilirubin are starting to shoot up, the full-scale pruritus is back, and I'm lying once more on the table in the Angio Lab, ready for another PTCH. In deference to my earlier misfortune, it is agreed that this drain will be placed anteriorly, that is in front beneath my ribcage, avoiding any possibility of penetrating my pleural space. This was primarily an accommodation to my psychological requirements, for all I knew, I was running an equal risk of penetrating my guts. It was determined that the strictures had recurred, and now involved the intra-hepatic ducts. However, the placement went well, and this time they did a balloon dilatation, and then left the drain. The plan was to attempt repeated dilatations every six weeks. By the time of my third procedure, however, it seemed that the duct was draining satisfactorily, and a nonfunctional small gauge access catheter was placed; for the next year and a half, I was able to drain naturally, marginally well.
Just prior to this relatively good news, however, it was decided that I would be relisted as a backup. I was reevaluated and placed on the list in February, 1996.
The access catheter required revision every three months. In August, I returned to work full-time; in November, based on the continued good drainage I was experiencing, the access catheter was removed. In January, 1997, I went back to repair the hernia in my abdominal wall that resulted from the multiple surgeries; a piece of mesh was placed. I had thought I might 'take it easy' in hospital for a couple of days, but after the first night, I was ready to get out of there: I had done the hospital bit enough by then and I didn't feel like doing any more than was minimally necessary. Sometime that fall, working with the medical staff and some other recipients, I completed work on Stanford's Liver Transplant Program first web site.
Things continued reasonably well, although my bilirubin was always hovering around 1.5 and my GGT and Alkaline Phosphotase (markers of cholestasis, inhibited flow of bile) were high, around three or four hundred. Over time I noticed that, as during the onset of ESLD, any drop of urine would stain my undershorts with a bile stain.
In July I was suddenly hit with the onset of full-blown pruritis again. This was really a miserable reality for me, I hoped it signified anything other than what I knew it did, namely, that the strictures had recurred. Another drain was placed. This time I was in great discomfort for a week or two after due to the manipulation and tearing, I suppose, of much of the connective tissue and adhesions around my graft and wound during the, really terribly violent, placement of the drain. In conscious sedation, you are free of pain, but not necessarily instinctive resistance and bracing against the physical insult.
After a week, however, the pruritis returned. I had to open the external drain, and allow the bile to drain outside. They revised the drain, but again I was unable to keep it capped and draining internally. Again, I had to resort to external drainage.
Upon reviewing my films, the team decided that the strictures were generalized and that the only cure would be retransplantation. Needless to say, I was less than thrilled, but I adjusted to the idea pretty quickly. I already had a huge investment in this thing, one more surgery wouldn't kill me. Besides, the prospect of permanent external biliary drainage was not exciting at all. I very quickly lost about twenty pounds (I had between times recovered my normal weight), which I attribute to the lack of fat digestion due to the external bile drainage and the general systemic load of the situation.
I had meanwhile accumulated a year and half on the list, and I anticipated finding myself very close to the top of the list as my candidacy became 'active'. However, in the three years since I was first listed, the wait - particularly in the northern California OPO (Organ Procurement Organization) - had lengthened considerably. I was told it could be at least a year before I came up. My blood type, incidentally, is A, one of the more favorable from a listing point of view.
I continued to work full time through the fall, adapting to life with a bile catheter running down my leg into a collection bag. I managed to rig it nicely so it fit under my clothes. I drained 700-800ml of bile daily. Most of the time, I was in good shape but for the fact that I basically wasn't digesting fat and fat-soluble vitamins. However, the bile is rather sticky stuff, and has a tendency to stick (as in gallstone formation). Every five or six weeks, the tube would fail - become clogged - and I would need to have it revised back at the hospital. This became fairly routine for me, and I had it done eight or nine times in as many months. Every time it failed, however, I was liable to horrible pruritus and jaundice. I became very sensitive, and would make an appointment for a revision at the slightest hint of elevated bile salts. The IR staff at Stanford were extremely accommodating to me in this regard and I am particularly grateful. I'm not really going to dwell on it, but the full-blown itch is about as bad as it gets. Your body is intact, but your nervous system is on another planet (a not nice one at that).
In December I developed recurrent fever and chills and my bilirubin shot up to around 8. The catheterized tract is liable to infection. I went on medical leave and suffered recurrent episodes of elevated bile salts and pruritus. There is sedation available, but it basically renders you fairly nonfunctional (of course, while you're itching, you're nonfunctional anyway). The standard is Atrarax; which is 'OK,' another drug which I tried at this time was Revia - actually it's used for people withdrawing from heroin, it blocks the opium receptors in the brain, which somehow desensitizes you from itching. It's not strictly speaking narcotic, but definitely a bit weird. It's worth having in your bag of tricks if you wind up in this situation.
Having taken a definite turn for the worse, I was becoming quite anxious to go no further. Although it is possible to live for quite a long time with elevated bilirubin, it eventually does the liver in. This and the external drainage were getting to be too much. I conceived the idea of looking for a center in a region with a shorter list. My first thought was to look in Florida, where my parents had a winter home: this would give me a local support network. I thought if I found a place I would move there, bring my UNOS accumulated waiting time with me, and wait it out.
This whole question of regional variations is very topical at the moment, and Health and Human Services has issued directives to UNOS ordering changes in the allocation strategy. UNOS has yet (6/98) to formulate a response. The initial idea was to have, basically, one national list, with organs shipped cross country to candidates with highest weight (time and status). My own view is that this is not practical in light of what I believe -- admittedly influenced largely by a case of one, my own, that increase in ischemic time correlates to poor graft survival, and that the putative 24 hour viability of the current preservation protocol is an optimistic best case scenario.
Researching the best center from an average wait point of view is not particularly easy. I feel very strongly that all UNOS listed candidates have a right to know the current average waiting time, by status and blood type, at every center. This information is there in the system, it simply needs to be processed and published on a current basis. Your mileage may vary, but it seems to be a requisite piece of information in making a center selection. Of course, average wait is not the only or even the most important parameter in making a center selection.
Coincidentally, my health care coverage through my employer changed to a new carrier, HealthNet, and I wanted to speak with their transplant coordinator regarding both the status of my current approval with Stanford, as well as find out what their attitude was toward cutting a deal with an out of network (they are basically a California provider) center.
They were in fact extremely helpful, and suggested that I in particular look in to UC Davis Medical Center, in Sacramento. I had been vaguely aware that UC Davis had started a program in the last few years, but I hadn't tracked it. I checked out their web site, where I learned that they were in fact serviced by a different OPO than that which serviced UCSF-Stanford and Cal Pacific. And, as a younger less established program, they had a much shorter list. I gave them a call and set up an appointment for an evaluation. One thing they recommended, however, was that I double list, rather than transfer my time from Stanford. The reasoning here was that, should I suddenly go south and require hospitalization and urgent transplant, I would fare better in the Northern California region with their faster organ turnover. This made sense, along with my conviction that their list was really quite short.
Being double listed provoked some conflict in me. One invests a lot in the team at the transplant center; they have had your life in their hands, and, through any number of challenges, they have delivered. One can even feel that in some way one is being 'disloyal.' However, I was presented with the opportunity to possibly shorten my wait significantly. One must always focus on what is ultimately best for one's own well being and survival.
I was seen in February, and provisionally listed. In early March I returned and went through their complete evaluation protocol, in that my previous Stanford data was over a year old. By the 2nd of April, I received their letter confirming my listing. Everything was go. I felt very confident that, one way or other, I would get a transplant in the next six months, at either Stanford or Davis.
Meanwhile, I was doing a bit better. My bilirubin had gone down somewhat, the infection had resolved, and I was back at work part time. (My then employer, The Santa Cruz Operation, was just super supportive through all of this, my hat is off to them.) I had even believed I was finally getting the hang of properly irrigating my catheter to get maximum mileage out of it while minimizing infection risk.
The week of April 6 I applied for my free beeper, my acceptance letter from Davis in hand. On Thursday, the 9th, I scheduled a revision of my catheter at Stanford. Although it was pretty aggressively optimistic to think I'd be transplanted in the next six weeks, I allowed myself to hope that this might be my last go round. Supposing that, I tried to visualize that his hospital visit, with its prep, rolling around the halls on a gurney, IV sticks, etc., was actually my 'being there for my transplant'. Sort of a dry run. Psyching yourself for the big one is especially difficult given the uncertainty of the waiting list: one can only maintain heightened readiness for so long. The receipt of my acceptance at Davis had provided an opportunity to visit any second thoughts I had: after all, it is a pretty high-risk procedure, and despite having a serious disability, my condition was not immediately life threatening. However, my realization that the liver was, in the long run, not a keeper, coupled with the knowledge that I would never be healthier than I was now, strengthened my resolve. Anyway, the IR procedure went went well. That night, I was preoccupied with thoughts about the organ allocation system, which as I said was very topical and of course, very apropos to my immediate situation. The essence of my thoughts that night was that what was needed before radical policy decisions were made on a basis of institutional interest and politics, a sophisticated modeling of various policies should be conducted, and the outcome in terms of graft survival, patient survival, and some 'fairness' metric compared. Again, I feel very strongly that trying to level the playing field by increasing the ischemic time is extremely risky and liable to lead to net organ wastage. I also feel, as I stated above, that information about waiting times should be universally available. Those with the health and the means to list elsewhere or double list will, to some degree at any rate, create a natural market-like movement of candidates and donors together efficiently.
On Sunday, Easter morning, I was musing early in bed about the possibility of a transplant. My stomach was grumbling rather nastily, and I went off on a tangent thinking "Gee, I hope I don't feel like this when I get my transplant..." -- having in mind the general GI distress involved in the whole procedure. Thinking further about my pending transplant - continuing the 'psyching up' I had started Thursday and which was apparently running in the background -- I thought about what it would be like to say good-bye to my then current liver. It had saved my life. My attitude towards my graft had been like it was an adopted child, and my birth body (the rest of me!) was like my natural child; I loved them both. But switching gears, I looked at it from another angle, as detached as one might cut a fingernail off. And then I thought of my left arm injury, which was 99% recovered in terms of function, but which still had strange tingling sensation in the thumb and forefinger. I would always have that, I thought, to remind me.
Anyway, a few minutes later I was in the bathroom and the phone rang. It was around 7:30 AM. My wife called. "It's UC Davis. What could they want?" I'd been there before. "What else?" I said as I made for the phone. Indeed, it was my invitation to come get a new liver. I was instantly ready to go, my subliminal preparations having been perfectly timed.
The drive to Sacramento from Santa Cruz is about three hours. It was noon when we arrived. Prep went smoothly. There was a little concern about a rather large skin growth that had popped up on my chest; I had remarked it at my last clinic visit to Stanford. Someone from Dermatology came along and removed it and sent it off for study (it turned out to be a squamous cell carcinoma).
I was told that the liver I was going to get was very young, very healthy, and being recovered there at Davis while I was being prepped. As I was later to learn, I had moved so quickly to the top of the list because I was the best weight match for the young donor. Before too long, around 3:30 or 4:00, I was on my way to surgery. There was no holding, so I said good-bye to my wife in the hallway outside surgery. I chatted briefly with the anesthesiologist in the inner hallway, discussing primarily concerns about my previous arm injury. One difference in procedure is that, more conventionally, I believe, the standard protocol at Davis is to implement a veno-veno bypass -- this creates two additional wounds, one in the right groin, one in the left armpit. We toyed with the idea of placing the bypass in my right armpit, to avoid further trauma to my left arm, but, being right-handed, we agreed to stick to the left. We next discussed the sedation -- not Versed, but another member of the diazepam family "with even better amnesiac characteristics" as he explained to the resident. He went on to bet me that I wouldn't remember coming into the OR; I contradicted him on this, and he proposed a test, which was to remember his favorite ice cream, which he would tell me "in a minute" -- that is, after the meds had kicked in a bit more. I got on the table, with still enough presence to demand my parting shot before the mask was placed: "God speed us all, let's boogie!". His favorite ice cream, by the way, is pistachio.
ICU again. Everything is fine. Reassuring forces, it's dark, late at night. Can't talk. Back to sleep, rest, morphine-prednisone feeling OK. My new liver is fabulous, I can feel it.
I spent three days in ICU, one and a half simply waiting for a bed to come free upstairs. Didn't do much, just rested, started moderating my morphine intake as quick as I could; the most discomfort was GI distress and stomach distention from the fluid I had taken on (which was light compared with the first time). Getting to the floor on Wednesday, I was doing extremely well, but mostly just uncomfortable from the lying in bed and the narcotized agitation and essential sleep deprivation one experiences when one doesn't have natural sleep. By Thursday afternoon, I was practically leaving my body due to sleep deprivation. Hospitals are one of the worst places in the world to sleep. I finally managed to simply force myself to be still, and cover my head with a pillow to block out the noise and light. In the night time I had trouble sleeping partly due to muscle pain in my neck (I had a central line in my jugular vein; this induces an unnatural posture). As I was resolved to avoid drugs if at all possible, I managed to ameliorate this by having the nurse prepare a hot, hot, hot wet towel wrapped in a chux (the blue plastic absorbent bed pads). By Friday, I was starting to be almost normal. My case itself was just 'delightfully boring'. My numbers were all trending quickly towards normal. The nursing staff was great; the nursing team attends to you completely there (that is, they don't use nurse's assistants). I found this highly acceptable. On Saturday, postoperative day six, I was discharged. I stayed in the area eight days, had three clinic visits, also had what was left of my carcinoma excised, and went home.
Recovery has been great, the only problem has been ongoing GI side effects from the medications (the Cellcept is suspected, this will eventually be d/c'd) and general prednisone mania (more or less under control, the prednisone is tapering). And of course, the diabetes -- right now, I require insulin to manage my blood sugar, but we're hoping this will go away when my prednisone is d/c'd and my prograf is lower.
For those who can appr eciate these things, my current labs (5/27/98) are:
protein, 6.4, albumin, 4.2, bilrubin, 1.4, alk phos, 47, ast, 17, ggt, 27
I'm pumped. I suspect my bilirubin is slightly elevated due to excessive hemolysis, my HCT is still low due to stress of surgery and medications.
If you can do it the easy way, that's my recommendation; if you've got to do it the hard way, that's doable too. Whatever, may your wait be short and your survival long.

memorial verse to Steven

My donor was a thirteen year old boy who managed to shoot himself in the head when he and another friend were playing with handguns http://www.bradycampaign.org/

David Eyes

eyes@awakenings.com

Before
4-12-98
UC Davis Medical Center

After
4-23-98
Red Lion Inn Sacramento

Update May, 2000: I continue to do extremely well. My enzymes have crept up a bit (well under 100) (hepatitis C reactivation) and I take about 20 units of insulin a day. I work full time at the Santa Cruz Operation. Last month I played the lead in our companies annual 'follies' skit,' Willy Wonka and the Software Factory', (see pictures) it was a blast! I was also an 'employee of the year' last year, winning a trip to Maui. One of the non-survivors of my transplant was, sadly, my marriage, although I am now in a wonderful new relationship of one year's standing (9/2000). I will always be grateful for the care my ex-wife provided during my illness.

Update August, 2001: I continue as before, my latest medical 'trauma' was a nasty kidney stone (aggravated by dehydration due to a stomach bug). This was a nuisance and a real drag on my energy until I had it smashed via 'extracorporeal shock wave lithotripsy' which was an outpatient visit to the hospital. I had to go under general anesthesia, the whole thing was a little wierd ('here I am again') but totally normal with a very quick recovery. I feel great. Special thanks to Mary for love and care during the process. Liver health is excellent, enzymes almost normal although they can creep up at times. My (slightly) elavated bilirubin finally came down to normal range, where it remains, after my visit to my donor's family last spring (2001).

Update July, 2002: No news is good news: my last labs showed totally normal liver enzymes. Only thing out of whack on a regular basis are my blood sugars, and I continue to improve my skill in managing them.

Update June, 2003: Having reduced my prograf level to twice a day/once a day, every other day, my enzymes -- which were creeping up -- have now dropped to normal. As one consequence of my post-transplant medication regime was to accelerate my genetic predisposition towards diabetes, this continues to be my main health issue, although it remains resasonably well controlled. Persons with diabetes and anyone at risk (which nowadays is just about everyone) might be interested in the video "Sweet Fire: Understanding Sugar's Role In Your Health" that my friend, Mary Toscano, and I produced. Her site has a clip from it and other info, incuding how to order. Understanding of and control of diabetes is important for anyone post-transplant; it is especially important for persons with hepatitis C as this also aggravates the tendency towards blood sugar dysfunction. As I understand my blood sugar health better now, I can see that I was probably out of whack in my pre-transplant days and that didn't help my overall health status, energy levels in particular.

Update Feburary, 2005: I turned 50 last month and had the thrill of being told by a young lady, on hearing it was birthday, 'Oh, I thought you were about 35' -- so things continue extremely well. It will be ten years this May since my first transplant (seven in April since the second) -- this is a very good survival in grand style! I have now passed a fifth of my life through the grace of the gifts of these organs, without which I would not be alive today. Thanks and thanks again.

Update April, 2007: It's been a while since I've posted status here -- just letting everyone know that liver-wise, I'm still doing great! I just celebrated the ninth anniverary of my transplant last week vacationing in the Bahamas with my wife, Marije (we married the end of 2005). My enzymes are still normal; the biggest challenge is staying on top of my diabetes. I've begun working out at the gym with some regularity, which I find I actually enjoy. Working pretty hard at Quest Software, doing the product management thing like I have been for the last 20+ years. I travel quite a bit, including some fun/interesting places like St. Petersburg Russia last fall on business, and last December Marije and I spent our one-year-late honeymoon in Costa Rica. Here we are in the Bahamas:

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A Personal Account, with some random notes on organ allocation policy, as well as a few musings and meditations for candidates and recipients...

A Personal Account,
with some random notes on organ allocation policy,
as well as a few musings and meditations for candidates and recipients...