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Stories of hope

Thomas Burke: Determination

Thomas Burke

Okay. Please bear with me as this may take a bit, and since it happened 41 years ago, I may have forgotten various details-but not too many. For the most part, while I was completely naïve at the time and had no idea as to the seriousness of my illness, the work that others would be doing to help me survive and recover, or the nature of the transplant procedure itself- I do remember most everything down to specific dates and times.

As I indicated, it was 41 years ago, July 12, 1981.

I was living in New Jersey and working on Wall Street in New York City. One Saturday evening, I was experiencing a great deal of discomfort and could not fall asleep. Finally, about 1:30 a.m. Sunday, I decided to drive myself to a local ER to try and get some relief. So, get there, wait bit after triage – let’s say it is about 2:30 now and the admitting doctor comes over and tells me that he is admitting me because my bloodwork was indicating I was anemic. To my utter disbelief, they admit me.

A couple of weeks later, the doctors at the hospital had determined that I had a tumor growing on my liver, which turned out to be FHC-believe me I had no idea as to what that was. Only a few years later did I find out that patients with FHC do not even get to be on the liver transplant list – unless they have a living donor. Anyway, by this time it is Friday, July 3 and my father had been advised to speak to a hepatologist (internal liver doctor) in NYC, by the name of Fenton Schaffner. Dr. Schaffner advised my father to get in touch with another doctor in Pittsburgh, PA. So, he gets in touch and the brief information dad could provide, indicated that I really needed surgery. Now, mind you, I had never been sick a day in my life, outside the usual childhood diseases (measles /mumps /chicken pox/ etc.)

So, the following Tuesday, July 7, we (my father, mother and myself) all fly to Pittsburgh, and check into the hospital. Dr. Starzl and his team conduct some further tests and set up for surgery on the subsequent Friday, July 10. The surgery was supposed to take place about 3:30 p.m. Having never had surgery in my life, the one thing I remembered was that I was not allowed to eat before surgery that day, and was not happy about that – although I did not have a great appetite by that time. I did not feel particularly sick, but obviously was. Anyway, about 4:30-4:45, I wake up back in my room, and am somewhat dumbfounded again as my parents are telling me that Dr. Starzl couldn’t really do what he had planned and was suggesting an alternative procedure to fix my problem (cut away the tumor from my liver), which turned out to be a tumor that had encapsulated my liver. About 5 minutes later, Dr. Starzl comes into my room, apologizes to me and said he had a better idea to get rid of the tumor, and that idea is to perform a liver transplant. A liver transplant? Who had ever heard of such a thing? Remember, no cell phones, no internet, you couldn’t have found a single thing about a liver transplant – or kidney or heart or lung – unless you could somehow read about such a thing in some type of medical journal. So, the thing I remember most, is that Dr. Starzl is about as matter-of-fact about this as you might be when discussing today’s lunch. I mean, like it is nothing, no big deal. So, now we have been talking maybe five-eight minutes and it is about 5:00 p.m. So, they apparently put me on the list for a liver transplant, that list, at that time, contained only two other names and was kept on an index card that Sandee Staschak, on Dr. Starzl’s staff kept in a pocket in her lab coat.

Since he was so at-ease with it, I was like, ok, great, let’s do it. No idea of the dangers, risks, etc. I had heard of a heart transplant, and I had heard of a kidney transplant, but had not heard of a liver transplant. My next comment/question was for Dr. Starzl as I asked him “when can we get that scheduled?” I am relatively sure, that he just looked over, (probably thought this guy is really stupid), and replied something to the effect of, “as soon as we can”. That was it. Now, as of that date, no other doctor in the US, besides Dr. Starzl, was allowed to attempt such a procedure – so I had certainly come to the right place. In addition, immunosuppressant drugs had not really been that effective, except in the case of organ transplants between identical twins. So, up until that date, only 167 liver transplants had ever been attempted in the US, and of those, only about 25 or so had survived the procedure and were living. And, of those 25 or so, no adult, 18 or over, had survived the procedure out of that 167 number of liver transplant recipients. Dr, Starzl had brought his team to Pittsburgh from Denver, CO the previous December, along with a new experimental immunosuppressant drug, cyclosporin B to treat the recipients and while his own tests in a lab were very encouraging – in reality his first four patients in Pittsburgh in Mar-May of 1981, had failed to survive the procedure-all were adults who were just too sick to recover from the procedure. (A one-two year old child had survived his liver transplant at Pittsburgh’s Children’s Hospital in May, 1981, and he survives to this day). A good thing I did not know any of this, and neither did my parents. By this time, my siblings had all come to Pittsburgh from out of town to be with me for support, as had my best friend from childhood, who had come from, St. Louis.

I got my hospital dinner, terrible quite honestly, visited with my family and best friend, and went to sleep, maybe around 10:30-11:00 p.m. Next day, Saturday, I wake up, visit some more, talk with everyone, I think that one of my siblings got me lunch from a local restaurant, did some walking around the hospital – remember I really did not feel that sick, and went back to my room around 5 p.m. for dinner – God they feed you so early! Anyway, eat some dinner, but not all because I had had a pretty good lunch about 1:30. Maybe about 5:40 or so, a few nurses come into my room and inform me that they are hearing that a liver might have been found for me! Great! Maybe 10 minutes later, Dr. Starzl comes into my room and confirms, announcing that yes, a liver has been found and that they staff would be getting me ready for surgery. So, he chats a bit sort of explaining what is going to happen and telling me I need to sign a consent form. He asks if I have any questions, and I did not, so he starts to tell me that he needs to go and get the liver and he is going to leave, but they will get me ready. So, again, he is perfectly calm, like this is just something he does as often as you or I brush our teeth. And, I was just as relaxed, but wanted to ease any stress, so I said to him, “don’t drop it.” He looks over, I think with the same sort of incredulous look as the day before, and he was gone. So, I had been on this liver transplant list for all of about one day!

The staff gets me prepped – not fun if you have never experienced getting ready for surgery after you have eaten – and they get me ready for transport, maybe it is say 6:45 or so by that time. So, they wheel me to the elevator, we get on, ride down to surgery and probably within 15 minutes or so, I am under anesthesia.

Before you know it, I am awake, and it is now about 1:30pm Sunday. I am lying in a bed, I notice this tubing and a face mask and other stuff all over my face and realize I cannot talk, I reach up to grab it to move it out of the way, but, no chance for that as my arms were strapped down! I look up, as best I can, and see Dr. Starzl and Dr. Shun Iwatsuki, his Chief Associate, both standing next to each other, looking down but they are looking away from me, more like looking down at a table – so I presumed they were looking at some papers or something. Since they were not looking at me, and since I wanted this stuff pulled off my face, I reached my leg up and kick the side rails on the bed to get their attention. Dr. Starzl looked up, and over at me for a second or two, then turned back around and started talking to Dr. Iwatsuki. Like I wasn’t even there?

After a few minutes of discussion, Dr. Iwatsuki came over and said he was sorry, but I was still under anesthesia so he could not remove my straps or the mask until that anesthesia wore off. He said he would go and get my family and bring them in to see me. He also told me that I was doing just fine – I had my own opinion on that! So, the afternoon wears on, I see my parents, my siblings and my best friend over the course of the afternoon, but my friend had to get out and catch his flight back to St Louis.

The next afternoon, they take the mask off, remove the straps, etc and I was free to talk – although my throat was a bit sore so I chewed on ice chips for a few days, almost constantly. By Wednesday, I had been transported back up to the regular floor. A few hours later, one of the nurses came to get me to go for a walk – I was horrified at the thought! I had all these tubes running out of my body, and all were attached to an IV pole, so she helped me up, I grabbed the pole and we started walking, it took a lot of energy.

For the first few weeks or so, I had a private room, (almost 24 hour nursing care in the room) and anyone entering my room had to be gowned and gloved to come in – be it medical staff, nurses, or my family. The one constant starting in the ICU and continuing up on the floor, was seeing Dr. Starzl and/or Dr. Iwatsuki virtually all the time, I mean one or the other, was in my room a good twelve hours a day the whole time- looking at blood test results, examining my wound, asking me questions. I soon began to ask myself if Dr. Starzl ever slept? I would see him rounding with his Associate Dr. Iwatsuki, with his Surgical Fellow and with several Residents. That was usually twice a day, morning and late afternoon, but also would see him in the early morning around 7am, usually alone, and I would see him just pop in, at all hours: 2am, noon, 2:30pm, 4am before they would do bloodwork, day after day – he never took a day off it seemed.

About a week after surgery, I had lost maybe 50 pounds-some of it of water weight due to the roughly 18hour surgery and again, the food just did not taste good. Since I wanted to work up an appetite, I asked Dr. Starzl if I could go to Physical Therapy and if I could run in the hospital hallway-he approved the running-the floor nurses were horrified but obviously had to allow it since he had approved -, after visiting hours, and wrote orders for me to go to PT. Dr. Iwatsuki even asked what kind of beer that I liked offering to go get it so I would add some calories, but I let him know that I did not really like beer so that was out. The nurses were under strict orders to get me up walking, a lot, and they complied because they all knew that Dr. Starzl had picked their unit for his patients, and they did not want to let him down-so were anxious to please. There was something about Dr. Starzl that I could not put my arms around. I had no idea why, but just the realization that his presence induced some adrenaline and I always felt better than I had in the moments just before he stepped in. Between walking with the nurses, running (well to be honest, jogging) on my own, and the endless bloodwork (probably6-7 times a day), I was kept busy. I hardly slept, but then I really did not do so much that I became that sleepy, and all the tubes coming out of my abdomen, led to discomfort and so sleep was just not easy. Not much for tv, as it was the Summer and Major League Baseball was on strike – so no games to watch! The one thing I watched – the wedding of Prince Charles and Princess Diana.

All the bloodwork, and the various tests that I was sent to had results that needed to be posted on my medical chart, and I had this huge chart with probably 50 rows of test levels – WBC, Alkaline Phosphate, BUN, Bilirubin, etc., etc. and then some 60 columns across for dates/times. As results came back, Residents would come and slot the updated results into the corresponding spot on the chart. Many times, Dr. Starzl would walk by my room – say at 2:30 am or 1:00pm, and glance at the chart to check the latest results before leaving as quickly as he had arrived.

As you can see, I saw a lot of Dr. Starzl – at all hours of the day. It was so strange to me. I never realized that anyone could basically survive without any sleep at all. No, not me, who had not a worry in the world, but him – who certainly did. Within a day or two after surgery, in the ICU, I became aware of the fact that every time he came into my room, I immediately felt his presence and that incredible will/determination. There was nothing that he said, but it was like my internal being wanted to prove to him that I was going to get better and go home. About two weeks after surgery, I told him that I needed to get home to be in graduate school by the end of August, and said “I see no issue with that” and we moved on. Of course, I had no idea that at that point in time, no one had ever gone home/been released from the hospital, within a month or so of the surgery, but…One day, maybe about 10-12 days after the procedure, my mother, who was still there with me, asked Dr. Starzl about my long-term prognosis as they were walking out of my room. He stopped, turned around, went back into my room and asked her to repeat the question in front of me. She did, and he looked right at her, and said “he will be bouncing his grandchildren on his knees”.

At the time, I really thought nothing of it as I fully expected that myself, but later realized the significance of such a bold statement. (At that time, a grand total of 1 person in the entire world had survived a liver transplant in excess of 9 years!) That was his sheer determination showing itself. By whatever means necessary, that will of his would result in my survival as his dogged determination set my outcome from the start. You could see it in his face, every single time I saw him, sheer determination and a refusal to give up on a patient, any patient, he was just going to fight as much as need be to get that patient well.

I know many transplant patients experience what is referred to as Survivor’s Guilt. I never experienced that, but I did develop this profound determination to do as well as I could physically, so that I would not feel guilty that Dr. Starzl had wasted his time on me. That overpowering feeling carries over to this day, over five years after he passed. No matter what, I am not going to pass due to anything relating to my liver. I think I figured that he had spent the equivalent of several weeks with me even after only a week or so after surgery, it was like the 18 hours of surgery, a good 8 hours daily while in ICU for three days and then another 4-5 hours a day after I was on the floor for recovery. So, I pretty much felt I just had to get better so as not to disappoint him. The one thing I remember was him rounding with the other docs. He would ask each of them questions during rounds and he asked questions in a way that was unlike a teacher asking a question of a student to see if they knew the answer, but he asked questions to try and get different perspectives. Like, he was always trying to learn something through questioning. He wasn’t playing “Got U” with seeing if someone could not” answer” but he asked to get insights to see if perhaps he, the expert, had not thought of something that maybe another doctor – even a Fellow or Resident – might present a viewpoint that he hadn’t considered, yet that viewpoint, at least to him, could be critical in learning something new. I was awestruck by the way he dealt with everyone.

Much later, in fact years later, when I would see him, I was still awestruck. He was obviously, the most interesting man in the world to me. His interests were all over – even away from medicine – be it sports, music, politics, art, poetry, literature, you name it. He knew something about most everything, yet still had this very matter-of-fact way of dealing with life, and life’s issues, at least on a superficial level. One day, around the end of July, I noticed that a whole day had gone by, but Dr. Starzl had not been in to see me? Then same thing the next day, so the next – August 3, I asked Dr. Iwatsuki where Dr. Starzl was? “Oh, he is on his honeymoon, he got married the other day”! Great, I say to myself, how am I going to get out of here without him to discharge me, and when is he coming back?

He came back around August 8, and on Sunday the 10th, he said that perhaps by Tuesday I could go home. So, on Monday I call my Dad and told him I was getting out and to get us transportation back to New Jersey, and he set that up for Tuesday, the 12th. Also on that Monday, Sandee Staschak, Dr. Starzl’s newly hired Transplant Coordinator, came to my room to instruct me in taking my medications. I was going to be on a pill called CellCept, another pill called Prednisone, and this new immunosuppressant, Cyclosporin B. Now Cyclosporin was dispensed in a liquid form, had to be mixed with another fluid and then you would drink it down. The medication was immersed in olive oil. So, it takes her maybe a few minutes to explain the whole thing to me, and she then asks me, “do you have any questions?” “well” I said, “what if I forget?” She looked right into my eyes but lifts her index finger and tells me “oh no, you will never forget!” Believe it or not, I never do. I mean 41 years later, that is almost 15,000 days, and I have forgotten maybe two dozen doses in those 41 years- so two doses a day times 15,000 days is 30,000 doses and I may have missed 24. Pretty good, I just don’t forget, it became routine and I really don’t think about it, I just automatically take it. Sandee is the one constant since my transplant, I absolutely love her to death, and would basically do anything in the world for her. She worked for Dr. Starzl, in various capacities for 36 years, until the day he passed.

Anyway, the next day, Monday August 11, Dr. Starzl told me I was looking good and stated that I could probably go home the next day. Great, I called my Dad and he got us booked on a flight home ( I had moved to NJ about 6months earlier and he was preparing to move there for his job as well) for the next day. So, went down for some other type of test, but was back upstairs to my room by noon or so and went down to the Gift Shop, which had a lunch counter, and I ate, some sandwich or whatever.

Sandee, was Dr. Starzl’s first Transplant Coordinator, and later managed the whole group of Coordinators – for not only livers and kidneys (Dr. Starzl’s areas of expertise), but also hearts, lungs, pancreas, corneas – all the transplanted organs. We have been friends these past 41 years and I love her dearly. Later that afternoon, some of the nurses came to my room and asked me to follow them out as we had to go someplace. Fine, so we start walking down to the nurse’s station and then behind it into a conference room, where the entire floor nursing staff was standing and waiting for us. I was kind of lost wondering as to why they wanted me to be at one of their meetings. I also noticed a bunch of balloons, streamers, and a few boxes that were obviously from a bakery containing all sorts of treats. The nursing staff manager then explained to me that they wanted a party because they had never had a liver transplant patient actually survive and leave the hospital so in essence, they wanted to celebrate my success and their’s, l was dumbfounded at this revelation, I really did not know what to say. So, they started to explain that the procure that I had thought was no more serious than a tonsillectomy was extremely dangerous, and that while I had considered my recovery a slow process, they had initially expected that I would be hospitalized for a good three months – not one. While I had thought they had all seemed so matter-of-fact, they were all indeed, scared to death that something would go wrong and that Dr. Starzl would be furious.

The next day, August 12, I was to be released from the hospital. I see Dr. Starzl on morning rounds, he confirms he is discharging me, he tells me to stay in touch with Sandee, gets me a script for bloodwork to have performed weekly, gives me an appointment card for Dr. Schaffner in New York City, and bids me a good luck in grad school comment. Shortly after noon, my father and I depart, and away home we go.

I remember one occasion, about four years after my transplant, I was visiting some people in Pittsburgh, and my friend Sandee, asked me to go up to the OR and talk to the staff. Her reasoning, the people up there saw sick patients come in and leave but had no way of knowing whether they really lived or died, she wanted them to see a patient who was thriving. So, I go up, meet several and talk to them for maybe 20 minutes or so, when out of the OR comes Dr. Starzl himself, all gowned up from the surgery he had just performed. Anyway, he doesn’t recognize me – and why would he as he had no knowledge I was going to be there, or even in Pittsburgh as I still lived in New Jersey and worked on Wall Street. SO, I said, “Dr. Starzl”, he looked over, “Yes” and so I tell him who I am, and without hesitation, he starts telling the whole OR staff who I was, my case history, when my transplant had occurred, the reason I needed it in the first place, everything – off the top of his head, no notes obviously. I was floored, so were all of them! It was the most amazing thing I had ever experienced in my life, I mean, this man, in his life performed over 10,000 surgeries including over 1500 liver transplants and over 3500 kidney transplants and then other assorted procedures. But, from straight memory, he recants mine. When I got back to Sandee’s office and relayed the story, she said that I would be surprised to know that he could do the same thing for many patients. The idea that a human being could have that much recall over something that had happened over four years before, and have all the material facts correct, just from the top of his head blew my mind, and still does to this day.

Another time, about two years after my transplant, Sandee invited me to come to Pittsburgh, as one of the families of a child who had survived a liver transplant several years before mine in Denver, was putting on an anniversary party for their child. It is in the Spring of 1983, and I agreed to come out. So, I drive out on a Friday afternoon for this party scheduled for Saturday. I go to a hotel in Pittsburgh where the party is scheduled, find the indoor swimming pool that had been reserved for the party. I go in, and find there are maybe 10-12 children their siblings and parents; my friend Sandee; and then some of the docs-including Dr. Starzl, Dr. Iwatsuki, Dr. Shaw – the Surgical Fellow on Dr. Starzl’s team. The kids are swimming/playing in the water, and I go say hello to Dr. Starzl and then started talking to Sandee. I mill about, talking to the docs and Sandee but not too much to the others. There is cake and ice cream as well as cookies, candy, some snack food, drinks, etc. I may have met some of the kids – don’t really remember. The thing I do remember, is one of the parents, a Dad, calls everyone’s attention as he asks, “who is Dr. Starzl’s favorite patient?” So, these kids – mostly under say 10-12, and all wet from the pool and wrapped up in towels, start shrieking out and raising their hands, all proclaiming to be the anointed favorite. Over to the side, I see Dr. Starzl, just smiling, with that obvious glint in his eye, that lit up the city of Pittsburgh for 36 years. It was unmistakable! So, each of these kids, felt as if their own personal relationship with Dr. Starzl signified that, at least in their own minds, that were his favorite patient. I have no such illusions but do feel blessed to have known the man for over half of my life.

One hiccup, I had gotten bloodwork regularly for about 17 years (regularly meaning weekly the first year after my transplant but after 17 years I was going about every other month for the bloodwork). By this time, I had gotten married, and my Wife would ask about my bloodwork results (which I paid no attention to) and if I had called Sandee or anyone to discuss or ask about problems. I, told her, that if there was ever a problem, they would call me. So, in July of 1998, a Coordinator calls me to tell me that the docs wanted me to go and see a Nephrologist. We were living outside of Washington, D.C. but I found one and called to schedule and I went to see him. He ordered some more bloodwork and had me get diagnostic pictures taken of my abdomen and I did that. He let me know that there was an issue with my kidneys, and I might need to have one of them removed. Well, surgery, that calls for reaching out to the transplant docs in Pittsburgh, so make an appointment to go and see a Urologist in Pittsburgh attached to the Transplant Service. I arrange to come to Pittsburgh for what is supposed to be a nephrectomy, but later find that toxicity from Cyclosporin B has killed my kidneys, so I am going to need a kidney transplant.

A friend offers to be my living donor, and that transplant happened on June 14, 1999. All good, she is a wonderful woman, who just wanted my son, who was 2, to experience the same joys with his father (me) as her son had experienced with his father/her husband.

Over these forty-one years, the enormity of it all has become significant in my mind -especially given the date and given the time where immunosuppressants were not as effective as are they now. Very little of my success has been attributable to myself, as I did nothing but follow the directions of my transplant team. I tell people all the time, that when it comes to organ transplants, the doctors fix the problem, the nurses get you well enough to go home, and the transplant coordinators keep you well the rest of your life. The patients? Well, we patients, if we are smart, just believe the docs, follow instructions, don’t get caught up in details, but we do go back to living our lives.

One more thing, on Saturday morning, March 4, 2017 my friend Sandee called me to inform me of Dr. Starzl’s passing earlier that morning in his sleep. It was, the saddest moment of my life.

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