WHILE SUE AND I were dating but living together, we made it a habit of holding a date night each week on Thursday, calling it, “Crazy Thursday.” We went out to eat, eating whatever we wanted so long as it was fun, with absolutely no calorie counting. That particular Thursday, we had just gotten home from our eating frenzy and decided to watch some TV before going to bed. While lounging on the couch, I felt a pain shooting through my liver that caused and I told her I had some pain in my liver, but just needed to get comfortable. Sue accepted this and quickly fell asleep.
After tucking her in, as was our routine with whoever was I watched an episode of “ER” but was uncomfortable the whole time as the pain in my liver had become far more considerable. I was dog tired and didn’t want to wake Sue with my continual squirming so I attempted to sleep on the couch. One hour passed, then another, and another, as the level of pain in my liver reached a degree I had never before experienced. My eyes welled with tears as I slowly paced our small New York City apartment from our econo-sized living room, down a narrow hallway into the kitchen, and was wrong.
I woke Sue around 2:00 a.m. and told her what was happening. She asked, “How long has this been going on?” I said, “Ever since we laid on the couch to watch TV. It’s never been this bad before so I think I should give UPenn (this is how my family and friends referred to the Hospital of the University of Pennsylvania or HUP) a call.” Sue agreed. I called the hospital and had the gastroenterologist on duty paged. Shortly thereafter, the gastro returned my call and asked how I was doing.
I explained that I had Primary Schlerosing Cholangitis (PSC), was listed for a liver transplant with UPenn, was in a tremendous amount of pain and needed guidance. The gastroenterologist gave me the option of driving down to UPenn, but encouraged me to go to my local emergency room if I was in such severe pain. “Ok, thanks.” I said, and hung up the phone, feeling unsure of my next move.
I told Sue what the doctor had said, and she again asked what I thought we should do. It was a risk, I thought, to drive to the local emergency room, since the most likely scenario would be the administration of a pain killer, followed by an even more drawn-out transport to UPenn. We agreed to make the drive to UPenn even though the pain I was feeling was well beyond my own personal pain threshold and a local emergency room could take it away much sooner. We put some clothes on and began the long drive down to UPenn. It was 4:30 a.m. on Friday, March 11, 2005.
Sue retrieved the car and pulled up to the front of our but slowly made my way downstairs. When I opened the door to go outside, the cool, March air excited my lungs as if I were about to go on one of the early morning runs I was able to embark on only weeks earlier. I climbed into the backseat of the car with every intention of trying to sleep, or at least lie down. I couldn’t do either as my liver felt as though it were stabbing me from the inside. I tried everything twice: sitting straight up, leaning on my left side, my right side, and getting on all fours. I found comfort only momentarily before the pain in my liver would lash out, reverberating through my entire body and forcing me to move yet again. After seeking some sort of repose but never eyes to try to hold back the inevitable regurgitation.
Sue called out to me, “How are you doing, Honey?” I replied, “I’m ok,” not wanting her to worry. However, I knew that I was going to throw up any second, so I yelled to Sue, “I have to throw up so I’m going to stick my head out the window.” Sue said, “Do you want me to pull over?” I yelled, “No! Just keep driving but see if you can get into the slow lane.” As soon as Sue made it into the slow lane, I opened the back window, stuck my head out as far as I could, and disgorged everything in my system. The vomiting was so forceful that I swore my stomach was lying somewhere on the New Jersey Turnpike around exit 7A, the exit for Six Flags Great Adventure. A “great adventure” indeed…
After spitting out any remaining remnants of dinner, I pulled my head back into the car and tried to relax. I did 5 minutes it returned with vengeance. The pain hit hard initially, causing me to lose my breath. I gave up trying breathing. After trying several breathing techniques, the only technique that worked was taking short, quick breaths.
I felt myself become lightheaded a few times and so had to slow my breathing down but overall, it worked well.
The drive to UPenn seemed to take forever despite the fact that it was very early in the morning and there was emergency room, I guessed we had been in the car for at least four hours; in reality, it had only been two.
When I walked into the dimly lit emergency room, one person was in the process of checking in and another two, who looked like a couple, were sitting in the waiting next to it, holding the arm just to maintain my balance.
I waited until the person before me was done checking in and then I made my way over to that seat. It took quite a chair. I gingerly sat down and blurted out my situation in two breaths: “Hi my name is Dan Bonner and I’m on the transplant waiting list for a liver. I paged the gastro on duty and drove down here. On a scale of 1 to 10 my pain is a 12.” The person behind the desk, most likely a nurse, immediately stood and brought me a wheelchair. After helping me into triaged at 6:29 a.m. and registered by 6:37 a.m. My blood pressure was 140/66, my heart rate was 75, my temperature was 96.8, and my pain was a 9 (I guess they can’t record a 12 on a 10 scale).
After the nurse helped me into bed, Sue walked through the door with another nurse right behind her. The nurse began asking questions concerning my situation and I said to her in short, quick breaths, “I have a liver disease, and I’m listed through HUP to get a liver. I paged the gastro on duty several hours ago who told me to go to my local ER. I thought coming here was a better idea. On a scale of 1 to 10, my pain is a 12 so I need a painkiller. Also, morphine doesn’t do anything for me so I’m going to need Demerol or whatever the equivalent of Demerol is you carry (due to an increase in patients experiencing allergic reactions to Demerol, some hospitals, HUP being one of them, no longer uses Demerol as an opioid.) I know you’ll need to get a doctor’s permission to give me the painkiller so I would appreciate it if you could track the doctor down as soon as possible.” Having been in and out of hospitals for years, I was well-versed in disease treatment and hospital protocol. The nurse was momentarily and immediately left the room.
Minutes later, the doctor entered with the same nurse.
He had only glanced at me before saying, “Get this guy what he needs.” It was obvious the nurse had briefed him on my condition, since there was no other way he would have given out a narcotic so freely; but my banana-yellow skin and eyes to gather an IV set-up, I explained, as well as I could, more about my reasons for being there and my ongoing condition.
He said, “Well, we’ll get the painkiller into you right away and then we’ll take it from there. I’ll also try to get in touch with gastroenterology and see who spoke with you.
Hang in there, Mr. Bonner; we’ll take that pain away for you in no time.” The nurse quickly returned, set up an IV, and injected the Demerol equivalent pain killer, most likely, Dilaudid. I felt the drug hit my bloodstream and the pain subside immediately. I felt like a hardcore junkie getting his Aunt Marg walked in moments later while Sue and I were waiting to hear what the next steps would be. Aunt Marg is my Dad’s sister who lived near UPenn in Philadelphia and always kept close tabs on me. I was not surprised to see her at the hospital in such a short amount of time as word spreads so quickly in my family when someone is in trouble.
As I was telling her what happened, the gastroenterologist I had spoken with during the night came into the room. He said he was surprised to see me, having thought I would have chosen to go to my local emergency room. I explained to him that most of the hospitals would have just stuck a band-aid on me then sent me to UPenn anyway, so I was simply removing the middle man. He seemed genuinely concerned that I had been in pain for as long as I had to endure to ride to the hospital, but said he felt I had made the best decision. He then informed me that I was being admitted and moved to a more comfortable room. He also said that he would alert the transplant unit and pre-transplant physician. “It’s Dr. Burke,” I said, and he made a note of it, said someone would contact her, and then he left. A nurse appeared shortly thereafter to draw blood. I knew they were going to check my liver enzymes to see how they compared to my previous doctor’s visit in February. It was no surprise that my liver had worsened considerably, and was, in fact, barely functioning.
I was eventually moved to a room in a section of the hospital with which I was unfamiliar. My roommate was a large, mentally disturbed man, about 6’4,” who claimed that he was owed $75.00. As he became increasingly agitated that he was not paid his $75.00, I felt it was in my best interest to be moved to another room; my request was granted, fortunately, and I was moved to another room on the same Dr. Burke visited later to discuss her plans for me.
the level at which my liver was actually functioning or not functioning. The only problem, she said, was that the machine was booked for the rest of the day, so she was trying to squeeze me in later in the day with a worse-case scenario of Saturday. I surmised the test would reveal how critical it was for me to undergo the transplant. Dr. Burke returned later in the day to inform me that I would not be going for the test on Friday and that she was sorry. She said she would see to it personally that I was scheduled for Saturday despite the fact that there was no room for additional appointments.
After asking if I needed anything further, she said goodbye for the night.
It was now 7:00 p.m. Our journey to UPenn began at 4:30 a.m. that morning; I had been continuously moved from one place to another, and I was exhausted. I was given permission to eat, so Sue ventured out to pick up some sandwiches from Boston Market, as we had missed dinner service. While we ate, I received a visit from one of my liver transplant surgeons, Dr. Frank. It was good to see him, since I hadn’t spoken to him since my pre-transplant evaluation in August of 2004. Dr. Frank explained why it was taking a long time for my transplant to move ahead due to some unique circumstances. On paper, I had been in need of a transplant for a considerable amount of time. However, I was in excellent physical shape for someone who, on paper, was as sick as I was. Because I was able to retain much of my muscle mass, was able to care for myself, and was not experiencing many of the symptoms of someone having liver failure, the hospital was holding out for me to receive a All that running and lifting weights paid off.” I reveled in weeks longer than the hospital had estimated because of sense of accomplishment at that moment, when I hadn’t felt particularly good about anything.
The last thing I remember Dr. Frank saying to me was,
“I don’t want you to worry about anything. We are just waiting for a high quality liver to come in. Trust me, you are never further away from me than here.” as he pointed to his heart. I thought that was weird and felt awkward, when all of a sudden he pulled a white piece of paper out of his even whiter doctor coat with a list of what he said was, “…a list of patients in need of a transplant.” Thinking he had pointed to his heart, I felt like an idiot. I said, “I appreciate that, Dr. Frank; just don’t wait too long.” With that, Dr.
Frank shook my hand and left.
Saturday—I would wait to hear if I was having the test, after which time the doctors could more thoroughly evaluate my condition. Sue would stay with Aunt Marg at the convent and then come by as soon as visiting hours began again at 11:00 a.m. She kissed me, and told me that she loved me. I told her I loved her too, and after a supportive and warming embrace that I didn’t want to end, we separated and she left.
That night, I lay in bed with my eyes wide open. I was beyond the state of being tired, but thoughts cycled continuously through my mind, and I was utterly unable to sleep. Thursday night into Friday morning had been the most excruciating ten hours of my life. The pain I had experienced was indescribable; it was beyond the limitations of language. I was shocked that the human body could take such a beating and survive. Although I was happy that staying in good shape had swung conditions in my favor, I wondered how much longer I would be able to hold out for a transplant. I could not escape the feeling inside that I had somehow dodged a bullet that day, but that at any moment that same bullet would swing around like a boomerang and hit me—no matter what I did to avoid it.
While lying on my left side, I gazed out into the hallway, and thought it was unusually quiet and unusually of a tunnel and could see light at the other end. Disturbed by that thought, I closed my eyes and turned over. I didn’t want to sleep, knowing I was close to dying—I could feel it instinctively, but wasn’t sure just how close. I wanted to live; I fought hard to live; and I thought that was enough to live. However, I knew that not everyone on the transplant waiting list lives long enough to get an organ, so I wondered if I too, would fall into that category. The emotions of the I was awakened the following morning at 5:30 a.m. by Dr. Burke’s resident, Dr. Kennedy. I had seen him just the night before at 7:00 p.m. I noticed he was wearing a different point. It turned out that he had caught a few hours of sleep at the hospital, showered, and returned to doing rounds. I felt sympathetic for the life of a resident doctor.
Dr. Kennedy asked me some questions about how I felt in general while checking my abdomen for unusual tenderness. As I conversed with Dr. Kennedy, another doctor walked in and silently sat down on the far side of the room. I had no idea who this doctor was, and his silence was disconcerting. I got the impression that Dr. Kennedy also did not know him.
After completing his examination, Dr. Kennedy explained that I would be undergoing the test that Dr. Burke had explained to me on Friday. It was then that the other doctor in the room spoke up, telling Dr. Kennedy to cancel the test since I was going for surgery. He then turned to me and said, “Mr. Bonner, my name is Dr. Markmann and I am one of the transplant surgeons. A liver has become available so we are going to bring you down for surgery. However, we have to go right now.”
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This page contains the first chapter of Gifted: An Extraordinary Journey Through Illness and Liver Transplantation by Dan Bonner as a sample. This sample has been published with permission from the author and/or publisher of Gifted: An Extraordinary Journey Through Illness and Liver Transplantation, whoever originally submitted the book for review.