Taking openly about Endstage Liver Disease and the challenges of waiting on the Liver Transplant List for longer than expected is sometimes self-defeating and humiliating because the central theme is my greatest weakness, that is physically. Combining that discussion with a little grin about the hilarity and astonishment and sometimes delight of what happens behind the curtains in hospital somewhat lightens the load. Sometimes I get caught in a conversation where I realise that I have talked endlessly about one or more experiences or some knowledge that I have gathered and I realise now that it is my core attempting to exorcise my fears at the expense of the poor soul who asked the question! It makes me stronger to face the challenge if I can describe the weight of the load without harping on how difficult it is or how lonely I can feel sometimes because most of the time it is not difficult and I am not lonely. I have learned to reduce my expectations of life, not in a grand sense, in an everyday realisation that I am satisfied with so little now and the best moments however fleeting are fuel for the engine of my task. A good nurse taught me that the phrase, life expectancy, can be re-interpreted to mean “what do I expect of life today” and to relish that concept rather than fear losing a few years in the future.
There is a transition as a patient from helplessness to self sufficiency that is learned in the hospital bed. When I was first diagnosed with cirrhosis of the liver in a flurry of denial and almost death, I woke up the next morning in a shared, semi-private hospital room with the sounds of the hospital staff taking to the floor, changing shifts at 7:30a.m and the Doctors arriving, causing the surroundings to sit up straight. The man in the other bed was straining to breath and there were bleeps and grunts and an orchestra of phlegm every few minutes. I was convinced that he was dying and I couldn’t take my ears off of him. My Doctors waltzed in with trainees in tow, and gave me the rundown of what medications were being administered intravenously and what procedures would take place today and tomorrow. I promptly forgot everything they said and heard the distant echo of “ultrasound in the afternoon” barely audible over the dying mans wheeze. They left. I was astonished. Had nobody heard this man’s last few breaths but me? Turns out his Doctors arrived shortly after and woke him and told him how well he was doing, considering, and they agreed to maintain the medications and said goodbye, see you tomorrow. So for the rest of the day with the exception of a few hall tours to different testing zones, and the ultrasound appointment, I listened to him and tried to put his uncomfortable sounds out of my mind. Then the visitors arrived to see me. I couldn’t have imagined how ill I appeared because I knew that I had cheated death and everything, everything, was going to now change so I welcomed them with as happy a demeanour as I could muster up and settled in for the night. So this is what it’s like to be in hospital, I thought. Hurry up, wait.
As the week went on I found out from my new room-mate’s visitor that he had suffered some operations and he was touch and go, and very weak. Sometimes I would go around to his side to look out the big window of our room and I introduced myself, and since he couldn’t talk because of the giant tube in his mouth, I saw that his name started with a “K” so I told him that I would call him Mr K. He liked that. He spoke to me with his eyes and when I asked him if he liked Frank Sinatra his eyebrows added an emphatic “yes” so I began playing my greatest hits CD in the morning before the hullabaloo. All of this helped me too, because my treatment was difficult to endure and at times, although I didn’t admit it, I was scared. I just kept thanking everyone in the most sincere way because I was surprised and relieved that they were so kind at any time of day or night. I rang my bell one night at 3 am because I thought Mr K. was in real trouble but it turned out that his tube that removed fluid had just slipped from his mouth. Sometimes I would soak a hand towel and give his face a little pat, and his hands, and use it to brush his hair back. I estimated that he was about 65-70 years old. He always grunted a thankful grunt when I did this and by mid week when he was having difficulty with his tube I would just slip over and adjust it for him. One of the nurses told me that it was nice that I was good company for him because she would hear me talking to him during the day or evening even though he only contributed the odd cough or something that sounded like “yeah”. In that whirlwind of confusion, he was a constant, and I needed that.
I had never been in hospital before this experience with the exception of a few broken bones and stitches from sports injuries as a teenager. I liked the food, even the coffee. It reminded me of being on a plane or some kind of adventure. I learned how to electronically adjust my bed for watching TV, for reading, for sleeping. I had many meetings with specialists discussing the sad state of my liver. They should really provide a tape recorder for these crucial exchanges of information because I usually became confused with too much clutter . I finally wrote down some instructions near the end of my stay on the back of an envelope but once I arrived home I completely forgot about it and messed up the schedule for my appointments and my medications. I had an endoscopy which the first time around, is much like a small film crew being forced down your throat into your esophagus and then stomach. I had a biopsy, which was also a thin wire with a laser on the end that was inserted in a vein in my neck. The explanation was that it was too risky to enter the abdomen because of the risk of rupture or infection. Afterward I said that “they went for the jugular” which was too true. I had many blood tests, replaced i.v.’s, urine samples, swabs and eventually an MRI where they placed me in the cylinder (like on tv shows) for almost two hours! By the end of that I had forgotten where I was and what day it was but upon returning to my room, dinner arrived and all was well again. My little packets of sugar and butter and cutlery …and Mr K.’s constant breathing difficulties brought me back to reality. Every now and then if they removed my I.V. for an hour, of course leaving the rest attached to the vein in my arm, I would go downstairs amidst the public and wander outside through the revolving doors of the hospital to street level and watch the world go by. Little did I know that the door was going to keep spinning for me for years to come. Regular life appeared strange to me and I watched people on buses and streetcars stare across at the hospital and the front entrance and I wondered for the first time if any of them realised what was actually taking place behind these walls. Strangers, like myself and Mr K. were struggling together to survive the day and staff were giving their all in a profound statement of caring and human interaction topped off by knowledgeable and dedicated, educated Doctors and Specialists who made the tough decisions room by room, patient after patient.
When I was discharged I said goodbye and good luck to Mr K and he uttered the word “Sinatra” and smiled and coughed violently. I guess that’s how he would remember me, as the nutty young man who would play Sinatra three times a day and sing along to the memorable parts. His visitor was his brother and he told me that they were both avid golfers and I replied that I played a lot also. I happened to have a golf ball in my back pack for no reason and I put it into Mr K.’s palm and closed his hand around it and I said “maybe we’ll shoot a round together someday and I’ll beat you!”. I visited him once more a few weeks later and took him to the tv room to watch the Ryder Cup Golf Tournament. He still had the ball and he could talk a little bit more and he called me “Sinatra” and I didn’t correct him. I never saw him again since then. I have been admitted to the same hospital many times since and all the procedures and needles and such are no challenge now and I am used to the routine. I learned a lot from Mr K. that first week that served me well in the months and years to come. His struggle always made mine seem much easier and the fact that he was surviving such terrific circumstances helped me to realise that my bar could be set a lot higher before I gave up or gave in to the discomforts and anxieties of illness. In any situation no matter how trying it is there can always be hope, always music, and camaraderie and laughter and the loving, caring bond, of humanity in survival.