A sample chapter from Dying for Life: The Journey to Transplant by John Landers.
Distinctive Publishing Corp., 1993.
ON SEPTEMBER 6, 1991, MY HEART FAILED; congestive heart failure (CHF) is the exact terminology used by the doctors. This did not mean that cardiac arrest would be an immediate outcome, but it did mean that my heart was giving up its limited capacity to provide enough blood and oxygen to the organs such as the lungs, kidneys and liver. It was also clear that oxygenated blood was not being efficiently pumped to my extremities, making muscle use extremely difficult. I had scheduled a consultation for that day with Dr. Robertson, in order to establish who among all the doctors - Dr. Klein, Dr. Copeland and team, or himself - would coordinate the treatment plan. This meeting had been set for 2:30 p.m. By 4:00 p.m. I was in intensive care at Scottsdale Memorial Hospital.
Beginning the day before, I'd had great difficulty breathing, with the slightest amount of activity. After walking up a parking garage ramp to my truck, I had had to wait fifteen minutes, trying to catch my breath, before I could unlock, open and climb into the truck. On that particular day the weather was lousy, the air heavy and rainy. Weather changes had always affected my life-long asthma problems. It was simple for me, therefore, to believe that this episode was merely a recurrence of an asthma attack. Even so, I couldn't remember ever having that much trouble breathing. This wasn't like asthma, with which I'd feel that I couldn't catch my breath. The feeling was more like there was no breath to be had. I went very slowly the rest of that day and the day of my previously scheduled meeting with Dr. Robertson.
I had to wait to see him, but finally I was ushered into an examination room. They were not about to let me get out of there without at least checking blood pressure and pulse and listening to my heart and lungs. Dr. Robertson arrived shortly. As he came through the door, looking at me, his entire facial expression went from "Hi big guy!" to a serious doctor face. Whatever was happening was immediately obvious to him. It had something to do with appearing grayish, or dusky colored, almost blue - a sure sign of failure. In addition, my ankles were swollen, and my overall body weight had increased very quickly by seven pounds. This meant that the heart was not handling the load of driving the kidneys and lungs to expel fluid from the body. This added significantly to the risk of the heart's giving up completely.
In a flash, Dr. Robertson was on the phone with Scottsdale Memorial Hospital, notifying them that I was to be admitted into intensive care immediately. He instructed them concerning what drugs to start, and he told them that any paperwork for admittance would be damned until a later time. Coming back into the room, he told me the plan and explained what was happening to my body. He further described what procedures would be followed at the hospital, including the insertion of a Swan Ganz heart catheter.
The hospital is just up the street, a block from his office, but I was not allowed to drive. Debbie Petras, his chief R.N., was to take me to the hospital. I called Lori and asked her where she might like to spend the weekend. The question elicited a very strange, "Why?" She could tell something was wrong, even though I was trying to make light of the problem. After explaining what was going on, I suggested that she not drop everything she was doing at work in a panic and come racing to the hospital. I would simply go with Debbie, get settled in and see Lori after work.
Debbie brought her car to the front of the office. The weather had cleared, and it was hot and humid. She quickly drove me to the front of the hospital. Telling me to wait, she jumped out of her car, ran into the hospital, and returned with a wheelchair. I was not breathing well, but I certainly could have walked myself in. Once we hit the front door, there was no question about where I was headed. I was taken directly to intensive care and ordered into bed. There was a mild flurry of activity as nurses helped me out of my clothes and into a hospital gown. Monitors were attached, IV poles were wheeled into the room, and preparations were made for all sorts of other things, about which I wasn't completely clear. An intravenous line was started. And needles - I hate needles! Vials of blood were taken - more needles. I was informed that Dr. Robertson had called to make sure all was proceeding according to his plan; he left word that he would be in shortly.
I had time to calm down. I was supposed to be back at our shop, closing up for the day, not in intensive care at a local hospital. Lori arrived looking befittingly worried. She didn't know what was going on, and I wasn't much help. I did remember to tell her the reason for my being in intensive care. It was the only place they could monitor and test the heart catheter that was to be installed. At least, that's what Dr. Robertson had told me. Somehow I figured that was only part of the story, but it seemed to diffuse Lori's concerns a bit. Shortly after Lori arrived, Dr. Robertson came in. He was intent - all business. He was trying to arrange time in an operating room or cath lab in order to do the catheterization. That arrangement wasn't going as well as he wanted, so he I announced that he would do it right where I lay. I was a f little worried, to say the least, and when Dr. Robertson gave me the option of a simple local or a local and some mild general anesthesia, I went for all of it. I was still semi-cognizant, but the panic mode had been lifted, thank you very much!
The examination lights came on, the bed was raised to the appropriate operating height, and I was positioned on my back with a rolled towel between my shoulder blades. This was done to allow the catheter easier access into and through the large vein just underneath the left collar bone. I had expected the normal cath route, but this was faster. Dr. Robertson and an assistant made only one minor adjustment, threading the catheter around two formerly broken spots on my collar bone. It was over in about fifteen minutes - not fun, but not bad. They tested and maneuvered the catheter, measuring pressures inside the heart. Fluid ran through the catheter and into a syringe; the pressure measurements were based upon how much fluid was pushed or pulled away from the heart. Finally, it was over; doctor and assistant seemed satisfied. The anesthesia and my fatigue from not breathing well combined with the relief I felt because the procedure was over; I was heading quickly to sleep. Lori and I kissed and hugged, I sent her home, and to sleep I went.
Sleep - I needed a lot of it. I'd end up taking naps before I went to the shop. Sometimes on weekends I would nap in the morning and then again in the afternoon. On the other hand, there were periods when I couldn't sleep. Prior to being put in the hospital, I'd found that I could no longer sleep lying flat. I would wake up feeling as though someone were sitting on my chest. This sensation is referred to as orthopnea, and is a sign of congestive heart failure. I considered the sensation to be like the feeling I had as a kid, when my asthma was bad. When I felt this way, I always slept better in an upright position. The most comfortable of upright positions was not in bed, but in the corner of the couch in the living room. This didn't endear me much to Lori, for she wanted us to sleep together. Given that neither of us fully understood what was going on with the sleep process, she must have felt as if I were purposefully neglecting her wish. Not so. I needed to breathe so that I could sleep, but sometimes being able to breathe didn't assure that sleep would come. It was impossible to tell from one night to the next what the outcome would be. It was horrible.
As events progressed, sleep became even more of a mystery. My legs were beginning to develop seizure-like activity. They would kick out in the middle of the night as though someone had sent an electrical charge through them. They often felt as if they had a mind of their own.
If I were trying to sleep, they would feel as though they needed a brisk walk. These conditions combined to make sleep an issue of grab-it-when-I-can; I struggled to resist frustration during periods when I should have been sleeping, but couldn't. Even more disconcerting was the fact that when I did sleep, I would wake up drenched in my own perspiration. This was not as though I had been sleeping under too many blankets or the room was too warm; this was a complete, drenching sweat, to the point of having to change the sheets and pillowcases because they had become sopping wet. It was unbelievable. The doctors were told of the condition, but neither Dr. Robertson nor Dr. Vein had any specific, detailed explanation. I suspect that the answer was always there; they simply chose not to worry me any further with the reason.
Both the leg problems and the drenching perspiration were attributable to continued heart failure. The fits and starts were created by insufficiently oxygenated blood flow to the large muscles of the legs. Since the heart is the pump that makes the rest of the organs work, in its diminished capacity my heart was unable to process fluids in the body effectively. Impairment of the kidney function meant that relieving fluid from the body became harder and harder. Fluid, instead of being pushed from my body, built up in its cells. Most dangerous was the build up of fluid in the lungs and around the heart itself. The more fluid, the harder the heart had to work against the corresponding pressure. With the heart fighting its own battle, it couldn't be of much help to the lungs or the rest of the body. The drenching sweats were my heart's attempts to handle the problem. Lori and I were sure that it had to do with some of the medications I was taking. At the time we were unaware of the real underlying cause; in retrospect, I see that our ignorance probably kept us from some teeth gnashing about the continuing signs of congestive heart failure.
Saturday, September 7, was a party compared to what was to come. Even though I was in ICU, wired and stuck to everything they could think of, I felt remarkably good. I had slept well, in spite of my drenching the bed with perspiration. I had not been given any orders regarding food or fluid restrictions. So what do I do when I'm in the hospital with no restrictions? I eat and drink, trying to overcome the boredom. Scottsdale Memorial is known for having good food, so I made the most of it. I gorged myself with between-meal snacks - ice cream, pop, frozen Italian ices, juices - you name it. If they'd bring it to me, I'd consume it. Even though I had consumed everything in sight, the intake/ outgo charts showed that I had eliminated more than I took in. This was a definite achievement, given the more than 5,000 cc of measurable fluid which I had consumed. It was an improvement - only a slight improvement, but a measurable one.
My heart was not able to eliminate the 7,000 cc of fluid by itself. One of the intravenous lines stuck into my body contained the diuretic Lasix(D (furosemide). Lasix(E) would cause my system to purge fluid to the point of dehydration, if necessary. My system had to be relieved of the fluid, but instead of my understanding that, I simply drank and ate everything in sight the first day. I was "pissing like a racehorse" - or in hospital terminology, "peeing like a racehorse." It seems that they've moved away from such terms as "urinating," so that they'll be better understood by more people.
All the fun and freedom came to an abrupt halt on Sunday, September 8. Dr. Robertson was not on call that weekend, so one of his partners, Dr. Ibraham, had the duty to make visits to all their patients who were in the hospital. Lucky me - I didn't know it, but I was their most critical patient. My chart, therefore, was closely scrutinized. Dr. Ibraham went nuts when he saw the amount of fluid I had consumed the day before. He immediately slapped a 600 cc restriction on my intake. Six hundred cc from five thousand? Six hundred cc total for twenty-four hours? That was less than two twelve ounce beers, for God's sake! Imagine having to nurse two twelve-ounce beers as your total fluid intake for twenty-four hours, while sitting in the middle of the desert. The doctor was absolutely vehement about it, explaining that if I continued at my rate of consumption,
I'd be killing myself with the strain on my heart. It was hard to argue against logic like that, so I resigned myself to doing as I was told. That was before I realized how absolutely miniscule the ration of fluid was.
Given the fluid restriction and the dehydrating effects of the Lasix(E), I found myself to be very thirsty. Since this deprivation came the day after I'd had complete freedom to have whatever I wanted, the thirst was magnified even further. The nurse assigned to me, one Ms. Becky Huls, removed all fluids from my food trays, including such seemingly solid items as ice cream, frozen yogurt, and jello. My water pitcher was removed; any quantifiable liquid was now the enemy. I was going out of my mind. Becky tried to help by suggesting sucking on hard candy, chewing gum, eating fresh fruit. Bingo! Fresh fruit. Most are relatively loaded with water, in an amount not quantifiable. I had never been much of a fresh fruit fan, but I changed my mind in a hurry. Special orders were sent to the cafeteria for grapes, strawberries, peaches, oranges and pineapple - no melon. (I hate melon.) The fruit helped, but not nearly as much as I had hoped. The LasixX made me continually thirstier. By that evening, I was absolutely crazed to the point of licking the condensation off the bottom of the cold fruit bowl.
I came to a realization which led to a decision. It was obvious that I was sicker than I wanted to think I was. It was also apparent that control over living and dying was becoming more precarious. The prospect of my heart's failing totally, at any time, and the reality of my facing death head on, turned me into a real tyrant. No longer the acquiescent patient I had been, I reclaimed my life's control, which I had passed to those who supposedly knew what was best for me. If it was possible that I would die the next day, then I sure as hell was going to LIVE that day. At that moment I TOOK MY LIFE BACK INTO MY OWN HANDS! Enough of the 600 cc of fluid bullshit! If another 500 to 1,000 cc was going to kill me, then it should be my decision and risk.
Unfortunately for Lori, I was working this out via a tirade about the situation. She did not want to hear about mv taking further risks, but she understood that I needed to gain back some control over my own destiny, even if it meant fighting against everyone. The anxiety regarding the fluid restriction, in my opinion, was worse than the prospect of more fluid straining the heart to the point of failure. It was NOT going to kill me; I was NOT going to let it. Nothing was going to kill me; as hard as all the factors might conspire to bring about my death, I was not going to die. Armed with this attitude, I was ready to put up one hell of a fight.
I learned - discovered - not to give up control and leave my life simply in the hands of others. If I could not be in control, those times should be limited to unconsciousness and comas, and even then my wishes, wants and needs should be understood by all. This is not too much to ask regarding critical care. I had the right not to accept my prognosis or diagnosis. It can not be called standard operating procedure, but gaining back control and a measure of respect certainly made me feel better about myself. It made me feel better - period! It was a positive step in the entire healing process. I had to stay in control. I had to participate actively in my life, even as limited as it was.
With gaining control and respect, there has to be a burning desire to win one's personal battles. I did not have to accept my fate as prognosticated by others. I may not have overcome that fate, but I believed that my mind, body and spirit had such untapped power and resources that I would find some amazing results. I had to fight to survive. Some miracles happen, but more come about from hard work, a fight, the will to survive. I had that will. I did not know it to be absolute until those who were theoretically in charge had pushed me to my limit. I had a restless night that Sunday, for I could hardly wait for Dr. Robertson to make his hospital rounds early the following morning. He and I were going to reach an understanding, or I was going home! He arrived as anticipated, accompanied by Debbie. It was out of character - and I am sure, a surprise - when I attacked him about the fluid restriction. I ranted and raved and threatened to leave the hospital, since I was not about to go another day living under those conditions. I not only had myself wound up tight, I had monitors going off like crazy. The measurements of pulse, heart rate, irregular heart rhythms, breathing and oxidation levels were all jumping off the screens, screaming. Dr. Robertson was very calm. He let me get it out of my system and then explained their methodology. On Saturday, they simply wanted to observe my general consumption level. The example I set was not indicative of what I might normally consume, but it probably was not far removed, since I had been experiencing the "thirstiest for a couple of weeks. Dr. Robertson went on to explain that once they knew what to expect, they could then set the parameters for fluid consumption. I told him that I thought it was inhumane and a pretty shitty set up, to think that I could make an adjustment of that magnitude overnight. Again, he tried to explain, to no avail, for I was not having any of it. Finally, he wanted to know what I thought we should do. I suggested that we negotiate an amount with which both of us could work. I reminded him that we were talking about MY life. Not his, but mine! We negotiated - he from the 600 cc mark and I from the 5,000 cc level. It was quite a spread, to say the least, but we were able to agree to around the 2,000 level, with my promise to try to do even better. He gained more than I got, but what I got was the opportunity to have some control. Damn, I felt much better! It wasn't easy, but it did make life in the hospital just that much more bearable.
I spent five days in intensive care. The medications and the decrease in body fluid helped me breathe easier and feel better. The worst part of being hooked to a variety of monitors and intravenous lines was the severe limitation of mobility. Even though it was almost impossible for me to get out of bed, I contrived to stand next to it. This was critical, since using a urinal while lying down is, anatomically, almost inconceivable for me to do. That is why standing up was something of a must; otherwise the sheets would need changing every time my bladder exploded. If I were more favorably endowed, this would not have been as big a problem. The whole project made the nurses jumpy as hell. Every time I stood up, my heart rate and other vital measures - monitored on a remote screen at the nurses' station - would go crazy. They would come racing into the room only to find me relieving myself, which tended to be embarrassing, for me at least. Once I explained my anatomical inadequacies and why I needed to stand, they became a little more used to the idea. They laughed at my explanation and allowed me to continue the practice, but they reminded me that I was supposed to stay in bed otherwise. End of discussion.
The only other problem with intensive care was that it was no place to get any
rest. Since it was difficult for me to sleep anyway, the prospect of a reasonable
night's sleep was severely limited. It seemed to me that I was awake all the time.
Sleeping pills did not help. After three days, I was asking to be anesthetized, just
so I could sleep. Certainly that option was a bit extreme. But Dr. Robertson, on
one of his night rounds, allowed the use of some sort of high powered
tranquilizer, which they administered with a monstrous needle into a large muscle.
So into my thigh it went and I fell asleep, or into
unconsciousness.
Last modified:
11 May 2000