I intend this as mainly a food blog because it’s a large part of who I am, but another element of my identity circulates around the name “tripleheartbeat” itself. It revolves around a massive series of health issues that I’ve experienced over the last decade or so.
In the late summer of 2000, I was bouncing back and forth working in restaurant kitchens and managing a Subway in Regina. None of them completely engaged passion within me, but it paid the bills. Occasionally I would develop a cool recipe at a restaurant I was working at, or garner praise for the dedication and quality I produced at Subway, but ultimately it was a blur of work, mental development and essentially growing up.
As that summer came to a close, I found myself wearing out much more quickly. My inexhaustible energy suddenly had limits. Where once I could work for 10 or 12 hours without sitting down, became having to sit after an hour or so. I finally took a few days off in mid-August of that year thinking it was a cold or other minor bug. I went back to work not feeling refreshed, but obligated to continue. Even after my feet began to swell a little, I brushed it off as standing too much, or some other minor irritant.
One morning a few weeks later, I realized I couldn’t walk more than a block. I went to the ER to get checked because my swelling in my feet had become worse and my weakness was pretty much constant. They thought maybe it was a kidney problem so they sent me to a kidney specialist a few days later. I saw the specialist and he gave me painkillers to deal with the painful discomfort of the swelling and sent me home.
I was back to the ER within days because my weakness and swelling was worse and they gave me a 24 hour urine sample to take home. I took a taxi back to the hospital the next morning with nothing more than mere drops of urine over a 24 hour period. I slumped at the reception desk, set the near empty container on the counter and said,”Please do something, this is empty.”
They finally did a chest x-ray and ECG and found that I was in advanced stage of cardiomyopathy. Basically my heart had swollen and distorted to nearly three times it’s normal size and was in end stage heart failure. This caused a cascade effect with my other organs, shutting down my kidneys and damaging others in ways yet to be determined.
Regina didn’t have the facilities to deal with that level of medical emergency because I was going to need a heart transplant at the very least, so I was immediately shipped via air ambulance to Edmonton. There, I was placed on a myriad of machines to replace heart and kidney function. Within a two week period from there, I had begun to eat less and less. I have always had a rapid metabolism and I had begun to lose weight.
Just as the Thanksgiving weekend passed, they found a donor heart that they normally wouldn’t use because the donor was positive for Hepatitis B. With little choice, and the threat of a leg amputation to reduce the work of my failing heart, the heart was transplanted on October 12, 2000.
I was barely awake from the surgery long enough for them to say to me that they needed to go back into surgery to remove my spleen. This began a series of decisions that really weren’t decisions. The “do this or you die” decisions. They removed my spleen within days of the heart transplant and also looked for other damage during that surgery. An almost comically large frown-face looking scar resulted and I remained in cardiovascular ICU.
I was still hooked up to a machine in ICU to filter my kidneys gently. Dialysis is quite a rough procedure at the best of times and in my condition at that time, I couldn’t handle it, so they used what is called a Prisma machine. It stays attached 24 hours a day, unlike the relatively shorter 3-4 hour time for dialysis. The doctors told me that they would wait a month to see if my kidney function would return.
A month passed, I still was not eating and the IV feed was becoming dangerously inefficient. At my healthiest I was never more than 170 lbs(77 kg) and I was losing weight faster than they could push into me. Soon I was nearing the 40 kg (90 lb) mark and they had to force feed through IV. It damaged my partially damaged liver more and finally was giving tube feeding thru the nostril and down directly into the small intestine.
I battled infection after infection because between my weakened condition, my frail body and medications to suppress my immune system, I was very susceptible. They did various radical treatments to basically wipe my body clean of any immune system in the hope any remnant of infection went with it. Being stripped of all muscle mass, body fat and even some bone loss, I was bed-stricken for months. Brief attempts at physical therapy were met with moments of success, then extended setbacks.
With complete kidney failure determined, a kidney transplant was also necessary, but because of my extreme frailty, I had to get stronger and wait for my liver to get better. I learned afterwards that my liver was damaged nearly to the point of needing transplantation as well, but over the course of another year and a half in hospital, the liver gradually got better. My belly was swollen with retained fluid cause by liver damage, so they periodically “tapped” my belly with a suctioned needle and tube. About once a week they would draw between 10 and 15 litres of fluid.
I gradually started being able to eat, but had to learn to swallow again because every muscle in my body had to start over. I could swallow a thick bolus of food if it was properly chewed, but couldn’t drink anything because it went down too fast and I would choke. Eventually I was able to swallow everything and gradually could do physical therapy.
Starting by being physically transferred to a wheelchair, I was disconnected from the Prisma for 1 hour a day to do physiotherapy. I rode a stationary bike for a few minutes at first, then it became 10 minutes, then 15, then 20, then a half an hour. I did very small scale exercises without weights, then gradually with a little weight, then a little more.
I also went through various occupational therapy sessions to grip a pen again or grip other utensils. Having my passion for cooking, the occupational therapy department of the hospital had a kitchen and I actually cooked about a year into my hospital visit. I did it from a wheelchair because I couldn’t stand on my own, but it was a first step.
This went on for several more months and my liver was gradually getting better. The tapping became less frequent, but I was still on a very strict fluid restriction because of my kidney failure. My family started to get tested to donate a kidney around January of 2002. Both my eldest brother and my mother were matches, but my brother couldn’t do without one, so my mother continued the work-up to donate one of her kidneys.
After several more months in hospital, doing more physiotherapy and freeing me from the Prisma for more and more time each day. What was once 24 hours a day became 20, then 18, then 15, then 12 hours overnight while I slept.
Initial rumours of the kidney transplant started to float around the ICU for April, but were dashed, then May long weekend, but I developed another infection and it was delayed for six weeks of anti-viral medication. Once that was cleared, a date was fixed for the kidney transplant: July 2, 2002. My mother, who lives in Hull, Quebec, took off the necessary time from work. Normally a donor needs to take about three months off to recover.
The day finally came and my mother had one of her kidneys removed and given to me. A moment I cannot readily describe in words. One of my aunts said it was as if my mother gave me life twice. That’s true, but I don’t think it covers the massive collection of emotions that flood through me when I think of what that moment meant. It meant going from being permanently attached to a machine to increased strength, better health, a future, freedom.
My physiotherapy accelerated by leaps and bounds from there. From a wheelchair, to using a walker, to walking on my own. All this within another couple of months.
After nearly two years in hospital and another couple of months of physiotherapy, I was eventually able to go home to Regina.
It was home in my mind, but when you’re in your late twenties and you disappear for two years, most of the people you knew move on with their lives. Marriage, moving, disconnection, inability to comprehend what I went through all factored into being essentially alone in my new life. A couple of friends tried to support me, but they had their own struggles, like most people do. With that and the paltry medical support I received in Saskatchewan I eventually moved to Edmonton. I was going back and forth for the heart transplant program appointments every three months and the kidney transplant specialist in Saskatchewan was gradually causing more harm than good.
After the extended hospital stay, the overmedicating from the doctor in Saskatchewan and the travel, my transplanted heart was not ideal. Oddly enough, the Hepatitis B issue in the donor became non-existent. They did periodic testing to ensure that I didn’t develop anything.
The main issue with the heart became the gradual narrowing of the heart vessels in the transplanted heart. After stents to try to open up the vessels were only temporary solutions, I started getting run down again. In early 2009, they started putting me on bloodthinners to ensure bloodflow.
Later that fall, I was hospitalized with chest pressure. Another angiogram showed that the vessels were becoming too plugged and another transplant was going to be necessary. A series of tests were done over the course of the next month or so and early into 2010 I was listed for a heart transplant.
In May of that year, I was called early in the morning of May 18. They initially said they may have a match, but needed to do an angiogram on the donor’s heart before saying for sure. They called back a couple of hours later and told me the transplant was a go.
I went to the proper area of the hospital and found several others who received a similar call. Two getting kidney transplants, another person getting lungs, another liver. One person, it seemed was going to save a handful of others, affecting dozens of lives by saying, “Yes” on their donor card. I’m not overly vociferous about organ donation. I realize some people have various opinions on whether to donate or not. If it’s religious or other philosophical or spiritual reasons, I’m not going to argue with that, but for the most part people don’t have an issue with the idea in principle. It’s the unusual barrier in people’s minds, I think, that somehow they are not whole if they give away their organs. There are some religions that state that explicitly, so I’m not going to dispute it, but by not donating out of any irrational fear seems odd to me.
I’ve been approached to be a part of transplant mentor programs, but I’ve always thought that my story is so extreme that it would perhaps scare potential organ recipients needlessly. After the suffering I saw my family go through, I found it difficult to inflict further suffering on others. Some people say,”Oh, I understand, don’t worry.” There will be a part of them that will think,”What if that happens to me?”
I gradually share my story to new people I meet, to try to gauge how much they can handle. Some people tear up at the initial story of having organ transplants, let alone the lengthy hospitalization, the physical struggles and whatever else. Yes, I’m writing about it now, but it’s more out of catharsis than out of any illusion that people read blogs, especially mine. If people do read this, then they can stumble upon a stranger’s life and his struggles. But don’t we all struggle and suffer in our own ways? Don’t we all want to end the suffering in others? I’m just one man among billions who only wish people would be a little nicer, have a little more compassion for their fellow human.
So I had the heart I was born with, then another heart from someone I never met, and now I have a third heart from another amazingly generous individual. One heart became three, this tripleheartbeat became me and with anything I do with this heart, it’s only to share the same kindness that those who gave before me, showed by sharing after their own heart beats stopped.