In the summer of 1997 I was diagnosed with "End Stage Renal Disease". At 16, I had no idea what that meant. I thought I was going to the doctor with the flu or maybe a strange bug but when I was greeted on the sixth floor at St. Paul's Hospital with over 5 doctor's waiting for me, I knew there was a little more to it than that.
During the summer of '97, I recall several episodes, which I now know were signs of my kidneys failing. I attempted a hike up the Chief in Squamish with my mom-Elaine, brother-Brenden and sister-Dana. That hike begins with about 199 stairs and I was having the hardest time going up. I thought I must be extremely out of shape, as did the rest of my family. They were thinking of enrolling me into the gym! Because I was having such a hard time, we decided to do the hike another day and left, not thinking much of it.
Over the next couple of weeks, I began to gain a lot of weight yet at the same time I had lost my appetite and constantly felt like I had a stomachache. At the time I thought I was just getting sick, like people do, and didn't even think about going to the doctor until one day when I woke up with this strange taste in my mouth. It was like metal and my eye sight was a little blurry. That's when I began to get a little worried.
I remembered my mom going to the doctor with me when I was little and doctors told her that I would be blind by the time I was 15 due to a white spot I had on my eye. Although it disappeared long ago, I thought maybe that problem had resurfaced and now I was going blind. My vision worsened until I could barely see. People directly in front of my face were so blurred that I couldn't see them.
I finally went to the doctor for a check up on my eyes. While I was there, she found nothing wrong with my vision but upon checking my vital signs found my blood pressure to be extremely high. I then had to take a urine test and was sent home. Within an hour, my doctor called me at home and ordered me to go to St. Paul's hospital immediately. I was in shock and scared to death as I had no idea what was going on. The doctor had got hold of my mom at work and she came home to me trying to be strong, but I could tell she'd been crying and was shaken. Mom drove me to the hospital immediately where over 5 specialists were waiting for me to arrive. At that moment I was told I was in acute renal failure. This was a complete shock; I could not really comprehend what was happening. That's was the moment my life took a drastic change that would last forever.
The following week was just awful. As well as adjusting to this terrible news about my health and future I had to endure many invasive procedures. I had a tube inserted through my lower neck to access the blood through a catheter to enable dialysis immediately. The dialysis machine removed 8 kilo's of fluid, which is close to 20 lbs in 4 hours. The quickest way to lose weight if you ask me! That's why I looked as though I had put on so much weight, from retaining fluid.
However going through a physical change in your fluid level like that is a bizarre feeling. I have a slight memory of my blood pressure going up super high; 240/140 and I suddenly became hot and dripping with sweat and my eyes felt like they went into the back of my head and then I passed out. I later woke up and my mom told me I had gone into convulsions and had some type of seizure from the extreme amount of fluid they were removing in such little time. I had to do dialysis 3 times in a row, once each day to remove all the excess fluid I had retained and to remove the poison from my blood. Afterwards my vision was restored and although I had no kidney's, did feel a little better.
I spent the following week in the hospital absorbing what was going on and then was finally sent home. I wasn't used to being stuck in a hospital room, however St. Paul's was to become my new second home. Now that I was on dialysis I had to return for treatments 3 times a week for 4 ½ hours each time. St. Paul's is kind of an old persons hospital, most kids my age would have been sent Children's Hospital, but I was lucky to stay there because my dad was also doing dialysis at St. Paul's That is another long story. My dad had been diagnosed with kidney disease many years earlier and the doctors were keeping a close eye on him for when he would need dialysis. It's ironic that our kidney's both failed in the same year. The doctors however insisted that my dad's kidney disease was the result of damage done earlier and that mine was not related. I have no idea why my kidney's stopped working, but I can only imagine that it is hereditary.
For 8 months I did dialysis at St. Paul's 2 months with my dad before he got a transplant from his sister. During that time, I lost approx. 30lbs. and was hardly eating because I was so sick. I went down to 90lbs and seriously looked like a replica of a skeleton. I had to be put on lipids; IV food and was in and out of the hospital on many occasions. I got pneumonia and through further complications almost died. I endured numerous surgeries and invasive procedures to save my life. Tube after tube (temporary catheters) were inserted through different sides of my chest.
Life completely changed. I was no longer able to have showers or go swimming for fear of infection. I couldn't eat anything that was technically good for you because it was bad for me. Your kidneys also ensure that you don't overdue vitamins and minerals that can kill you if you have too much in your system. I had to take what seemed like hundreds of pills to regulate things my kidneys could no longer regulate. I even stopped going pee
This all happened at the beginning my grade 12 year at Sutherland and because of all the complications, had to take a leave of absence. I could not participate in any of the social activities that I had so been looking forward to all my high school years with my friends since I was too sick all the time. I spent Christmas and my birthday in the hospital with my mom. The longest stretch we stayed in the hospital was 2 months. The highlight of my days was guessing what my lunch and dinner would be. After I realized that they rotated the menu every 8 days, that got boring too. I was aged 17, and looking back it was the hardest thing for me to ever go through. I got so weak I couldn't do anything myself. I had to rely on my mom to wash my hair, bathe me, cloth me and help me walk and if I couldn't do that, she would push me around in a wheel chair. I hated relying on everyone to do everything for me. I had no independence and my self-esteem dropped big time. It was tough on me and on my family, especially since my mom was spending all her time with me at the hospital and she had my brother and sister to take care of on her own.
Immediately my mom decided she would give me one of her kidneys. While I was going through all my stuff, mom had to take all these different tests to ensure she was a match, was healthy and able to give me her kidney. These took a few months, but because I was so sick and so weak, the transplant date was put off 4 times
One time mom and I checked in all ready to get this big operation over with. We both had our IV's and everything was ready to go. The doctors had to cancel the operation 1 hour before we were scheduled because I they realized it was too much of a risk. The stress level was really high. Mom had already been off work and had arranged to take another 6 weeks off for recovery. Then I got so sick, that my mom didn't go back to work because I needed her every day. She didn't even get paid for 4 months! I don't know how we survived.
Finally in March 1998, the doctors decided I was stable enough to handles the surgery. I was still 20 lbs below my weight, but I was improving daily. My mom went in first. It takes longer to take a kidney out than to get one in. She was in there for 4 hours. The doctors put the fresh kidney on ice, sewed her up and brought me in. It's amazing how miraculous it all is.
Right after the surgery I felt 100% better. I started going pee immediately and went from white to pink with rosy cheeks. My createnin (waste in your blood) was at 1600 when I went in to the hospital (normal is 100 or less) and it had come down to 96 almost right away. The operation was extremely successful. I was even up walking the next day whereas my mom was a different story. It's tougher to loose a major organ than to get one. She wasn't looking so good. It took her 3 days to manage to stand up, but once she was up, she got better everyday. After 6 weeks she was back doing the Grouse Grind.
I wish that was the end of my story, but there’s more to learn.( part two coming soon)