My journey to a new life
by Paul McNeil, Sudbury, Ontario
I was never able to play hockey, I wasn’t on the basketball or football team in high school. I wasn’t able to play dodge ball or wrestle or do many of the things my friends did. Instead I was on the swim team, I read lots and took music lessons. The other thing I did that was different was that I also had to go to the hospital often for treatments that, as a child, I had great difficulty explaining to my peers, let alone adults.
Now, all of that has changed.
But first let me explain. In October 2000 I became the first severe hemophiliac to complete a full marathon. Since then I have done eight. The Toronto international marathon in 2005 was my last one. I had been having difficulty with fatigue. I knew I had contracted hepatitis C and was also a chronic carrier of hepatitis B, and that those two infections can play havoc with your liver. I had seen a hepatologist and he told me that there was nothing wrong, just that my enzymes were elevated. I wanted a biopsy but he would not do it. I knew my body, I knew something was wrong.
In the line at that fateful marathon in 2005, I knew in my heart that I couldn’t complete it. I wrestled with my pride and decided that I would only do a half. I completed the race without difficulty, pride slightly bruised but my health intact.
In January 2006 I started having difficulty at work. My supervisor was finding me asleep at my desk. I had no recollection of falling asleep. My concentration was suffering. I was putting on weight and not feeling well at all. After a number of tests and procedures, the infectious diseases doctor in Sudbury referred me to a colleague in Toronto. Finally, a biopsy determined that I had another type of hepatitis that is common in Europe but not here in North America. The doctor figured that somewhere along the line I had received blood tainted with this virus. Hepatitis D. (An interesting fact about hepatitis D is that it needs a chronic carrier of hepatitis B to survive. Guess who the lucky guy was.)
He said that I would need treatment but that the treatment may or may not help: “It will either cure you or kill you.” I wasn’t able to work while I was on the treatment. He gave me possibly two years to live without a liver transplant. In October 2006, I took a sick leave from work. Exactly one week later, my boss called to tell me I was being laid off. On top of having a potentially fatal illness, I now had no job.
Jump ahead to February 2007. I was ill, on more pills than I could count, not eating, sleeping most of the time. This marathon runner was now reduced to walking places with a cane in a half confused state. I spent my days lying on the couch and in pain. I had been placed on the transplant list; but the treatment had failed and since the treatment had almost killed me, my time was shorter. Maybe a year.
I had many close calls during my illness and had one false alarm for a transplant. The doctor told me in July 2007 that I didn’t have much time. On August 9, 2007, my phone rang and I ignored it because I was talking with the dietician. Then my cell phone rang. My daughter brought me the phone. Then my transplant pager went. When I retrieved the message I heard the sweetest words: “Paul, we have a liver for you.” I went into surgery August 10, 2007, at 8:30 a.m. And woke up that night with a new liver and no hemophilia.
I am now almost two years transplanted. I can honestly say that not having hemophilia hasn’t really affected me other than this simple fact. When I hurt myself I have no idea what to do. Tylenol seems like too little. My wife just tells me to suck it up and my brother, who is also a hemophiliac, tells me to get over it. I guess I will, someday. I’m just holding out for my dad to give me his hockey equipment… once I learn to skate that is.
I have three young daughters, they are now 7, 6, and 4. All that played on my mind was leaving them without a father. Leaving my wife without a husband. My wife was a solid unwavering support. I honestly have no idea how she did it but by God’s grace we made it together.
In closing let me say this. My friends that I had made through the hemophilia society stood by me in such a way that is incredible. Marc LaPrise opened his home to me after my surgery for my month-long stay in Toronto. Others offered supportive words and a listening ear. For that I owe you all my thanks.
- Winter 2009