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Christian - Cultivating happiness

by Christian Pelletier
, Montreal, Quebec

In 1978, at age 4, I was diagnosed with severe hemophilia A by Dr. Georges-Étienne Rivard, world renowned hematologist-oncologist in bleeding disorders, at Sainte-Justine Hospital in Montreal. There was no history of bleeding disorders in my family and neither of my two brothers had this problem. In addition, none of my bleeding episodes had been “dramatic” enough to raise suspicion among the doctors at my hospital in Lévis, a city on the south shore across from Quebec City.

My mother might not agree that there was nothing dramatic – finding her 6-month-old baby in a pool of blood in the middle of the night, due to a small cut inside his mouth, was certainly not normal and quite alarming. Throughout that bleeding episode, which lasted several days, doctors repeatedly told my mother that the bleeding would eventually stop. In the early days, my mother and I went back and forth between Quebec City and Montreal to get treatment whenever I had a bleed.

Then we learned there was a treatment centre at the Saint-Sacrement Hospital in Quebec City. The first treatments I received for bleeds – mostly in my right knee and ankle – were cryoprecipitate but not long after, in the late 1970s, I began using factor VIII concentrate, a new product that was much more effective.

Growing up, I mainly had problems with repeated bleeds in my right knee with at least one bleed per month in this joint and a convalescence on crutches for up to a week. But, in general, I managed living with hemophilia well enough, aside from the frustration of not being able to engage in certain physical activities because of their high risk for causing bleeds.

In 1984 I learned that I had been infected with HIV and hepatitis B and C through my factor VIII concentrate treatment. This was obviously a significant moment but even though at the time it was said that people with HIV would not live beyond five years, I did not think about that fatal outcome. Instead, I was obsessed with what my mother told me in the car on the way back from the hospital: “You’ll have to be careful with the girls.” So, even though I literally faced death at age 20 from complications linked to AIDS, I was more affected by the “complications” I would have with girls. I didn’t restrict myself from dating, but it was always difficult and agonizing when the time came for me to divulge my medical situation. I don’t know if I was just lucky but I was always treated with respect. For their part, my parents and two brothers lived with the certainty that I would die from one year to the next; in the 1980s, it was said that no one escaped AIDS. It seemed then like a little miracle when the first effective HIV treatment medications appeared, as I was weakened by various infections with my immune system wiped out. I had started taking HIV medications at age 15 but they had proven totally ineffective. The immune system is complex but in terms of the portion affected by HIV, a normal person would have a count of about 800 to 1,400 protective white blood cells (CD4). At age 20, I literally had a zero! Today, thanks to effective medication, my blood count is between 600 and 800, which is plenty for a healthy life without infection. HIV medications are continually evolving – in the early days, I took medication three times a day at mealtimes, whereas I now take medication just once a day.

As for hepatitis C, I’m among those lucky few who cleared it naturally, which occurs in 15 percent of cases. This was a great relief and a burden off my shoulders. Others have not been so lucky …

While I weighed around 110 pounds (50 kg) when I was 20 years old, things changed quickly as I approached 22 and the new HIV medications began to have positive effects on my immune system. My energy and health returned and I began bodybuilding with a couple of good friends. With five to six workout sessions every week for five years, I regained the weight I had lost, and then some! By age 28, I weighed over 180 pounds. However, my legs were out of proportion because I could not exercise them enough due to the problems with my right knee, which was always painful, even with very light exercises. My right knee caused the most frustration in my life, starting around age 24. The repeated bleeds had done a lot of joint damage and I experienced a great deal of pain when walking. It was a major handicap for any activities that required walking.

As my mother has always been involved to varying degrees with the Quebec Chapter of the CHS (CHSQ) or the Canadian Hemophilia Society, I had opportunities to meet other people with bleeding disorders. The CHSQ and CHS allowed me the chance to flourish with hemophilia through all the activities, meetings, camps, conferences and trips that they organized over the years. As a teenager, the first people with hemophilia that I remember meeting were François Laroche, Éric L’Hérault and Jacques Duval. I would call them my hemophilia mentors. For me, they were the “grown-ups” and they imparted a lot of wisdom at times when I needed it.

But the most important encounter came when I was 36 years old. There was a beautiful redhead named Geneviève Beauregard working for the CHSQ and everyone seemed to really like her! In fact, I’d met her several years earlier, but Geneviève, ever professional and respectful, was not so easily charmed. Aside from her exotic beauty, the first thing I noticed was her generosity, dedication, attentiveness, and self-assurance. A little ray of sunshine! We started dating in the spring of 2011, shortly after the CHSQ Family Weekend. You can imagine what it meant to me that she already knew all the details of my medical condition …
Because life is full of challenges (and I like it that way!) the following July, I had a “little” artery blockage according to the cardiologist. A heart attack. I had to undergo surgery to insert a stent, a tiny spring-like device that inflates like a balloon in the blocked artery to restore blood flow. Obviously, I asked myself: why a heart attack at age 36? Apart from risk factors common to everyone, HIV had inflammatory effects on my veins and arteries and could have contributed to their ageing. In addition, certain HIV medications have negative effects on those fats in the blood which normally contribute to good cardiovascular health.
Since my heart attack, I now take cholesterol medication, 80 mg of aspirin, and blood pressure medication. Aspirin of course is normally prohibited for people with hemophilia, but in my particular case, the benefit in alleviating my heart condition is greater than the negative side effects related to hemophilia. Since taking aspirin, only my gums seem more susceptible to bleeding. It does not interfere with the effects of my factor VIII treatment but has a negative effect on blood platelet function, which in my everyday life is negligible. Consequently, I have not had to modify my factor VIII prophylaxis regimen since my heart attack.

In 2014, thanks to Geneviève and Claude Meilleur, nurse at the CHU Sainte-Justine in Montreal, I had the opportunity to meet an orthopedic surgeon who would change my life. Pain in my right knee had become extremely limiting and began to seriously affect my morale and mood. I had flexion problems in my knee and ankle whenever I walked. Dr. Marc Isler suggested a different approach from how cases like mine are usually treated. Instead of replacing my knee with a prosthetic, he proposed a surgical procedure that involved cutting my femur at a corrective angle in order to restore optimal alignment to my whole leg. It’s been two years since my surgery and I’d say that my condition has improved by 80 percent overall. Another small miracle! Whereas in the past I was anguished by the mere thought of leaving the house to run errands, nowadays I don’t even think about heading out for an hour-long hike on difficult terrain. I am now able, at age 42, to walk for a long time without pain. Better than at 25!

Today I’ve been living with Geneviève and her twins, Alexandra and Alissa; for almost six years. It’s a privilege to be step-father to these girls, who I consider my daughters. They are the nicest surprise I’ve had in my life, because they are simply extraordinary and they help me grow in positive ways.

Thinking back, it would be easy to imagine that I could have held myself back over the years due to hemophilia, HIV or even my heart attack. But I choose to never be bitter at life-I work to be happy with the elements of my life that I can control or change. I accept that I live in a world that I don’t always understand. I choose to cultivate happiness and then to share it.

- March 2017