By Edward Burke
My maternal grandfather had severe hemophilia A. He was injured while working on a construction site. The doctors thought he was having an appendicitis attack, but he was actually bleeding into his abdominal cavity and consequently passed away at age 35. This was when my family became aware of the hemophilia in our lineage.
Since my mom knew she was a carrier of hemophilia, she explained to my dad that if they had sons, there was a 50/50 chance of them having severe hemophilia. Sure enough, all three of us had it! When we were young, we would often wake up at night with an elbow hurting or blood everywhere from a tooth coming in. My parents had their hands full.
I was the first to self-infuse in my family after I learned at hemophilia camp. I was always giving my brothers their doses as well!
My brother Michael was four years younger than me. He went out for high school wrestling. At a match, he made a 13 second pin in the heavyweight division, making the sports page of our local paper. Our pediatrician, who never treated us for hemophilia, saw the news article and called the school. He alerted them that my brother should not be allowed to wrestle due to his hemophilia. Instead of being applauded and congratulated, Michael was thrown off the team.
For two years in my early 20s, I was secretly part of a men’s ice hockey league. Mom didn’t know it, but my dad did, and would come watch me play. He would remind me, “Don’t tell your mother!” While my mom watched TV, I would drag my bag of hockey pads and sticks upstairs. One night when I came home, she decided to investigate what all the noise was about. When she saw me with my gear, she said, “What’s this?” I told her I had good news and bad news. She asked, “What’s the bad news?” I told her I played ice hockey. She said, “Oh really? What’s the good news?” I told her, “I’m team captain, and we’re on a championship run!” She looked at my father to ask if he knew about this, but he was out of the room and up the stairs! He knew when she saw the hockey equipment he had better run! During a game, my knee twisted up, and it just wouldn’t stop bleeding. That was the last time I played. The injury resulted in my first knee replacement.
My older brother James passed away at 24 years old in June of 1980 following an accident. My father was destroyed – he died of a broken heart just two years later.
Michael and I were diagnosed with HIV at our Philadelphia treatment center in 1985. My mother was already crying when we walked into the room. We were given the news that we tested positive for HIV and that we had about seven years to live. I asked, “So you’re saying by 1992, my life will be over?” The doctor explained those were the statistics. In a way he was right… in October 1992, I got married! Joking aside, thirty years with my wife and she has seen a lot of this too, having attended many blood brother funerals. Sadly, my youngest brother, Michael, passed away at the age of just 35 in 1997 – his death tagged as hemophilia-related AIDS.
My mom is currently 88! She is still very much a hemophilia mom. Everything her sons went through continues to weigh heavy on her heart.
Sixty years of life with hemophilia and I have a pretty good pain threshold, but the bleeds hit hard. One time I was driving my friend to the airport and almost took my car out of the lane because of a breakthrough bleed in my elbow. The bleed was so bad I couldn’t move my hand to steer the wheel. Taking a weekend trip to attend a meeting or event and I feel the effects of aging. I was in Nashville, returned home and waited three days for my knees and ankles to get back to normal just from being on foot and walking around the city.
As we age, we learn things like pain may feel like a bleed, but it’s not a bleed—it might be arthritis or just a muscle ache. It feels like I wake up with something every day. I can still bleed into my artificial joints! The pain is sometimes intolerable.
Living long enough to have arthritis is not something I had banked on. I’ve had all these target joints and some just don’t work as they should—like my right pointer finger that doesn’t bend like it’s supposed to.
But the most difficult part of growing older is when we lose a friend. I try to stay close with the friends who are still here. Everyone young enough not to have been exposed to tainted clotting factors should watch the movie And the Band Played On. It will serve as a reminder that the “hemophilia holocaust” shouldn’t have happened to our community. Even with advances in medical treatment, HIV/AIDS and hepatitis C continue to claim the lives of people in our community who were exposed to tainted blood products in the 1980s.
One misconception is that people with hemophilia have “thin” blood so they can’t have heart problems – WRONG! My second AFib (Atrial Fibrillation) put me in the emergency room. My daughter was outside the ER yelling at the medical staff to let her in with my clotting factor because although she didn’t know what was wrong with me, she knew I needed to get factor. The cardiologist put me in the ICU and told the nurse to start blood thinners immediately. All I could say was, “HOLD ON, I AM A BLOOD THINNER! I DON’T CLOT!” My cardiologist told me, “Hemophilia really puts a kink in the armor and changes how we can help you.”
In addition to AFib, I have psoriatic arthritis. It’s difficult for a cardiologist or rheumatologist to treat with their go-to medications. For example, the medication I take for the psoriatic arthritis treats the symptoms, but it also lowers the immune system. That complicates things when combined with my HIV medications. As we grow older, other medications may be problematic when combined with medications we take for hemophilia and HIV.
Many times, I have been wakened in the middle of the night. It’s my daughter calling. Every three or four weeks, she wakes up from a bad dream and has to check on me. I tell her I have no plans to go anywhere anytime soon and that I feel fine. It’s heartbreaking to know your daughter is so concerned about your health that it keeps her up at night.
In my retirement, to stay busy and make a little extra money, I signed up with a talent agency and have been doing movie parts and voice overs, and I play guitar and have done performances. I enjoy trying to entertain others. My dream for retirement was to keep playing and entertaining, but it has become more difficult as my left hand’s ability decreases as the arthritis increases. I often ask myself, “Is it a bleed or is it arthritis?”
These are the things we deal with as we age, but we must keep living life to the fullest! I am still active in the bleeding disorders community and will participate in a hemophilia walk in the fall. I enjoy spending time with my wife and watching my much-too-beautiful 21-year-old daughter grow into a mature young woman.
My advice to the younger set is to always stay positive! Be active, and stay engaged in the bleeding disorder community. Make friends. Reach out to your community brothers and sisters when you’re having a problem—they will always be there for you! My close blood brothers and I have been saving each other’s lives and sanity for years!
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