I awoke today (Saturday, 6-11-11) to a thunderstorm, lightning gray clouds and pouring down rain. I didn’t sleep well last night and felt like I was in a fog when I got up this morning. I dread this day every year, but was especially dreading it this year. The weather seemed fitting for my mood.
You see, twenty years ago today, my oldest brother Billy passed away in the Emergency Room at Tulane Medical Center in New Orleans, Louisiana. He passed away late in the afternoon. It was the middle of the night before my family was notified. I’ll never forget the phone ringing at 2:08am. When I answered, my Dad was on the line. Obviously, I knew something was wrong as he was calling in the middle of the night. I asked him what had happened. He simply responded “Billy died.” Everything after that was a blur. I still wake up sometimes at 2:08am thinking I heard the phone ring.
My Brother Billy
I’ve written about my brother Billy and his life previously. In case you aren’t familiar, I’ll give you a little background. Billy had hemophilia like me. He had many bleeding issues as did I growing up. Billy was born in the 1950′s. I was born in the late 1960′s. Life with hemophilia was rough in the 50′s and through the 60′s. Billy had a hard time of it. By the time I was born, treatment had advanced somewhat, but nothing like it is today. It was rough. My doctor’s decided to treat my hemophilia with cryoprecipitate and that’s what I received for over 20 years.
When factor concentrate became available, which allowed hemophiliacs to infuse themselves at home, Billy jumped on it. It meant freedom, normalcy, less trips to the hospital. I was probably still in elementary school at the time. I vaguely recall my hematologist having a conversation with my mother about her learning to give me the concentrate at home. She said that she absolutely couldn’t do that. There was never a discussion back then about me learning myself as I was so young. For my brother, who would have been in his late 20′s – early 30′s, it was completely different.
Billy embraced home infusion and it seemed to work for him. He still had many bleeds and often infused multiple times each week. Little did anyone know at the time that he and many other hemophiliacs were being exposed to hundreds of thousands of donors and no one was screening the blood for blood borne pathogens. The world would later learn that HIV and Hepatitis had tainted the blood supply and thousands of hemophiliacs, including my brother would lose their lives. My brother learned in 1986 that he was HIV positive. He passed away in 1991. He died from abdominal hemorraghing after he’d had a procedure to get rid of a kidney stone as well as complications from HIV/AIDS. He was 38 years old.
Some time back, a woman by the name of Marilyn Ness, a two time Emmy Award winning filmmaker, directed a new documentary, “Bad Blood: A Cautionary Tale.” Her film focused on the HIV/AIDS epidemic and how the tainted blood supply infected thousands and became a death sentence for thousands of Americans.
Her film chronicles the worst medical disaster in United States history. Hemophiliacs were receiving many doses of Factor VIII concentrate weekly, exposing themselves to hundreds of thousands of donors. None of the donors were being screened. This applied on a smaller scale to patients like me who received cryoprecipitate. We knew that factor and cryoprecipitate stopped our bleeding episodes. We didn’t know the blood supply was contaminated and that every time we received a transfusion or infusion, we were playing Russian Roulette with our lives.
We’re all probably familiar with Ryan White and Ricky Ray and what happened to them, but perhaps not WHY it happened to them and thousands others. This is an important film for all to watch, whether you’re affected by hemophilia or not. This was a PREVENTABLE disaster! I’m not going to get too specific about the entire story as I think everyone should see this film.
My brother and thousands of others are gone. They can’t be brought back. I don’t dwell on what happened to them or the anger, rage and tears I feel sometimes when I think of this. None of that will bring them back. Hate will not bring them back. We can only now focus on making sure it never happens again. Ness’s film shows how the hemophilia community rose up when they found out the factor concentrate was tainted as well as the fact the contamination was preventable. The hemophilia community took steps to make sure the system was changed so that everyone receiving blood products would be safe from now on.
Watching that film was very, very hard for me. It had an enormous emotional impact on me. I cried throughout most of it. I was angry. I felt like the life was drained from my body. It opened up a room of memories in my mind that I didn’t know was still there. Such a tragedy. I still haven’t discovered why I was spared and others weren’t. That’s been really tough for me all these years. Despite it being tough to watch, as I said previously, it’s a MUST SEE for everyone.
I know my brother and the thousands of other hemophiliacs we lost didn’t die in vain. It was our community that pulled together and fought to get the system changed.
Today was a hard day for me, more so than I thought it would be. I spent the day remembering all the things I loved about my brother and thinking of all that he’s missed over the past 20 years since he’s been gone. My loving memories of him brightened my spirit and by the late afternoon, the clouds had cleared and the sunshine was beaming. I have to believe it was Billy sending me his warm smile.
“We can never turn back the pages of time, though we may wish to relive a happy moment, or say goodbye just one last time, we never can, because the sands of time continue to fall, and we can’t turn the hourglass over.” ~Unknown
If you haven’t seen “Bad Blood: A Cautionary Tale”, I would check it out. It’s being shown on PBS now in various locations, is available on Netflix and for purchase at:
http://www.badblooddocumentary.com
Fortunately, it didn’t land square onto my foot as I’m sure I would have broken multiple bones. At first, it was just sore, so I thought it would be okay. Pretty quickly, it was apparent that I had a bleed manifesting. I went ahead and infused a double dose of factor concentrate and followed RICE. The next day, my foot was still very sore and the bleed still seemed to be going on so I gave myself another dose of factor.
