This advocate for hemophilia patients needs a liver transplant
Wayne Cook fought for compensation for victims of tainted blood products
Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure.
He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that follows Wayne’s journey across the country to reunite with fellow hemophilia survivors from his generation.
When he was in his 20s, Wayne, now 63, became president of his local hemophilia chapter, kicking off a lifetime of advocacy and service. He has served on the boards of the Hemophilia Federation of America, the National Hemophilia Foundation, and the Coalition for Hemophilia B.
His tireless efforts were instrumental in advancing the Ricky Ray Hemophilia Relief Fund Act, which provided compensation to those affected by tainted blood products in the 1980s. Wayne shared that, in addition to his paid job, he regularly volunteered countless hours each week, demonstrating his unwavering commitment to supporting the hemophilia community.
Now, Wayne needs our help. He is facing a battle for his life and needs a liver transplant due to liver cancer, a tragic result of the hepatitis C he contracted from tainted blood products in the 1980s.
I recently had the honor of speaking with Wayne via Zoom. Excerpts of our conversation follow:
JL: When were you diagnosed with hemophilia B? Also, can you tell me a little about your life growing up?
WC: I was born in Oneonta, New York, and grew up in Richfield Springs, New York. Both are small, rural communities with populations of less than 20,000 people. I was diagnosed with severe hemophilia B when I was 6 years old.
Before that, when I was around 4 years old, I hit my head and had a subdural hematoma. It wasn’t getting better, so the doctors did surgery. Two years later, I had my tonsils [taken] out, and the doctors had a hard time stopping the bleeding, so they referred me to a specialist who diagnosed me with hemophilia.
In the early 1960s, there wasn’t much knowledge about hemophilia, and my parents didn’t know much, either. They were told the [prognosis] was 18 to 21 years old. We didn’t have big hospitals or much education, and they treated my bleeds with fresh frozen plasma.
My parents divorced when I was 9, and it was a tough childhood.
How did you first learn that you were infected with hepatitis C from your treatment?
I was diagnosed [with that] in 1992. The doctor called me in and told me I had both hepatitis B and C, but my liver function was OK, so they just monitored it. After two years, I started getting sick. My doctor put me on interferon. It was like chemotherapy. It made me really sick and messed with my mental state.
I wasn’t getting any better, so a friend of mine who also had hepatitis C and AIDS told me about a doctor in Florida. That doctor started me on pegylated interferon and ribavirin together. It was 18 months of pure hell — in and out of the hospital. The treatment destroyed my immune system. I was getting all of these infections. Doctors thought I had AIDS because my immune system was gone.
The treatment caused severe damage to my liver. I developed cirrhosis, which eventually turned into liver cancer. Now, I need a liver transplant.
Tell me about the surgery.
When a liver becomes available, I’ll have just eight to 10 hours to get to the hospital, which will be hard. My doctors are at Cleveland Clinic [in Ohio] and Duke University [in North Carolina]. I live in North Carolina, but even Duke is more than three hours from my home.
If I have the surgery at the Cleveland Clinic, it’ll take up to 18 hours, because they say I need open-heart surgery, too. They’ll do the heart surgery first and wait to make sure everything is fine, and then they’ll do the transplant. I’ll need to be away from home for two months and in the hospital for at least two weeks. I’ll have to go back to the hospital every day for a while. There’s just so much [involved].
How has this journey impacted your financial situation and daily life?
It has affected them big time. I’m traveling back and forth, to and from the hospitals. The medical expenses, hotel stays, travel, and finding someone to watch our dog all add up. Plus, I have to pay my mortgage and all of my other expenses.
On top of that, my wife, Kelly, lost her job earlier this year. So it’s hard. I need her with me at my appointments. She has a lot on her plate. I don’t know how she is doing it. It’s a lot to figure out, and it’s a scary place to be.
How we can help
Wayne has always been there for the hemophilia community, and now it’s our turn to rally behind him. Together, we can support him on this journey, because no one should have to fight alone. A GoFundMe page has been set up to assist Wayne during this challenging time.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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