Living With Hemophilia, I Am Both Thankful and Heartbroken
A sentiment to describe post-hurricane destruction also works for life with hemophilia
Hurricane Ian, which battered the southeastern United States and the Caribbean in late September and early October, nearly destroyed the home of a client of mine. She compares the damage to a violent tornado combined with a devastating flood. Parts of her home were gutted. In the aftermath, she told me she realizes it is possible to be thankful and heartbroken at the same time.
My hometown of Punta Gorda, Florida, was in the hurricane’s eye. My condo sustained minor damage, including moisture issues on the walls, damaged screens and windows, and a refrigerator that has gone wonky. Overall, the damage is insignificant compared to what many others are facing.
As I drive through my community, my heart breaks for those who lost everything. Neighborhoods, businesses, and lives are ripped apart. At the same time, I am thankful to have a safe home with a roof over my head.
Thankful and heartbroken with hemophilia
Her phrase “thankful and heartbroken” resonated with me. I’ve been thinking about how I have been thankful and heartbroken so many times when dealing with the bleeding disorders hemophilia B and von Willebrand disease.
I am thankful to have been diagnosed with bleeding disorders in the 1970s at age 10. Many women suffer for years before their diagnosis. For my family, it was a relief to have an answer that explained my bleeding episodes. At the same time, it was heartbreaking to have such an unfamiliar diagnosis, as bleeding disorders do not run in my family.
In the ’80s, the hemophilia community lost thousands of people due to a tainted blood supply. Before doctors knew of the existence of HIV, it had slipped into the national blood supply. The medications used to treat my bleeding disorders are made from human blood, and the blood of thousands of donors is used to create a single dose of factor. The medication infected many people with hemophilia with HIV/AIDS and hepatitis. I made it through mostly unscathed, but I know many who were not so lucky and lost their lives at a young age. I am thankful and crushingly heartbroken for those who are not with us today.
In my 30s, I gave up my fertility. I was constantly anemic from the heavy bleeding, and my doctors told me I could never carry a pregnancy successfully due to my bleeding problems. An operation ended my fertility and transformed my life. My monthly periods no longer imprisoned me. I was thankful for the relief and heartbroken for the children I wouldn’t be able to have.
Before a major surgery in 2019, I was anxious about complications from my bleeding disorders. I spent months preparing. My hematologist then developed a plan to ensure I would have no bleeding problems during or after surgery. I felt confident, as did my surgeons. Unfortunately, the medicines caused unwanted side effects, and I developed life-threatening blood clots in my lungs and could have died. I survived, thankful and heartbroken for the damage done to my lungs.
Volunteerism to help heal
I recently volunteered with the nonprofit Operation BBQ Relief to provide meals to first responders and people devastated and displaced by Hurricane Ian. Volunteers came to my hometown from as far away as California. Several volunteers were from areas that dodged the brunt of the storm, such as Tampa and Clearwater, both in Florida.
As we took a break and broke bread, we were thankful that we didn’t have our lives ripped apart, yet we were heartbroken by the devastation all around us.
Thankful and heartbroken, I am settling into a new normal.
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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