Fighting to be heard on my journey with bleeding disorders
Women with bleeding disorders often have to speak up to be properly treated
What do all the people with bleeding disorders I’ve interviewed for this column have in common? Each of them has a story about certain doctors not listening to them.
I have a story about that, too. But first, I want to acknowledge that I now receive exceptional care from my hematologist and the rest of the team at my hemophilia treatment center (HTC) in Tampa, Florida. If you work there and are reading this, please know that I am immensely grateful to you, and because of you, I am doing well.
In 1975, when I was a child, I was diagnosed with multiple bleeding disorders after experiencing severe bleeding following a tonsillectomy. I still don’t fully understand my diagnosis. After revisiting my complex treatment plan with a detective’s lens, it appears the issue involved my factor levels and platelets.
My treatment plan involved fresh frozen plasma, cryoprecipitate, and platelets — something I remember quite clearly. I underwent several knee surgeries following this regimen, and they all went relatively well. Then, my pediatric hematologist retired.
In 1983, at 18 years old, I had the privilege of visiting one of the nation’s foremost hematologists, Joan C. Gill. Gill was based in Milwaukee, Wisconsin, near my hometown, and specialized in von Willebrand disease (VWD).
To this day, she remains the most exceptional doctor I’ve ever met, and I’m forever grateful for her. During my bleeding episodes, she’d call the hospital to personally talk to me. She genuinely cared, and even guided me through the tragic tainted blood era, when thousands of people with bleeding disorders were infected by blood tainted with HIV and hepatitis.
After carefully listening to me describe my symptoms, she suspected I might have VWD. Sure enough, my von Willebrand factor levels were low, and just like that, I was given a new diagnosis. Gill then put a treatment plan in place.
But every year, during my annual appointments at the HTC, I voiced concerns that my treatment plan wasn’t working. Despite following the regimen, I was hospitalized several times due to post-procedure bleeding. I also struggled with anemia and my menstrual bleeding was severe and unmanageable.
I felt unheard and so frustrated that I’d go home and cry, wondering if it was all in my head. At times, I felt like giving up, resigned to the idea that I’d just have to live with extreme bleeding episodes. Yet deep down, I knew something was seriously wrong.
New testing reveals another diagnosis
According to my medical records, as documented by a nurse, “She is questioning her diagnosis because she stated when she was younger her doctor had a completely different diagnosis for her and she was treated with [cryoprecipitate] and [fresh frozen plasma] and platelets and didn’t have this many problems with bleeding. I told her I will discuss this with Dr. Gill.”
Thankfully, in 1998, Gill agreed to conduct additional tests. She listened to me. The results showed that my factor IX level was low, indicating hemophilia B, and I also had an issue with my platelets. I wasn’t crazy after all.
Gill looked me in the eye and said she was very sorry. She added factor IX and platelets to my treatment plan. In 1998, prescribing factor products to a woman was unheard of.
Today, my treatment plan includes medications for both hemophilia B and von Willebrand disease. I can honestly say that I feel heard and am in a good place with my bleeding disorders. It is not “all in my head.”
I recognize how fortunate I am, as many women are still struggling to receive a proper diagnosis and effective treatment. I hope this will change — and soon.
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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Comments
Pattie
You could have written this about me. I've been dealing with this almost 45 years. Back then, there wasn't any internet and later when there was, there was nothing devoted to Hemophilia. I had the same hematologist until he retired 2 years ago. I've tried 3 since then and none of them take me seriously, like I'm emotionally disturbed. The latest one has tested me with all kinds of blood work. It's gotten to the point that his nurse has never heard of the tests and most of the lab techs haven't either. He says that if he can determine what the cause is, that he can determine which drug to give me during a bleed or procedure, but he keeps telling me that he can't find anything wrong although he has read my file from the hematologist that took care of me for all those years. I had to have a hysterectomy to stop that bleeding, but the bleeding moved to other organs and although my doctor tried everything to stop it, I still had to take whole blood and was sent home to settle my affairs. I made it through that and don't want to go through that again with a doctor who doesn't take it seriously.
Then recently I read about an additive to Stevia that causes blood clots which can lead to heart attacks and strokes. I thought using this sweetener was healthier than sugar and have been using it for several years. Usually I only put about a teaspoon in my morning coffee once a day. So now I'm wondering if that's what has caused the difference in my blood. I'm now going to get a blood test that requires a certain trained person to get it right. I have stopped using any sweeteners and will ask my new hematologist about Erythritol. Maybe this is the treatment for bleeding, but comes with risks using it long term.
I hope this finds you well and hopeful.
Jennifer Lynne
Thank you for reading and adding your story. I am so sorry about all that you have been through. I hope you get the care that you need!