AJN, American Journal of Nursing:
So much of what I read in “Just Heavy Menses or Something More? Raising Awareness of von Willebrand Disease” (June) reminded me of my own experiences.
I've had significant bleeding episodes after two surgeries. Just before the second surgery, my cousin told me he'd been diagnosed with von Willebrand disease; some of his children were found to have it, too. His father and my mother were siblings, but it would appear I've inherited this disorder from both my parents, both of whom bled to death—my father from the rectum, and my mother from a cerebral bleed.
However, I didn't mention this to my health care providers before my second surgery, about 20 years ago. My surgeon told me later he'd read about patients with von Willebrand disease but had never seen anyone experience such bleeding after surgery. Soon after, he cared for another patient who had a similarly dangerous bleeding episode. He told me they were only able to save her life because, after treating me, they quickly recognized what was happening and knew how to best treat her.
Testing eventually revealed I had a variant of type 2 von Willebrand disease. At first I was given cryoprecipitate, but now I use only Humate-P (before undergoing a colonoscopy, for instance), a treatment I didn't see mentioned in this otherwise informative article.
Recently I was retested for von Willebrand disease and feared that if the results showed I no longer had it, I would be left to bleed. As the author of the article stated, results can vary depending on several factors, and having had two life-threatening bleeding incidences, I feared bleeding to death, no matter what the results revealed.
In fact, I was told I have a more severe form of the disorder. Interestingly, I've also been told that Humate-P shouldn't work effectively on someone with my type of von Willebrand disease, but, thankfully, so far it has.
I can't believe I'm 73 years old. Many nurses and doctors have told me I'm lucky to be alive.
Lucille P. Musick
Harker Heights, TX