March 29 - Bump in the Road

And not the good, belly kind of bump.

I just got word from my agency that, after nurse's review, I am not a good candidate. Obviously, I was very disappointed and I asked my case worker if she was allowed to tell me why, hoping it was something I could improve on – BMI, diet, exercise – and try again.

I was told I was rejected because of my Von Willebrand's disease. I have the mildest form of the mildest type and I've never had issues with nosebleeds, heavy periods, or other common symptoms. The diagnosis popped up on an unrelated blood screen when I was six and it has had no real affect on my life. My hematologist once told me if I were to lose a limb I might bleed out in 90 seconds instead of the usual 2 minutes, but otherwise I'd never know I have it. Not a cheery picture, but it's pretty good way of putting it into perspective. And seriously, I've lived a completely normal life except for these 2 things: A) I'm not allowed to donate blood (apparently blood banks find value in blood that's able to clot) and B) I got to go to this free summer camp for kids with chronic illnesses.

However, all is not lost because I'm not taking no for an answer, yet.

Here is my (hopefully polite and reasonable) response:

I respect your nurse's expertise, but I disagree with her assessment. I was approved by a hematologist prior to both of my births and was deemed not at risk. It was an option to have been given a preventative dose of clotting agent prior to delivery, but it was found to be unnecessary. Anecdotally, my original hematologist, who made my initial diagnosis, remarked that I could have lived my entire life with no symptoms of my condition, but it just happened to show up on a random blood screen.

Would it be possible to discuss this further with the nurse? If possible, have my OB and/or hematologist provide additional information on this topic?

Is there anything more terrifying that hitting "send" after you've just stood up for yourself? No, there's not.


While I was writing the first half of this post, I got a response from my case worker! She is having my records reassessed by the medical director and, to be on the safe side, she wants me to get a clearance letter from my hematologist. So now I'm working on getting a referral appointment so I can get my letter and get this show* on the road!

*There is no show. I'm not going to show you anything.


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