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Von Willebrand Disease (VWD) - Online Support Group

I am a clinical therapist working on improving how people can live a better quality of life with vWD

My code name is Doctor G. But I prefer Shannon. I am offering support and help to those having a difficult time coping with the stress of vWD. I am not trying to sell any service, just offer friendship to those who need it. I can honestly say I am a part of the vWD family and have a little extra training to help when others may not understand.

Wonderful, thanks so much for joining us!

Hi! Shannon!
I am writing this from bed 412 in the Hospital. I am being released today after a long bout of GI bleeding and ineffectual Alphanate treatments. From my Hgb number on a graph we could see the effect of inhibitors. A mixing test was botched by the lab , they measured PT not PTT and my problem is Factor VIII, not Factor IX.

I infer from my experience here, that not many Hematologists look at inhibitors to VWF and Factor VIII, and would rather stick to factor dosing rather than attacking inhibitor formation.

Do you know of any decision trees available to the professional that would help the layman know what the choices are for treatment and how to interpret some of the numbers relative to the decision tree?? Risk analysis is what I find most daunting. If you develop inhibitors slowly your test data changes slowly, but with inhibitors, change can happen quickly.

We wasted a lot of money on Alphanate before other area Hematologists took a look and we tried IGIV. My GI people do not want to see me again because my “mucosa in the small bowel are too friable”!. So you can see where the stress comes out. Insufficient info for an informed decision.
Thanks,
John the elder PTT dropped to 31 with 3 doses of IVIG. Hurray!!! Going home!
Love you all!

Hi John,

I'm not sure if Shannon is still active here, but wanted to comment. What an ordeal with the blood work! Glad you finally caught the discrepancy, and were able to go home! That is always an achievement!

I hope that your health continues to improve and you can stay 'hospital free'!

Wishing you well,

SK