Hi Gang!
0224 on 11/25/2012, still GI bleeding (on and off for six months) I had "alphanate 950" infusion, ie. Factor 8 and vWF platelet concentrate. Luckily no allergic reactions and no residual egg albumen from donors of platelets in my alphanate. Prior to infusion, vWF, GP-VIII and ristocetin cofactor were all near zero. Felt like Tsar Nicholas' son. GI bleed stopped for one day then resumed. Nine days ago, Hgb was 10.2 g/dL, nine days ago it was 10 g/dL. Today, melena still tarry, black, BP dropping, tried to get Hgb and Hct test but had to go to ER. I have appointment with Moffitt Cancer center on Tuesday, to check for possible lymphoma-like cancer causing anti-bodies to vWF and Factor VIII, My VWD now looks like after-effect auto-immune problem-(Not aids but result is similar as the body eats its own clotting factors). GI bleeds now attributed to low vWF and Factor VIII. Ordinary people have enough to control minor bleeding in GI tract. My arterio-venosal malformations bleed forever.
Wrote Center for Disease Control in Atlanta, and got very good response from "Zoonotic disease department" (they do tick and flea diseases like the plague, Lyme disease and Rocky Mountain Spotted Fever). Some tick and flea born pathogens can give rise to vWF antibody formation and to lymphomas likely to destroy platelets. Google Ehrlichiosis and Babesiosis for more info.
Still in ER, awaiting CBC or H and H test to see if I will last til Tuesday without needing packed RBC. That transfusion will ruin validity of Tuesday tests as it won't be my blood.
A note to other GI bleeders..... for about fifty bucks I got fifty Hemoccult test folders and developer solution. I got Helena Labs model, but they look and operate just like the Beckman coulter test kits. The developer is 6% hydrogen peroxide the interpretation is simple. having my own test really gives peace of mind when things get dark.(that is a very bad pun)
Good health to all- plant more flowers and say please and thank you often!
john the ever elder