I am a type III vWD, special category- acquired not hereditary, apparently my immune system attacks VWF with inhibitors and I lose all my VWF and factor VIII. Unfortunately my immune system has been very active the last three or so years so I have spent a lot of time with ER departments, Hospitals and Hematologist. When first diagnosed at age 70, I was very curious and spent a lot of quality time with Dr. Google researching NIH, Mayo Clinic, Cleveland Institute and Hemophilia websites. I carry a review article of current knowledge about types of vWD and current best treatment protocols. I spend a lot of time teaching Nurses, CNAs, PAs and Hospital docs about my condition.
I argue with Hematologists about some of their advice and suggest alternatives, like PRBCs have lots of anti-coagulants to preserve them and "apherized blood" only has a little anti-coagulant added. I won that battle when I needed blood but I had to argue for it. I have found a good Hospital that cooperates with me now, after three years of discussions. They even keep Alphanate factor in-house in the Pharmacy, just for me. No other Hospitals within a few hundred miles do that and I am in Central Florida in a little rural town in a rural county. The Infusion staff all know me and the phlebotamists allow me to point out the good spots.
I also have had terrible experiences with Doctors and only by trial and error, sometimes at great personal suffering, I have found the best in the area for this disease.
How have you found good Doctors and Hospitals?