I need to know if anyone has heard about warafin Coumadin treatment .. and if it is potentially dangerous for VWD patients.. ?? It makes sense logically in my mind that would it would be dangerous but when it was mentioned to the cardiologist they just blew it off like it was insignificant that the patient had VWD,

I would call the hematologist. I would think blood thinners would be a no no in VWD patients. Then again most doctors are clueless about VWD.

What I learned I need to do before any doctor prescribes a treatment or schedules a surgery is first consult my hematologist. Most other doctors, although they may be familiar with VWD, are not experienced in treating patients with it. Now I phone the nurse at my hematologists office and tell her what the doctor is wanting to do and ask her to ask the doctor if there would be any problems with my VWD. They are good to respond. Sometimes the hematologist will want me to come in for an appointment before any new treatments just to make sure there are no changes in my bloodwork. Bottom line is what the hematologist says over-rides any other doctor! Maybe you could suggest to your grandmother that he see a hematologist first? He may need a FULL blood panel done for bleeding disorders. If his blood tests were ordered by another type of doctor, they usually only run platelet counts and RBC levels and not the full tests for blood factors. A hematologist will also run tests to see if he is a good candidate for DDAVP treatment if he ever needs it for significant bleeding events. It’s good you are asking questions and I hope you get answers.

I was on Coumadin for a number of years after having a stroke caused by a surgeon giving me cryoprecipitates. My hematologist and neurologist had to work very closely together in order to come up with the proper, low-dose of Coumadin in order to keep me safe from having another stroke, but also not to cause a bleeding issue. The cryoprecipitates caused a hypercoagulative situation. I NEVER should have been given it. It was given to me without my knowledge or authorization. So, Coumadin can be used safely and effectively with a VW patient but the doctors need to be extremely skilled in their dosage and follow ups.

Also, a cardiologist should be well versed about VW. Possibly you should get a 2nd opinion.

I agree but hte patient is my grandfather and he is old school stubborn and i cant get him to see someone about it.. So he keeps taking his coundian i complained to the hospital but they didnt do anything.. really i hoped hey passed it back to the cardiologist,=... I discussed w my hematologist but his dr has to ask her for a consult.. so I am just praying .. that he will be ok .. and waiting for the worse to happen.. very frustrating.