My husband is a young 78. He recently had a stress test (a nuclear stress test) showing that he had some abnormality. I'm not sure whether it showed an abnormality in the arteries. But a doc has ordered an angiogram. We're not terribly concerned about the angiogram, but the results of it could indicate a stent is needed. A stent concerns us a lot. His docs have recommended that if he needs a stent he is to get plavix ( a blood thinning medication) and not be given DDAVP as it interferes with the plavix. How does this sound? It doesn't sound right to us. He's scheduled tomorrow late. We are thinking maybe too put it off a while.
He has no symptoms -- no pain, no dizziness-- that would indicate a problem in his arteries. And we're not sure why the surgeon recommended this. Of course his age may be a factor. Any input would be helpful.
Also just to add some info: the surgeon who is well qualified and works at a major LA hospital,
did not give him any useful info about the procedure. I also talked with him and he was not helpful to me either.
^^what Munchie said. Are his surgeon and hematologist in consult with each other and agree on the treatment? I don’t know about anyone else but whatever my hematologist recommends over-rides anything any doctor or surgeon tells me. I learned this from experience and not speaking up and being insistent on them consulting with my hematologist. I’m not sure if it is arrogance or laziness on the doctor’s part that they think they know what’s best for treating someone with VWD. Before one surgery I asked the anesthesiologist ( a very experienced one at a major US hospital,by the way) how often he has to administer DDAVP per year. His response was that I was only his second. So most don’t deal with it regularly and every VWD patient responds differently.
I, personally, would be very leary of taking Plavix without my hematologists consent since Plavix is known to CAUSE bleeding. As for putting in the stent, did his hematologist say he needed DDAVP before the procedure? My doctors always need to phone my hematologist for dosage recommendations before surgery. Also, does your husband’s VWD even respond to DDAVP because some people do not? Also, DDAVP only works in your system for a short time which is why it needs to be administered 15-30 minutes before a procedure so why can’t he have it? If he needs Plavix wouldn’t he start taking it in the days after the surgery?
Sorry, I have more questions than answers for you. Bottom line - Make sure the hematologist and surgeon are in sync. I wish your husband well.
Absolutely, I agree with Munchie. Contact your hematologist. I once went in for surgery and informed the doctor I have VWD. He thought he could handle everything himself. He said to go to the lab to have my blood drawn where they would work with it, providing some additives, and give it back to me on the day of surgery. When I went to the lab, I explained I had VWD. They were very obviously concerned and confused. Without my knowing, they called the surgeon and between the two (dr. and lab) decided to give me cryoprecipitates! It was administered, again I repeat, without my knowledge, I had the surgery and subsequently I had a TIA (mini-stroke)! When it was happening I knew I WAS HAVING A STROKE! Don't proceed with any surgery until you discuss with your hematologist. Please.
Absolutely follow Munchie's advice. My experience with surgeons,(and others on this site have had similar experiences), is that they have altogether too much confidence and altogether too little humility. At this point in my life I would not undergo any surgery unless my APTT and VWF ristocetin and Factor VIII numbers were in the reference ranges. I have type III so the risks with type II might be different, but you must have guarantees, in front of witnesses, that the surgeon and the hematologist agree to the chosen procedure and that you have a copy of the procedure in writing. I found out that it's too late after the fact and if I hadn't recorded pictures of the surgery results on my leg, the hospital would have gotten away with egregious malpractice. Forewarned is for-armed and being a vociferous advocate for proper treatment is absolutely necessary in dealing with unusual conditions like VWD. Your medical team probably has limited experience, if any, with VWD unless you are in a major Hemophilia Center. Good luck and remember, medical practitioners do put on pants one leg at a time, just like normal folks so don't be afraid. Most Hospitals have Ombudsman or Patient Advocate staff that will assist you in getting the Doctors attention if you get static from them. Use the advocates at the first sign that the Surgeon and Hematologist are not working together. You and your family deserve it and the Hippocratic oath the doctors swear to says, "First, do no harm."
I've already replied a couple times and don't see it posted. I'll try again. Mainly I want to thank everyone who weighed in.
And we will see a hematologist. Actually we are also going to see a different cardiologist/surgeon who is able to do
both angiograms and stents. The doc we had before only did angiograms.. . We have several questions to ask both of the cardiologist/ surgeon and the hematologist. I am making a list of questions then my husband will add his questions. Hopefully we'll get enough time to ask everything. . . So far we're feeling ok about delaying the procedure to a time after the holidays. First week of January possibly. My husband has an appt. with the hematologist on Jan 2 so hopefully that
won't be too long. Thanks again for all of your input.
I also responded to your question Munchie, but did not see the reply button at the side. Anyway interesting that you live reasonably near us-- as I see this site is worldwide. We live in the San Fernando valley. At this time I am not comfortable mentioning the name of the hospital I referred to. JKR
I am concerned about a similar situation ... I have VWD and my 3 children are vwd.. my mother tested negative.. My father tested but was never told the results... by his primary md.. Anyway,, My grandfather has always been a significant bleeder.. never been tested.. He had a heart issue last week was in the hospital ,, When i heard they were going to put him on coumadin I told my grandmother she should ask them to test him for VWD first just in case.. he has it as well. The cardiologist blew her off like it wasnt a big deal..and never ran the tests. even though she asked.. Seems like a big deal to me..since i have been living with the medical problem for a long time.. I want to know if anyone knows the dangers of warafin treatment are and how to get the doctors to run the blood test .. to see if he has VWD. I seem to be beating my head against the wall with my grandmother was raised to trust your doctor. She doesnt seem to understand how dangerous a blood thinner could be if he already has a bleeding disorder. I dont want to cause her more stress
Indeed, Coumadin and VWD could be a disaster but let me tell you about my incident. I had scheduled surgery and the surgeon, rather than sending me to the hematologist, thought he could handle things. He ended up giving me cryoprecipitates which caused a TIA - a stroke. I was a young, healthy woman in my mid-40's at the times. If you are able to read previous postings that I've done, it explains that I had no information on this, and it was given without my authorization or approval. Needless to say, after the stroke, I was worked up thoroughly by one of the best neurologists in Arizona, and he, in conjunction with my hematologist, decided together that I needed to be on a low dose of Coumadin in order to keep me safe from another stroke. They, and I, were walking a very narrow and high tightrope, but I trusted them explicitly. I've worked in healthcare my entire life and I knew I had the best - I had to trust them. I was kept on the low-dose Coumadin for a number of years and then taken off of it. I was fine during that time. So, although it's a tricky situation, if you have excellent physicians who are working together, it can be done and I'm proof of it. Thank God, everything worked out as they hoped.
Rebecca said:
I am concerned about a similar situation ... I have VWD and my 3 children are vwd.. my mother tested negative.. My father tested but was never told the results... by his primary md.. Anyway,, My grandfather has always been a significant bleeder.. never been tested.. He had a heart issue last week was in the hospital ,, When i heard they were going to put him on coumadin I told my grandmother she should ask them to test him for VWD first just in case.. he has it as well. The cardiologist blew her off like it wasnt a big deal..and never ran the tests. even though she asked.. Seems like a big deal to me..since i have been living with the medical problem for a long time.. I want to know if anyone knows the dangers of warafin treatment are and how to get the doctors to run the blood test .. to see if he has VWD. I seem to be beating my head against the wall with my grandmother was raised to trust your doctor. She doesnt seem to understand how dangerous a blood thinner could be if he already has a bleeding disorder. I dont want to cause her more stress