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Drs Who Don't Listen/von Willebrande's


imapumpkin
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Hi, I really need to vent. There are two things on my mind.

1) does anyone else here have von Willebrande's disease? I have type 1, the mildest kind and it really gives me no trouble other than the occasional little cut that bleeds for an hour. I have had to take DDAVP when I had my wisdom teeth out, but mainly I don't see it as a problem. It occurs to me that having vWD might make my POTS even worse given that POTS gives us the low blood volume and vWD makes the blood even thinner so the volume probably gets even lower. Anyone else notice a connection like that? Anyways, as I said, I find my vWD to be not a big deal, I usually forget to mention it to doctors because its so mild and frankly, I have bigger problem that occupy my brain during medical visits. However, as I have shared before on this forum, I need to have heart valve surgery in a few weeks, which brings me to

2) The hospital where I will be having the operation tells me they need medical documentation of the labs that diagnosed my vWB and that they can't "just take my word for it". I'm sorry...what? I was clinically diagnosed with this by my pediatrician at age 16...I'm 25 now. It's in my medical records. They need me to meet with a hematologist and told me they might need to do a test run of of DDAVP to see if I tolerate it. I told them about having the test run AND an having the infusion of DDAVP before I had my wisdom teeth out at 19 but they still said they can't just take my word for it and are insisting on medical documentation that I've had DDAVP before and tolerate it. I think I would remember DDAVP. Had it twice. Do they really think I go around making up blood clotting disorders and pretending I have them? I don't have Munchaussens, I get no pleasure from seeking attention medical or otherwise. DDAVP is not pleasant, in fact it makes my whole body cramp like a motherfather, why would I be making this up? I understand they want to cover all their bases and make sure my blood is properly evaluated before having surgery, but the fact that they're acting like they actually don't believe I have this disease seems totally absurd to me. I also told them I have POTS but they didn't insist I send them the results of my TTT to prove it. I feel like this happens all the time, esp to POTS patients. Doctors don't think we have any medical knowledge whatsoever. They also don't trust that we know our own bodies. It's just so frustrating to feel like what you are telling medical professionals into whose hands you are entrusting your care and health is falling on deaf ears.

Sorry, just had to get that out there. Has anyone else had a doctor tell them they don't believe you have something that you've been clinically diagnosed with? I'm sure POTS is a big one...

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Because this has to do with the heart, I think they are trying to play it safe. My son had a procedure back in August and the doctor was told that he had POTS. His heart rate drop down to 25 during the procedure. Kinda of scary. If you feel confident staying with your team of doctors, I might get the information for them but if you think they are blowing you off, that's a different story. They should be concerned by the information you have given them and request the records themselves. Otherwise, I might find another team of doctors that would be concerned with my current health conditions and how these might affect the outcome of your procedure. When you lack trust and confidence in a doctor, it's time to find someone else.

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I find that funny that when it comes to asking these dr's for tests we think we need to help out POTs and other undiagnosed conditions, its such a battle to get them to do anything from a simple blood test. Yet you can insist you already have something and DONT need a test, yet all they want to do is spend money and time on ones that you dont in theory need!!!

:angry: :angry:

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I think I agree with looneymom. Because you are having surgery where the threat of bleeding is significant and the DDVAP is a pretty significant treatment in and of itself, I feel like it is medically and legally responsible of this medical team to either evaluate the past records or retest. I know getting the records might be a pain but there are some things that our doctors shouldn't take our word for and should verify themselves.

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