My Vanderbilt Medical Center Research Trip! (5 Days!) - For Pots

[corina]

I've been told that blood volume testing is really expensive. Does any of you know? My cardio told me that I most likely have low blood volume (he found low pressure in my left heart chamber which he said pointed out to that). I never had the official testing but would very much want to.

[Andrie]

Do you stay on your medications for the study, or do you have to go off of them?

[dkd]

Thanks so much for posting your experience. I have thought about going to Vandy, but never thought I was 'bad enough'. My issues seem fairly mild when I read some of the problems that other forum members have.

Thanks again!!

[lulusoccer]

Andrie - yes you do have to go off of all your medications prior to going. (At least ones that are related to POTs, or could effect HR/BP)

Corina - I'm not sure how much the test would cost through insurance. If you go in for research and that test is part of a current study you do not pay for it.

DKD - You don't have to have a "bad enough" case to go to Vanderbilt! As long as you meet the criteria for POTs you could qualify. They have a worksheet they will want you to fill out and they will review your medical records. For example, I am able to work full time and work out. I also drove myself which is a 5.5 hr drive! I definitely still have POTs...for example on my posture study my BP went down to 67/49 and my HR was 163 (part of hypovolemia). On another day my HR only went up to like 114-124 max and my BP was steady..it just varies. The other 2 POTs patients that I met on the unit were also able to work and very functional. So, if it's something you are considering it couldn't hurt to send in the application =)!