Results from CC Testing

[Heiferly]

Hey all,

I saw my cardiologist today and we hadn't heard back from Cleveland Clinic yet so he called up there and actually caught my doctor from up there on the phone and got my results while I was there in the office.  So I don't have the full report to read or anything, but I have the gist of everything.  I thought I would fill you guys in for those who had asked to be updated when I found out.

Despite still being on Midodrine and Fludrocortisone during the testing (they'd taken me off some other meds, but not those), I apparently had *severe* blood pooling that was apparent during the hemodynamic testing.  I'm already on the max dose of Midodrine, so they're going to try upping my Fludrocortisone again (ugh, here comes the weight gain, I can see it already).  My blood volume was actually okay, but they want it 10% above normal because of the pooling.  Grrrreat.  Water retention will be my middle name.  Also, I've been scolded that I *must* wear my compression hose every day (ugh).  And I'm being put in cardiac rehab (PT) three times a week.  ME?  On a treadmill?  Three times a week?  Surely you jest!  I wouldn't have done that BEFORE I got sick!  I'm NOT the treadmill type, LOL.

The valsalva, HR variability, and all those were fine.  The QSART was apparently "slightly" off, but not enough to warrant a biopsy "at this time."

So yeah, apparently the crux of my dysautonomia is wickedly bad blood pooling.  Oh, and he suggested some different med options but we're going to try increasing Fludrocortisone and cardiac rehab first.  

[binder58]

I was very disappointed with our visit/treatment at CC, over two weeks went by and still no one told us results....had to call administrator of hosp, and the ombudsman....then we got calls.  They said for husband to wear compression stockings...these must be fitted ones...and to have salt intake of a certain amount, and gave him atenolol...beta blocker....and that his autonomic nervous system worked if he was lying down, but not when he was standing up.....i asked if he had dysautonomia then....never got a straight answer.  We had Dr. Fioud, she was hard to understand.  And as whole the CC, is NOT what we expected....for the class that they are put in.  We have been doctoring there for over a year, and husband is not any better, in fact worse, and they are doing NOTHING!!!  The reason why we switched to there, was thinking they had such a great reputation!  Does anyone get REAL HOT...I mean your clothes get soaking wet with sweat, then start freezing,,,,teeth chattering???  When he gets that real hot feeling, that is when he feels like he is going to go out.  T

[tricia214]

wishing you all the best

[halbashes]

Good luck with the Cardiac Rehab!  Please let us know how that works out for you!

Based on your doctors recommendation for you to wear your compression hose every single day, I think I will try to wear mine more often as well.  I had been trying to, but I guess I will start putting even more an effort into it.  Thank you so much for sharing this information with us!

Additionally, I wanted to let you know that Mestinon, (Pyridostigmine), has made a significant difference in the severity of my blood pooling.  I take it as 30mg four times daily.  The tablets come as 60mg, so I break them in a half, and take a half tablet every three to four hours.  I'm not sure if that would be an option for you, but it may be something to consider.

Thank you again for the update!

[Weney3777]

I am so glad you finally got some answers. Being able to go to the Cleveland Clinic is a huge bonus for you on that side of the country. I'm glad for you that most of your tests came out fine. I'm not even sure what a QSART is, but i'm thrilled you don't need a biopsy. Hemodynamic testing is probably too much to ask for Nevada, but maybe I'll try compression stockings anyway, just in case, for my legs always ache terribly. Once again, it's awesome you got some results! Good luck with your Cardiac Rehabilitation. Just think, the treadmill will counteract the weight gain! :-)

[AireScottie]

Glad you got some results!  Definitely put on the compression stockings :(  I have really severe pooling too.  Let me know how the Cardiac Rehab goes.  I couldn't get my insurance to cover it, which was very disappointing.