Sticky Blood-Hughes Syndrome Support
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Anybody else dealing with mitral valve prolapse?

I really got sand bagged on this one. I have had an a fib all my life. Also a fast heart rate presumably because Mom was determined that I not catch TB from her so I was doused in antibiodics for years.

So when my GP suggested I go for an echocardiogram to establish a base line, I said "Sure. Makes sense.". That was last year and the test showed a very, very mild MVP. I expected this year's follow up to say the same thing as I have not noted any changes in heart rate or number or severity of a fibs since last year.

But the test showed otherwise. My atrial pressure has doubled and the amount of regurgitation has gone from minimal to high moderate.

So I'm off in a few weeks to get an endoscopic ultrasound.( though first I must stop by the allergist to make sure I'm not allergic to the sedatives they want to use.)

Joy. I didn't see this one coming.

Anybody out there have advice?

Gina, who keeps thinking she has beaten the APS into a corner, where the beast will remain chained up and away from inventing new mischief.

2 Replies

I'm so sorry, Gina. I fell for the same trap. Thought I finally had symptom control, go for what I thought would be cataract surgery and find a new diagnosis of glaucoma. I have to say, you could have knocked me over with a feather. I did not expect anything new. I thought all of it, every diagnosis, would stay relatively controllable. I used to have a recurring nightmare as a child that I would be blind at some point in my life. On top of that, my back went out as in FLAT ON MY BACK. L5-S1 going for x-rays this am. The pain is excruciating. It's been 3 weeks unrelenting, using all my tricks to no avail.

Well, I really don't know what it all means right now and I have more doctor appointments than I can keep track of. I'm starting to just not give a flying leap about what is said, what is done, who thinks what. I'm really sick and tired of every bit of it. Of the confinement, the ignorance, the questions, the lack of answers, the gobs of pills, the varying opinions the pain emotionally and physically, the f@#%!ing exercises, the hope and lack thereof. I'm going off for a while to get my thoughts together. The anger in me is overpowering the logic, which of course, gets one nowhere.

I hope your diagnosis does not wreck your wonderful river vacation. I was planning on living precariously through you!

Warm wishes,



I am so sorry to hear of your new developments. Bummer.

If you are looking for some good tube time I can recommend BBC Americas recent miniseries" The Spies of Warsaw." That might buy you a few hours of distraction.

And I wish I could suggest a constructive steam- release outlet for the rage. I understand. It's all so unfair.

I hope my GRT bike trip does proceed as scheduled, but of course, at present I do not know,

I do not have any new symptoms! No panic attacks, no othostatic hypotension, no swelling or breathlessness. I do, as has been true for the past 5 years or so, experience the majority of a fibs right as I nod off and wake up. Over the past year I have seen an increase in pm leg cramps which I attribute to a failure to eat enough bananas. I will now eat a banana every day as if it were a prescribed med.

But with no symptoms I find it hard to anticipate needing a change in vacation plans. Am I in denial?

I pray the back evens out and the eye pressure drops. Keep me informed and/or vent away!



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