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Told Today I Need Heart Surgery


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My cardiologist told me today he was sending me to a cardiac surgeon in Boston. I very likely will need my mitral valve repaired within the next few months I knew this was a possibility because I have a Mitral Valve Prolapse with moderate regurgitation, but I figured we had years to monitor it before I'd need surgery to repair it.

I'm kind of numb and haven't hit that "OMG HEART SURGERY" panic yet...but its still big, scary news. My cardiologist even said that I might experience some relief from POTS once the valve is repaired. He also said we kind of need to put my POTS on the back burner. I'm having autonomic testing in two weeks in Boston but it's hard to know I can't really try anything else to help my POTS until my heart stuff is resolved because beta blockers are really the only medical treatment that someone can be on with a leaky valve and i can't tolerate them. Florinef and Midodrine are a big no-no apparently.

I'm also nervous about the anesthetic because I know POTS patients need to be closely monitored and I'm extremely sensitive to all meds/drugs. I just want to make sure the surgeon understand about dysautonomia before surgery. Part of me wants to get it over with, the other part of me is scared because every surgery is a risk. And all of me is going "why is all this crap happening all at once?" ...I'm hoping that I can get all this scary/crippling medical stuff out of the way at once so I can have some good health karma coming my way after that for a long time.

:mellow: yikes, it's been a hard day

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So sorry to hear this. Is there any chance this will make your POTS go away? Maybe there is a bright side to all of this. I know surgery is scary/risky, but there might be a silver lining. I also agree *** MomtoGiuliana to just take it one day at a time. You never know what the specialist will say. If you have doubts, you can also get a second opinion to confirm the surgery is necessary. Good luck!

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Don't know if you or you anesthesiologist can get ahold of this medical text (I bought on Kindle) but

Chapter 140 of "Primer on the Autonomic Nervous System",

"Anesthetic Management in Autonomic Disorders" deals with specific concerns for pts like us in surgical settings. It Points out that the number one goal in surgery is to maintain optimum cardiac homeostasis and says we are at higher risk for hypotension during recovery. I'd consider finding out who your anesthesiologist will be and discussing his experience in working

On pts w your condition. This book and/ or consulting preoperatively w an ANS doc at one of the major med centers like CC or Mayo may be of help.

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Good luck! Like Kellysavedbygrace said, you might see if you can meet with the anesthesiologist ahead of time - it can't hurt to ask. They're the doc that will be managing the dangerous part (especially for POTSies), so to speak, since they will be monitoring your blood pressure, breathing, heart rate, etc. You might at least be able to give them POTS 101, print out some materials to give them, etc. Worth a shot!

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You also might look into less invasive procedures for replacing valves. There is a new machine that allows a valve to be replaced without opening the chest. It is like having an arteriogram where a catheter is threaded up through the groin and the valve is replaced in a minimally invasive way. I don't know a lot about it but, I know that the first patient at my hospital to receive a valve this way was in her 90's and she went home after 3 days and is working in her garden again just a few weeks post the procedure! Pretty amazing!

I agree with the anesthesia advice - there are certain ways and methods for induction of anesthesia on patients with dysautonomia - most anesthesiologists are not aware of the techniques - I insisted the last time I had surgery that my anesthesiologist look up the information. You also need to let the staff know about your condition on the floor in which you recover. After my last arteriogram, the staff thought I was dying just because I had prolonged low blood pressure - once they understood all I needed was extra IV fluid, I began to get better.

Good luck - let us know how it all goes - we'll all be thinking of you!

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I know this doesn't help, but my mother had her valve replaced fifteen years ago with a mechanical st jude mitral valve. She said if she knew how good she would feel after she would've done it a long time ago. Not to say it wasn't terrifying and a painful recovery, but she does aerobics and hikes now and seems unstoppable in her 70s. She has to take warfarin, a blood thinner, now for life.

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E Soskis-- I am seeing a surgeon who is a pioneer in minimally invasive mitral valve repair and replacement so I'm told i should expect some stitches, not a cracked chest thank goodness.

AllAboutPeace-- I'm told that I was born with the the MVP but my POTS symptoms have gotten much worse in the past few months and my cardiologist told me back in Jan that I was a-okay to keep going without repair surgery, but now is telling me things are concerning enough that he wants it taken care of. He said I might have some relief from POTS symptoms once the valve is fixed. So some correlation? he thinks perhaps.

Anaphalaxing-- it totally does help I need all the reassurance i can get that this will be a helpful procedure and that people can bounce back from it.

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