Surviving the wait for mitral valve repair

[Ashmd]

I've been reading a ton here for the past few months and thought now is the time to jump in. I'm 39F and scheduled for robotic mitral valve repair on May 18 at the University of Chicago. I was diagnosed with myxomatous mitral valve (Barlow's Valve) by TTE in January. After a TEE and MRI in March showed severe prolapse and regurgitation, I was encouraged to seek surgery in the next 6 months. My left ventricle has started to dilate due to the extra effort my heart has to make to pump and my EF is a bit below normal, so I'm on metropolol and losartan now. Weirdly, I feel more or less fine, occasional palpitations and very minor shortness of breath; definitely nothing that would have sent me to the doctor yet, so I'm thankful for my primary care doc who picked up on the murmur at my regular physical.

It seems I've done my part and now I just have to wait another 33 days or so (but who's counting). Thanks for the wisdom and perspective you all have shared already, it's been very helpful as I wrap my head around this. If anybody's up for giving advice I'd love to know how you managed the waiting and the worries. I mostly worry that my condition is going to deteriorate while I wait and I'll end up with complications or permanent damage to the heart.

 

[Zoltania]

First, don't worry about your condition deteriorating and causing permanent damage. If your symptoms worsen in the next month, your surgery date can be moved up. In my case, I was initially planning to have surgery in a couple of weeks, but I woke up one morning with shortness of breath, went to Emergency, and ended up having my surgery just two days later. I had no complications or permanent damage. So that part should be fine.

The other issue is how to deal with the anxiety of being in "the waiting room." Everyone has a different way of coping. Some people do best by doing a lot of research ahead of time (including scouring the archives of this forum). Others cope better with distraction of various kinds. Working, exercising, spending time with loved ones, doing engaging activities... whatever works for you. If you are prone to anxiety, it can help to read about techniques such as cognitive behavioral therapy or mindfulness meditation.

You have found your way to us and we are here to give you support and answer your questions.

 

[Ashmd]

Thanks for your response! It's comforting to hear that you had no complications or permanent damage despite having to be bumped up. Research is my main coping strategy and I think now that all of the major decisions have been made I've lost that outlet for my anxiety. I downloaded some guided meditations over the weekend and am going to give those a shot.

 

[tom in MO]

Thanks for your response! It's comforting to hear that you had no complications or permanent damage despite having to be bumped up. Research is my main coping strategy and I think now that all of the major decisions have been made I've lost that outlet for my anxiety. I downloaded some guided meditations over the weekend and am going to give those a shot.

I found rote prayer helpful. Personally I say the rosary. I've done guided meditations as well and those help me as well.

 

[Zoltania]

Kaiser provided me with some guided meditations by Belleruth Naparstek to download. Two that I found helpful were on surgery and on healing respectively. PM me if you would like a copy of the MP3 files.