Mitral Valve Repair?

I just turned 36 years old...had a cardiac arrest 3 years ago...had a ICD/pacemaker implanted because I have Arrhythmogenic Mitral Valve Prolapse. I haven't had any shocks from my ICD and I am on 5mg bisoprolol twice a day to control my arrhythmias. Things seemed to be going well...

Fast forward to yesterday - I had my annual appointment with my cardiologist, and even though my mitral valve regurgitation is "mild to moderate", my cardiologist walks into the room and casually says "I think it's time to repair your valve! (And do a small ablation at the same time)." I've been told my whole life that I miiiiiiight need to repair my valve in my 60s, so I'm a little surprised and very anxious. I asked him why and one of his reasons was that an excellent surgeon in Toronto (who repairs valves) is retiring soon plus he thinks it's good to repair it now when things are OK. He said it could then be good for the next 60 years. But what if my regurgitation stays mild to moderate the rest of my life and I didn't need to repair it? How about if I die getting it repaired? Or if it makes things worse? Should I wait a bit longer and see how my regurgitation progresses?

One of my concerns is that I'm pregnant with my second child (due in the summer). My cardiologist was saying I could stop breastfeeding around 6 months so I can get the valve fixed (even though I would love to breastfeed for a year or so). It's an added stress that I don't need right now, of all times! I know it's worst case scenario but the idea of dying and possibly leaving my 2 kids and husband behind is stressing me out immensely (especially since I already survived a cardiac arrest relatively recently, which is a big deal)!

That's the end of my rant and any ideas/thoughts/similar experiences are very much welcome!! :) Thank you all!

8 Comments

You need more time

by Gemita - 2022-03-11 09:36:32

I can understand your dilemma Lildanishgirl.   But my immediate thought is that you don’t have to make an immediate decision or feel you need to agree to anything until you and your family are ready and the time is right.  My first priority would be to my family and my own well being.  And it sounds as though you do not need to rush into anything..  My feeling is if something isn’t broken, or at least in need of immediate repair, why fix it, unless your cardiologist is seeing more than he is willing to say?  I would go back and really question him as to what exactly has been seen to make a repair so immediately pressing when you have so much going on in your life just now.  

I have leaky valves, some moderately leaky and my cardiologist is not at all concerned and certainly wouldn’t recommend repair until and unless my symptoms suggested otherwise.  Of course you are younger, but any procedure carries some risk as you quite rightly say.

I wish you well but don’t be afraid to say no, or to say that you wish to have more time to come to a decision, even perhaps to seek a second opinion?

Thank you, Gemita!

by lildanishgirl - 2022-03-11 11:21:05

@Gemita - I can't express how appreciative I am of your thoughtful response - Thank you!!! I REALLY needed this after a whole day and night of dwelling on this whole thing. I wholeheartedly agree with what you said, and after chatting with my husband, I think we've come to the same conclusions as you. My cardiologist is requesting a consultation appointment with the surgeon, so that might be a good start...I can bring all my questions to him, and perhaps get a second opinion with another cardiologist too, before making a decision. Since this doesn't seem to be "urgent" and like you said "if it ain't broke, then why fix it?"...I seem to have time and I think I shouldn't worry right now until I get more information. Thanks again!

Get more info!

by Julros - 2022-03-11 13:03:09

Yes, I would go through the consultation, and find out all your options. Is there a minimally invasive approach? How long is your recovery time? After all, you will have a 6 month old to care for, and what sort of activity/lifting restrictions will you have? Is there a possiblitity to "pump and dump" breast milk during your recovery? And really, what would you have to gain having surgery at this point? If this surgeon is so great, surely he has proteges who have trained with him. 

Thank you, Julros!

by lildanishgirl - 2022-03-11 13:19:10

@Julros - Thank you very much for your thoughts! I really appreciate it! I wonder the same thing - what would I gain having the surgery at this point? I've had MVP for a long time now, and it sounds like the regurgitation worsens slowly over time (if at all). Symptom-wise, I'm having palpitations and arrythmias, but nothing that has been bad enough to set my ICD off. I feel like that means I'm doing okay for now. And you're SO right - even if this "amazing" surgeon retires, I'm sure I can find others, when the time comes that I want/need something like a valve repair. When I chat with the surgeon, I'm definitely going to ask about minimally invasive approaches. Maybe it's not as bad as I think too...? Thanks again!!!

Time for a 2nd opinion

by Gotrhythm - 2022-03-11 16:01:44

If ever there was a time to get a second opinion, it's now. You have a lot of questions, good questions that need to be answered, and the well-being of several family members that must be factored into a decision about what's best.

The doctor you've been talking to should be asked, but you should also seek the expertise of some others. It's nice to know there's a skilled surgeon available now, but I don't doubt that there are others, equally gifted who can be ready when you are.

I'll pass along a piece of advice given me by a medical doctor friend. When you go for a second opinion, go outside the practice, and ideally, outside the town. Even in a large city, the medical community is numerically a much smaller number, and they all need to get along with each other. It's easier to be objective about the opnions of someone you dont have social or professional ties to. 

For something as big as mitral valve surgery, a teaching hospital might be a good place to look for a second opinion about what, if anything, needs to be done now. Yes, even if you have to travel, it will be worth it.

Thanks, GotRhythm!

by lildanishgirl - 2022-03-11 17:04:04

@GotRhythm - I agree with the idea to go for a second opinion. Good advice to go somewhere else. It might be a little tricky when I'm already being treated at a teaching hospital in Toronto, Canada that's apparently number 4 in the world and number 1 in Canada! Hahaha :) I'll look into my options though, for sure! I thought mitral valve surgery wasn't a big deal but the more I read about it, the more I realize that it is a big deal. I really want to live a long life, so I hope everything works out one way or another :) Thanks again!

Been there, done that

by sgmfish - 2022-03-11 22:04:57

I had a mitral valve repair over 20 years ago (at age 55). At first, it was just a murmur as so many get (especially men). But for some folks, me in this case (you?), it got worse and worse; and after 2 years, they told me I would not live 2 more years without the repair. The operation isn't simple or without risks, but I've been living happily ever since. If you have questions about my experience, just ask.

Second Opinion

by MinimeJer05 - 2022-03-14 09:59:04

Hello,

I second the thought of needing a second opinion! Never rush into things without having all of your questions answered. It sounds like things are still going OK for you, so I would definitely push back and get the clarification of why they want to suddenly jump on it (outside of the good surgeon retiring).

I had my aortic valve replaced with a mechanical one and while the surgery went fine and the recovery wasn't too bad -- I often wonder what happened.

For years, they told me "some day" you'll need it done. And then one yearly checkup I mentioned that I had a few times over the past month (maybe less than 5) where I was feeling a little light-headed and dizzy and they immediately said "now is the time to replace it, we have an opening in 4 weeks".

I was really shocked as up until this point, I felt absolutely fine and these moments came and went (I never passed out or anything). I didn't know what I know now and just blindly said "okay, let's do it" and that was that.

I've been living fine for over 2 years, but now with the PM implant and other issues, I often look back on my valve replacement and ask "did it NEED to be done?". I try not to think about it much, because it's done and I can't change it, but looking back, I might have asked more questions and got more clarifying answers on why NOW.

Take care

Jer

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