John, I got a second opinion at Cleveland Clinic and I am scheduled for Mitral valve repair surgery in May. I heard from Randy who had the surgery in December ...Read more
John, I got a second opinion at Cleveland Clinic and I am scheduled for Mitral valve repair surgery in May. I heard from Randy who had the surgery in December and he ranked Cleveland a 12 on a scale of 1 to 10, and he is now playing tennis. My brother had a similar good expereince 7 yrs ago, so you might want to get a 2nd opinion at Cleveland Clinic. They take in folks all over the world, so they can handle folks fom out of town. Hope you get some discernment for the proper next step.
John Peterson Thanks, Ralph. I'm eager to learn from the Cleveland Clinic whether I should have my MV repaired des ... Read more
John Peterson Thanks, Ralph. I'm eager to learn from the Cleveland Clinic whether I should have my MV repaired despite my cardiomyopathy. A valve surgeon out here told me last year that (1) I don't need MV surgery because my severe MR inexplicably improved to slight MR; and (2) even if I needed MV surgery, I could not survive it because my heart is too weak. None of my cardiologists since then has said I should have it, but I just can't help wonder whether even slight MR (if in fact it's now only slight) could be worsening my cardiomyopathy or at least not allowing it to get any better. I appreciate your input and your well wishes.
Rob Wigley (again) posted a note for John that says:
John,
Re-read your story and journal entry, because I probably guestbooked you too quickly. You have a LOT more going on that most here, and it seems from the ...Read more
John,
Re-read your story and journal entry, because I probably guestbooked you too quickly. You have a LOT more going on that most here, and it seems from the myopathy that things look more dire than they do for most. Your "what if" is pretty sad and honest. Is your feeling that the ball was dropped between the death of your old cardiologist and your finding a new one? You have some big decisions to make, I hope you have someone helping you to do this. My hope is that you'll find some information and doctors that can help you make a good decision, and then that the skill of your caregivers and the luck that you deserve will lead to a better future.....easy for me to say, I know.....
Thank you for both your entries. I'm still trying to figure everything out. I really believe that I should have been referred for valve surgery in 2010 or 2011 and that if I had been I would be writing about my repaired mitral valve rather than my cardiomyopathy. Since both cardiologists were in the same group, you'd think that dropping the ball would be difficult to do...but I'll admit that the thought has crossed my mind. I don't know if I have a valid claim. I do know I need help. I need to know that I'm doing everything possible to get well. The thought of not being there to see my kids go to college, get married, etc. saddens me beyond words. So I'm going to get a second opinion consult from the Cleveland Clinic, then decide whether to actually travel to Ohio. Maybe having my mitral valve repaired now, as long as my heart is strong enough to survive the surgery, would help my cardiomyopathy. I don't know. Again, I'm grateful that you took the time to reach out to me.
Hey John,
Cleveland Clinic has a great reputation. Several folks in my rehab group here in Colorado travelled there for their valve surgery. Cleveland and Mayo ...Read more
Hey John,
Cleveland Clinic has a great reputation. Several folks in my rehab group here in Colorado travelled there for their valve surgery. Cleveland and Mayo are about the two best known centers. I had mine done in Dallas, but only because we moved here from there 3 years ago and all my docs are still there, and I don't want to give them up. Scary stuff, isn't it? Lots of folks on this site have really good outcomes, and some have issues after surgery. One thing we all need to remember, and you'll be there after surgery, is that (sorry for all caps here) WE JUST HAD OPEN HEART SURGERY!! It's amazing that we do so well, and that at this point most of what we've had is routine. There's an expectation that everything will just go perfectly, and a lot of times it does, but sometimes it doesn't. I had 3 issues post-surgery that set me back, but all were manageable and have been "fixed". It takes time to recover, in my case they say a year or so before my heart returns to how it was 10 years ago. I hope you get some good second opinions, and I'd tell you to remember that this is YOUR life, so take charge. I didn't notice if you are married or not, but my wife was very helpful in asking questions of docs, taking notes, and telling me later what SHE heard versus what I heard. Best wishes to you, it's scary stuff.......but I'm very happy I got mine done at the tender age of 56.
I am from: Stevenson Ranch, California
