anyone deal with mitral valve issues (leaking/reflux)

[wallymann]

curious of folks experience dealing with this -- treatment, longer term stuff, cycling/fitness impacts, etc.

asking for a friend... ;-)

[oldpotatoe]

curious of folks experience dealing with this -- treatment, longer term stuff, cycling/fitness impacts, etc.

asking for a friend... ;-)

Ask 'Gasman', he's a anesthesiologist MD..he has helped me a lot going thru afib, ablation and cardioversion...better now, BTW..been a long month but give gasman a shot, he's a mod also.

[fmradio516]

My mom had a really badly leaking mitral valve and a fellow forum member recommended Dr David Adams at Mt Sinai in NY. He said he was the Richard Sachs of Mitral valve replacements.

Something happened, and she couldnt go in for the open heart surgery, so Dr Adams recommended Dr Tang, also at Mt Sinai to do a Mitral valve repair which is minimally invasive. They basically put these new things called Mitraclips around the leak. My moms was so bad that she needed two of these clips; which Dr Tang was incredibly psyched that was he was able to do. I guess its never been done before, at least by him.

She's had a really weak heart this entire time. Docs say that its the equivalent of a 95 year old person. Shes turning 60 this year. Shes been feeling really weak lately so she just went back to Tang to get checked out and the clips are still in place and holding up, so her heart is just failing and now she is needing to get a whole transplant. :(

If it were me in detroit, id 100% go to the Cleveland Clinic. #1 for heart surgery in the country, i believe.

Good luck and let me know if you have any question. Im not an expert at all, but just have some insight with what my mom is going through.

[dziehr]

curious of folks experience dealing with this -- treatment, longer term stuff, cycling/fitness impacts, etc.

asking for a friend... ;-)

In brief, there's an enormous amount of information to take into account, such that, at random, one person's experience very likely will not approximate another's (etiology of MR, systolic function, functional capacity, surgical risk, selection of valve, anticoagulation, etc.). As with most nuanced decisions, it's best to be evaluated at a reputable medical center with an experienced/multidisciplinary structural heart team (often cardiology and CV surgery).

--a pulmonary/ICU MD

[wallymann]

If it were me in detroit, id 100% go to the Cleveland Clinic. #1 for heart surgery in the country, i believe.

Good luck and let me know if you have any question. Im not an expert at all, but just have some insight with what my mom is going through.

thank you...my friend finds this very useful!

In brief, there's an enormous amount of information to take into account, such that, at random, one person's experience very likely will not approximate another's (etiology of MR, systolic function, functional capacity, surgical risk, selection of valve, anticoagulation, etc.). As with most nuanced decisions, it's best to be evaluated at a reputable medical center with an experienced/multidisciplinary structural heart team (often cardiology and CV surgery).

--a pulmonary/ICU MD

understood. my friend is interested in real experiences and outcomes, just to learn not to diagnose.

[jwin]

My dad had this repair done at Cleveland Clinic. My mom said it was the best nurse staff she had ever experienced. He was home in less than a week and pretty much fully recovered in a month.

He had the connective tissue on the valve repaired with carbon fiber I think? But unfortunately his leakage has gotten worse from when it was first done 3-4 years ago...I think this is always a possibility.

My takeaway from seeing my dad (a meticulous person) is to go get as many evaluations as possible. Fly / drive to places to get evaluated in as much as possible during this time. See doctors in person. Do your research and you will have a better outcome.

[gasman]

thank you...my friend finds this very useful!



understood. my friend is interested in real experiences and outcomes, just to learn not to diagnose.

Everyone is different. Some have minimal symptoms for years after their intervention and some have a terrible time even after their repair.
You can't really take any one person's experience and generalize it as there are too many variables. Age, co-morbidities, valve pathology, length of illness, cause of illness, etc, etc..

Your friend needs to see a good cardiologist. The Cleveland Clinic is certainly a good place to start.

[robt57]

I didn't know any of your friends had hearts, news to me. ;)

[wallymann]

He had the connective tissue on the valve repaired with carbon fiber I think?

I believe gore-tex is what they use. thx for sharing, sorry to hear about your father's struggles. :-/