Mitral Valve Prolapse- Please talk me down

[ivinsfan]

Well I can't say that isn't what I expected him to say..on the EF measure , isn't that an objective measure? If not what objective measures do they actually use?



In a nutshell he said keep doing what you are doing unless something gets worse. Anyway at least you informed yourself a little which is never a bad thing.


I know you will monitor yourself closely and if anything new develops you will get directly to the cardio doc. Looking back at DH experience I would say the biggest thing I wish for a do over with was not paying more attention to his EF numbers. It seemed once they started to drop they dropped rather quickly. The docs always brushed them off until they didn't.



Carry on and try not to let this get you down.

 

[youbet]

He never underwent anything major besides a stent. My point is at 75 yo, not everyone has atrophy. His 75 yo best friend who is visiting us in Palm Desert CA this week certainly has atrophy. He looks and hobbles like an 85+ yo, description from my husband to me in private. He never led a healthy lifestyle and certainly had been more sedentary. He had 2 major heart attacks in the past 4 years and underwent heart surgery with quadruple bypass. He played 2 rounds of golf with us and it was tough on him.

I believe that the post your were commenting on was referring to "atrophy" occurring during periods of inactivity such as recovery periods following surgery. For example, I had surgery to move my knee cap 20+ years ago. Muscle had to be cut. During the lengthy recovery period, I favored that leg when moving around and the calf atrophied significantly. It took two years to get it mostly returned to normal.

I agree with your statement

at 75 yo, not everyone has atrophy.

, but I don't that is what was being discussed.

 

[RetiredHappy]

I believe that the post your were commenting on was referring to "atrophy" occurring during periods of inactivity such as recovery periods following surgery. For example, I had surgery to move my knee cap 20+ years ago. Muscle had to be cut. During the lengthy recovery period, I favored that leg when moving around and the calf atrophied significantly. It took two years to get it mostly returned to normal.

I agree with your statement , but I don't that is what was being discussed.

I guess I was mistaken. I thought you meant that a 75 yo gets atrophy due to aging.

 

[MarieIG]

Thanks for letting us know Athena53. I agree with your attitude vis-a-vis education about your condition.

 

[youbet]

I guess I was mistaken. I thought you meant that a 75 yo gets atrophy due to aging.

Well, most of us will suffer atrophy due to aging at some point if we live long enough. But inactivity, such as a post-op physically limited period, can aggravate the situation! So lets all get out there and be active!

 

[athena53]

Well I can't say that isn't what I expected him to say..on the EF measure , isn't that an objective measure? If not what objective measures do they actually use?

In a nutshell he said keep doing what you are doing unless something gets worse. Anyway at least you informed yourself a little which is never a bad thing.

I know you will monitor yourself closely and if anything new develops you will get directly to the cardio doc. Looking back at DH experience I would say the biggest thing I wish for a do over with was not paying more attention to his EF numbers. It seemed once they started to drop they dropped rather quickly. The docs always brushed them off until they didn't.

Carry on and try not to let this get you down.

One thing they watch that IS objective is how the left ventricle is affected. Mine is definitely enlarged but we knew that from the initial diagnosis. There are various measures I saw in a Cleveland Clinic paper that I did NOT go and check against my results because that would lead to madness. Cardiologist says those measures are stable.

I know I'm taking a chance but I'm comfortable going on. When I asked what type of surgery might be used if it became necessary he started with "It depends.." (of course!) but when I asked if they'd be likely to do something trans-catheter or sternum-cracking he said the latter because I was otherwise in such great shape that I had a good chance of recovery. Umm, no, I do NOT like the idea of recovering from a cracked sternum. My Apple watch shows me calories burned, heart rate range during workouts, etc. and I'm reassured when there's consistency. It does EKGs but hat's another area that would lead to madness if I started trying to read my own!

My hope is that should surgery become necessary sometime down the line, the science and technology will be even better than it is now.

 

[Taco]

Athena, I don’t have anything to add on the medical side, but given that you love riding I encourage you to consider getting a pedal assist e-bike. If you've not tried one before, go to a good bike shop and test drive one. You've got nothing to lose!

I think it’s somewhat common for active people such as yourself, to be reluctant to go the e-bike route. I was. It's "cheating". But given that you love riding - there’s no reason you can’t continue doing that activity.

One option, just as an example, would be a Specialist Turbo Vado SL 4.0 Step-Through. It is pretty lightweight for an e-bike and when you turn on pedal assist it basically takes the effort you are exerting and doubles it. So you still have to work. It’s not a free ride. But you don’t have to work as hard.
It feels very natural. Like a regular bike, just a bit easier. You don’t have to use the assist at all - but it’s just there when you want/need it.

The non-SL version of that bike is a bit bigger and heavier, but it provides even more assist. It has 3 levels. If you are putting out 100 watts of power, it will essentially add 100, 200, or 300 watts.

I live in an area with a lot of hills. Some routes I ride have a 3-4 mile stretch that is all uphill. I still have to work, but the pedal assist helps flatten out those hills. It opens up rides that I otherwise would not tackle.

Wish you the best!

 

[Koolau]

Thanks for the update, athena53. It's great that you and your doctor have come to a better understanding and set a path forward. Blessings

 

[aja8888]

One thing they watch that IS objective is how the left ventricle is affected. Mine is definitely enlarged but we knew that from the initial diagnosis. There are various measures I saw in a Cleveland Clinic paper that I did NOT go and check against my results because that would lead to madness. Cardiologist says those measures are stable.

I know I'm taking a chance but I'm comfortable going on. When I asked what type of surgery might be used if it became necessary he started with "It depends.." (of course!) but when I asked if they'd be likely to do something trans-catheter or sternum-cracking he said the latter because I was otherwise in such great shape that I had a good chance of recovery. Umm, no, I do NOT like the idea of recovering from a cracked sternum. My Apple watch shows me calories burned, heart rate range during workouts, etc. and I'm reassured when there's consistency. It does EKGs but hat's another area that would lead to madness if I started trying to read my own!

My hope is that should surgery become necessary sometime down the line, the science and technology will be even better than it is now.

I previously mentioned my DW had her Mitral valve replaced in her early/mid 70's and we went the route of not cracking open the chest. Her bone density was not good so the doc deflated one lung and did the work from her side. The open chest route is no fun, whatsoever. And, looking at that big, long scar each morning is not pleasant. Actually, none of this is much fun.

 

[eyenitnoy]

My only comment is this. You have a symptom, breathlessness on exertion, and you also have a condition, mitral valve prolapse. I'd carefully examine whether or not there is a cause and effect relationship here. Everyone, including your doctors, seems to be drawing the conclusion that your symptoms are from a cardiac source, your mitral valve.

I'm not saying this is not the cause. But I'm doubtful. Shortness of breath has lots of causes. I'd suggest taking a step back and re-evaluating the symptom. Has a pulmonologist been consulted? Maybe the shortness of breath is of pulmonary etiology. And pulmonary causes are just one different potential cause. There are many!

Perhaps see a good general internist and pulmonologist for a second opinion as a start. Mitral valve prolapse is usually without symptoms. I'd be very careful attributing this usually harmless condition as the cause of your symptoms.

 

[athena53]

Perhaps see a good general internist and pulmonologist for a second opinion as a start. Mitral valve prolapse is usually without symptoms. I'd be very careful attributing this usually harmless condition as the cause of your symptoms.

Wow- that's an interesting idea and I suppose a cardiologist will be focused on the heart. What makes me think it's heart-related is the tingling I have in my lower legs, which started over 10 years ago as tingling in the soles of my feet during treadmill workouts. My muscles get a bit ache-y during exercise and I just figured the lactic acid wasn't being carried away fast enough- both circulatory issues.

OTOH, my VO2max is 30- just fine at age 71. Blood oxygen level always between 95-100. It did sink to 90 when I was at altitude in Peru last year. (I'm a hypochondriac with an Apple watch- can you tell?).

But it's worth more research and definitely worth consulting a pulmonologist before getting surgery to fix something that's not the source of the problem.

 

[ivinsfan]

eye.. I'm not sure of your background or if you have medical experience. but you are incorrect with your comment. MVP can be without symptoms but as it begins to worsen you absolutely can and will have symptoms. It's a classic progression.

 

[hmango]

I had mitral valve prolapse but luckily it was able to be repaired. There is an excellent website and book named Heart Valve Surgery by Adam Pick that are great resources. Here is the link: https://www.heart-valve-surgery.com/about-adam-pick-author-heart-valve.php. The information on the website and book helped me a lot and hope it is useful for you too.

 

[Teacher Terry]

I currently have a dog with this disease and one died of it and shortness of breath and coughing is often the first symptom. I have no medical background and realize people may be different than dogs. Wishing you the best Athena).

 

[athena53]

I had mitral valve prolapse but luckily it was able to be repaired. There is an excellent website and book named Heart Valve Surgery by Adam Pick that are great resources. Here is the link: https://www.heart-valve-surgery.com/about-adam-pick-author-heart-valve.php. The information on the website and book helped me a lot and hope it is useful for you too.

This looks like a great resource- thanks!

 

[aja8888]

My deceased wife's shortness of breath was caused by COPD. It took several years to kill her, even with the best of physician care and medicine available.

Her mitral valve leak (replaced the valve) a few years ago had no significant positive effect on her COPD issue.

She saw a pulmonologist for a decade through all of this.

Remember, when one gets older (say 70+), things start to go downhill, even with the best of care and exercise.

 

[athena53]

Remember, when one gets older (say 70+), things start to go downhill, even with the best of care and exercise.

I totally agree with this. I'm just VERY careful to avoid chalking up any deterioration to "you're just getting old" when there might be an underlying cause that can be treated.

 

[Koolau]

Remember, when one gets older (say 70+), things start to go downhill, even with the best of care and exercise.

I can attest. My normal decline seemed rather slow and steady until I hit (wait for it) age 70. Since then, I've begun to fall apart. YMMV

 

[ls99]

Yeah, 76, starting to take more time to learn new dance steps.

 

[athena53]

An update: first of all, thanks to everyone who posted with anecdotes and resources. I knew in my heart that I really wanted a second opinion but I'm a terrible people-pleaser and worried I'd offend my current cardiologist. I finally called that practice and asked for a referral, explaining that I understood there were no cookbook answers as to how this would progress and I'd like to get a second educated opinion. The nurse who got back to me was so nice- she said I could use another doc in their practice or they could suggest someone in another hospital system in their chain (Healthcare of America). I'm going with the one in their practice. They're going to call me back to schedule an appointment. Having done more research I have more questions, but I'm VERY relieved.

 

[Teacher Terry]

When I want a second opinion I never use a doctor in the same practice. I think it’s easier to get an unbiased opinion if the doctors have no association with each other.

 

[aja8888]

When I want a second opinion I never use a doctor in the same practice. I think it’s easier to get an unbiased opinion if the doctors have no association with each other.

I have to agree. Using a doctor in the same practice is a conflict of interest. They are "partners", remember.

 

[ivinsfan]

I have to agree. Using a doctor in the same practice is a conflict of interest. They are "partners", remember.

I disagree , We've used quit a few cardios in the same system and get varied viewpoints from several of them. If you have a good cardio practice/clinic it's insulting to think they talk in unison or all have the same opinions.

 

[ivinsfan]

An update: first of all, thanks to everyone who posted with anecdotes and resources. I knew in my heart that I really wanted a second opinion but I'm a terrible people-pleaser and worried I'd offend my current cardiologist. I finally called that practice and asked for a referral, explaining that I understood there were no cookbook answers as to how this would progress and I'd like to get a second educated opinion. The nurse who got back to me was so nice- she said I could use another doc in their practice or they could suggest someone in another hospital system in their chain (Healthcare of America). I'm going with the one in their practice. They're going to call me back to schedule an appointment. Having done more research I have more questions, but I'm VERY relieved.

So I'm curious if you have a specialist in that practice who is an EP cardio doctor, ie kind of a heart rhythm specialist. That might be the doc you want to have a conversation with, since you already have some heart enlargement. Valve issues if left unattended can possibly lead to enlargement. Maybe just to get his take on if your heart valve is contributing to the situation. Just a thought.

 

[athena53]

I disagree , We've used quit a few cardios in the same system and get varied viewpoints from several of them. If you have a good cardio practice/clinic it's insulting to think they talk in unison or all have the same opinions.

Thank you. As I noted, due to my own hangups I preferred to start with the same practice. It's better than letting my mental blocks keep me from getting a second opinion at all. I plan to ask Doc #2 what exactly he reviewed, with specifics. Has he checked the echos over time (7/2021, 1/2022, 2/2023, 1/2024)? What changes did he look for and what did he see/not see? What factors drove his recommendation, whatever that is?

If his answer is "I looked at Doc #1's notes and I agree with him"- yeah, I'd get a third opinion from a different practice even if I had to pay for it myself.