Mitral Valve Prolapse- Please talk me down

[athena53]

I was diagnosed with mitral valve prolapse 2+ years ago so that part is not new. What I noticed from the beginning is breathlessness on exertion-have had to scale back my workouts, avoid bicycling uphill, take it easy walking uphill...not awful in the grand scheme of things at almost 71 years old but still I whine about it and want things to be the way they were. Overall picture is good- calcium score is 1, took a treadmill test early on and cardiologist has never ordered a repeat, BP and weight at healthy levels, no other health issues.

I went for my annual echocardiogram January 18 and found the results posted this AM. Ejection fraction WAS stable at 65-70%. Now it's 55-60%. I'd almost convinced myself it wasn't getting worse. My biggest fear is having it get to the point where I really need to curtail my activities- I'm an avid traveler and I love the bicycle path behind my house (old RR bed, so pretty much level) in nice weather.

So..I consulted Dr. Google, of course. Looks like I'm not a candidate for surgery unless it gets worse. The stats I see on success for surgery look pretty good, both the open-heart version and trans-catheter, but I see anecdotes elsewhere of people getting surgery and not noticing any improvement at all.

Can anyone tell me about their own experience or that of people they know with mitral valve prolapse? Fortunately I meet with the cardiologist on Tuesday (1/23) so I do have a plan to get an expert opinion. He's been very supportive of my exercise, diet, etc. and has been very much "If its not too broken, don't try and fix it". I prefer minimal medical intervention on most things as well but I'd LOVE to get this fixed.

Thanks for any input you can provide.

 

[aja8888]

My wife had her mitral valve replaced at age 74. She had COPD, so breathing was an issue for years before the valve issue was uncovered. The cardiologist said her mitral valve leak "should" help her be able to process O2 better.

She went through the surgery (pig valve installed) and did not show any improvement in breathing after many tests.

Since you apparently don't have COPD, I wonder what the doc will say will be improved?

I can only report our outcome, which apparently was not any noticeable improvement in breathing capacity, but she was compromised beforehand.

 

[MdaPetralia]

I went for my annual echocardiogram January 18 and found the results posted this AM. Ejection fraction WAS stable at 65-70%. Now it's 55-60%.

Was EF of 65-70% from your last echo last year and on Jan 18 it's EF 55-60%."? If so, that's a change but 55-60% is still considered normal. Also, the echo report should have disclosed the degree of the leakage (e.g. trivial, mild, moderate, severe) as well as if any heart enlargement was noted.

As you have started experiencing symptoms, ask your Dr. to order another stress test, or better yet, an echo stress test. This will confirm if your symptoms are even heart/valve related.

Medications (e.g. beta-blockers) may help your symptoms.

 

[athena53]

Thanks for the responses so far, including the PMs from aja8888 sent on this topic months ago and today's from IvinsFan.

MdaPetralia, I've had these symptoms all along and yes, the heart is enlarged. That's something they found in a breast MRI even before symptoms started. (My late mother once said you should never let them scan your body because they'll find stuff you didn't even know was wrong.)

I'll report back on what the cardiologist says.

 

[Amethyst]

I would be interested in knowing this, too. Did your Dr. connect the two things (the breathlessness and the MVP)? Perhaps the cardiologist will have new ideas.

I empathize with the frustration of such an active, athletic person having to curtail her activity. It's maddening. Hang in there.

As you have started experiencing symptoms, ask your Dr. to order another stress test, or better yet, an echo stress test. This will confirm if your symptoms are even heart/valve related.

.

 

[athena53]

I would be interested in knowing this, too. Did your Dr. connect the two things (the breathlessness and the MVP)? Perhaps the cardiologist will have new ideas.

I empathize with the frustration of such an active, athletic person having to curtail her activity. It's maddening. Hang in there.

Yes, the doc IS my cardiologist and he says that the MVP is the factor behind the breathlessness.

I try not to whine too much-my sister is 2 years younger, shares my healthy habits, but was diagnosed with a TINY cancerous dot in one breast 6 years ago at age 62. She chose a double mastectomy and had a very bad allergic reaction to an antibiotic they used during surgery that left her with permanent liver damage. She has maybe 6 oz. of wine with dinner and that's it. She NEVER whines, obsesses over her issues, etc. I wish I could be more like that.

 

[Amethyst]

Perhaps she does her whining and obsessing internally. Everybody whines and obsesses over what's important to them - Even saints have/had internal torments and doubts. You simply have an outlet here, with plenty of others who worry about similar things.

Y She NEVER whines, obsesses over her issues, etc. I wish I could be more like that.

 

[ivinsfan]

Was EF of 65-70% from your last echo last year and on Jan 18 it's EF 55-60%."? If so, that's a change but 55-60% is still considered normal. Also, the echo report should have disclosed the degree of the leakage (e.g. trivial, mild, moderate, severe) as well as if any heart enlargement was noted.

As you have started experiencing symptoms, ask your Dr. to order another stress test, or better yet, an echo stress test. This will confirm if your symptoms are even heart/valve related.

Medications (e.g. beta-blockers) may help your symptoms.

Even heart related? These are classic symptoms of a mitral valve issue. As far as beta blockers that might help your symptoms but will make you unaware that your mitral valve leak might be getting worse. This exact thing happened to my DH.

 

[Koolau]

I suppose the most important thing is to trust your doctor (or find one you trust) and then take his/her advice.



At 71, most of us are beginning to slow down a bit anyway, so "count your blessings" that you don't need surgery. Pace yourself. Enjoy your life. Hug your family/SO/etc. Accept your limitations while never giving up.



Life is good!

 

[athena53]

I suppose the most important thing is to trust your doctor (or find one you trust) and then take his/her advice.

At 71, most of us are beginning to slow down a bit anyway, so "count your blessings" that you don't need surgery. Pace yourself. Enjoy your life. Hug your family/SO/etc. Accept your limitations while never giving up.

Life is good!

I'm beginning to think that if this one is against surgery I may get a second opinion. If it can alleviate the symptoms and if I have a better chance of success now when I don't have any other issues, why wait for it to get worse? Yes, I COULD live with the limitations I have now- but having it worsen and having to impose more limitations would really change my life.

 

[aja8888]

I'm beginning to think that if this one is against surgery I may get a second opinion. If it can alleviate the symptoms and if I have a better chance of success now when I don't have any other issues, why wait for it to get worse? Yes, I COULD live with the limitations I have now- but having it worsen and having to impose more limitations would really change my life.

I'm just going to state that these valve replacements can be pretty rough surgery depending on the method used to get the valve changed out. My wife had a real rough time recovering from the surgery and, like I said above, no noticeable improvement.

 

[ivinsfan]

Mr K. it's fine to trust your doctor, but one thing I know is that even cardio docs have vastly different opinions on many cardio issues, including what is the proper time to replace a mitral valve.



The cardio docs are the gate keepers to the cardio surgeons and so it goes. In fact our cardio doc in referring us to the cardio surgeon, virtually told us, here is what you need to say to get the surgeon to sign off on your operation. Why should it be so complicated

 

[ivinsfan]

I'm just going to state that these valve replacements can be pretty rough surgery depending on the method used to get the valve changed out. My wife had a real rough time recovering from the surgery and, like I said above, no noticeable improvement.

Robotic valve surgery is greatly improving and has helped many without the complications of regular chest splitting surgery. In fact it's one of the reasons I say get the surgery sooner rather then later.

 

[athena53]

Robotic valve surgery is greatly improving and has helped many without the complications of regular chest splitting surgery. In fact it's one of the reasons I say get the surgery sooner rather then later.

Yeah, I looked up the different types and although recovery from the traditional chest-splitting surgery sounds long and arduous, the minimally-invasive trans-catheter types are less so. I might even be a better candidate for the less-invasive if I don't wait till I'm hovering near the top of the transplant list.

 

[aja8888]

Robotic valve surgery is greatly improving and has helped many without the complications of regular chest splitting surgery. In fact it's one of the reasons I say get the surgery sooner rather then later.

My wife had it done by deflating a lung and going in from her side. One doc in Florida specialized in this procedure. Splitting her chest open was off the table due to her poor bone density from years of breathing enhancement steroids (prednisone).

 

[MdaPetralia]

Even heart related? These are classic symptoms of a mitral valve issue.

Breathlessness on exertion could also be due to other conditions as well (e.g. asthma, COPD, etc.).

As far as beta blockers that might help your symptoms but will make you unaware that your mitral valve leak might be getting worse. This exact thing happened to my DH.

Beta Blockers as well as other meds may help to treat symptoms. Repeat echo's should be performed to monitor the condition of the heart and progression.

 

[athena53]

Beta Blockers as well as other meds may help to treat symptoms. Repeat echo's should be performed to monitor the condition of the heart and progression.

We've been doing echos annually after I had one at 6 months. This is the first time it's gotten worse. I'm thinking the first was mid-2021, second was end of 2021, annual follow-ups early 2023 and now this one.

IIRC, my late DH referred to beta-blockers as his "feel bad all day pills". He had cardiac stents to deal with blockages, so totally different issues.

 

[Zona]

Mitral Valve Prolapse is exactly why I just made an appointment with a cardiologist. I'm 48 now and I've known about it since my 20's, had a baseline EKG & echo back then and was told yes MVP is confirmed but nothing else to worry about.

Over the years symptoms have been fairly consistent of just occasional brief palpitations when at rest. And all along I've told my primary doc that I do have palpitations on occasion and she has always said it's typical with MVP but otherwise my heart and lungs sound healthy.

But only recently in the last five or six months those palpitations have increased in frequency & noticeability. This thread really caught my attention because I have always (since my teens & 20's) been kind of breathless with intense exercise -- I always just chalked that up to being somewhat out of shape (I walk and hike but am not sporty and don't typically go to maxHR for extended periods of time). But I wonder if the lifetime of breathlessness can partially be explained by the mitral valve issue?

I've never really had a doc sit down and discuss what having MVP means in terms of healthspan or how lifestyle choices that can influence outcomes or anything. It was always just a box I checked on a form but nothing specific done to address it or anything during exams (other than the one baseline echo about 2 decades ago). Back when it was recommended my primary prescribed prophylactic antibiotics prior to dental work but the thinking on that changed years ago and now it's unnecessary.

Anyway, my mom recently passed from COPD and heart failure and that has me wanting to pay closer attention to my cardiovascular health. Hence the appointment with the cardiologist to begin more frequent appointments and get another baseline of where I'm at.

Thanks athena53 for starting this thread. I hope you get some answers and direction from your cardio doc on whether valve surgery would help your issue.

 

[ShadowBloom]

I would be very cautious about mitral valve surgery. Obviously people's experiences differ, and lots of people have good outcomes, but my father did not. He was 79 at the time and underwent a minimally invasive procedure (repair, not replacement). He spent 6 weeks in the hospital, mostly intensive care, and underwent a second surgery before being transferred directly to inpatient cardiac rehab. I don't remember how long he spent in rehab, probably a few weeks. He didn't need a cane to walk before the surgery, afterwards he did. He lived for an additional 10 years after this.

I have MVP myself and so far am symptom free. I would have to think very carefully if the risks of surgery were worth it for me should that ever change.

This was nearly 20 years ago and I know the minimally invasive repair procedure was fairly new then, so maybe the process is less risky now.

 

[athena53]

I have MVP myself and so far am symptom free. I would have to think very carefully if the risks of surgery were worth it for me should that ever change.

I know- I see everything from "I'm a new person since the surgery" to stories like your father's, with some in the middle seeing no difference.

I am definitely not symptom-free; in 2019 I did my last sprint triathlon (1/2 mile lake swim, 12 miles on the bike and a 5K run/walk) for the local corporate athletic competition. I got up all the hills, no problem, didn't even have to walk my bike. COVID put a stop to the events for a few years and now I can't even think of doing just the 5K. Running/jogging for any extended period of time is EXTREMELY uncomfortable so I just don't do it. You can see why I'm frustrated at the difference even though most people my age would be pretty satisfied with the status quo.

But, I really appreciate all the info I've gotten here and in PMs. Like the recent posts on the skiing accident and golf cart insurance, no cookbook answers but plenty of input for making an informed decision.

 

[ivinsfan]

I would be very cautious about mitral valve surgery. Obviously people's experiences differ, and lots of people have good outcomes, but my father did not. He was 79 at the time and underwent a minimally invasive procedure (repair, not replacement). He spent 6 weeks in the hospital, mostly intensive care, and underwent a second surgery before being transferred directly to inpatient cardiac rehab. I don't remember how long he spent in rehab, probably a few weeks. He didn't need a cane to walk before the surgery, afterwards he did. He lived for an additional 10 years after this.

I have MVP myself and so far am symptom free. I would have to think very carefully if the risks of surgery were worth it for me should that ever change.

This was nearly 20 years ago and I know the minimally invasive repair procedure was fairly new then, so maybe the process is less risky now.

Sorry that happened with your Dad, however something that happened 20 years ago to a 79 year old man isn't really real time info. I'm not sure what you mean about minimally invasive procedure for a mitral valve repair. As currently as maybe 10 years ago, you had to split the chest for either a valve repair or replacement. And of course complications from surgery vary from person to person and their age and health.

Every person will be different of course.

 

[athena53]

Every person will be different of course.

I agree- my late MIL had rheumatic fever as a child and was delicate all her life. She told me that the doctor practically threw her out of his office when she became pregnant with my Ex's younger sister! She had valve replacement surgery in 1983, was apparently recovering while staying with her daughter, then dripped dead one day. I'm guessing she was in her late 60s. It was a terrible shock to the family. They didn't do an autopsy.

I think my case is different.

 

[ShadowBloom]

I'm not sure what you mean about minimally invasive procedure for a mitral valve repair. As currently as maybe 10 years ago, you had to split the chest for either a valve repair or replacement.

This was my father's doctor: https://www.nytimes.com/2008/03/15/nyregion/15colvin.html

He died in 2008, a few years after my father's surgery. From the article,

"Dr. Colvin, who performed nearly 10,000 operations during his 30-year career at the N.Y.U. Medical Center, was also one of the first to use sternal-sparing cardiac surgery, a less invasive technique of repairing a valve by entry between the ribs rather than through the breastbone."

 

[ivinsfan]

This was my father's doctor: https://www.nytimes.com/2008/03/15/nyregion/15colvin.html

He died in 2008, a few years after my father's surgery. From the article,

"Dr. Colvin, who performed nearly 10,000 operations during his 30-year career at the N.Y.U. Medical Center, was also one of the first to use sternal-sparing cardiac surgery, a less invasive technique of repairing a valve by entry between the ribs rather than through the breastbone."

Yes the newer technic is to go through the groin much like an you do for an angioplasty...it's amazing and much easier on the patient particularly on older patients. Isn't it amazing how surgery advances. You Dad still had a pretty complex surgery.

 

[JBTX]

To preface I have no particular knowledge in this area.

I read through the thread anyway, a cardiologist in my 20s said I had mitral valve prolapse that that could be the cause of irregular heartbeats. But it’s not really been an issue since and now I’m 60.

As I read through the thread I thought one thing, but the last post discussed running tris and 5ks in late 60s and early 70s. I’d be very explicit with your doctor what your goals are - if I have this surgery will I be able to run 5ks comfortably again at 72? I’d be shocked if the answer was yes. I imagine for people of your age (and soon my age) that doctors are thinking in terms of a procedure that may be able to help you walk more comfortably. 5ks and tris are a whole different ball game.

My only experience with older relatives getting various types of valve surgeries was the recovery period was pretty long and they are often in worse physical shape than they went in, most likely due to the difficult recovery period and atrophy at that age.