Mitral Valve Prolapse- Please talk me down

[ivinsfan]

JBTX...wow what a condescending post...every person is different and over 5 years after his 2nd valve surgery at 75 my DH is very actively crop farming .

It's about you, a compatible doctor,realistic expectations and your general health. Don't generalize.

 

[RetiredHappy]

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.

I chuckled at the "atrophy at that age" description. My DH is 75 and turning 76 this year, still golfs 5 days a week and just shot his age again. There are certainly no signs of "atrophy". Everyone is different.

 

[athena53]

JTBX did raise the interesting question of what I expect out of this. No, I have no aspirations to run a marathon and if I'm done with 30-mile charity bike rides and sprint triathlons, I'm OK with that, too. I just want the breathlessness to alleviate and to happen less often. And, a symptom that I never mentioned because I assumed it's part of it-my calves and feet feel tingly a lot of the time. Oh, yeah-I ache when I exercise. Not muscle pain but what feels like lactic acid buildup because it's not being carried away fast enough. Yes, I WILL mention this at my appointment. I really have to push myself to do workouts where my heart rate never goes over 130.

And I REALLY don't want it to get worse.

I'm pretty resilient overall. I don't have a lot of body fat, so not much fat stored that I can burn while languishing in the ICU, but I have decent muscle mass, a healthy immune system and no other health issues. Maybe it's time todo surgery when I'm in a good position to recover.

 

[ivinsfan]

A53 I did not mention it but mostly likely you will be offered a cardiac rehab program post surgery. It will help you stay fit and monitor your heart rate while exercising and such.


You have a lot to think about but hopefully you'll have time to think and plan before your Dr visit.

 

[RE2Boys]

All surgeries carry a risk, you personally need to determine if the likely outcome is worth the risk.


In my case, a mild heart attack led to heart bypass surgery, even though I had done my typical 4 mile trail run just two days earlier. Three days after the surgery, I was one of the unlucky 3% that suffered a stroke following the surgery. The stroke was much more devastating than the surgery. Losing the ability to read, to write, to apply logical arithmetic operations was way more life changing than the ability to run 4 miles. Depends on how you define who you are.


I was extremely fortunate. With time and putting forth the effort of "use it or lose it" over many months, attempting to read everything I could, keeping up with home finances in MS Money, and staying active, I'm at least 90% recovered. By six months I was back to running 4 miles on trails. By 15 months I passed the IRS VITA test. All this the year I turned 70.

 

[MarieIG]

Have you made a list of your concerns and questions - and are you able to take someone (like your sister) with you when you meet with the cardiologist?

I mention this because some people (and I am not saying that you are one) may forget to raise an issue during the meeting - and due to the (potential) stress of the meeting, may not follow up on something or forget to broach something they intend to discuss.

 

[Chuckanut]

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.
:

+1. Great advice.

I can’t do many of the things I did in my 50’s or even early to mid 60’s. Now I do my own brand of travel in which I take it slow and easy. Somethings, I skip. I won’t be going on a 8 hour geology hike up Mt. Arduous. But, I will do the three hour ranger walk on the geology of Yosemite Valley.

A much older friend of mine, now past away, taught through his example that keeping going - even if the going is slower, - is the best way to deal with the reality of getting older. So I do that. When I travel I spend three or maybe four days doing what I could have done in two days at age 50. And I am reserving some things for the future. I have never cruised, but, I suppose I will when I must have an afternoon nap to get through the day, and thus need to always be near my room.

I have a leaky valve myself. I found out last year. In time, something will have to be done. Still that beats the heck out of the alternative. The thing I learned about being out-of-action from surgery is this; I lost a lot of strength. I finally figured it out for myself and started exercising more age it’s easy to go downhill fast, and then accept that lower strength level as ‘normal’, when in reality we can get much if not all of it, back. And, yes, getting it back takes longer after 65 than it did at 40 or 50. Such is life.

 

[Explore]

My father in law had this surgery done January 2022 at 76 years old. He has been hospitalized several times since sometimes for a week or so. He actually is in the hospital as I type. The surgery has caused him to have electrical issues with his heart. He will probably be having a second ablation done soon. The first ablation did not help him. He also has had a defibulator put in. I'm sure he wished he wouldn't have had that mvp surgery especially since he wasn't having any major issues. Now he has major issues. Just be aware that surgery may or may not solve your issues and that surgery always comes with risk.

 

[ivinsfan]

My father in law had this surgery done January 2022 at 76 years old. He has been hospitalized several times since sometimes for a week or so. He actually is in the hospital as I type. The surgery has caused him to have electrical issues with his heart. He will probably be having a second ablation done soon. The first ablation did not help him. He also has had a defibulator put in. I'm sure he wished he wouldn't have had that mvp surgery especially since he wasn't having any major issues. Now he has major issues. Just be aware that surgery may or may not solve your issues and that surgery always comes with risk.

Well this isn't good but in fact mitral valve prolapse itself can cause afib..or your heart can enlarge with MVP, which can cause AfIb...sometimes it's hard to know what's really going on.

 

[athena53]

Have you made a list of your concerns and questions - and are you able to take someone (like your sister) with you when you meet with the cardiologist?

I mention this because some people (and I am not saying that you are one) may forget to raise an issue during the meeting - and due to the (potential) stress of the meeting, may not follow up on something or forget to broach something they intend to discuss.

My sister is in SC and I'm in MO, so that's out. I'm not too concerned; I'll have my questions ready beforehand and I take good notes. I know it was important for me to be with DH at appointments as his condition deteriorated but fortunately I don't think I'm at that point yet. I'm also fascinated by human biology so I listen carefully.

 

[ivinsfan]

My sister is in SC and I'm in MO, so that's out. I'm not too concerned; I'll have my questions ready beforehand and I take good notes. I know it was important for me to be with DH at appointments as his condition deteriorated but fortunately I don't think I'm at that point yet. I'm also fascinated by human biology so I listen carefully.

I'm confident you got this and after all the years caring for your DH I'm also confident you don't just blindly follow medical advice without asking questions.

 

[oldphd]

Hi Athena,

Read the thread, and DW/family has experience in this, thought I would share our experience for your reference. Will be long...

She was diagnosed with MVP in her early 30s. Put on beta blocker by GP. She could feel what she called "skipping a beat". Was never much for exercise (personality, heart function, who knows). I could always do more, a 5 mile hike at 10K feet was doable, if slow, well into her 40s.

Don't recall exactly, but sometime in her 50s her GP said you should see a cardiologist regularly. At first the cardio doc said, you might need surgery at some point. That progressed to, you will need surgery at some point. Then one visit he said, you need surgery now, but it was at least 10 years after starting to see the cardio doc regularly. I don't recall ever hearing about EF numbers, despite them being mentioned regularly on med sites.

Her brother and two nephews were diagnosed with the same problem and had surgery (two before her, one after), her brother was replacement (went great, but unfortunately he passed from cancer about 16-18 years later, his cardio doc said the valve was great and something else will get you, he was right). Her two nephews were repair. The youngest nephew had his first repair at 39, opted for the minimally invasive. This was over ten years ago. That repair was not great, and he has since needed a second surgery, he opted for the sternum crack, and said "difference in recovery was not that different, and the repair wasn't as good with the minimally invasive". Based on this, the second nephew opted for sternum crack. That's been several years and he is doing well.

When we were getting to the point of "surgery is going to happen at some point", her cardio doc suggested that we consider traveling for surgery if we could handle it financially. Medium sized town in midwest, her specifics of leaking were at the difficult end of repair vs. replacement, and suggested specific surgeons at Cleveland Clinic and Mount Sinai NY as options (most surgeons would not even attempt a repair, per the regular cardio doc). When we got to the point of "you need surgery now", there was a new local surgeon, and he was now on the recommended list. This was 7 years ago and her surgeon said minimally invasive is not an option. There are lots of details as to when it may or may not be considered, and everyone's situation is different.

Surgery done, recovery normal, which is to say it takes a long time, maybe a year or so. Not just the crack the sternum, but the whole shebang.

She didn't come back to doing the types of activity you mentioned, but after 10 years of not doing a 10K foot mile long hike, she did it again. Improved? Yes. Like she's 40 again? No.

Fast forward to today. She has other health issues that are more of a problem, but sees the cardio doc regularly. We now live in a different, smaller, town, with new docs. During her recent echo the tech (in his 50s, I'd guess, experienced), said it was one of the best repairs he'd ever seen. Having a good surgeon makes all the difference!

One thing I found interesting... the surgeon she used was a medium aged guy, old enough to have experience but young enough to be up on new techniques. I'd never given it much thought, but her regular doc said very few older/experienced docs at the time she needed the surgery would have tried a repair, when they were learning her situation was only repair.

AF was mentioned, she went from occasional to persistent AF. Drugs, ablation, they kept her out for awhile but now it's here to stay. The "does MVP cause AF, or vice versa" question is out there. Either way, it's a progressive situation.

I wish you the best! Your situation doesn't sound as bad as hers or as extended over time, but things can change in a heart beat... OK, bad pun...

 

[ivinsfan]

To be completely clear the present day minimally invasive is going in through the groin and placing the valve using robotics. They can do repairs and replacements. A cardiac doc at DH clinic is nationally recognized...this surgery has grown tremendously in the last 5 years.

 

[athena53]

Hi Athena,

Read the thread, and DW/family has experience in this, thought I would share our experience for your reference. Will be long...

Thanks! Results in your family varied but overall sound good. I talked to my priest this morning- he and I occasionally trade anecdotes about our heart issues and when I mentioned my latest he told me HIS EF was 45%. He had valve repair 20 years ago after a heart attack accompanied by a diagnosis of T2 diabetes. He's 74, just finished a D.Div. and was ordained at age 70. Clearly he's functioning. He goes to the gym, too.

He's also been a hospital chaplain and he said there are so many new things they can do with heart surgery now. It occurred to me that he, and another priest I know who's a retired nurse would be good sources if I needed a referral to a surgeon.

So- I plan to talk with my cardiologist with an open mind. I know EF is not the only relevant metric and will not go down the rabbit hole of trying to parse out every measurement in my results. That's his job. If he makes a convincing case for no surgery, I may request a 6-month follow-up echocardiogram rather than wait another year. This thread, though has been immensely helpful, including the PM referral I got to the forums on valvereplacement.org. I've gathered facts and anecdotes, calmed down a bit, and will be prepared iwth good questions.

 

[oldphd]

To be completely clear the present day minimally invasive is going in through the groin and placing the valve using robotics. They can do repairs and replacements. A cardiac doc at DH clinic is nationally recognized...this surgery has grown tremendously in the last 5 years.

My robotic reference was over a decade old.

To be clear, I was referring to robotic surgery through the side of the chest without cracking the sternum.

I'm not the kind of doctor that helps people (obtuse reference to Randy Pausch for those paying attention), but my understanding is that the minimally invasive through a transcather procedure is limited to a situation with a stenosis and hardening/calcification. In very simplistic terms, they screw in a new valve to the hardened area. That is totally different than a prolapse situation where the flaps don't meet, aka regurgitation/insufficency.

I haven't looked anything up recently, but there are many types of issues, and in the case of leaks of the mitral valve with multiple leaks involving both flaps (DW's case), cracking the chest and doing open heart surgery for the repair is/was the only possibility.

DW also has an aortic issue, which is not as serious, and they didn't address in the original surgery due to the time on bypass. I asked her surgeon about the transcatheter options for the future, he said it wouldn't apply to her condition, albeit 7ish years ago.

 

[ivinsfan]

Of course you need to check with your cardio doc..but they are making leaps and bounds with this non invasive surgery. I'm simply saying there is another option available. It would take your surgeon and yourself to figure the best option..much like deciding how to fix blocked arteries.

 

[youbet]

I chuckled at the "atrophy at that age" description. My DH is 75 and turning 76 this year, still golfs 5 days a week and just shot his age again. There are certainly no signs of "atrophy". Everyone is different.

What surgery and how long was the recovery period (with the associated inactivity) that your husband made it through with no atrophy?

 

[athena53]

Of course you need to check with your cardio doc..but they are making leaps and bounds with this non invasive surgery. I'm simply saying there is another option available. It would take your surgeon and yourself to figure the best option..much like deciding how to fix blocked arteries.

Thanks- I know there are probably quite a few "right" answers with trade-offs for each if surgery is necessary. First step is to decide whether it's time for surgery.

 

[MdaPetralia]

I haven't looked anything up recently, but there are many types of issues, and in the case of leaks of the mitral valve with multiple leaks involving both flaps (DW's case), cracking the chest and doing open heart surgery for the repair is/was the only possibility.

There is also minimally invasive mitral valve repair that avoids "cracking the chest" (aka full sternotomy) where the incision can be made in other parts of the chest (partial sternotomy), to the right of the breastbone, or on the side between the ribs (right thoracotomy).

https://my.clevelandclinic.org/health/treatments/17240-mitral-valve-repair

 

[RetiredHappy]

What surgery and how long was the recovery period (with the associated inactivity) that your husband made it through with no atrophy?

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.

 

[athena53]

Well, THAT was a non-event.

Met with the cardiologist this morning. He's not at all excited about the change in ejection fraction because it's a subjective measure. I asked about left ventricle metrics since the left ventricle can enlarge and develop other pathology to accommodate the mitral valve regurgitation and I DO have cardiomegaly. He said it's all stable and to keep on doing what I'm doing (diligent about exercise and diet, BP and weight at a healthy level) and come back in a year.

I suppose I'm an example of why doctors don't like patients getting early access to their records, but as far as I'm concerned, even with the drama and panic it was OK since I learned a lot more about mitral valve prolapse and it confirmed what the doc was saying. Education is good.

Thanks to everyone here for their stories, insights and suggestions!

 

[Zona]

Thanks for reporting back Athena53. This thread was helpful for those of us with MVP. So glad the cardiologist could reassure you to keep doing what you are doing. Hearing how active you are inspires me to focus a bit more on increasing my cardiovascular capacity!

 

[aja8888]

Well, THAT was a non-event.

Met with the cardiologist this morning. He's not at all excited about the change in ejection fraction because it's a subjective measure. I asked about left ventricle metrics since the left ventricle can enlarge and develop other pathology to accommodate the mitral valve regurgitation and I DO have cardiomegaly. He said it's all stable and to keep on doing what I'm doing (diligent about exercise and diet, BP and weight at a healthy level) and come back in a year.

I suppose I'm an example of why doctors don't like patients getting early access to their records, but as far as I'm concerned, even with the drama and panic it was OK since I learned a lot more about mitral valve prolapse and it confirmed what the doc was saying. Education is good.

Thanks to everyone here for their stories, insights and suggestions!

Excellent!

 

[Amethyst]

Sounds great! Though...no encouraging words about your breathlessness? Just something to be lived with?

Well, THAT was a non-event.

Met with the cardiologist this morning. He's not at all excited about the change in ejection fraction because it's a subjective measure. I asked about left ventricle metrics since the left ventricle can enlarge and develop other pathology to accommodate the mitral valve regurgitation and I DO have cardiomegaly. He said it's all stable and to keep on doing what I'm doing (diligent about exercise and diet, BP and weight at a healthy level) and come back in a year.

I suppose I'm an example of why doctors don't like patients getting early access to their records, but as far as I'm concerned, even with the drama and panic it was OK since I learned a lot more about mitral valve prolapse and it confirmed what the doc was saying. Education is good.

Thanks to everyone here for their stories, insights and suggestions!

 

[athena53]

Sounds great! Though...no encouraging words about your breathlessness? Just something to be lived with?

Yeah, pretty much- it's been that way since mid-2021. I'm OK with that. I don't like it but it doesn't limit my activities that much.

We always need to consider the risks of what might be unnecessary surgery. I asked him what approach they might use if I needed it and he started with "It depends...", of course, but, ironically, he said they'd be more likely to use the sternum-splitting approach now because I was healthy enough to have a good chance of surviving it! I'd prefer to avoid recovery from that.