Moderate Mitral Stenosis / Mild Regurgitation

[DCW]

Hi There,

Firstly I’m glad I’ve stumbled across this website. It seems there is lots of very helpful people on here offering their time and advice. It’s much appreciated and hope someone could shine a bit of light on my circumstances. I’m a 34 year old male with a history of heart conditions.

I had a mitral valve repair at the age of 12 to rectify mitral valve regurgitation. This was picked up at birth but they decided to wait until I was older to operate. Following the repair it was a success and I was monitored for a few years until they discharged me and told me I could go on to live a normal life as my heart is now fine. However since about the age of 21 I kept thinking I was having palpitations, had various checks ecg 24 hour monitor and a few echos but nothing ever showed. But at the age of 32 the nurse at my surgery picked up an irregular heart beat and I was diagnosed with persistent af. A Cardioversion was done last year and now my heart is in a normal rhythm and continue to take meds. But prior to the Cardioversion my ejection fraction was just below 50% and they picked up mild mitral stenois. A year since then my recent echo now shows moderate mitral stenosis and mild regurgitation. My consultant doesn’t seem to concerned as he thinks I’m asymptomatic. But I’m shattered all the time and do keep getting chest pains. Not crippling just niggling pains which can be very persistent. My consultant has arranged for me to have another echo in 6 months time. I’m just curious to go from mild to moderate in a year. Is that bad? Since seeing cardiology again since my af diagnosis I’ve only had two appointments and they both been with different consultants and both over the phone which is difficult for me to discuss everything properly. I just want to have a proper chat with them and what likely the future holds for me. I take 1.25mg beta blockers and run my own business which is a very active job, in which my health is beneficial for.

Thanks for your time those who choose to read and possibly respond.

Thanks David.

 

[pellicle]

Hey David

welcome

all my experience is in Aortic valve, but on this point:

My consultant doesn’t seem to concerned as he thinks I’m asymptomatic.

I would say that all the evidence now points to the best outcomes being had by earlier surgery not later. Don't wait till you're feeling stuffed to get it done.

Like you I had a repair (at about 10) which lasted till my late 20's when I got to where I needed another surgery. In my case that was 1992. I had a homograft and that lasted some (roughly) 20 years till I needed my next surgery (which while driven by an aneurysm my valve was not far behind). I picked a mechanical valve because I reckoned 3 surgeries was enough.

I find that management of INR is not only simple (for me) but I've made it trivial with a system (which I'm presently documenting for publishing as an eBook).

I also needed to resume beta blockers after covid.

The #1 myth you need to push into the dustbin and wash your hands on is the myth that you can't be physical with a mechanical valve. People listen to the worst case scenarios that (mainly this is a US problem, and I see you're in the UK) surgeons tell you about. We have a couple of Juijitsu players here, many cyclists and quite a few athletes who are on mechanical valves and take warfarin. Most of them also don't have problems managing it.

These guys are perhaps in the same league as this lady

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
I don't want to write an essay (you may have read some of those already), but I'll say welcome and I hope you get what you are looking for here.

Best Wishes

 

[Mister_James]

I would like to disagree. A working defective native valve is better than an operation.
There are many things that cause stenosis but that is not what is important. The heart adjusts and compensates. Do not give yourself panic attacks by imagining chest pains from panic attacks. You do not feel stenosis.
Things to pay attention to is echo readings especially heart chamber sizes (and your doc can read those for you). Afib can result from dilation of the atrium, is that happening? The ventricles become muscular to push blood against a resistant valve - is that happening. Are you valves stiffening with calcification?
What you would experience with mitral stenosis is congestion like asthma attack. Blood backs into the lungs with exertion but not pain.
What you have not said is whether you are unable to do any activities - do you run/jog? Climb stairs? Have you notice a change in your physical abilities?
Different echos can give you different readings. So the readings and your level of activity give doctors a baseline on how serious your condition is. Wait and see is a very good policy.
While at it, enjoy the Metoprolol

 

[DCW]

I would like to disagree. A working defective native valve is better than an operation.
There are many things that cause stenosis but that is not what is important. The heart adjusts and compensates. Do not give yourself panic attacks by imagining chest pains from panic attacks. You do not feel stenosis.
Things to pay attention to is echo readings especially heart chamber sizes (and your doc can read those for you). Afib can result from dilation of the atrium, is that happening? The ventricles become muscular to push blood against a resistant valve - is that happening. Are you valves stiffening with calcification?
What you would experience with mitral stenosis is congestion like asthma attack. Blood backs into the lungs with exertion but not pain.
What you have not said is whether you are unable to do any activities - do you run/jog? Climb stairs? Have you notice a change in your physical abilities?
Different echos can give you different readings. So the readings and your level of activity give doctors a baseline on how serious your condition is. Wait and see is a very good policy.
While at it, enjoy the Metoprolol

Thank you for your response. Yes I’m not saying the chest pains are linked but I’ve not had chance to discuss this with my consultant as our interactions are very limited. The chest pains have been happening since last year but seemed to intensify over Christmas when I had some time off work. I’ve not hurt myself from what I know of. The mitral stenosis has only come to surface this last week. So another echo has been scheduled for 6 months times. The problem is the mean gradient has significantly increased between echos 14 months apart, but the images don’t seem to show much difference. Hence the reason another echo has been scheduled. I’m not on metropolol, I’m on bisporolol beta blocker and only 1.25mg at the moment. As mentioned I have had persistent af but am in normal rhythm thanks to Cardioversion at the moment. My physical abilities are fine apart from fatigue I experience and extreme tiredness. I can fall asleep in a split second if I want to. But that may not have anything to do with it. But thought I’m best mentioning it. The doctors always look confused when I never suffered with breathlessness when I had a leaking valve as a child as it didn’t affect me from what I knew of.

Thanks for your responses. Really good of you both.

 

[DCW]

I just wanted to add. In regards to my job of course it’s tiring. But not where I get out of breath. I’m working on ladders all day climbing, scrubbing windows and stretching. Also I wish I just knew what triggered my af. Whilst it’s not rare for someone at 32 to get it. It’s certainly not common as when I went for the Cardioversion they do them in block bookings in the uk. Out 28 people I was the only one below 58

 

[pellicle]

Mister James

Without further qualifications from you on exactly what you are saying here, I'd call this potentially the one of most irresponsible posts I've seen here yet.

I would like to disagree. A working defective native valve is better than an operation.

The OP should be driven by the medical science on determining when they are a candidate for surgery, but one thing seems reasonably clear to me, once you have stenosis and once it gets past a certain point, depending on your age you will be better of getting it replaced.

Please post any studies or even readings to support or clarify you position

There are many things that cause stenosis but that is not what is important. The heart adjusts and compensates.

And this is the problem, it accommodates to the load and then leaves you with permanent problems or very durable problems if the valve is not repaired in time.

Even patient literature makes this clear

https://www.pennmedicine.org/for-pa...nditions-treated-a-to-z/aortic-valve-stenosis

Over time, aortic valve stenosis causes your heart’s left ventricle to pump harder to push blood through the narrowed aortic valve. The extra effort may cause the left ventricle to thicken, enlarge and weaken. If not addressed, this form of heart valve disease may lead to heart failure.​

Do not give yourself panic attacks by imagining chest pains from panic attacks.

However I fully agree with this point

You do not feel stenosis.

but disagree with this one; you do feel it, and its called symptomatic

I realised that the latter half of your post is one of more realism, and quite probably this is a just poorly started post (from my perspective) as you do go on to recognise some of the important aspects.

Things to pay attention to is echo readings especially heart chamber sizes (and your doc can read those for you).

I hope you clarify your position to DCW

 

[pellicle]

Out 28 people I was the only one below 58

well at least here you're good company ... quite a number of us had early starts ;-)

I don't read any panic or signs of overly emotional responses to your situation contained in your original post, and I don't feel there is any cause to feel anxious. Just follow the guidance, keep following the data.

I myself made it over 40 years to this point from my first OHS (and had two more along the way) and I'm not 60 yet.

Best Wishes.

 

[Teapotimus]

A working defective native valve is better than an operation.

My Cardiologist said these exact words to me, and was backed up by the head of ACHD department I'm a patient at. Who knows if it's true, but I'm glad he told me this, helped me change my mindset around completely, and has led to me establishing routines that are much healthier.

 

[dornole]

Hi there. I also have mitral issues so I’ll weigh in. I first learned I had severe mitral stenosis when I was 34 and developed congestive heart failure while pregnant with twins. Believe me, when it was severe, I knew! Zero chest pain but physical fatigue (not sleepiness but fatigue, like I had to rest halfway up a flight of stairs), inability to lie down without triggering severe hacking dry coughs (had to sleep upright) and eventually coughing up splats of blood. They delivered the twins early and did a repair and things have been pretty stable for 20+ years now.

So a couple things:

—keep getting echos even if you feel fine. They need to watch for enlargement of the ventricle that are irreversible if let go too far. FYI mine don’t seem to care about the atrium even though it’s very enlarged. They also measure valve area, gradient and ejection fraction.
—the data points for mitral are pretty different from aortic so do not try to draw conclusions based on what you see here related to aortic.
—my stenosis has stayed moderate or mod severe for 20 years with no need for surgery. It’s not a straight line progression
—there’s a margin of error with the echos so try not to get freaked out if you go up a notch. They can order a TEE for more accurate data. I have had this twice and both times they revised the severity back down a notch
—consider if your sleepiness could be related to overwork, sleep apnea or depression - this was the case for me. Like I said for me the valve created shortness of breath on minor exertion. Positional shortness of breath while lying down is a classic mitral stenosis symptom that should trigger an echo.

I can only say that for me, even with severe mitral stenosis I did not have chest pain, and I have had both mod or mod severe stenosis and moderate regurgitation for two decades now with no symptoms. Maybe some people get chest pain? I hope you find answers for the chest pain because that does not sound fun. You could be decades away from needing to worry about a mitral redo though. Sure hope so

 

[dornole]

Oh! One more thing it is fairly common for mitral issues to trigger afib. I don’t have it as far as I know but I’m on 325 mg aspirin daily as a safeguard against afib-related clots.

 

[dornole]

Also the beta blockers could be affecting your energy level, this is something to discuss with your doc to determine the best dose for you. I was put on them post repair and felt half dead (my blood pressure is low naturally). They agreed that in my case they were not necessary to continue.

 

[Gail in Ca]

My cardiologists and surgeon have always been conservative when it came to addressing my leaking mitral valve. It was noticed as mild when I had my 1st surgery at 34yrs to replace aortic valve and aortic aneurysm w graft.
It was leaking moderately at 46 when I had my 2nd surgery, replacing my porcine aortic valve, but I was too sick going into that surgery so the mitral again was not addressed. My surgeon said he could deal w my mitral thru the rib in the future.
After surviving bacterial endocarditis, I had my 3rd surgery to replace or repair everything the bacteria had eaten. My mitral, leaking mod to severe, was repaired w anulplasty ring. I felt great after recovering. Finally I had a barely leaking mitral. Oh well, the repair began to fail before 10 yrs went by. So, when it got to severe my cardiologist in nor cal said he would send me to a mitral clip specialist. However, I moved to so cal and the cardiologist recommended by my 1st surgeon said I was not a candidate for mitral clip. He instead increased my losartan and lasix to get my mitral leaking mod to severe instead of severe.
I decided to get another opinion and so went to a cardiologist recommended by my cardiologist in nor cal. He also does not recommend a 4th surgery, and so I’m in a wait and see again.
I do feel more fatigued and have more symptoms when exerting myself. I felt so good after that mitral repair, so it’s hard to accept how I feel now w mod to severe leakage. I used to be the youngest patient waiting for my appointment. Now, I’m one of the older ones at 68! Where’d that time go!! I get an echo yearly and see the cardiologist every 4 months. I’m in chronic a fib since 5 yrs after my 3rd surgery. But, I’m still alive, playing clarinet in a fantastic wind symphony and having many new experiences living in a new city.
You may just need to be patient with your mitral valve. Maybe in the future, the repair/replace will be an easier option.

 

[DCW]

Thanks everyone for your responses. Not been on here since my post. I’ve kind of been busy focusing on our second daughter who has recently been born. Got my next appointment booked for June and Echo for next month. Be glad to see the results and discuss the outcome with my consultant. I’m not anxious just frustrated and a bit deflated. Whilst I know I’m very lucky compared to some people. I always thought it would be a very straight line since my repair as the consultant at the time told me it was fixed and that would be it. I never expected to see anymore problems/ concerns with my mitral valve but guess I’ve just been very naive/ gullible. Thanks for everyone’s time to comment. It has been much appreciated.

 

[pellicle]

Hi

Not been on here since my post. I’ve kind of been busy focusing on our second daughter who has recently been born.

Congratulations!!

I always thought it would be a very straight line since my repair as the consultant at the time told me it was fixed and that would be it.

all too often these things are just a combination of misunderstandings, "unsaid expectations" and uncertainty.

When things go it tends to be non-linear. So (for instance with an Aortic bioprosthetic ) when you start to see SVD at (lets use round numbers) 10 years its not another 10 till surgery to replace it, its more like 2 ~ 5 years.

I never expected to see anymore problems/ concerns with my mitral valve but guess I’ve just been very naive/ gullible.

when I had my homograft in 1992 I asked how long it would last at each and every follow up study. By 10 years it was still "we don't know" ... some time in about 1999 I went to Japan and then Korea, and then Finland and it was only at about winter of 2009 I noticed my ski track times were falling (despite better technique). We cam back to Australia (2010) and got an appointment for a follow up (2011, I saw no rush). They found an aneurysm that was at 5.3cm (maybe 5.6?) and so while the valve was failing we just did the lot while we were in there (doing surgery #3). That was a lucky find.

Anyway, I got nearly 20 years out of the valve but it was already calcifying so I'd have needed surgery in another year or so anyway.

Best Wishes

 

[dornole]

Aw congrats on your baby girl. And go ahead and be happy. You’re still alive !! Yee haw!! You can handle monitoring your valve.

 

[mom2angel]

Congratulations on your baby girl! How did things turn out with your follow up appointment? Hope all is well