Mitral Valve Regurg - Waiting Room

[Jkm7]

As someone in the waiting room, I'm wondering how long some of you were in the waiting room prior to Mitral Valve Repair or Replacement.

Thanks .... I'm so hoping some of you say a Very long time.

 

[WayneGM]

Perhaps not what you want to hear, but in my case it wasn't that long. I had no history of heart problems. Then at a routine annual check-up my GP noticed a murmur that was never noticed before. I was referred to a Card and went for additional tests and it turned out to be mitral valve regurgitation due to a leaky valve and that surgery to correct was likely inevitable. It was essentially described in layman's terms as the door hinge had come loose and it was get looser as the heart continued to pump. He intended to monitor me every six months to see how quickly the leak was progressing but it progressed so quickly it was just over 18 months after the murmur was first discovered that I had the mitral valve repair. I was asymtomatic throughout this time except about the couple of months before surgery when I noticed the odd heart palpitation.

To be honest once they told me I'd need heart surgery at some point, and after I got over the initial reaction...."why me....I feel fine!" ...I just wanted to get it over with rather than prolong the inevitable. I'm glad I went when I did as I was otherwise healthy and strong, and while a repair was possible. I've been told the repair should last indefinitely, and re-surgery for this particular problem is unlikely. Now it's behind me and I can get on with things without this hanging over me.

Good luck.

 

[catwoman]

Jkm7:

I was diagnosed in early 1990. I had an echo then, no repeats because my PCP didn't hear any change.
Fast-forward 13 years and it went south in no time.

 

[Pegasus]

My husband's story is similar as Waynes. At a routine check-up a murmur was heard. It showed a ruptured chordae and 4+ regurg. My husband was pretty much asymptomatic (except one thing: he is coaching wrestling and when he changed levels, demonstrating a move and talk at the same time he'd have to take in a deep breath).
2 weeks after the echo he had a surgeon's appt. and 2 months after his mitral valve was repaired. In fact, today is his 1st valve anniversary which goes by just any other day, really . He had a good surgery, a pretty smooth recovery and is doing fine a year post-op and back coaching wrestling etc.
In his case the ruptured chordae created an extreme leak in a short time (that's what cardio thought) and since the chordae doesn't attach itself and the valve was 'gushing' it coulnd't. Till my husband had the appt. with the surgeon he was naturally shocked (we both were) but we had a great surgeon whom we trusted and my husband kept up a postitive attitude. I think he atually preferred it not to have to wait so long.
I hope you can stay out of the operating room for a while longer but try to think that it is a fixable problem and you will feel great after (according to my husband It's always best to have surgery before there is any damage done to the heart.
Good luck!
astrid

 

[Adam 12-21-05]

JKM,

My first cardiologist, Dr. Bad Bedside Manner, told me to wait no longer than six months.

I didn't trust Dr. BBM. First, the guy was a jerk. Second, his nose was flushed red and I thought he was an alcoholic for sure.

That said, I got a second opinion. That was a good move.

Dr. Chaikin, my second cardiologist, noted that my aortic valve had severe regurg and stenosis - a double whammy.

Following my second echo, Dr. Chaikin, gave me no more than 30 days considering my dialated heart.

I know that is not what you want to hear. But, it does illustrate the conditions and variables at play here. I think you will find answers that are all over the map.

Cheers,

Adam

P.S. Did you get a second opinion?

 

[debster913]

If you mean from time of diagnosis to surgery, mine was quite a long time-- 30 years and nine months.

However, once I became noticeably symptomatic: two months. I was diagnosed with severe MR in April 2006, had valve repair exactly two months later.

If you're symptomatic, don't wait. You'll only be causing yourself more risk of infection/damage to your heart if you do. However, there are some who can go their entire lives with mitral regurgitation and never need surgery. But in my case, I had (have?) a myxomatous mitral valve, which meant surgery was inevitable. I remember my pediatric cardio mentioning valve surgery to me when I was 15. I never thought of it again until my valve started showing signs of early failure in 2004. I was 29 then, asymptomatic, and didn't need surgery at the time...not until I became symptomatic, and I went downhill pretty fast.

I can tell you that I feel a whole lot better now than I did a year ago. I'm still not 100% myself yet, but maybe it's the "end of the school year blues." Still, I feel better and stronger every day. Surgery was a blessing, and I'm glad I had it when I did.

Debi (debster913)

 

[MaryC]

I was in the waiting room for several years - I just didn't know it. I guess I was in a state of denial...or maybe my caridologist was. I had been going to my cardio 13 years and started out as mild regurg. Over thr last few years I have been moderate to severe. It was my brother's surgeon (that did his mitral valve replacement) telling me his valve couldn't be repaired but probably could have several years ago that woke me up to reality. When I asked my cardiologist specific questions about my mitral valvue - about the condition of posterior leaflet and the anterior leaflets he scheduled a TEE because he said he couldn't tell from a general ECHO. After the TEE 2 cardiologists referred me for surgery. I had the surgery 2-3 months later.

 

[MikeHeim]

The tone of your e-mail makes me possibly think that you're afraid you're getting closer?

I was in the waiting room for about six months. In fact, there wasn't any waiting about it. I started having SOB issues while running in June. My PCP heard a murmer in July. I visited a Cardiologist and had an echo in August. I had my TEE in September and my Angiogram in October. In November I had my surgical consult and my surgery in December. As you can see, I spent my entire time in the waiting room scheduling appointments and going to escallating levels of specialists.

From my experience on this site, some people go very fast (like I did), and others take years before they start experiencing symptoms. If you feel like you're starting to feel different, you really should get it checked out...

 

[Jkm7]

Thank you so much for sharing.
I am teetering on the edge, so to speak.

I had heart attacks and bypass surgery 3 1/2 years ago. About a year later, my PCP heard a murmer for the first time. My cardio did an echo which showed some left heart enlargement from my heart remodeling after the heart attacks. That enlargement ultimatley is causing mitral valve regurg. The leak showed a little worse on the next echo but then seemed to have stabalized. I am just on the edge of 'it's time for surgery'. My cardio (who I hugely admire and trust) is watching it closely and if I were symptomatic or told him I was feeling unwell, I'm quite sure he'd be referring me. But I feel well and am able to do all that I need (want) to do. I have asked and he has told me my heart is not suffering more damage at this point.

I walk daily and have since my heart attack..... as a matter of fact, the other evening, my DH and I were out for our evening walk and ran into my cardio. That was quite funny actually. I don't really get very short of breath when walking and if there are other symptoms typical to MVR, I don't know what they are. I generally have energy and feel well.

I see my cardio next month and have another echo scheduled. Each time these appointments approach, I start to realize this could be the time he'll say time for another OHS.

I know if I requested, he would agree for me to 'do it now and get it over with'.

My sincere wish is to wait it out as long as I can, of course.
I keep kidding myself the docs at Brigham and Women's or Mass General will perfect the procedure whereby mitral valve repairs will be possible by cath procedure rather than open chest surgery.

Thank you so much for letting me 'vent' here. I try to not speak about it with friends or others around me. They worry and really can't understand what it feels like to have a black cloud of a second OHS hanging over one's head. I hope none of them ever have to know.

What do you think?

I am soo soooo sorry I went on and on like this.

 

[MaryC]

You said something that jumped out at me. 'My cardio (who I hugely admire and trust) is watching it closely and if I were symptomatic or told him I was feeling unwell, I'm quite sure he'd be referring me.'. I was jogging, riding my recumbant bike, pretty much without symptoms right up until my surgery. You need to go by the test results/measurements and not how you feel or your exercise tolerence. As I was told, there is no 'up' side to waiting if your condition warrants surgery. I would consider talking to your cardiologist about specific criteria he looks at for referring his patients for surgery outside of symptoms. I have found there's a disconnect between surgeons and cardios....

 

[Marty]

You said something that jumped out at me. 'My cardio (who I hugely admire and trust) is watching it closely and if I were symptomatic or told him I was feeling unwell, I'm quite sure he'd be referring me.'. I was jogging, riding my recumbant bike, pretty much without symptoms right up until my surgery. You need to go by the test results/measurements and not how you feel or your exercise tolerence. As I was told, there is no 'up' side to waiting if your condition warrants surgery. I would consider talking to your cardiologist about specific criteria he looks at for referring his patients for surgery outside of symptoms. I have found there's a disconnect between surgeons and cardios....

This is the right answer. I was told I could last maybe another ten years without surgery-slowly going downhill into chronic congestive heart failure. No fun.
I got a second opinion and the cardiologist showed me an X-ray of a patient of his who declined surgery. The heart was enlarged and filled up almost the entire chest The next day I called my surgeons office and said "schedule me"!
No regrets I've had eight good years and still feel great.

 

[Jkm7]

I have considered those points and they are VERY WELL taken. I understand what you are saying.

My cardio is telling me the regurg has stabalized and the last two echos are identical. He says there is some chance it could stay this way for a very long time and I might avoid surgery permanently....or that it can go bad fast. That is why he monitors me closely.
I know some cardios are slow about referring their patients out to surgeons but I don't think that he is one of them. I think his opinion at the moment is that I am stable and the enlargement is not that servere and has not worsened. I know for sure if it changes at all for the negative he will be sending me on.

I don't kid myself it is going to get better by itself but I do keep hopeful it could stay at this stable state for an extended period and the longer it is stable and I avoid surgery, the better chance they can perfect the new cath procedure for repair. I have read references that Brigham and Womans is actively working on it and may already be doing trials??

I also asked my cardio if I were risking the chance for a repair vs a replacement by waiting and he said that at the moment, No, I was not but if it gets worse, that could be a different story, I imagine.

Thank you so much for taking the time to read all this and conribute your thoughts and experience to help me.

I truly appreciate it. I have come to really rely on this site for such excellent nformation and education and the kindness of you all.

Only someone who 'has been' there can fully understand.

 

[ruth]

JKM -

Just curious is all but what caused your mitral regurg, do you know?

I was told I had a murmor at age 12 from rheumatic fever. Fast forward 35 years, through 2 pregnancies and a generally healthy life and then the symptoms started last October. Irregular heartbeats and SOB.

Now, mind you I was followed by cardiologists for the first 25 years or so. Then I got lax. I had 2 boys to raise and 'better' things to do than worry over a heart issue I'd had most of my life. The symptoms caught me off guard. I'm just out of shape, getting older, the extra 20 lbs are catching up with me, every excuse in the book.

I went back to a cardio, we'd moved since the previous one so she was new to me. The echo wasn't good, she said maybe I could wait 6 months for surgery but that I should have a visit with a surgeon. The surgeon said maybe I could wait 4-6 WEEKS. The goal was to stop the heart from continuing to enlarge and operate before any further bad things happened.

If it's possible to be in the waiting room too long then that's what happened to me. I should have been more diligent. I got lucky, the cardio's best guess is that perhaps they might have wanted to operate a few months sooner but that all told it was OK the way it happened. Like I said, I got lucky, best not to leave these things to chance.

I wish you all the best in your waiting game. As others have said valves often stay stable for quite awhile and then go south quickly so vigilence is a good thing.

In retrospect I think there were other symptoms that I missed because they were too subtle. I was tired a lot, didn't have much energy during the day, my tolerance for strenuous exercise was limited, etc. I wasn't just getting older/out of shape, etc, my valve was to blame. I feel 10 times better and 10 years younger now! If I'd known then what I know now I would have wanted the surgery so much sooner than later.

Ruth

 

[Adrienne]

Like Ruth, I probably waited a bit too long, but as things turned out, I was extremely lucky, and everything turned out well.

In about 1967 a doctor told me I had a heart murmur and asked if I had ever had rheumatic fever. When I said no, she said it was a functional heart murmur and not to worry about it (whatever a functional heart murmur is)! In those days, I don't think echocardiograms existed.

Then in 1983, to make a long story short, I had an echo and was diagnosed with mitral valve prolapse. The doctor said to take antibiotics before dental appointments, etc., but other than that, it was no big thing. He never sent me for another echo until one day after surfing the net in 1999 or 2000, I asked him for another echo. Well, that one showed a lot of regurgitation and I then got a cardiologist. To call my that cardiologist a non alarmist is an understatement. He was a very nice man, but... In any case, in 2004 out of the blue I got endocarditis (another long, long story). The doctors at the hospital where I was treated said I needed valve surgery which totally freaked me out.

To make another long story short, I got about 4 other opinions including the opinion of the surgeon who would indeed be my surgeon at the Montreal Heart Institute. At the end of 2004, he said that within a year or two I should definitely have the surgery and that I was a good candidate for a repair. He then said to see him in 6 months after an echo. I had the echo, but since he is the Chief of Surgery and is always off to conferences, etc., plus the fact that it is hard to get quick appointments with doctors up here in any case, I was still waiting to see him when in August 2005 I got atrial fibrillation.

To make another long story short, towards the end of August my husband brought me to the ER of the Montreal Heart Institute. The surgery would have been done the next week while I was in the hospital, but my surgeon was going to Belgium for two weeks (for work). I got to see him the Friday before he left. At this time he said that from what he had seen on the TEE, he would have to do a sternotomy (not the minimally invasive operation we had talked about) and that my chances for a repair were 80% (before he thought they were at least 95%). He also said he would do a MAZE procedure for the A-Fib.

Well, everything turned out wonderfully, and my LV went back right away to normal size. My LA shrunk by about a centimeter, although it will always be a bit big. My heartbeat is in normal sinus rhythm.

So, I am very lucky, but I truly think that I probably should have had the operation a bit sooner.

 

[sue943]

Murmer first appeared on 27th March, replacement surgery on 30th June same year as it was really bad.

 

[Jkm7]

Very interesting each of your cases and I truly am hugely grateful to you for sharing. I'm learning a lot.

My Mitral Valve Regurg is the result of heart attacks I had 3 1/2 years ago. A part of where my heart was damaged by the MI's is where valve cords attach to heart wall. I have some left heart enlargement. Not severe and not increasing. But the enlargement has pulled the valve open making too large a space thus allowing for regurg. Where the cords are looser than they were/should be.

I have no right heart enlargement; my pulmonary function is normal. All other valves are normal. EF is low normal. I'm normal weight, total cholesterol 123, exercise almost daily, eat a very healthy diet, have normal (corrected) blood pressure. Drink moderately red wine and don't smoke. I had bypass surgery at the time of my heart attack as stent placement did not work. Nuclear stress indicates good blood flow and no sign of blockages. Lots of family heart disease history.

My cardio has explained to me that I am close to thinking about surgery. I haven't 'crossed the line' to where my heart is being permanently damaged and, in fact, the last several echos showed stability in my condition. If I were feeling poorly, I probably would be asking him to say, Okay, let's do it. If he implied there was any chance my heart was suffering more damage there would be no question. He has not given me the feeling he would resist if I encouraged going forward now. But, certainly, I take his lead. I know traditionally cardios hold back longer than surgeons. I also know if I ask, he will refer me to consult with a surgeon. Perhaps that is what I will do when I see him. I'm not prepared to rush into surgery by any means if there is evidence the regurg has stabalized and if my next echo reads the same as the previous several, I am prone to hold back and continue watching it.

He thinks there is some percentage of chance that valve could continue to be stable and not worsen. But he has also made it clear it could go south.

Thank you for letting me 'think out loud' here. I know what I'm doing is trying to prepare myself for the possibility of hearing that this echo shows change from the last. As a second OHS, I know what to expect. I also know it makes much more sense to have the surgery when feeling good and when still physcially active. Makes for better healing/recuperation etc. (hopefully).

Thank you again.

 

[rangerscat]

To Pegasus

To Pegasus

Hello Pegasus,

I just read your post about your husband and I read that he is a wrestling coach. I to am a wrestling coach and have surgery set for May 22.
I would like to hear from you and know how your husband is doing and how long it took him to getting back to coaching. I'm having Aortic Valve replacement, and since it is in May, I hope I have time to recover before our season starts back up in mid Sept. I would really like to hear his story and how he delt with it. I'm eager to know how it will effect my coaching, since I am so hands on with my boys.

Thanks,

Ranger

 

[Pegasus]

Hello Ranger,
my husband will be pleased to hear about other wrestling coaches as well.
My husband had his mitral valve repaired May 8 / 2006. He was fit and in good health when he went in for surgery. He was 63 at the time but he has lucky genes so you'd never know.
He had a super surgery -bled very little, was on minimum meds and could be weaned off quickly too. When he came out of surgery he just looked like always. He had some A-fib on the 2nd day of the surgery due to blood loss from a Heparin bleed (nurse had made a mistake and inflated urinary catheder too early and so the bleed started). Anyways, not to scare you with that - I am sure that doesn't happen very often and A-fib was conrolled after 20 hrs. He left the hospital after 8 days (delay because of the bleed) and 2 weeks post-op he was taken off all medications except for Coumadin for 3 months (since he was a repair).
He started yoga-type exercises and as walking (often in our pool as well ) right away. At 3 months he was cleared for cardiac rehab. His cardio was very conservative about healing the sternum properly. My husband wanted to be back for the season in Sept but I was a bit worried and in Nov. he was running one practice a week - he backed off just to please me. He also keeps his BP low naturally for the valve (around 105-110/70) he does get a bit dizzy when changing levels (bending down quickly). I always had low BP all my life and I am the same - so this is nothing to worry about.
In Jan. 2007 he went back to 3 wrestling practices a week (about 2hrs each). He cut out the 4th one. He is doing well as always. You can't even see the top part of the scar anymore. Sometimes when a kid pushes into him the sternum hurts a bit. He doesn't wrestle with the kids on the mat all that much anymore - he is more demonstrating and teaching technique but that's more because he has a 5mm shift in his neck (old wrestling injury). He has co-coaches who help.
However, he was cleared by surgeon and cardio to do whatever and since you are probably younger (and hopfeully less injureis I don't see why you shouldn't be able wrestle with the kids anymore. Make sure your sternum is really healed - you don't want to aggrevate that too early and have life-long pain with it. Get back in shape (since you are already in shape this shoudln't take too long.) Get your cardio's or surgeon's clearance and enjoy life - that's what my husband was told.
Some meds can make you dizzy or drowsy so if you are on meds you have to take this into consideration. My husband just couldn't tolerate them (it depends on the individual). He was supposed to be on for a short time anyways so they just took him off early and his BP and pulse were always fine. Also, will you be on coumadin? So you might have to take a bit more care.
Do you have coaches or students helping witht he practices? It would be a good idea to have some back-up till you are sure that you can handle it. Your body will tell when to stop.
That's probably more than you wanted to know If you have any more questions you can pm me, and I will send you my husband's private e-mail.
Best of luck to you!!

 

[Pegasus]

Ranger, I forgot to mention that if you have to move wrestling mats or use wrestling dummies (the heavy leather ones) it's probably best to have someone else handle them. You should check with your cardio or surgeon what weight lifting (max.) restrictions - if any - you will have. The reason why I didn't want my husband start wrestling too soon was because I was worried about the kid's germs. Your body goes through a lot and even though my husband had a fairly easy recovery, it might have left him more suspectible if he had pushed himself too early. They did tell him full recovery takes about 1 yr. He also carries an antibacterial solution with him to practice so he can address any wounds quickly. Cardio and surgeon always told him to be careful even with small wounds because of Endocarditis. I am sure you'll have everything going for you - especially if you are younger and fit you'll be back wrestling in no time.

I apologize to everyone else to kinda hijakcing the thread!

 

[Birky]

waiting

waiting

I was diagnosed when I was 34 and had surgery when I was 55.