Leaky heart valve

[Dickydon]

Hi

Has anyone had a leaky heart valve and had it corrected or dealt with? Is it a keyhole or major operation type scenario?

Trying to look for paperwork that says which valve

Thanks

Chris

[BobD Volunteer]

Maybe best to look for a heart valve section of healthunlocked. There may be some AF people here who have had valve replacement but not many. As far as I know it is generally open heart for aortic valve at least.

Here in the AF world a lot of people have some mitral regurgiation (leaking mitral valve) but it is generally not treated unless it is really bad.

[seasider18 in reply to BobD]

There is a procedure called TAVI where a replacement aortic valve is inserted via the groin. I asked about it and was told that I was too fit to need that option. First time I haver been described as fit

bhf.org.uk/informationsuppo....

[10gingercats]

'They' are not inclined to do anything with a leaky tricuspid valve unless you are having open heart surgery for something else heart related .I do not know about mitral valve.

[Dickydon]

Thanks everyone for your input

Chris

[Luludean]

Hi Dickydon , I am luludean.

I have had valve repair.

I had a leaky mitral valve , I had lived with it for ages but it deteriorated as I got Into my forties and having had 4 kids.

My GP had poopooed my heart concerns, more or less telling me I was neurotic but, I chose to go for a private consultation . Thank goodness!

I was operated on soon after on the NHS at Papworth.

I had repair not , replacement .

I am perfectly willing to tell you my experiences , I expect many others have written in too.

[Dickydon]

Thanks Luludean, for letting me know. I do believe after a while the Dr’s do start to show signs of Okaaaaaay, what now! As I have several things going on at the moment, and you get that feeling when you go in there and I say to them I would avoid coming here if I didn’t need to. Being self-employed as well and having too much time off is not great either. But I’ve got cardiologist on 15 Nov to discuss that and the breathlessness I still get.

Thanks

[Emsysy]

Hi Dickydon. 13 years ago I was told I had a leaky valve (Mitral Regurgitation).

I have it assessed regularly and have been advised it's borderline whether or not to have it replaced or repaired.

My thoughts......1) The younger I am when I have the op (Open heart) the better.

2) Why press for any treatment when it bothers me little at my plus70 years of age; and I reckon I am fit and well otherwise. What way to Go ?

I have had AF for 13 years.

[Dickydon in reply to Emsysy]

Haaah, nice one. Another 70yrs in you yet!

[Hidden]

Hi Dickydon

I have leaking Aortic valve moderate. I have not been offer surgery yet just muddling through.

[seasider18 in reply to Hidden]

You can have a leaking one or one that is calcifying and closing up as mine was, It can go on for a long time without symptoms as mine was 75% closed when it was found during an examination when I was trying to get on a BP trial treatment.

[sandflopper]

My son in law has had this procedure which is a major issue. However he is well and now in the rudest health. You have to be guided by your professional clinical adviser. Good luck.

[Dickydon in reply to sandflopper]

Thanks for input.

[Ianc2]

Mitral valve repair is currently open heart surgery. You will need to see a cardiologist for an assessment of your condition and an update on current procedures. In my case I had a repair 4 years ago

Go for a private consultation to speed things along if you wish, but check on waiting lists as well. Take care and get as much information as you can.

[Hidden]

I had a leaking atrial valve that was discovered 10 or so years ago. I had the valve repaired at Papworth. It was open heart surgery which required that my body temperature was brought down, then my heart was stopped and I was put on a heart lung machine whilst the surgeon opened the heart and did some amazing needlework to repair the muscles that hold the valve in place. I was "out of it" for 36 hours, but then was got out of bed and encouraged to walk around the ward, and was released home after 6 days. It took me about twelve weeks to get back to "normal" and so far I've had no further problems with the valve, save that I have been left with permanent AF, and ablation, in my case, because my right atrium is enlarged, was not possible. I understand that there have been some advances in valve repair via keyhole surgery, but |I believe it is still a procedure that is in it's infancy. When I was scheduled for the operation I asked the surgeon what were the dangers of me not surviving the operation to which his response, confirmed later by his registrar, was that he had carried out more of these operations than most if not all of his peers, and he had not had one fatality. Coincidentally, the BBC later filmed this same surgeon actually doing a mitral valve repair. It was broadcast, probably 5 or 6 years ago, and was absolutely fascinating.

[Dickydon in reply to Hidden]

Wow! Sounds full on that. I remember filming open heart sugery in the V&A hospital in Boston, USA about 17yrs ago, for an Arabic TV documentary and it freaked me out a bit as I was standing right behind the head of the patient. I was in there for an hour or two and came out before op was completed. It’s the sawing of the rib cage that’s so unwatchable. But good luck to you which sounds like your all okay now.

[seasider18 in reply to Dickydon]

I had watched one on Youtube prior to mine, I was told that mine took 5 1/2 hours. They didn't keep me out for long after it and I was really quite pain free and I was trying to refuse pain meds the next day..

[Splashthecat]

I had a leaky mitral valve repaired successfully (so far) two years ago. They also treated my AF and did one bypass. It was open heart surgery I'm afraid not keyhole which I did ask about. One more thing, the night before the op I was told if the valve repair wasn't successful I'd need a replacement. I was offered a metal valve (Walfirin for life) or an animal one which may only last 10 years. I chose the metal one as I didn't want to be opened up again but luckily it wasn't necessary.

[seasider18 in reply to Splashthecat]

The tissue ones evidently last much longer now.

[Splashthecat in reply to seasider18]

I was told metal last for life

[seasider18 in reply to Splashthecat]

They do but as I was 78 I went for the one that should have avoided warfarin.

[seasider18]

Like you I did not have AF until having my atrial valve replaced. It seems about 35% have that problem but some go back into NSR on their own.

How was that first walk when you got out of bed? Two physios supported me and walked me down a long corridor and sat me down before going up two flights of stairs with a seat on each landing and then back to bed again. I lay there puffing and sweating as my lunch got cold.

[Dickydon in reply to seasider18]

Boy, that sounds like hard work!

[Suemoylan21]

Hi there my son had openheart surgery for mitral valve repair he was also told the night before if it was not successful they would replace which they did with a mechanical valve as this was the best option for him at 25 yrs old , unfortunately that does mean a lifetime on warafin but 12 months on he has ran a marathon , is back mountain climbing and in general having a very normal energetic life so all good , lots of people can live with a leaky valve with no complications, best of luck

[Dickydon in reply to Suemoylan21]

Thanks. I supposedly have had it for years and hasn’t been a issues really, but was mentioned again on my recent heart MRI scan which resulted in me having a Pacemaker.

[Hidden]

I too have a pacemaker, but only because on a 24 your monitor it was found that my heart had a tendency to stopping for an unacceptable period whilst I am asleep.. It had nothing to do with AF or the mitral valve repair.

[cbaum]

My story is much like all the others. I was diagnosed with a "prolapsed mitral valve" and told it wouldn't cause me any harm. I had no symptoms. I also was diagnosed with atrial fibrillation, also symptom free. I was 72 at the time and asked the cardiologist if my valve would ever get better, IE heal itself. He said no but that it could get worse and if so might require surgery. He said that heart surgeons could do amazing things these days, and that if I lived in a different town where they had better heart facilities, he would recommend getting it repaired or replaced right away. He liked the Cleveland Clinic (Ohio) and Mayo Clinic in Rochester, MN. He said the best course would be to wait and watch. I suggested going to Walter Reed in Bethesda and he said that would be a good choice. So I went to Walter Reed and they found that I also had 30% blockage in two arteries that fed the heart. The surgeon said that if he opened up my chest, he was going to do everything that might ever be needed. He ended up putting a ring around the mitral valve along with stitching some of the flap, a MAZE procedure to ameliorate the atrial fibrillation, closing the left atrial appendage (a source of clots), and bypassing the two arteries. As I understand things, likelihood of stroke increases with atrial fibrillation, defective valves, and high blood pressure, all of which I had. Again, all these defects were symptom free. My cardiologist and I both are deathly afraid of strokes (my brother has had a couple) and I will do anything he says to minimize that risk. Subsequent to my surgery (which was accomplished with no issues), my atrial fibrillation has ceased completely, but I do have ectopic heart beats (so I'm told). I am taking apixiban 5mg 2x, lisinopril 10mg 1x, metoprolol 12.5mg 2x, pravastatin (anti cholesterol) 20 mg 1x, 81 mg aspirin and VitD3 5000IU every other day. I have no side effects from any. I cut myself occasionally and don't seem to bleed any more than normal. The cardiologist talks of getting me off apixiban soon. My blood pressure is 120/59 pulse 59.

[Dickydon]

You sound healthy now sir!