Mitral valve prolapse with moderate mitral regurgitation

[BeesMV]

Hello, I'm 29 years old, I have leaky mitral valve which was found when I was two years old, I've always had check up every 2 years and everything always ok, had few little flutters but was once in while, I had my son in 2014 was checked while I was pregnant.

In about September 2016 I noticed I was getting more pulpatation and on occasions I'd need to take deep breath in n out as felt a little short of breath, After few wks I mention it to my doctors who then contacted hospital I had a ECG , ECho and 72hr tape which picked up few eptopic beats, cardiologist said it's mild MV and I may need open heart surgery in 10yrs time.

February i noticed I was getting more pulpatation, scared to run as I would get really out of breath even walking I get tight chest, so when back to my gp he said he would tell my cardiologist doctor, it was a long wait for the appointment.

June I had funny turn at work chest was tight, I felt light headed, short of breath, the nurse I was working with checked my pulse which was irregular so she told me to go down to a&e. I was then giving test for heart attack, all was clear and I was giving propranolol to take twice a day doctor said it was my anxiety making symptoms worse.

The tablets helped a bit didnt feel the flutters as much but was still getting them, the tablets made me really tired and had funny dream. My symptoms got worse so I had another echo and 24hr tape then got an appointment last week with my cardiologist he said my MV is still showing as mild but he is concerned that my symptoms are getting worse so is going to talk to surgeons and he has organised for me to have a transesophageal echocardiogram to look at the back off my heart his also changed my tablets as I'm getting very tired at work, I work as a nursing assistant I get so tired doing 12hr shifts so his changed my tablets to diltiazem 90 mg and told me to take painkillers for chest pain I'm getting.

[irene75359]

You are dealing with a lot for a young mum and you have my sympathy. I can't offer any advice but there may be someone here with more knowledge of your condition. Thinking of you and hope the investigations go well.

[BeesMV in reply to irene75359]

Thank you. I've got my appointment for TOE on 8th Septemper.

[Upsky]

I have mitral regurgitation and mine is also described as mild, diagnosed 14 years ago after the birth of my 2nd child when my AF was picked up in 6 week check up, I was told I'd have echo every 2 years also to keep an eye on it, but after the first echo, I fell through the nhs net and was never recalled for echo and being young and far too tough to worry never bothered to call them, this march I had 3 very bad episodes of af which fortunately got the ball rolling again, whilst my MV hadn't got any worse I too get chest, neck and jaw pain on exertion (walking with intent) I've had a CT scan and all looks to be fine so it's like I suggested in the first place it's the meds for the af causing it, since march I have been using a glycerol trinitrate spray which almost instantly stops the pain, it gives me a banging headache for a minute of so, but it's so worth it for the relief it gives. Perhaps suggest to your gp.

I think the trouble is Af is so litttle understood that we're told it's not life threatening so just ride it out, but to me it seems when it comes in combination with something else like MV problems however mild they maybe it triggers such bad side effects, I also know that mitral regurg can cause af so it's a vicious circle and maybe us mild patients also need something done long before we're further along, why wait? They can repair a valve through a hole in your groin, so I don't really understand myself why wait until a total prolapse when someone is young and needing to be active. Hope you get sorted.

[BeesMV in reply to Upsky]

Did they say weather it could of been pregnancy putting pressure on the heart?

Sounds like you've been thought alot. Have they said to you if you will need surgery?

I will have to ask about the spay.

I've got my appointment for TOE on 8th September not looking forward to it but then want to know what is going on. If I have to the surgery or not and if I do will I have a repair or a replacement and my doctor said with replacement I will be on tabs where i can'tget pregnant. I really hope they do something soon. X

[Upsky in reply to BeesMV]

My MV is almost certainly genetic. my 3rd and last pregnancy was an exhausting time, I couldn't walk upstairs without a sit down half way and my heart stopped during last moments of labour, but I wasn't on any drugs at that time. I had an ablation two years after that birth and have been totally drug free since 2007 until this year.

I'm waiting for my referral back to papworth hospital, where I know for sure I will get the much wanted ablation and there has been talk of valve repair. Hope you get sorted out and can have a repair rather than a replacement x

Pain killers will do nothing for your chest pain, definitely ask about the GTN spray x

[BeesMV in reply to Upsky]

Oh no , you have been though alot. Fingers crossed for you to get the treatment you need, it's not nice with the symptoms we suffer with and then stress makes it worse.

I had TOE on 8th September, did not enjoy that at all. I was told the leak is now server and I need surgery.

I've not been given dates yet, I have to wait to see my cardiologist. I've felt bit down, I've kinda known I'll need surgery but to be told it's now server and I do need surgery. It's a repair not a replacement which is good.

X

[mrslightfoot]

Beesmv i am 45 and my story is very similar to yours drs found i had a mitral valve prolapse as a child i had regular heart scans every 12 months. I even did the same job as you.

I found the same over the years i started getting tired breathless, palpitations. And tests would show only mild leak.

From my experience i think the problem needs to be at a certain level before they will do anything. I had my surgery in 2003 in the end.

Good luck xxx

[BeesMV in reply to mrslightfoot]

Hi mrslightfoot, sounds like you have been thought alot, so you was about 32 when you had your op. Was yours a repair or a replacement? And how long did you have to wait ?

I find it hard at work I only do two 12hrs a week as son only 2. I'm on a surgical ward, my pain in my chest gets worse at work even with doing correct manual handling. It's so frustrating my chest has got worse just before starting the job, I've been in job 5 months now.

When you was short of breath did u ever feel sick too.

I've got appointment for TOE on 8th September not looking forward to it but just want it over and done with so I know what what.

I would like another child so they said we will talk about it once the results are though as if i need a replacement I'll be on medication where I can't get pregnant, so may be doI risk pregnancy before op. I did want to wait a little longer before having op as I want to do my nursing but looks like things may be taken out my hands.

Do you feel better after the op? Sorry about all the questions xx

[mrslightfoot]

Don,t think twice about asking me questions am happy to help if i can. Because of my age the surgeon opted for a repair but couldn't make a decision on replacement or repair till he did the op. I had mine done in Liverpool, and waited around 9 months. I was told in the December that i needed an operation by this time i got breathless just crossing the road, and had the op the following September. There was complications after my op so my recovery was a long haul. I am going next week for a ultra sound scan but so far the repair has lasted well. I have had a few TOE'S now and i was worried too the 1st couple i had a slight sedation the last one i did it without. so if your scared ask for something to relax you. Get yourself comfortable on the bed and try and relax. I promise you its not as bad i you think. I don't remember feeling sick when i was breathless. Good luck with you TOE but am sure you don't need it xxxxx

[BeesMV in reply to mrslightfoot]

Oh no sorry to hear things having been going so well. How was the ultra sound ? Hope all went ok.

I don't know how you had a few TOE, I don't think I could have one again, there may be small chance I would with sedation. But though out it i was constantly heving. They've found out that the leak is server now and I will need to have surgery to repair the valve

I've been feeling bit down about it all, I'm suprised it's now server, I didn't think it was that bad. And worried aboit the op since the TOE Friday just felt fed up o kinda of knew I needed surgery but to hear them say it.

I'm back in work tomorrow since TOE, I'm gonna talk to my manager say I can't do any lifting patients, I get chest pain while doing it anyway so I've tired to easy up but now server can't risk it. I have occupational health end of wk.

Xx

[Ianc2]

Glad to hear that you are going to talk to your manager, gently remind him that employers have a duty of care. Now that you have a definite diagnosis of severe valve leakage it may be time to think of taking some sick leave, assuming of course that this is part of your contract of employment?

[Cundara1234]

Hey, I found your text on the subject of mitral valve prolapse. I see from the date that it was 6 years ago. I also have a mild prolapse. Has anything changed for you in the meantime? How are you feeling?