Life after mitral valve surgery?

[aromariot]

Hi all, are there any young(ish) people here who could share their experience of life after mitral valve surgery? I'm 35 and just been told I'll need mitral repair or replacement this year because my regurgitation has worsened from moderate to severe. I've been doing my research, but a lot of the info available seems to be be for people 60+. I lead a physically active life and hope to live for a good few more decades. I'm wondering what level of energy and physical activity I'm likely to have after surgery and recovery, and what effect being on warfarin for several decades might have on my quality of life? Thanks in advance and happy new year!

[Paperlover]

I was 55 when I had my valve repaired. I think they always try to repair if they can - I have a St Jude ring to support my valve but don’t require warfarin. I do take clopidogrel and will do so for life but that’s no big deal and I think more to do with a stroke before the operation. My operation was minimally invasive, so no cutting of the sternum and no post op wires. I’m back to doing everything I could do before including gym classes, spinning and running. My surgeon said there were no limits on what I could do and I’ve not found any. I had a scan after 12 months and now only have to go every 3 to 5 years.

[aromariot in reply to Paperlover]

Thanks Paperlover, that's really good to know! I'm reassured to hear you're able to do everything you could do before the op, and that the follow-up is not that frequent!

[Classof1988]

Hi, I don't have experience of mitral valve surgery but I do have experience of aortic valve replacement so I hope this can help you. I was an otherwise healthy and active 32 year old when my aortic valve was replaced, the result of a childhood bout of rheumatic fever. The operation itself was not painful due to good pain management, and after being a bit groggy from the anaesthetic I was out of hospital in 10 days and back driving after 10 weeks and at work after 12. I have now been on Warfarin for 35 years (and this is the only medication I take) and live a fully normal life, even having had a safety critical occupation for the last 15 years of my career prior to choosing to take an early retirement (my health was not a reason for this). Warfarin is presently pretty stable and I can go around 10 weeks between INR tests. I have never smoked, hardly ever drink alcohol and try to eat healthily and walk an average of 3 miles a day or the indoor equivalent so I believe all these help, but Warfarin should not stop you from doing anything you want to and it is quite possible to be in good health with a working valve and no side effects 30+ years after the operation. Hope this puts your mind at rest.

[aromariot in reply to Classof1988]

Thank you so much Classof1988, this does indeed put my mind at rest. It sounds like your situation was a little similar to mine, as my valve problem is also thought to be due to childhood rheumatic fever. It's really reassuring to hear you're not experiencing any side effects after the op and several decades of warfarin

[Classof1988 in reply to aromariot]

Glad I can help. If you want any more info on the op and pre-op plus cardiac rehab please let me know, although things have moved forward since my op ( cardiac rehab may have moved backwards unless anywhere still does residential courses)

[aromariot in reply to Classof1988]

Thank you very much, I may well take you up on that offer nearer the time (I've only just been put on the waiting list for the op, it's 8 months long where I live). I want to make sure I'm doing everything I can to improve my chances of a successful procedure and smooth recovery

[Claire_42]

Hello aromariot, my partner is a healthy 49yr old, active and plays golf etc and has a physical job, found out in Dec 2022 he had a leaking mitral valve - he never had any symptoms other than feeling tired - it is now classed as severe and he is booked in for a repair/replacement in a couple of weeks so although I can't offer any advice right now I just wanted to say hello and am also really interested in any advice from others who are post op. I have found a lot of useful into on the BHF website particularly a downloadable doc that goes through valve surgery and recovery info and what to expect etc

[aromariot in reply to Claire_42]

Thanks Claire, I'll look out for that BHF downloadable doc. Good luck to you and your partner!

[Claire_42 in reply to aromariot]

And our best wishes to you too - this is the page I found the most helpful: bhf.org.uk/informationsuppo... I also ring up the helpline with any and all questions

[Mitchum]

Hello there. I'm sorry but I'm not young (unfortunately). I had mechanical mitral valve surgery 20 years ago when I was 55. they were hoping for a repair but without success. Since then I have lived as normal a life as possible, physically and mentally. I am almost six foot and weigh between 13 stone and 13 stone 4lb. I drink beer, gin and red wine daily (not all at once I stress)🙂. I go in the gym three days a week and use moderately heavy weights relative to my age and joint/heart situation. I take levothyroxine, statins and warfarin and eat a balanced diet with a regular intake of vitamin K. This helps my INR to remain stable and with the help of my own machine is basically problem free. Warfarin has an unwarranted bad press as without it, I, and millions more, would not be alive! I have a myriad of answers for your specific questions if you want to ask. It would probably put your mind at ease. Just let me know.

[aromariot in reply to Mitchum]

Thanks Mitchum, this is really reassuring. If I need to take warfarin for the rest of my life, I'm hoping I can get a home monitoring machine, since going to the doctor so frequently sounds like a pain.

[Mitchum in reply to aromariot]

Being able to self monitor is a great relief. I have done it for ten years. It also encourages you to learn more about INR and to keep it stable. On the positive side, maybe you won't need it as it's possible you will have a repair and not a replacement.

[Luludean]

hi aromatiot,

I had mitral valve repair when I was 50. For years I knew something was wrong but, I was fobbed off and told I looked fine. My father died suddenly in my house. Not of mitral valve problem but, it shocked me and I went for a private initial consultation . I was operated on a few months later. I know this is 15 years older than you are now but !!!!!! It was such a shock !! I was alone with a 10 year old daughter.

I dreaded the operation but as the surgeon told me” you are on a roller coaster, nothing you can do and we will look after you!”

I had counselling in hospital before the op. I was in Old Papworth for 5 days , then sent home . Once they realised Flecanide and Amioderone sent me insane , ( we all react differently to medication) I began to feel human . Sitting up from lying down is hard !!

Looking at the scar for the first time is really Hideous , we are all vain!! But !!!!my scar was so good it is hardly visible . It took me six weeks to feel well and , drive!!

So , I know it is terrifying !! But in 6 werks you will feel like YOU and not a heart patient !! Feel free to contact me and, trust your cardiac team !! XxxxxL

[aromariot in reply to Luludean]

Thanks Luludean for sharing your experience, I really appreciate it. I can't imagine what it must've been like going through that as a single parent

[Luludean in reply to aromariot]

Let me know how you get on !!!

All will be well !! X

[niffum32]

Hi I was 40 years old when I had my mitral valve replaced I am now 66 taken Warfarin after having a St Jude valve, these days it is pretty consistent but I never leave it longer than 3 weeks going to have it checked at the start you will probably find it up and down until you get used to what foods effect it I find as long as I am consistent in eating things which may effect INR e.g. greens broccoli cabbage etc it is pretty stable I have still carried on eating them. Like you I do not drink or smoke. In 2015 I had an Aortic valve replacement so I have two metal valves. I am happy with my quality of life I work full time at the moment , carried on going to the gym after re-hab, you will realize what your limits are and adjust, stay positive and you will be fine!! All the best

[aromariot in reply to niffum32]

thanks niffum32, that’s really reassuring!