Mitral Valve repair

[Samuel111]

Hello, I write to connect to people who have had surgery taken the form of a mitral valve repair. I have been diagnosed with a severe mitral regurgitation with mitral valve prolapse, mild left ventricular systolic dysfunction (I think because the heart is working too hard because of the prolapse) as well as paroxysmal atrial fibrillation. I am 55 years old.

I am understanding that the surgeon will use the traditional heart surgery technique as opposed to minimal access surgery.

I have read a little about the risks and what happens during the operation. I am left feeling very scared about it all to the point of thinking I can't go ahead (anxious thoughts) , which , I think, would be the wrong decision as there are, of course, risks not to do the operation.

I am wondering if anyone would not mind sharing their experiences of living with heart valve disease and heart surgery to repair / replace the valve.

Thank you very much in anticipation for your generosity in sharing.

[Rhinos67]

Hello, I had my Aortic Valve replaced 21 months ago. The thought of OHS is so daunting, but the surgeons are amazing and they do them every day.Recovery took several months, but now my life is more or less back to normal.

If you are on Facebook then maybe consider joining UK Aortic and Heart Defects Pre and Post surgery group. So much common shared experiences in 1 group and very reassuring

Joanne

[Samuel111 in reply to Rhinos67]

Thanks Joanne, very kind of you to have replied. I am glad you are feeling much better.

[Lindor23 in reply to Rhinos67]

Definitely recommend this Facebook group too, nothing is to silly to ask, as here lovely group of people. I am 9 weeks post surgery today, diagnosed with exactly the same problems as you

[Samuel111 in reply to Lindor23]

Thanks Lindor. I have joined the group. I wish you a good recovery.

[_HelloWorld_]

Hi Sam - I had Mitral Valve repair surgery (traditional surgical methods) about 10 days ago - so fire away with your questions! I think my main message would be to be aware that the first 24-48 hours is inevitably going to be pretty bad - but hold on to the thought that you'll get through it and start to fell MUCH better after that. Good luck!

[Samuel111 in reply to _HelloWorld_]

Hi, thank you for your kind reply. I will hold on to the thought that I will get through it. I wish you a good recovery. 10 days ago is not long, I hope you are doing fine. What helped you prepare for surgery and what would you say is most helpful now almost two weeks after surgery?

[_HelloWorld_ in reply to Samuel111]

Hi Sam, I didn't do anything special to prepare for surgery. IMO - It'd be a good idea to try and minimise your chances of picking up a cough/cold for reasons below. Something I would have preferred to be more aware of was how Iwould be affected by the painkillers. I think I was on IV diamorphine for 2/3 days after surgery. For me at least, this was really unpleasant as I couldn't really tell the difference between dreams and reality and was having visual hallucinations. It wasn't pleasant and knowing to expect this would have helped a bit - although I don't think everyone is affected in this way. After surgery make sure you have the famous heart pillow or a tightly rolled up towel to push against your chest when you cough or sneeze - that really hurts I'm afraid. It's been about 3 weeks now for me and I'm feeling OK now - wound still hurts a bit but I'm sleeping well. Regaining strength and managing some good long walks. FIngers crossed for you.

[Lovefrance]

Hi Samuel. I had mitral valve repair 15 years ago at Papworth in Cambridge.Ohs sounds pretty scary but to the fantastic surgeons it’s an everyday procedure. I was in hospital for about a week. Up from bed the next day and walking around. No pain as meds take care of this. Of course you will be weak.your body has experienced shock but gradually building up your strength and resting will get you back to normal and just think, you will be so much much better after this. Don’t opt out of this. Have faith in your surgeon and you will be fine.

[Samuel111 in reply to Lovefrance]

Hi, many thanks for your supportive and positive message. It does help to hear from people who have had the procedure. It is encouraging. I am glad you are feeling much better. Have a good day.

[Football-Mum]

Hi Samuel

I had a mechanical aortic valve replacement 12 months ago. I totally understand your anxiety, I felt the same way but knowing that not doing anything was a far greater risk. Please be reassured that my experience was wholly positive. The medics that treated and looked after me were amazing every step of the way and yes for me there were some little bumps in the road but I recovered well and was home 7 days after the operation. I would totally echo the point that the first couple of days were rough but instead of focusing on how you feel at that time compared to normal I'd always look at the improvement I'd made on the day before. And it was exponential. Is there anything specifically you're worried about or would like to know about? I'm happy to help further if needed. Wishing you all the best for your surgery and recovery.

[Samuel111 in reply to Football-Mum]

Thank you so much for your lovely message. I am glad you are now feeling healthy. It looks like you have recovered well. It is encouraging. What helped you the most during the recovery stage? I will absolutely remember your idea to focus on the improvement made on the day before. I think it is a great way to look at it. I suppose I feel overly anxious about this major operation and associated risks but reading people's messages feel supportive. Many thanks again.

[Football-Mum in reply to Samuel111]

Happy to help Samuel. I had a great support network around me and if you’re lucky enough to have the same don’t let them do everything for you. Build every day on the day before. I got out in the fresh air and walked every day (apart from when we had snow in March!). Don’t be disheartened if you have a setback - always focus on how far you’ve come. Even now I’m not stable on Warfarin but I have faith I’ll get there and each week I’m learning more 😊

[Larneybuds]

Good morning....I had severe mitral and tricuspid valve regurgitation and had repair rather than replacement. It's only natural to be worried about such a big operation and initially I was the same but because of a nine month wait due to cancellations, my condition worsened so I was more than pleased to have the operation and once in hospital was very calm about it. You will be in the best of hands and though scary for you, this is a fairly routine operation for the surgeon who will be an expert in valve repair. Pain management in hospital for me was excellent but to be honest, I didn't find the pain as bad as I had imagined it would be but everyone is different. It's a big operation so recovery isn't a walk in the park but a lot of it is down to you and how you deal with it. Advice to someone yesterday about OHS is to listen with regard to how important the combination of both exercise and rest is. Chest and breathing exercises are really important...I started doing them a while before my op...incorporate coughing exercises too. Walking too is a must ...with distance being built up gradually. There will be good days with a few not so good thrown in...perfectly normal. Recovery isn't always text book....it's very individual and though there are guidelines and suggestions you will have your own journey. Don't be stubborn about assistance from others...there will be days when you need it but also be determined and focussed . I am sure you will find the operation to be very beneficial and after a few weeks will be very proud of yourself. All the best with everything. Take care x

[Samuel111 in reply to Larneybuds]

Thank you so much for your very encouraging message. I will read your balanced and helpful thoughts over and over again! I am finding it helpful, thank you again so much. I am glad you have recovered well. I am sure your ways of looking at the situation helped. I must try to get into a similar place in my head. Continue to take care of yourself, with gratitude, Sam

[Larneybuds in reply to Samuel111]

Hi Sam...I see you have had a few more encouraging replies which is great. If you want to PM me any time please feel free to do so. I think anything to do with the heart is daunting and OHS seems massive but I hope it makes you feel less fearful reading some of your replies. You will be fine. All the best x

[Eewee]

dear Sam, well you’ve pretty well described my condition at this time last year. The only difference is that my MV failure had caused severe aortic regurgitation and tricuspid regurgitation. My LV was enlarged and I had AFib getting much more frequent. By the time of my surgery it was permanent AFib. Well needless to say I was lined up for surgery and I have to tell you that my surgeon, when he explained the risks to me said that if I didn’t have it my life was going to be very short. I am 61, not much older really. So I went into surgery for a three valve repair. It was, as I understand, a big job taking in the region of 5 hours, 2 1/2 hours on the pump. The surgeon also clipped the atrial appendage which greatly reduces the probability of stroke from AFib and repaired my Mitral valve and replaced my aortic valve with a tissue valve and put a band around my tricuspid. I have to say that I was very nervous about this too but considering the alternative… anyway once the surgery was complete, I spent a week in hospital. The effect of a severely regurgitating mitral valve is that it makes your ventricle look ok because it’s pumping into a lower resistance system, your mitral is leaking, but once repaired that changes and it suddenly has to pump into a higher pressure system which it’s not used to. So don’t be too worried about that as your Ef will be down in all likelihood. This can be restored over the coming months with meds. My EF was 20% and it’s now 50%. Please don’t delay your surgery it will give you back your life. Be gentle with yourself after surgery as your sternum has to heal well. Have confidence, this surgery is well established and although major has good outcomes. Please feel free to contact me if you need any further info on my experience. Good luck.

[Samuel111 in reply to Eewee]

Hello Eewee, thank you so much for having taken the time to reply. I am grateful. Thank you for what you shared and explained as well as your gentle encouragements. I am glad to read you are feeling good and positive about the treatment received. With much appreciation, take care.

[maggie80]

Hello, I had my Aortic Valve replaced and a quadruple bypass Nov'21. It took about 12 months to feel like myself. You'll be in good hands. Don't worry. The sooner it's done the better. Take care.

[Samuel111 in reply to maggie80]

Thanks Maggie for your encouraging words. I am glad you are now feeling like yourself again. Take care too.

[maggie80 in reply to Samuel111]

Hi, think positive. You'll be fine. 🙂

[Chriscwmpen]

Hi Samuel. I had exactly the same diagnosis as you and the same operation you’ll be having. That was 3 years ago and I was age 45. It was a complete shock to learn I had the condition and I can really relate to how you’re feeling now.

From my own experience this waiting stage was by far the worst part. As others have said, our operations are routine for the surgeons involved, as is the aftercare from all the other doctors and nurses involved. You’re in safe hands.

I felt like I was about 75% recovered after 2 months, 100% recovered after a year. Earlier this year I took part in a 75 mile bike race!

Good luck with everything and you’ll find plenty of support on here. Give it 6 months or so and you’ll be writing messages of support to others.

All the best

Chris.

[Samuel111 in reply to Chriscwmpen]

Hi Chris, thank you so much for your thoughtful and encouraging reply, it does make a difference to hear people's experiences. A 75 mile bike race...wow that is impressive! Really worth holding on to that possibility. And, well done...what an achievement! Thanks again, wishing you to continue to enjoy good health.

[Chriscwmpen]

Well, I say race... the people at the front were racing, me not so much 😂. I mentioned it purely to show that there is lots to look forward to post surgery and that it's worth going through the current unpleasantness to come out the other side.