So 6 weeks ago ago I had what seemed like a low level flue. After 2 weeks of not improving I went to the GP, and after some investigation he realised that my heart murmer had got worse, so combined with my other symptoms, he arranged for me to go straight to Basingstoke Hospital for a Treponin blood test, and basically I never left. Although I already have a pacemaker, I was found to not only have Infective Endocarditis, but my Mitral valve had pretty much given up the ghost as some of the chords have snapped.
Yesterday I was transferred to the Royal Brompton and tomorrow morning I am having Open Heart Surgery to hopefully repair (but if not replace) the Mitral valve. I am 64 and it was a tough decision whether to go with a synthetic or tissue valve but in the end I decided that worse case I would go with tissue. The thought of having to mess around warfarin for the rest of my life just wasn't appealing, on top of which I have a fairly active lifestyle and I don't want to have to worry about bleeds. If the tissue valve lasts between 7-12 years I will be in my 70's and I'm pretty sure technology will have moved on dramatically by then anyway.
I can't say I'm not a not apprehensive, but the alternative is, well death, so not really an alternative at all. I plan to post updates throughout the process so that others can hopefully gain some insight into what's involved. Not necessarily medically, but from a human point of view!
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Bobkins99
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Very best wishes for you tomorrow.Surgeons like to have a handful of years to prove which valves are satisfactory. I think 7to 12 years is the very worst scenario. With current aortic valves you can have a later TAVi, whereas my aortic valve, May 2020 that wasn’t an option. Things do move fast in the medical world. I decided to let the surgeons decide, as they were the ones at the coal face.
I was just down the road at the Cromwell and it was a very positive experience. I live in deepest rural Essex, so rather a long journey. But Basingstoke is on the right side of London for you.
Four months post op I felt better than I have done in years.
What a revelation.
I decided to pay £700 to have a private ambulance to take me home. That was a good thing. Maybe you have friends or family to collect you, but I do not.
Just think, when you come round the heatwave will have given in to more pleasant weather.
My op was, with my permission, observed by students. It was nice when they came to see me post op.
Good news if the nhs are providing an ambulance.. no way could I have been moved for a few days. I could have got home by taxi one week on, but the nurses urged me to travel accompanied. The private ambulance came with a medic.
Hi Bobkins, Best wishes for tomorrow, I hope it all goes well for you. You're obviously at the stage where you just let the Medical Team get on with it. Endo is horrendous, in my case I had two Mech Valves which became infected, and required further surgery, the Aortic was replaced but, they managed to repair the Mitral. The choice between Tissue and Mechanical is difficult, I've had both, and can fully understand your reasoning on going for a Tissue if it comes to that. For what it's worth, my Tissue AV was fitted in 1994 and wasn't replaced until 2013, so I got 19 years out of it.
Thanks for sharing your story. I will think of you tomorrow morning. I hope all goes well. I would like to hear how you get on. It's amazing what they can do these days.
Bob. All the very best on your procedure. Many have traveled this road and all are individuals with their own stories. Hopefully your journey is moth and trouble free. Good luck and stay positive
That's almost exactly the same that happened to me but I'd been ill for a couple of months before the Endo was spotted finally after GP sent me straight to A nd E after my last visit. Its a worrying time but its an operation that is done all the time now. I was back walking the smaller hills after 8 weeks and to be honest have never looked back. Feeling fitter and heathier than I have in ages. I went for the mechanical and luckily don't have much trouble with Warfarin now. It just took a while for everything to settle down. Good luck for tomorrow.
I'm 60 now but was 58 when I had my valve replaced. The ticking is a weird thing to be honest. I went through a phase when I could almost feel it as well as hear it when I was lying in bed. Then it went away totally for a while which I found even more unnerving. I'm quite happy now hearing the steady ticking when its quiet I treat it as reassuring almost. If it bothers me at night I just turn over and it goes away🙂. I don't think at the time I felt I had a decision to make as it was always mechanical in my mind. Both have plus and minus. I'm sure as you say technology will have moved on when or if your valve needs replacing again.
Just to add I went mechanical for longevity as you said.
I can understand that. The Warfarin was a problem for the first 9 months and at times I wished I'd gone for a tissue valve. Constantly changing dose and going for checks at least once a week but then it settled as I got back to health and my eating/drinking got back to normal. Apart from cutting back on alcohol a little bit (I was never a big drinker) and making my diet a little more heart friendly I don't feel that things have changed much. I don't really think about it just try to keep things constant. The hospital changed the Warfarin to suit my diet not the other way around. The first time I cut myself badly after starting Warfarin I was really worried but it doesn't seem much different to before. I'm sure bigger accidents would be more concerning. I have stopped being too adventurous on my mountain bike and knocked skiing on the head though. Hope it all goes well for you tomorrow. Everyone has different ideas on which way to go. I'm sure you have made the most informed choice for yourself. Let us know how you are getting on.
👍 Then it sounds like the right choice for you. And hopefully you will be back on the bike in a few months with a new valve making life easier. They told me to stay off mine for a while until my sternum healed in case I fell off and landed with my hands down. Ouch! I was never very good at skiiing so probably giving it up was for the best. Mountain biking is still my passion.
Well done to you on your positivity. Its a good start and I hope that everything pans out as expected. Please read up on everything regarding post mitral valve surgery and dont push yourself too hard.
All the best for tomorrow. I have a moderately leaky aortic valve which they only found a few months ago and will need an echo annually to check if it’s progressed. Have been told if it does, will need the same surgery you’re having to replace the aortic valve.
I’m a 45yr old female who felt petrified of the idea of open heart surgery. So I see where you are today as being somewhere I’m likely to be at some point down the line.
You sound so calm!
It’s beyond incredible what cardiologists are able to do nowadays and I’m sure you’re in very wonderful hands.
All the very best for tomorrow. Will look out for updates, Sal 🥰🥰🥰
A very close friend of mine had just this op, with the same decision, about 4 years ago. He came through it well and recovered wonderfully. He was older than you.Best wishes to you; you’ll do great.
Good luck to you. The same venue as my op a couple of years ago. If my experience is anything to go by, a fantastic team through all the different stages you go through. Luckily my valve could be repaired which was a great outcome for me, and wow what a difference since.
I am going in today for mitral valve op tomorrow after the original op being cancelled, I have had a wait of 8 months for this new date. Its been a rollercoaster of emotions but there is no other option and I don't want to think of the consequences of not having it done. I am 66 and it's mechanical valve for me but I'm not bothered about the warfarin as long as I feel better than I do now and I get some quality of life back as it has all left me quite debilitated. I am sending you lots of thought and good luck wishes and I hope that the support and messages from people on the forum give you the same hope for a successful outcome as myself.....then we can help and support others too. Looking forward to your update and I hope you have a speedy recovery. Be positive and hopeful....all the best....xx
Hello Bobkins99 - you’re in one of the best places and with a wonderful team so you will be well looked after. That said it is scary facing surgery especially a major one like this and it must have been a huge shock. Will be thinking of you - am sure everything will go well. Let us know how you get on when you’re able and up to it.
All the best.My son, who is 28, had surgery in May to repair the mitral valve. They also repaired a hole in the heart which was a shock as it was news to us that he had that problem!He is doing well & looking forward to going back to work in a month's time.
What a great post with lots of encouraging replies. You and poster Larneybuds will be anxious… perfectly normal. With the amazing work these cardiac teams can do nowadays you’ll be in very safe hands and we all look forward to hearing about your recovery 💖
Gosh what a lot to take in/ on for you. No wonder you have some apprehension. I think I'd be spinning!Sounds like you are in the right place now.Wishing you all the best for the procedure and for a good recovery.
Morning! I had my aortic valve (tissue) replaced at the Royal Brompton 3 years ago at 67. You are in a fantastic place for this operation where you will be impressed by the standard of care you will be getting. Highly skilled doctors and nurses who are going to take very great care of you. I can’t tell you not to worry because this is a big operation but by taking your progress day by day you feel one step closer to getting back to your old self. You are very ‘lucky’ (😉) to be there! Keep us all posted. Sue 🙏
You are in good hands had my aortic valve replaced in the Brompton in December and I’m feeling incredible now . The staff and surgeons are brilliant but do what they tell you - it aids recovery. I went tissue valve which should last about 20 years they are new so they don’t actually know the longevity. Good luck you are in the very finest hands , I say thanks for their skills everyday when I’m living my best life and skipping along !!
hi. Faced with the decision of mechanical or tissue, I’m 50 now. Leaning towards tissue which would put me at 70 ish needing it swopped out! Did you have that conversation with them?
hi - I did - and I was actually guided by my neighbour whose 96 and who had her valve replaced in her 60s with a tissue
The reason they can’t exactly say how long they will last is because they are still going !
I couldn’t have warfrin as I’m allergic to aspirin so the choice was predetermined but I’m going to do my valve donor proud and keep it going and do all the right things to ensure it keeps working !
You will be on the way to theatre today. Fingers crossed and good luck. Heart surgery is so much better these days and you are in the right place. Let us know how you get on.
Wishing you all the best Bob. I've been on a very similar journey myself (GP visit for a chesty cough following 'flu, unexpectedly turning into something way more serious!) and have come out feeling fitter and stronger. I had ruptured chords on my mitral valve too and had to make the same 'hobson's choice' of mechanical vs tissue. I opted for tissue also due to having an active lifestyle.
The day before the op was the worst time for me. Onwards and upwards from here!
Thank you for your very informative post. Thinking of you as you undergo the op and wishing you a good and swift recuperation. Please do let us know , when you feel up to it , how you got on and how you progress.
Good luck with the Op and hope it goes well. I am slightly further along on a similar journey and 8.5 weeks post operative for a mitral valve repair following a bout of infective endocarditis.
I was lucky enough to be able to have a repair and not a replacement but my thoughts were if it came to replacement to go down the tissue route. The reasons were similar to yours of wanting to stay as active as possible(avoid warfarin due to potential for internal bleeding) plus technology is improving all the time.
Look forward to seeing your updates and see how they compare.
Hi. I had endocarditis on my original valve replacement and then had it done again. I had 3 months worth of antibiotics which, along with the second surgery, cleared it. It was a long slog but the infection is gone. 6 months later I’m walking every day, doing cardiac rehab and planning a holiday. I’m sure that you will be absolutely fine, these surgeons are amazing people and you’re in very safe hands. I’m hoping that you are feeling ok after your op and that you have a quick recovery. Please let us know how you are getting on when you can. X
Yes. I took much the same view of triple bypass surgery. Now let's see. Have the operation or probably die soon. Hmmm. Tricky one. Plumped for the surgery in the end. 😇
Well the surgery is over. Luckily it was a repair rather then a replacement so the whole mechanical v tissue wasn't an issue. I'm not going to say it's been a walk in the park but the treatment and aftercare at the Royal Brompton has been exemplary. I still have 2 more weeks of IV benzyl Penicillin to go for the Endocarditis bugs but luckily there was no evidence of them having attached themselves to the valve. I'm pretty sure I Will be shipped back to Basingstoke hospital for this as the Brompton is definitely an efficient conveyor belt of get them done and out the door.
Hi. I’m so pleased that it went well for you. Hopefully you’ll be able to go home soon. It’s good news that they were able to do a repair. Hope your recovery goes well. 😊.
I was wondering how you went on. Must have missed this post. Glad it went okay for you. Just kick the Endo into touch now and you will be back to normal again. I was 3 weeks in hospital after op to finish antibiotics. Take care.
Yes, I'm back in Basingstoke hospital completing the 6 week IV antibiotics. I'm in a side room because apparently there is a risk of returning patients having CPE which is prevalent in large metropolitan hospitals. Basingstoke has a strict isolation policy to combat introduction of this superbug. Unfortunately my heart is now inefficient after working against the dodgy valve, so I am on a regime of many tablets. It was beating at 150+ whenever I did any slight exercise to begin with, but I have now been medicated to the hilt and the opposite is true, in that my BP is only 90/60. I suspect there will be more tinkering, but as far as I'm concerned the heart is a muscle like any other, and long term excericise and healthy lifestyle should go a long way toward reducing the huge pill load
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