MV repair (OHS) – six months on – tips and thoughts……..

[aviation1]

Thought I would share my story to help those new to the site…..

I had a successful MV repair six months ago over at Oxford (excellent surgeon) – my valve had been prolapsed since childhood but only started seriously leaking last year (NB. I had 2 x covid vaccinations).

Two days in ICU then five days on the cardio ward before going home. You will wake up in ICU very sleepy, in pain and probably slightly delirious along with having several cannulas from the wrists and neck, also drains from your chest and a heart monitor cable.

First tip is whatever you do take the meds and the painkillers as often as required – your heart and rib cage are very agitated and will take some time to settle down.

Don’t forget you have been cut open and the rib cage forced apart so as a consequence all your muscles, tendons and ligaments will hurt for weeks, especially in your back.

You will take a few steps day 2 and be forcing small portions of food down yourself (the anaesthetic can cause nausea) – it gets better quickly. By day 4 or 5 the drains come out and the pain is manageable and you should be walking the ward albeit slowly and your appetite will return. Use the chest cushion to hold against your chest when you cough or sneeze and take the little cushion home with you.

Initial Rehab

Ask to join the local NHS rehab programme – unfortunately in my NHS area (Oxford and Gloucester/Cheltenham) it was only for more “serious heart patients” a bypass or worse! (I found this unbelievable) – I had to create my own programme. The BHF also offers great rehab videos on this site.

Rehab is a slow, ponderous process and you have to be really really patient with yourself. The best thing I was told is that you have to travel your own journey because your body is unique to you and do not compare to anybody else or anything you read in the pamphlets.

I started very gentle walking for up to one mile daily at a time, slowly building my speed, but not walking serious inclines.

I bought a smart watch to help monitor my body and also a blood pressure machine ….. the results help you, your GP and your cardiologist when required (with an apple watch for example the ECG is very accurate and can be emailed) – but don’t become fixated or paranoid about readings as they will vary quite dramatically in the early days.

Also note that a thin sporty person like myself (11.5 stone and 6 foot one) will feel and sense an awful lot more within the chest cavity (heart and lungs) compared to a heavier person who will have more fat around their organs.

After 3 months I could happily walk 6 miles at pace (in 2 sets of 3m)

Voice – maybe peculiar to me but when I am feeling really tired or having an off day, my voice also tends to become weak and a little strained (2 x cardiologists did not have an explanation for this).

Medication

I left hospital with:

5mg Bisoprolol

40mg Astvorstation

Warfarin

Aspirin .75mg

Omazerapole (to protect the stomach from the the aspirin)

I was also self-injecting (blood thinner) for the first 10 days

Medication is really difficult to advise on as you should not self-medicate but if the meds are giving you side effects then speak to your GP/Cardiologist and change them!! Also change when you take them, try evenings as opposed to mornings for example.

Bisoprolol - gave me terrible nausea (even on 1.25mg after 4 months) so I am now on 40mg Atenolol – nausea all but disappeared

Warfarin – my INR was wildly up and down all the time – so I pushed for and got Rivaroxaban 20mg – no checks required

Also, some foods do not sit well with some meds so check (grapefruit, banana etc.) - without exception alcohol in modicum and try to abstain as long as you can.

So, after 6 Months I am on Atenolol 25mg, Rivaroxaban 20mg and Atorvastatin 10mg and hope to be free of all meds soon.

Rib Cage

It does take at least 12 weeks to heal – try and lie on your back to sleep for as long as possible, I suggest at least the first 4 weeks – if you do roll on to a side do not cramp up the rib cage – keep it open with a cushion between your knees and the upper hand/arm on top or behind your abdomen. Also when standing up try to use your legs as much as possible opposed to leverage with your arms.

If you feel/hear the odd click when making certain movements this is normal but really by about week 14 it should be fully healed (mine was).

Consultants reviews

List all your questions no matter how trivial, and if possible insist on (if not offered) an echocardiogram along with the standard ECG etc. it is as much about your piece of mind!

GP

I was lucky that at my local surgery there was a Dr with heart expertise – so it was very reassuring during the first few weeks to discuss my progress and ask any questions - if I had a setback, which I did a couple of times, I was on the phone and into the surgery for an ECG and a check – they are also tuned into your meds.

Ongoing Rehab

After 6 months I can walk at pace up to 6m at a time, I have just tried a short knock at tennis and I am swimming lengths and using my own body weight to exercise with my own monitored programme (no gym as yet).

Again it’s slowly slowly – the only setbacks I have had are when I have tried to do too much, such as too fast up a large long incline. Try to initially keep your pulse up to 120 BPM only going higher for short periods until you feel fitter.

You may find extreme weather effects you, the full/new moon, climate change if you travel abroad.

The problem I have is that my body only reacts to excessive exercise during the course of the next day, on the actual day it copes happily so no obvious early warnings.

Mind games

It is mentally tough – I am a very positive person by nature and throughout life have always been able to compartmentalise stress, worry and especially anxiety……but this took me to places I’d never been before. I was and still am more emotional than pre-op but you have to remember that once you are signed off and the Op’ was successful – it is onwards and upwards.

The heart is a muscle and the chambers/valves etc. have spent months/years adapting to an abnormal bloodflow – so once repaired it needs months to evolve and adjust to a normal flow and this doesn’t happen overnight I’m afraid.

Through this forum it appears that 12 months is the average to return to your normal self.

If anyone has any questions or comments – all welcome, please ping them through.

I wish everyone all the best and thank everyone on this forum – it helps immensely.

NB. There is also a Mitral Valve Repair Facebook Site (with a USA bias but still helpful)

Rgds Stuart.

[Yumz199725]

This is such helpful information thanks so much for sharing it with us x ❤️. I'm still preop so haven't had valve replacement surgery yet. Hope your recovering well!

[aviation1 in reply to Yumz199725]

Thanks - mine was luckily a repair - have you received a date as yet?

[Yumz199725 in reply to aviation1]

Yeah that's good, hopefully you won't need it replaced. I don't have a date yet it's just watch and wait with echos every year x

[Traveldreams]

You’ve had similar experiences to me although they didn’t get me out until day 6 and after 5 months I still haven’t been granted a GP appointment.

My main ongoing issue is with my left shoulder. Thanks for the feedback.

[aviation1 in reply to Traveldreams]

Yes I have sometimes a left shoulder (dull pain) issue - but it is only muscular as I regain my muscle mass - try different postures and stretching exercises

[Traveldreams in reply to aviation1]

Yes, I’ve been doing the exercises suggested by cardio rehab. Will be looking for a physio if no improvement by six months. Very common I know.

[Billett]

That is a fantastic peice it covers everything and on my experiences i could of wrote it different medications and Ive got some nerve damage where they harvested my arteries and only 6 months down the line but great reading this article

[scottypg]

This is brilliant advice and more importantly, a great story - so glad you’re well on the road to recovery. I had a CABG on 30th March and what you’ve shared is so familiar (apart from the 6’1” and 11.5 stone part🙂). I would reiterate your point that you must speak to your GP if you feel something is not right. I’ve had to have a couple of courses of antibiotics due the donor scar on my lower leg turning a bit weird

[aviation1 in reply to scottypg]

Onwards and upwards is the only way!

[Warm-heart]

That's fantastically helpful, thank you! I am sure this will help others too. Were you told how long a repair would last before requiring further operation - either repeat repair or valve replacement?

[aviation1 in reply to Warm-heart]

All things being equal 15 to 20 years (maybe longer) which takes me well into my 80's and by then I am hoping that the level/quality of the UK's key hole surgery approaches that of say Austria (one of the worlds best clinic is there) - or some States in the UK

[Warm-heart in reply to aviation1]

Wow, that is good, that sounds longer than a tissue valve replacement? I was told 10 years for the latter, and another site member said 5 yrs for repair. My repair did not last long sadly, and is being redone soon, but mine failed most likely for reasons that are not usual.

[JoTsu]

Thank you so much. So helpful and reassuring.

[Trilbylover47]

Thank you, this is such an honest and helpful post, I am due to go in on 27th of this month for MV and Tricuspid valve repair OHS ..... Trying to remain as positive as I can, but other side of op is of course the unknown until you are there. I am 77 trying to get as fit and ready as I can be, but anticipate a long haul. As long as no serious complications I will be grateful. Your post is very informative and helpful I will be very aware of all the different things that crop up.

How did you manage to remain and keep positive throughout the down times? is it just a question of slowly working through them and having patience? I imagine the mental health strength is going to be key and one of my concerns.

I am interested in the rehab program, but not sure I will be able to travel anywhere to receive it, so may have to resort to online.

I wish you well and hope you continue to improve and get back to full fitness.

[aviation1 in reply to Trilbylover47]

Yes the mental side is tough but hang in there - and patience is a virtue. The BHF rehab videos are great but initially take everything slowly until your heart is less agitated. Listen to your body!

[Trilbylover47 in reply to aviation1]

Thank you for your reply, I'll remember what you said. All the best to you.