I was previously a very fit and active person and i'm struggling to come to terms with life following aortic valve replacement and aortic root graft.
All the information online and in the booklets seems to be aimed at older people and doesn't seem to apply to me.
I've got so many questions. I'd be really interested to talk with anyone in their 30s or younger who has gone through this. Equally, i'd be happy to pass on any info/help that I can to anyone else also who might be struggling.
Hi Rob I was 39 when I had my AVR in December 2018, it was such a shock and couldn't believe it. Any questions feel free to message me
hi rob ive just had it done only 51 quite a shock to me too.
It has been a massive shock. How are you guys getting on with life now? I've not started doing any of the gym/fitness/running/rock climbing that I used to do. Did you get back to normal with your activities? Also, I'm on warfarin for life now. I've never been a big drinker but used to love 2-3 beers on a weekend. Do you have any advice around alcohol? Thanks for getting in touch. I appreciate it. 
Hey Rob111222. I'm 51 (too old?) and had a tissue AVR in December? Happy to share/help if I can? It is a big shock and takes some adjusting to I agree but personally am feeling better and healthier than I was before? But as I say happy to help if I can. Nic x
Hey Nic, thanks for getting in touch. I don't think there's such a thing as 'too old' mate 
December seems a long time ago but time seems to pass slower when recovering from such a huge operation. How're you feeling now? Have you started doing any exercise or normal activities yet? Rob.
Thanks Rob. Yes I did the 10-week cardiac rehab thing, which I found really useful both in terms of kickstarting activity but also giving me confidence in being able to "work" the new valve a bit. I wouldn't say I'm exactly fit (still a relatively sedentary fiftysomething) but probably fitter than I was before. Walk 30-40 minutes most days (did 20,000 steps the other weekend!), swim 30-40 lengths most weekends and have lost about a stone in weight. So generally yes feeling better than before - and heart function definitely feels better. So how soon post-op are you? I found first 6-8 weeks I was in a fog of tiredness and it did take time to build my stamina back up - you do need to be patient -but things did gradually get better. Started easing back into work tail-end of January (I'm self-employed so didn't have much choice) and just took it from there. It's also worth recognising there is a huge mental and emotional side to this whole process, almost as big as the physical in my view, so don't beat yourself if you're feeling scared, crap, anxious or down. It's totally normal. Hope that helps at least a bit. Nic x
Agree totally with Nic25, the mental battle can be as hard as the physical one but I found the cardiac rehab fantastic for both physical and mental wellbeing.
I'm on Warfarin for life too and was told only one pint a day if any but have spoken to quite a few people who are on Warfarin who enjoy a regular tipple. I had a few pints the other week and everything is fine although I felt guilty for doing it!! I've actually a post on here asking people about alcohol and warfarin, I only posted it yesterday and some good reading in the replies.
Time is a big thing but you will notice the difference in your recovery each week, at he start I used to use the lampposts as a guide when I came out of hospital gradually increasing the amount, I.e walked 5 lampposts then turned and walked back home then 6, 7, etc
Hope this helps
Hey thanks guys, I really appreciate your advice/help. I'm about 2.5 months after the op. I've got my main follow-up in 3 weeks and I'm hoping I can start going for runs and getting in the gym. Really enjoy swimming so hoping to get back into that. I'll check out the post on alcohol. Cheers guys.
Hello i had the same op last year and I was 31 if I can help in any way just ask. I have struggled with recovery
Hi Rob, slightly older I was 45 when I had mine done 7 years, I guess for me getting back to 'normal' was easy as my normal was always slightly different to most ( I lived with restrictions for the whole of my 45 years). I've never been particularly active or fit, but, I do feel that I have a much better fitness than before, I do an active physical job, and keep active by walking and training my dogs, I was back to work at about 14/16 weeks, took it easy to start with, made sure I didn't do any heavy lifting.
Can definitely recommend the rehab program, and as long as your cardiology team agree, I don't see why you can't start to get your fitness back up, slow and steady is the answer.
Like some above I'm on warfarin for life, I guess again I've been lucky I've had no real issues with warfarin, as part of my job I'm prone to getting cuts etc, they bleed, but no different to anyone else that's fine the same thing X I drink, generally what I want if I want X I eat pretty much what I want/like.
What I'm trying to say is don't let what you've had done control your life
You need to get out there and start living X
Good luck with your continuing recovery x
Hi All I hope this helps in the long term my Dad had his valve fitted in 1983 it was pioneering then, he came under the research team in Cardiff
He has had it for over 30 years, with the warfarin it used to be blood tests at the hospital regularly for a long time but then he discovered there had been designed a thumb prick machine similar to the diabetes design, he then started testing at home, the GP surgery followed suit and bought one for the Practise.
At the beginning there were difficult days, but he followed the advise given I.e food, exercise and yes alcohol, and was soon back to his new normal.
Best of days ☀️🥑🍎🍷🎾 enjoy the sun today if you have it 🤗
Some really good advice guys thank you. I think the message is loud and clear. Get out and get on with life. I wouldn't say I ever took life for granted but this has been a massive wake up call to make the most of it. Cheers! Rob
Hi Rob had mine done when I was 48, not affected my life style at all do all the things I used to do. Mountain biking , Skiing not a problem when I see the scar I see it as the mark of a battle I have won. I am now 63 diagnosed with heart failure November, had CRT-D implant 20th May will be back on mike mountain bike in two weeks and skiing next Jan.
That's really good to hear. I love skiing. Can't wait to get back on the snow. Sounds like you've got the right drive.
Hi All, some useful info here. I am 50 and waiting to have this done. Not sure what's worse the wait or the slowing down in life.
Wishing you all the best with that surgery mate.
It’s the waiting - the fear ! I personally felt a weight lifted when I woke up from surgery - I’m taking my time recovering as I don’t want to over do it So build slowly and monitor how it feels - extreme sports l would say not recommended but if your willing to take the risk then it’s like continuing to smoke - drinking more when effecting your warfarin levels & unhealthy eating - we all have choices
You’ll be absolutely fine it’s a very routine op these days - easy for them to say lol xx Best wishes x
Hi, I am 2years post op from avr and root replacement. There are a couple of really good facebook groups heart valve surgery support group and mine ticks are both really good and have members of all ages and all nationalities. Def worth joining, ❤️
Thanks Lisa, I'll check those out thank you
Hey Rob.. didn’t have what you had, i had several heart attack’s and subsequent stents at 47 and my mental state changes daily .. today isn’t a good day so I can feel for us it totally screws with your head sometimes
Hi I've had the same op in my early 50s understand completely what you mean I'm now very unfit and put on 3 stone in weight ,finaly beginning to get better days ,still waiting for help with getting back to fitness ,it must be even harder for you younger again I've had lots of issues with my warfarin levels, how are yours doing?
Hello, my warfarin levels have started to become more consistent. I'm hoping I can start having a few beers soon which I think will impact on my INR. It's all a lot to come to terms with. In my area the NHS don't offer cardio rehab sessions for AVR so my fitness has got quite poor. I've not put on any weight but I've lost a lot of muscle and starting to get a big belly!! I could really do with some guidance on getting back to running and the gym.
I’d start walking - building that up to a fast pace gradual- get your self a fit bit & slowly watch your heart rate - but my cardio class told me to do warm up before 15 min & m 10min after every time any type of exercise to prepare the arteries safely - hope this helps
just take your time so many people
(particularly men sorry 😐) over do it ! Xx
Hi Rob
My husband had AVR at 56 (turning 57 while still in hospital!) and as now has metal valve is on warfarin for life too. He is now over 3 months post op and things are notably better. He was at first very down being out of breath and just not believing he would ever regain his fitness. Now he can walk 10 miles and does not feel out of breath. He also enjoyed regular drinking before op and felt fed up when told about the alchohol restrictions. We are also vegetarian and so wondered how that would work with warfarin. After a while he started drinking again and drinks four pints on a Thurs when out with mates and then also half a bottle of wine on weekend nights. So way more than you should ... His INR has stayed in range and his heart rate, blood pressure and general fitness levels are in good order. We do try and be fairly consistent with diet as being vegetarian we eat a fair amount of all the foods on the list that effect vitamin k. He is still struggling with thudding of metal valve but even that has got a little better. In the beginning he found it so intolerable that he felt he'd rather not have had the op and live with the risk instead. There is a good video made by Edward Baumann who if I recall rightly was only 29 when he had his op called 1 Year After Aortic Valve Replacement Open Heart Surgery - Tips, link below
youtube.com/watch?v=r4vOu5b...
I hope you feel fitter by the day and do remember what so many people on the forum say that it can take 6 months and longer to feel right again.
Hi rob, I've complete congental heart block and fitted with a pacemaker. I'm looking for groups in East Lothian to help with the mental and physical side of things. Hope you find someone around your age and get answers
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