www.heart2hearts.co.uk

[Macca]

Hi Everyone

I'm new, yes that's right, I've just been diagnosed with valvular heart disease and need my Aortic Valve replacing.

Hope no-one minds but I'll just explain a little. My name is Neil, I'm 39 (40 in a few months) and I live in Bristol UK. I'm extremely active and fit; Climbing, Mountaineering and Mountian Biking pretty much every other weekend. I spend weeks in the mountains and have summited Ben Nevis 5 times all via the notriously difficult North Face. So.......shocked by all of this is not the word!!

Basically, I need to decide whether to have a mechanical valve or go for the Ross Procedure. Has anyone had either? Does anyone know someone who's had the Ross Procedure? I could really do with talking to someone who have had these op's.

Also, does anyone know any very active sportsmen/sportswomen who have had heart surgery? I'm trying to find out how long rehab takes before (if at all) returning to their sport.

I hope someone can help.

Cheers

Macca.

[aml1953]

Macca
Due to your age you would be better off with mechanical. The mechanical has a 35 year life span which was told to me. But you will have to be on blood thinners. With the other you are looking at 15 years life span before it needs to be replaced and have to be on anti rejection drugs.

[tonymc]

Macca

I had an aortic valve replacement on 13 December 2008 as well as as having an aneurysm sorted with an aortic graft.

I do not know much about the Ross Procedure you referred to but here is a link to info about it (which you probably have)

http://www.cts.usc.edu/rossprocedure.html

Since it uses your own tissue I am not sure why you would need to be on anti-rejection drugs (but I am not a doctor).

The options I was given were (a) mechanical valve or (b) tissue - pig's valve

Now, the deal was simple - I am 40 (41 this year) have a girl who is 3 and a boy who is 5 and was always into sport, gaelic football, mountain running, gym and martial arts.

I was reliably told by my surgeon that, yes the mechanical valve will last alot longer than a tissue valve but with a mechanical valve you need to take warfarin to regulate the INR level in your blood - basically the rate at which your blood clots - the concern is that blood will begin to clot aroubd the valve and cause problems. However, remember warfarin is to reduce the clotting power of your blood - so if you get cut, bruised or have any sort of internal bleeding and are on warfarin - you will clot slower than if you were not on warfarin. Now, for anyone involved in a contact sport or an activity where the risk of cuts, bruising, falling etc then warfarin is not the best thing to be taking. As well as that some foods (broccolli) and drinks (cranberry juice) can affect the warfarin as well.

For those reasons (and I want to be able to play with my little ones as they grow up without being careful) I went for the tissue valve (which at 40 was not the normal choice). The downside with a tissue valve is that is wears out (usually calcifying) and will need to be replaced (hopefully if I am around!) in about 10 years. Thats an average figure - no-one could tell me a figure (best guess was 9-15 years). Another guy I heard of had a valve replaced at 26 and went for a tissue valve because he wanted to continue playing football and it thE valve lasted him 6 years and he had to get it done again. He went for a mechanical valve the next time! Good thing about the tissue valve is that there are no drugs to take - no warfarin (only for a short time after surgery) and no anti-rejection drugs. My surgeon did tell me that if it was him, he would take an asparin a day after I came off the warfarin.

So, no warfarin means that I should be able to do anything - contact sports, mountain stuff - anything I want.

You asked about recovery after the surgery - well it is weird. I had my cruciate knee ligament reconstructed a while ago and it was much more painful than the heart surgery. I am sure you know that they will have to break your breast bone - and this is what takes the time to heal. To say it is sore is not quite right - you will be very stiff more than in pain (well thats the way I was).

Even immediately after the surgery getting mobility into your arms and shoulders will help - lifting one arm at a time straight above your head and just moving around - all this helps in the recovery. After about 8 weeks (5-6 weeks for the breast bone to heal and another 2 for all the stiffness to go) you really should be good to go. You will however be starting from scratch again. I had to start with doing press ups on my knees! But never mind! But as far as your heart is concerned, my surgeon told me that I could not do it any damage even if I tried and really, since the new valve was in my heart would be in even better nick that what it was!

They will encourage you to take deep breaths as soon as possible after surgery in hospital and they will want to get you standing up straight and walking as asoon as possible. The walking continues after you come home - 3 five minutes waks per day for the first week, 3 ten minute walks per day in week two and so on. By week 4, I was walking more than I was meant to.

Having a level of fitness and youth on your side before you go in will stand you in good stead for recovery afterwards.

Things they neglect to tell you are - first thing is that for heart surgery they have to shave you - your chest, your legs, your arms, under your arms - any hair on the front of your body (your privates do escape!) - I am telling you this because if I had have known this I would have shaved everywhere before I went in (I had my chest done but not the other bits) - it really is a bit on the humiliating side lying there and having 2 guys shave you with electric razors and not a bit pleasant.

Also, my operation was meant to be on Fri 12th but was cancelled to Sat 13th - not a big deal but just have at the very back of your head that there is a possibility that things may happen on the day that mean it is pushed back - getting yourself mentally ready for it is important and being geared up for a certain day and then waiting in a ward in your own for the entire day to be told at 4.50pm that the operation that was meant ot happen at lunchtime was cancelled was not something I was had remotely prepared for - hopefully it will not happen to you but just in case ....

You say you were shocked by all of this - well join the club - I had no idea, felt no symptoms and was training away so I count myself lucky that they found it after a my GP listened to my heart as part of a routine check up.

One last thing - if you have a critical policy check and see if it pays out for this operation - valve replacement is covered in most of them. If you have not got one (and I did'nt) its probably too late now!

Macca, getting your head around what has to happen is the hardest thing- get ready mentally, block out 8 weeks after if to recover and another 2 months after that to get back into some sort of training - which I have just started to do. The pain/stiffness is there and you will not be able to just igore it but I had stopped taking pain killers before I had even left the hospital because I simply was not in "pain". The cut does take time to heal - mine is just about there and I can still "feel" the scar stiff even now as I type and I know it will be pulling at me when I stand up but hopefully that will ease with time.

For the first few weeks home as well - apetite might not be the best, but I think that is normal. I also put on 6 pounds during my week in hospial, I think itis the fluids, drugs etc that they give you - but once you get up and moving that comes off again and then it's time to eat good food, rest, do what you can. do not expect too much off yourself in the early stages and eat it regularly to get your strength back up again.

I know that I will have to go and do it all again some time and I would not be that worried about it (easy to say now since its a while away) but having done it I would not be too worried about doing it again - but the news does hit you like a kick in the balls. Stay positive, learn/read as much as you can, talk to your surgeon/cardioligist - and make the best choice for you regarding which valve to take. Even when I asked my surgeon which one he would take he struggled to come up with an answer.

If you want to give me a call drop me a line to tony.mcmahon@easy.com and I will give give you my number if you think there is any benefit in that

Hope this helps and best of luck - I am sure it will all work out

Regards

Tony

[Macca]

Hi Tony

Firstly and most importantly THANK YOU!!! Thanks so much for your reply and all the info, I cannot tell you how good it feels to finally talk to someone similar to me who has gone through this. I don't (didn't) know anyone who had, I didn't know anyone who knew anyone who had so thanks.

Also, good to hear you're OK and well on the way to full recovery by the sounds of it - nice one!!

Sorry it's taken a while to repsond, been a bit busy in work, which is probably no bad thing.

I did research the Ross, but thanks for the link. I'm surprised they didn't offer it to you?!?!? You're right, it's all about the Warfarin. Having to take Warfarin when you do what I do for a hobby is not a good idea, infact it could be more dangerous than the actual climbing . Hacking my way up frozen waterfalls in La Grave or Norway with sharp pointy things all over me taking Warfarin - I think not. I also didn't like the idea of going through another op, which is why we are thinking about the Ross. In the Ross they take your pulmonary and put it in place of the knackered Aortic Valve, then use a pigs (or HUMAN) valve in place of the pulmonary. The tissue valve in the pulmonary position is under much less strain than the Aortic so should last longer. And of course, no Warfarin.

All the info on the op/recovery is fantastic!!! I now feel I can prepare properly and your tips will come in very handy. I never thought about cancellations, or shaving. I knew about losing apetite but not much else. Your timings for recovery will also give me a 'real' benchmark, which is so much better than leaflets and info on websites.

It's funny - my GP also discovered this after listening to my heart. I had a bit of a 'funny turn' out in the mountains. The first one was mild and I was carrying a 25kg pack, and it was summer, so I just thought I'd over egged it on the pace a bit. The second time was much more severe - out on the mountain bikes trying to keep up with some of the guys (early 20 year olds) as we ascended some of the mountains in the Brecon Beacons when all of a sudden I couldn't breath and collapsed off the bike. That's what you get for trying to keep up with the youngsters I thought, but it took ages to recover and bailed out of the ride and went back to the hut. I reluctantly agreed to get myself checked out after a nagging from my mum (mum's are like that aren't they!). So after a load of blood tests and an ECG (Electro not Echo) they found nothing wrong - fit as a fiddle according to the results....then my GP said 'I'm just going to listen to your heart' and wham, there it is, you find out you have a heart murmur. The next thing you know you're in the hospital 2 weeks later having had an echo with a consultant telling you you need open heart surgery.

I know you felt the same Tony, so I know you can appreciate this. It's wierd though, cos like you, I'm not symptomatic. I feel fine, no different, I've even been climbing and done some mild hill walking after being diagnosed - feel great. Which is frustrating to say the least.

Thanks for all the info agian, and yes, I'll email you privately if ok - thanks for your email address. I'm still interested in how you felt after the op and was wondering if we could chat more about specific exercises etc. I like the walks idea and the raising your arms. I'm glad I've found someone who can relate to the situation and is the same age. Although I'm sure you'd rather you weren't able to relate to all of this of course .

Oh by the way....my son plays rugby. Gaelic football - tough sport!!!

cheers and I'll email soon.

Neil.

[tonymc]

Neil

Drop me a line anytime - was out for my first run yesterday - only 20 minutes mind you!

Felt like I could have done more and run faster but do not want to push it too much early days - will ramp it up slowly. After doing nothing for about 4/5 months (2 months after surgeon told me to sit on my ass and do nothing and the 2/3 months since the operation) its like starting from scratch like I said before.

I will be seeing my cardiologist next week and will ask him why the Ross Procedure was never discussed with me and get back to you on that - I may have a different problem - I had a bicuspid valve (since birth) and it was leaking and letting blood back into my heart making it work harder and dilate - but I will ask him and let you know.


You asked about how I felt after thwe operation - well like I said physically I felt stiif and a little sore (coughing is no fun which they encourage you to do in the ICU to clear your lungs of any blood/crap and they also want tyour lungs fully inflated asap after the operation - I got chest arays taken in the ICU which I am sure you will get as well).

Mentally, however, it does mess with your head - all kinds of things go through your mind from this is a mistake i feel fine to right I need this done so get on with it, to what would have happened if this had not been found, well at least it has been found and they can fix it, what would have happened if it had gone pop up a mountain, what happens if I do not come through the operation ( I had my will done, letters written to people who matter and the envelopes sitting with a good friend just in case the worst happened) and then I looked at my kids and thought of them growing up withiut me - the morning I left for the hospital and watched them go out the door for school and nursery was awful. So many things go through your head. Like I said the hardest thing is getting your head around it - so do not worry, if you feel like a basket case some days and the slightest thing sets you off crying - its all normal! The other thing that happened me was that they were times I genuinely did not think about the whole thing - like you say busy at work and I literally forgot about it and then a letter would come in from the hispital or someone would ask if I had heard anything and it was like hearing about it for the first time again and then you felt low again but then you would hit yourself a mental kick in the arse and get on with it.

When my surgeon emailed me with the operation date it was like - oh s**t!

I refused to let anyone come see me in hospital (but a few die heards came anyway!) - I did not see the point in it and I just wanted to focus on healing and getting better and really there is enough going on in the hospital after the operation - blood test wevery day (to check INR),chest xrays, the routine of breakfast, lunch, dinner, blood pressure monitoring, physio coming to get you walking around and of course the joy (well I had) of your own room and sleep! I brought a book in with me and never opened it once - no time!

In terms of time in the hospital - my operation was on Saturday and I was out and home the following Friday. First week hope was no fun at night back in my own bed without the remote control thing - they encourage you to get lying flat as soon as you can so that was OK but I was waking up dripping in sweat and then of course with the sweat I ended up freezing. This happen for a few days after I came (never happened me in hosoital) - I think that was down to the fluids/drugs/anaesthetic etc working its way through me. I had my operation in the middle of winter and for the first 4 weeks or so I felt the cold much more than I ever have (going to bed wearing a fleece on a few nights!) and when I went for my walks I had several layers which was not the most comfortable on my chest - no idea why I felt the cold as much as I did. People put it down to the warfarin (which I am taking for a few months) but I do not believe that is the reason - I am still taking warfarin but now have no need for fleeces in bed any more!

Not sure if you have heard of a website called www.ning.com but I will be starting a group on that website for exactly this kind of thing and you can be the first person to join!

Glad to hear that the reply helped, drop me an email when you are ready

Keep the head up

Best regards

Tony

[BrianG]

Hi Tonymc and Macca.
I've only just seen this forum (and have just posted to another thread in this 'mitral valve' section). I just wanted to say thanks for making your thoughts and experiences available. I'm a touch older than you two (62) but just as obsessed with walking up mountains and being in them as much as possible. No ice-climbing though.

I've just had a mitral valve replacement after endocarditis. Like I said in the other post, I've already been reminded of my mortality when I contracted a throat cancer in 2003 (all gone now, after pretty radical treatment), so I had some difficulty coping with heart disease and surgery. That always used to be something those people who eat lard and smoke like chimneys get, not me. But so was the cancer. Oh well, we live and learn. Or not.

I too opted for a tissue valve because I didn't want to take rat poison for the rest of my natural. Every time I remember that this one will wear out, if I live long enough, I wonder if it was the right choice. But like you I didn't want the risk of getting a bad cut while a long way from help, and not entirely by choice I'm mostly out solo. I'm on the warfarin for 3 months and I nicked my finger while peeling veg last weekend, it took about 24 hrs to dry up instead of a couple of minutes, so I hate to think what a deep gash from sharp rock could do. And there's the hassle of keeping the level right, and avoiding certain food, and other risks after years of use.

I've only just had the first follow up with my surgeon today (7 weeks post-op). I proudly told him how I'd been doing 2-3 mile brisk walks every other day, and he told me NO NO, keep it as long as you like but not too brisk for another three months or more. He did say I can walk uphill, if slowly and with plenty of rest. Since I've been on my back for much of the last six months it would certainly be slowly. But its a good thing I didn't book that cheap flight to the Pyrenees in June.

Macca,
I think it's important to get off the bed as soon as possible after leaving ICU. The staff at Papworth do encourage it. I was shuffling around on the 2nd day and walking up and down the corridors soon after. They should give you some simple physio tips when you leave (expanding the chest, stretching arms to the ceiling, twisting torso, etc) all designed to maintain flexibility. My advice would be to do these regularly while planning your future real outdoor stuff and your proper fitness programme after a few months.

To be honest, after being ill with endocarditis from the middle of 2008 (affecting my hip and eyes as well as ruining my mitral valve), and enduring six weeks in another hospital having intravenous antibiotics, the actual heart surgery was a piece of cake. A breeze. Well, almost. Perhaps I was too swayed by the nice pre-med happy jab I got before the op. Never really thought about not waking up from the op.

I'd say the main things post-op are: be positive, cast off the "sick-person" label you get in hospital, get mobile, try very hard not to have to sneeze (or laugh) in the first few days (it's agonizing even on pain killers). Yes, you'll be encouraged to get your lungs clear (they are pretty much collapsed during the op) by coughing, but you'll probably feel the need to do this anyway. Dont know about other places, but at Papworth they give you a tightly rolled-up towel to clutch to your chest while coughing etc to help stabilise the sternum (you dont want to put too much stress on your clipped-up sternum). When you get home: do the simple chest exercises, keep taking the pain-killers exactly as prescribed (you need to keep control of it especially in the first week or two).

Then be b----y glad you're still alive and feel extra-sorry for the poor folks worse off than you.

Very best of luck!

[groiwally]

Many thanks to tonymc and others for all your messages. I am struggling at the moment with the news that I am due for a valve replacement in the coming months. Your messages moved me to tears - not because of any major fears but because of my being able to share my experiemce with others. Like you I am determined not to be a "patient" or "victim" but there are times when I feel vulnerable. Thank God I'm human after all. Until recently I also was free of symptoms with a normal heart size and am able to play tennis 3 or 4 times a week (weather permitting these days!). No breathlessness or tiredness. In the last 6 months my heart has dilated - hence the need for an operatoion while I'm fit.

I note the need for a cautious return to post-operative activity, in my case, tennis! Literally walking before running is the message! Time for reflection!

I cant' thank you enough for your ccomforting words.
_________________
graham walker

[pip12]

Hi all

Like Macca et al, Im 43, just been diagonosed with a valve problem, its giving me lots of pain and breathlessness. So guess Im heading for a replacement. Im based in the Netherlands although im a Brit. This is really scary, was a fit (if too over weight due to chocolate not beer !) father of two little Kids and now im an unfit father that needs to sleep lots and lots ! So I have a lit to think about at mo.

Im due to go in for another echo, this one is going to be the probe down the throat job, they want a better look at whats going on. I have no idea what will follow next, the Drs here are pretty poor in the communication skills, even the GP is arguing with them for me to be briefed. One good thing is that the GP is on my side, I guess thats becaus ehe thinks the sound from valve is cool, he says he has not heard a sound like it before. It the only amusing thing in this whole process so far. That and the pain killer the hospital first gace me for my chest pain. Gaviscon! yes thats right Gaviscon, because i was not having a heart attack the pain must be indigestion!!!! Fortunatley I have not seen that Cardiologist since! I hope he does not do valve replacement surgery?

Are there any thoght on the types of valve to have and should I insist on valve replacement even if the valve settles and the pain and irregualr beat eases? Will I be out of the office for a long time? All sorts of questions. Your experienecs would be a help here. Thanks