Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin
I'm new to this site. I'm a 25 year old who is undergoing valve replacement with a mechanical valve. Does anyone here think it is possible for me to live a normal life expectancy or at least to my late 60's, early 70's? My surgeon said he expects me to live until I'm at least 70 providing no complications. However, when I read articles on the internet it says way less. More like I'd be lucky to make it until 50! It's made me very scared about my future. Any advice or knowledge on how long we are meant to live after valve replacement would be excellent. What have your surgeons told you etc?
Should my mechanical valve last a lifetime or will I need it replaced further down the line. They are meant to last 200 years but again, websites say 20-30...
I'm sure you have all sorts of scary thoughts going through your head at the moment I know I had before my surgery but it's good that you can ask questions and hopefully get some feedback from those of us who've been through it.
I'm not a surgeon or any kind of medical person but what I can say to you is your surgeon has indicated that you will live till you're at least 70 (barring complications, accidents etc......and remember even those without mechanical heart valves have accidents and medical complications!!) He has given you an expectation of being around for another 45 years during which time I would imagine that medical advances in heart valve surgery will have advanced so far that it will probably be like going on a visit to the Dentist.......so even if you need another replacement (which you probably won't) it'll be done and you'll be sorted
I know you probably don't want to hear this at the moment but try not to reseach too much about your surgery on the internet a lot of information you pick there up is downright inacurrate and it just scares the bejesus out of you. I know this cause I did it myself!!.
Good luck with your surgery and let us know how it goes
Thanks Grace. Yes, I'm very worried at the moment. I never thought I'd have to have this done before I was 50 and I'm very worried about warfarin and the risk of bleeding etc. Silly I know as there is only a 1-2% chance each year of a stroke/ bleed and I guess this includes people who don't manage their INRs as well as others.
Thanks for the advice. I'll try and not look at the internet although sometimes I just can't help myself. It seems to be on my mind all the time. The stats seem way off what my surgeon and people on this site/ other sites are saying so I'm going to try and be confident!
I'll let you know how the surgery goes.
You're welcome Jason keep well and be confident that it's all going to turn out fine because it will, also the warfarin therapy is fine even although it took me several months to get my INR sorted!! I do feel confident using warfarin simply because its been around so long and been used to help millions of people worldwide......and remember all the new drugs that are being trialled at the moment they'll be ready for use in several years time. According to my cardiologist these pills will take away the need for regular INR testing and will simply be taken once per day to keep the bloods flowing nicely
Jason - firstly start with the positives - the surgeon can keep you alive. If you do not have a MHV you will not probably live too long. I am only 6 years post-op, but I feel a lot better, have far more energy and the upsides FAR outweigh the downsides.
You will learn to live with Warfarin, you do have to be careful - no contact sports for example. You do need to be aware about food and alcohol, but you can still eat and drink - just try and avoid binging.
You will be amazed about how quickly you recover from what is major surgery - you will soon be doing everything you did before the operation, but you will have more energy.
As to life expectancy - well you have had heart surgery, but I think all that matters is that post-operation you will have a much longer expectancy, than before the operation. Think positively, it will also help your recovery.
Good luck, I am sure the operation will go fine.
Im 8 years now post op from a massive Type A Aortic Dissection where my aortic valve was also shredded along with my aorta and i have a full dacron aorta up to and past the aortic arch and my wonderful tick click thump MHV! As James said its all about common sense. It takes a long time to get used to this new 'thing' inside you clicking and thumping away but now i think of it always as my new life... As for life expectancy with a MHV..try 100 years.. thats the manufacturers (St Jude) words... the only reason that doctors won't commit to this figure is no one has gone 100 years with one as they were only introduced really in the 60s.. and doctors are notoriously cautious..but we do have a lot of 20 year plus recipients on the site and one over 30 I think.. as for me I'm expecting it to last me until well into my 80s.. 30 years away - at the least! As for warfarin - common sense as James said.. dont binge - get your INR stable and its realy a doddle... I still have a beer in the summer and with a curry (!) and a glass of wine w/dinner .. moderate intake of vitamin K vegetables... and my INR has been rock steady for years at 3 apart from any antibiotic courses which really mess it up... Its when you duck in and out of food/alchohol etc (binge) that will mess your INR up .. anything is ok really in small doses... by introducing Vit K vegetables and a few drinks into my diet str8 after my valve implant my warfarin dosage has taken this into account and once it stabilised at 7.5 mgms my INR has been pretty stable ever since (8 years) It does however change over time and actually I am now down to 7mgm warfarin per day and still have the same INR -around 3.
Hope this helps. But I can ASSURE you that a MHV is not really any impediment to your lifestyle - I live mine to the full!
Thank you. My docs say it should last a lifetime also. I'm just worried as I'm 25 and want to start a family and live a long life. I'm hoping this will be possible. Good feedback re the INR. Thanks. From the many people I've spoken to it's about keeping everything consistent right from the start. I'm not a big drinker anyway which helps!
I've heard it is harder to travel? Will it still be possible for me to go travelling around the world (probably not all at once!).
I'm hoping it won't have a huge effect on my lifestyle. However, if it does then I guess I'll just have to live with it!
There is very little you will not be able to do after your operation. You can certainly travel around the world, but you do have to consider travel insurance with a pre-existing condition. There are specialists out there, and you do have to shop around. Having said that, I have found the high street banks the best - but you do need to read the small print and be honest with the brokers. I have been traveling ever since the operation (my first trip was to France after 4 months), and have been to the US and Middle East.
If your INR is steady you will have nothing to worry about, alternatives are Self Testing (which is what I do) and if necessary INR tests local to where you are.
Don't let it have an effect on your lifestyle, but do try and avoid things that might lead to bruising or cuts (i.e. contact sports) - otherwise it is business as usual (accept you no longer have a heart valve problem, because it has been fixed).
Thanks everyone for the great replies. I've been really worried recently because of my age, 25 and I have an amazing girlfriend who I want to marry and have kids with and watch them grow up etc. I'm worried that I'll get to 30-35, when we have kids and not make it to see them grow up. However, I'm determined to make it all the way and I'm hoping my ON-X valve will see me through 50+ years. I'm slightly terrified of warfarin but I'm told the risks are minimal with good INR management. Sorry for all the negativity, it's just a stressful time right now and I'm sure you have all been through the same.
Graeme, I know your op was a huge emergency and you overcame the odds but at least you didn't have it on your mind for weeks prior (that is probably the only positive out of a Type A Aortic Dissection!). I'm finding it very difficult to sleep at night, my op, life is constantly on my mind. Any suggestions?
Yes it was a bit difficult for me to have the decision on my mind on what valve to go with as most of me was hanging out on the operating table..and i was right out of the loop (!) my wife did that and it was for me the best decision ever...
Seriously - your valve will be fine and so will you - I have no doubt you will have a very long and full life.. I read somewhere - can't find it now - that over 2 million valves a year are implanted now worldwide..frankly the op - with the new keyhole surgery (and robotically assisted surgery) along with stent technology has become totaly routine and usually done in half the time it used to take with the full chest crack .. technology in medicine is advancing at such a cracking pace that it will become even more routine as the years pass.. plus as someone said we are on the cusp of a major breakthrough in a replacement for warfarin.. so its all good as well for the future for the eventual replacement for you for warfarin. Its hard to to tell you to stop worrying - you should never do that - but l do really believe that given all that you have going for you - you are going to make a great grandpa!
take it easy and chill - as much as possible!
No worries!!!! You have join the perfect site Graeme is a blessing to others !!! My Boyfriend David had the same surgery last year, well we didnt have time to prepare or read about it till after, But The Doctor told us that the valve will last him a life time!! You are young and in great shape so just have faith and you will live to see your grand kids!!
I am new to this site and let me assure you from someone who had an AVR at 25 years of age and is now 37 and still ticking along, you will be FINE :) I have had my issues, more menta, (refer to my discussion 'medtronic hall...) but I am still here, and plan to be for a VERY long time.
As everyone has said, the biggest concern will be regulating your INR and avoiding infection, otherwise your valve will be 100% A-OK. I do drink alcohol, sometimes heavily, and have never had an issue. I reduce my warfarin intake when I know a few drinks will be had and have managed it well over the years. Each person is different and you will learn how best to manage your INR, it isnt a massive inconvenience at all. Re infections, just make sure you keep your teeth healthy and you will have to take antibiotics now before any dental treatment as a precaution.
Happy to answer any other questions you have,
As Jason says it is really important to have regular dental check-ups (usually twice a year), however in the UK the latest advice is that antibiotics are no longer required. My dentist showed me the instructions from the dental regulators, and I decided to stay on antibiotics (did not want to take any risk), by my INR goes haywire afterwards.
So I decided to stop taking antibiotics before going to the dentist - clearly it is a personal decision.
However, on the drinking front I agree with Jason. I was told to drink the same number of units everyday - and I found I was drinking more than before the operation (and my weight was going up). I now drink, when I want too. I try not to binge drink, but it does not seem to have much impact on my INR. Eating too much cabbage, or anything else with lots of Vit K, has far more impact.
I think it is important to manage your INR, and not to let your INR to manage you.