New to forum

[Adamlee]

Good evening all,

I was told about a month or so ago that I will be having my aortic valve replacement in around 4/5 months (dependent on NHS waiting times). I've known that I'd need the surgery at some point but now I know it's happening it's really hit home.

Firstly, I'd like to say thank you to everyone contributing on this forum. I've been reading different threads for the past month and it has really helped me find some answers and calmed me down at times.

The last couple of days have been a struggle for me. I have endless questions and they're in a constant loop in my head.

I'm a 30 years old male from the UK. I'm a primary school teacher. I have a wife and a beautiful 2 year old daughter. Because of my age they have recommended the mechanical valve. I am quite a social drinker and that does worry me a bit with the warfrain - how much could I drink after, what are the actual chances of stomach bleeds etc. - but my main concern is the surgery/post surgery and life expectancy.
I have had open heart surgery when I was 5 days old (born with 3 holes in the heart) so I know there's a slight increase in chance of infection after surgery so mortality is a big worry of mine. My main concern is life expectancy. I know it's almost impossible to predict anyone's lifespan but is anyone aware if we are going to live a shorter life on average? I've read some papers but it's hard to find a solid answer.

I'm not sure I'm really asking many questions but I think I just wanted to write my concerns down and talk to people who are actually going through it.

Apologies if I have waffled on.

Adam

 

[Pete81]

Hi Adam,

good to have you here! This is the right place to be and definitely also the right time to ask questions (also to your consultants btw, ask questions, everything you are worried and concerned about)
I had my mechanical valve at 35 (4 years ago) I was a CAMRA member at the time, so you know that means I really love my beers. I have never been in any trouble with warfarin and having a few more than what is recommended. Getting really drunk however is always a bad idea. Also, instead of drinking on several days of the week I now just pick an occasion. I wouldn’t worry about all the serious bleeds that are reported in literature, remember, especially when you are a bit younger your blood vessels are not as stiff and you’ll be (wanting to be) in control as much as you can over you INR which will also lower risks.
The life expectancy issue is also something I tend to worry about when I think about my two kids who are now 1 and 4. I want to be with them as long as I can of course, and it is difficult to get an answer to that as you also mentioned. For older patients it is known that life expectancy is the same for valve recipients however for the younger e.g 35 y/o I think predictions in literature differ. I expressed my worries to my cardiologist after i had my emergency procedure, when these questions started to come up, and she said not to worry. What I would like is the answer that I will get old just like everyone else but I know that even without a AVR it’s of course impossible to tell. I take comfort in the fact that medically with a nice new valve, you can get very old. There’s several people on the forum here who have had their valve for decades and i am sure they will share their thoughts as well.
Allways happy to have a chat.
Cheers, Pete.

 

[dick0236]

Hi Adam! you will find this forum very helpful in answering your many questions.

I was about your age when I got my one and only mechanical valve. My two sons where 6 and 8 years old when the surgery was done. I now have 5 Great Grand Kids older than your daughter......and I thought I would not live past 50 after I had the surgery. So much for trying to second guess what will be.

Alcohol, used sensibly, should not be a problem.....just don't get "falling down drunk" and hit your head on the pavement. I was even prescribed a beer each evening while in the hospital post op........it is a pretty good diuretic.

As for life expectancy......I'm going on 85 and the valve will soon be 53 years old. I have outlived normal USA life expectancy and the valve has outlived its design life of 50 years. The only thing that is certain is you will have a much better chance of living into old age after corrective surgery.

 

[SumoRunner]

The first time I heard I'd need valve replacement was in the 1960s in my teens. Got the aortic valve replaced at 43 in 1991, 29 years ago. I was a runner, track, roads and trails, a shot putter for 25 yrs, swimmer and triathlete. Still am to some extent, just slow. I ran 150 races prior to AVR, 350 after. And I do enjoy my beers, sipping the 4th of the day now. 4-5 is my limit though. A bit of wine from time to time, but never hard liqueur, not that I can't, I just don't like it. I'm only 72, not a codger like Dick.

 

[Adamlee]

Thanks for the replies guys. It is reassuring that there are many people on here living to a great age! Technology is always advancing so who knows what the future holds.

I intend on buying a home INR testing kit. I think if I could manage 4-5 beers I'd be pretty happy. I know I'll never be able to get really drunk again but to be honest that might be a blessing - I hate hangovers and I only get drunk a few times a year.

Thanks again for your contributions.

Adam

 

[pellicle]

Hi and welcome

am quite a social drinker and that does worry me a bit with the warfrain

It shouldn't.

I'm comfortable with how it all works. I drink a couple of wines most nights, sometimes beer instead, sometimes bourbon, sometimes brandy.

Most of what you hear made read is overblown and out of context.

Feel free to reach out if you wish.

 

[user 16827]

Hi Adam, taking control of you own INR is a great idea, i'm UK based too and depending where you live
your local health authority may offer a free self testing service ( mine does ) they give you the test machine & your GP writes your test strip script.

Waffle on as much as you need to that is why we are here, we have all been there , knowledge is king
so keep asking whatever is on your mind.

Regarding life expectancy, with a well managed AC and good diet and the correct life / stress balance
shoot for your 90s like me

 

[Freebird]

Welcome Adam, I don't have much to add to this discussion as I'm getting a tissue valve on Wednesday and I'm much older than you (58) but I couldn't pass the opportunity to wave to a fellow Liverpool fan! This forum is full of lots of comfort and expertise. I wish you well.

 

[sylviayasgur]

Welcome Adam, no need to add to what others have said. Just wanted to remind you that no question or request is too much. This forum has been a blessing for us all- support, info, experience. So glad you are having this life saving/ extending surgery. Sounds like you are in control and on a great path. Please keep us up to date.
All the best!

 

[PAN]

Hi Adam,

This is the perfect place to answer many of your questions. Start listing your questions for the surgeon now as they come to mind. Sometimes I'd think of a good one then it would slip my mind. Needless to say, I have a few after several years in the virtual waiting room.

My own diagnosis has changed a little lately and it can be a little overwhelming. This is an amazing place but in my experience taking a few days away from reading about this stuff can help calm the nerves. In my opinion

Also a Liverpool supporter , also going mechanical , also looking forward to a nice cold beer post op.

All the best,

P

 

[LondonAndy]

Welcome Adam, from another Brit. I have had my mechanical valve for almost 6 years now (and am now 54 years old), and am also a former CAMRA member, who enjoys beers (and wine, gin, Pimms ...) though not all at the same time and yes, mostly in moderation though more on holiday!

You are right to get your own meter - it gives you so much flexibility, and control over your health risks. The NHS is in favour of these meters, but if you find any resistance from your GP (because you need them to prescribe the test strips) you might want to print out a little note I prepared showing the advantages: http://bit/ly/NICEreport.

Be careful of alcohol in the first few months after getting your valve, as the body takes time to adjust and your INR may be a bit unstable during this period. But thereafter you can start experimenting, and testing before and after a few drinks to see how your body reacts.

All the best, and feel free to ask away if and when you need - there are some great people on here with excellent advice, and I have learnt a lot!

 

[Paleowoman]

Hi Adam - welcome from me too, another Brit. I joined the forum a few years before my aortic valve replacement and have stuck around since. This forum is a great place to be for support - there's a wealth of experience and advice here !

 

[Superman]

Going on 30 years this fall with a mechanical valve. I did need a second surgery about 10 years ago due to an aneurysm. I’m 47 now and all of my five kids were born after my first surgery. One after my second.
Hopefully I’ll see another 40 years or so while ticking away. I fully expect the valve to be in good working order when something else leads to my demise.

 

[Thomas]

Hi there,
I've only had my mech. valve for a couple of years - basically a rookie. This forum provides immeasurable info and support. You'll find it very beneficial over your time of recovery and going forward.
I'm a pretty steady bourbon drinker and enjoy beer/wine.... pretty much anything else on occasion. I find it rarely has any affect on my INR readings, not even when I over do it a bit.
Best of luck heading into the future.

 

[Seaton]

Greetings Adam!

Welcome to the forum. I’m in the UK, too.
This time last year I was a few weeks from being wheeled into the operating theatre . Where did the year go?

This place is an international oracle of wisdom and support, as you’ve no doubt already gathered. Exactly what’s needed pre and post surgery. The wise souls and stories here certainly helped put things in perspective for me on my AVR journey.

I’ll be looking out for your updates and questions. And wishing you the very best as the weeks trundle by.