10 year's with questions i need to ask. Age 34

[InvictusIXI]

Hi I'm Leon I'm 34
I had surgery when I was 24.

I'm coming up to ten years this October for Bicuspid aortic valve replacement having a st jude mechanical valve.

I don't know why but my anxiety has hit the roof again the last few days

Emotionally draining and feel like I was fresh out of surgery.

I live a normal life
Play football with my son
Bike rides
Walk with my dog
and the usual daily life stuff

But I just can't stop thinking about life expectancy again and how long I'm gonna live.

My son is 8 and all I want in my life is to see him grow up and become a man his self.

That is my only worry

Iv never really done a lot of research about it
All I got told was I'd live a normal life thereafter.

If there is any people in the same kind of age bracket or stories of people growing old without the usual complications I'd love to hear them

Or any info about life expectancy

Much appreciated

 

[nobog]

You said yourself: "I live a normal life".

Pruse though these forums, a replacement mechanical valve is no hinderance to a long life. Take solace you have a high-quality (SJM) valve. Monitor your INR and go have a beer!

 

[ValveAdmin]

Hi Leon, welcome. Have a good browse round the forum and you'll find lots of inspiring stories. Best wishes.

 

[pellicle]

Hi

If there is any people in the same kind of age bracket or stories of people growing old without the usual complications I'd love to hear them

Or any info about life expectancy

I would say (given what you've said about your self) that the only thing you face is the need to keep having yearly checkups for the possibility of an aneurysm.

The only thing which you need to do as a priority is manage your INR well. I've written a blog post about what to do, why and how here:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
its lengthy as its intended to be a "quick but detailed" reference as well as "why". There are many more posts about INR and warfarin related issues if you follow this link.

So, as to life expectancy, I had my first OH Surgery at about 10 in about 1974, in that they repaired the valve rather than replace it to give me time to grow (and for there to be improvements in technique and options). I was able to go back into sports (which was tough given my handicap of being kept in cotton wool by my parents between 8 and 14, but I got stronger, rode bicycle everywhere and took up sports like fencing and started doing physical training like weights.

That lasted until I was 28. In that time I recovered from being a child with heart disease who would die before my teens to becoming a normal adult. I went to university, rode motorcycles and bicycles, hiked and went on many adventures.

When I had my 2nd OHS and got someone elses valve. I was in the middle of my second degree and was still riding motorcycles and going camping and hiking and doing Aikido
I didn't really live a "normal life" because they were far too boring, staid and uninteresting to me. Instead I was inspired to learn about myself and my condition and to live life to the full.

Then in 2011 I needed another surgery because 1) an aoric aneurysm had been found, and the valve was starting to fail too (but may have lasted a few more years without surgery were that the only problem. By that time I was married and renovating a house to raise a family (yes, a late bloomer some would say).

That was more than 10 years ago and my current valve (a pyrolytic carbon bileaflet by ATS, of similar design to the St Jude) and I am nearing 60 now.

I have utterly no idea what you mean about the usual complications, unless you mean you've read something about ****** surgery jobs, people getting reoperations over time or if you mean the complications of living (like girlfriends, jobs, study and exams ...).

I've had the usual complications of being alive and aging, some small surgeries here and there (motorcycle accidents, arthritus, some other minor issues), going grey, losing hair, losing friends due to accidents and cancers, losing parents. All the natural things.

Now I'm sort of retired and just live a normal 'early retired' life. I like to ride my motorcycle still



and ride my electric scooter in places



or just having a beer and watching the sunset after a ride

I don't know much about the complications which reduce life expectancy other than not properly monitoring your AC Therapy (aka warfarin and INR)

Best Wishes

 

[Timmay]

Welcome aboard Leon! You've come to the right place man. You'll find a lot of old-timer mechanical valve people here (doing all sorts of crazy things). That should boost your confidence dramatically. I'm a newcomer here and this place has been amazing. What I have learned about my situation is fairly simple:

Having a mechanical valve will not kill me. Something else will .

Buck up brotha! (I know, I know, easier said than done). But truly, you can live a normal life ... even if you have to prick your finger once a week and sometimes adjust your warfarin. No problem.

I plan to see my kids grow old and have children of their own. Looking forward to it!

 

[pellicle]

... even if you have to prick your finger once a week and sometimes adjust your warfarin.

lets see how that goes when you get back to drinking again ;-)

my advice however is drink consistently and then "dose the diet" ;-)

 

[Superman]

lets see how that goes when you get back to drinking again ;-)

my advice however is drink consistently and then "dose the diet" ;-)

I’m not an alcoholic! I’m on Warfarin! This is important!

*My profile pic is extra funny here.

 

[dick0236]

But I just can't stop thinking about life expectancy again and how long I'm gonna live.

My son is 8 and all I want in my life is to see him grow up and become a man his self.

That is my only worry

Iv never really done a lot of research about it
All I got told was I'd live a normal life thereafter.

If there is any people in the same kind of age bracket or stories of people growing old without the usual complications I'd love to hear them

Or any info about life expectancy

Hi Invictusix and welcome to this forum. I felt as you do a lot over the years following my surgery at age 31.....now I'm 86 and I don't worry much about life expectancy. I've already lived well past the current life expectancy of 78.......on my "one and only" mechanical valve. Life is a crapshoot and live it until your number comes up.

My two sons were 8 and 6 when I had this surgery and I've watched them grow into mature, successful men who have had children (my grandkids) who have had children (my great grandkids}..........I wish you the same.

I never researched my condition because there was no Internet and almost all info was written in a medical language which I could not understand. That is the beauty of the internet and forums like this one. We have all been where you are......so stick around and learn how to live a long and happy lifee

 

[Superman]

Welcome Leon! You’ll be fine. Just be sure to follow up and see a cardiologist periodically.

Our stories aren’t far off. I’m 49. Had my St Jude installed in 1990 when I was 17. I’ve got five kids. The only hiccup was when I was 36 and an aortic aneurysm was found. I had to go under the knife again and have that repaired. 12 years later and I’m still doing fine. If something does take me, I’m confident it won’t be those parts. They’re pretty bullet proof.

I have two kids in college now. My younger three are doing great in school and they stay active with clubs and sports. I get to go to their events and embarrass them as any good father should.

Remember too that life expectancy is an average and it’s significantly impacted by outliers. So stay monitored, stay healthy, and there’s no reason you won’t live well into your 80’s or longer like many of our participants.

 

[pellicle]

I’m not an alcoholic!

I'm also not an alcoholic (they go to meetings)

 

[bugspa]

Hi I'm Leon I'm 34
I had surgery when I was 24.

I'm coming up to ten years this October for Bicuspid aortic valve replacement having a st jude mechanical valve.

I don't know why but my anxiety has hit the roof again the last few days

Emotionally draining and feel like I was fresh out of surgery.

I live a normal life
Play football with my son
Bike rides
Walk with my dog
and the usual daily life stuff

But I just can't stop thinking about life expectancy again and how long I'm gonna live.

My son is 8 and all I want in my life is to see him grow up and become a man his self.

That is my only worry

Iv never really done a lot of research about it
All I got told was I'd live a normal life thereafter.

If there is any people in the same kind of age bracket or stories of people growing old without the usual complications I'd love to hear them

Or any info about life expectancy

Much appreciated

Hi Leon,

Relax and enjoy life. I had my AVR with a St. Jude valve in 1995 when I was 33. Since I've lived my life as if nothing changed (other than the ticking). Married, had a son, career, lift weights, run, backpack, snowboard, golf- all to this day. Don't waste your life with unecessary anxiety.

 

[dornole]

I had mitral repair 20 years ago at age 34. My Preemie twins who were delivered at 27 weeks because of the heart failure are in college now. They lived. I lived. I’m 55 now. I did see them grow up and thriving. Mostly I see it as a hot damn miracle and am grateful. Sometimes I get weird worries and do dumb stuff like buy a lift chair just because I had a bad echo (that was subsequently overturned). It’s normal to lose your perspective sometimes … if stuff gets too dark, increase your work to remain balanced (reading, gratitude practices, therapy, journal, exercise, religious practices, whatever is your thing). Nothing is guaranteed; every day is a miracle. Lots of precious years already granted you and probably lots more to come. Hug your kid and savor it is my advice.

 

[ValveAdmin]

I had mitral repair 20 years ago at age 34. My Preemie twins who were delivered at 27 weeks because of the heart failure are in college now. They lived. I lived. I’m 55 now. I did see them grow up and thriving. Mostly I see it as a hot damn miracle and am grateful. Sometimes I get weird worries and do dumb stuff like buy a lift chair just because I had a bad echo (that was subsequently overturned). It’s normal to lose your perspective sometimes … if stuff gets too dark, increase your work to remain balanced (reading, gratitude practices, therapy, journal, exercise, religious practices, whatever is your thing). Nothing is guaranteed; every day is a miracle. Lots of precious years already granted you and probably lots more to come. Hug your kid and savor it is my advice.

What a beautiful outlook on life!

 

[pellicle]

Nothing is guaranteed

couldn't agree more

I'd only add one more bit: ", and so accept what happens. It can be hard but then that makes the good times more worth celebrating."

 

[Mr V]

I understand the anxiety. When I was 35 I almost didn't make it when my mitral valve repair failed after 4 days. I got to the point where I could not talk about what I went through without tearing up. When I saw my cardiologist for my first 1 year follow up he recommended I talk to my primary doc about my mental health. He diagnosed me with depression and started me on anti-depressants. It helped me get out of my funk and realize that God gave me a second chance and I should take advantage of it. I am now 61 and own the muscle car I always hoped to have. I have 5 grandchildren with a sixth on the way. In a few years I hope to retire and spend more time traveling and cruising around in my Camaro. I am looking forward to 70 as at that time I will have lived longer with my St Jude valve than without it. Stay strong and good luck.

 

[ATHENS1964]

https://www.news-medical.net/news/2...ampaign=cardiology_newsletter_6_december_2022

 

[Dcano1007]

Thank all contributing members for this post, gives me hope and kind of made my Friday a little better than it already was.
I just celebrated 5 years since my St Jude mech implant, I didn’t know that I would be here today but neither did I care prior to having children.

Now I have 3 kids that I would also like to see grow and develop into good members of society, I don’t dwell on the fact that I may not be around to see that happen but I do act as if today were my last day with them, technically it can be, for many different reasons not just for the significance of my cardiac history.

The best thing about coming close to death as I did is that you learn to prioritize what is truly beautiful and valuable.

Congrats to the original poster on your 10 years, may you be blessed with many more healthy years to see your boy grow.

 

[ValveAdmin]

Thank all contributing members for this post, gives me hope and kind of made my Friday a little better than it already was.
I just celebrated 5 years since my St Jude mech implant, I didn’t know that I would be here today but neither did I care prior to having children.

Now I have 3 kids that I would also like to see grow and develop into good members of society, I don’t dwell on the fact that I may not be around to see that happen but I do act as if today were my last day with them, technically it can be, for many different reasons not just for the significance of my cardiac history.

The best thing about coming close to death as I did is that you learn to prioritize what is truly beautiful and valuable.

Congrats to the original poster on your 10 years, may you be blessed with many more healthy years to see your boy grow.

Hey, congrats to you too!

 

[Vinrics]

I am forever grateful to read the above posts. Like you Leon, I’m 33 going on 34 and heading for my second OHS at the end of January for a mechanical valve. I too think about life and life expectancy and it brings me joy to read other people living normal lives well after surgery.

 

[Warrick]

My father had a St Jude implanted when he was 42 and it was still ticking when he passed last year at 78 from unrelated causes.
So they do last a lifetime.