Longevity and quality of life

[JannerJohn]

Any long term ascending aorta, root and mechanical AVR survivors on here. I have stenotic BAV and root/ascending aorta aneurysm requireing surgery. My surgeon says the composite graft and mechanical valve should be for life (I'm 50 years old). Is this a realistic expectation or just what the surgeons say to not worry you. I have severe anxiety about the procedure and worry about the quality of life and limitations after such surgery. Advice and experience welcome thanks.

 

[Superman]

Oh, it’ll be for life alright! Cause, like, if it fails, you know....

Welcome to the community and pardon the gallows humor! We really are a supportive bunch who have many various life times of experience to share. Some of which you’ll relate to, and others you’ll just be in awe off (at least one member has a mechanical valve older than either of us).

Seriously though. What are you looking for in long term anecdotes? I’ve been mechanical for 30 years. Received my graft 11 years ago. I’m still two years younger than you are. So far so good. I still run or work out on the spin bike almost daily. Married with five kids. Have a couple dogs and a bunch of fish. Enjoy photography. Have a couple jobs.

Certainly not under any kind of constant worry over the durability of my parts. My human stuff will likely fail first.

 

[pellicle]

Married with five kids. Have a couple dogs and a bunch of fish. Enjoy photography.

Your told me you were single that night after the studio shoot... I knew it was too good to be true...

 

[Superman]

Your told me you were single that night after the studio shoot... I knew it was too good to be true...

I don’t think my being available would be too terribly exciting for anyone!

 

[bizinsider]

Any long term ascending aorta, root and mechanical AVR survivors on here. I have stenotic BAV and root/ascending aorta aneurysm requireing surgery. My surgeon says the composite graft and mechanical valve should be for life (I'm 50 years old). Is this a realistic expectation or just what the surgeons say to not worry you. I have severe anxiety about the procedure and worry about the quality of life and limitations after such surgery. Advice and experience welcome thanks.

I'm only about a year in but I the thing I keep saying in these forums is that if it wasn't for the souvenir scar, I wouldn't know I had so much tinkering done under the hood. My surgeon said I'm good for another 100k miles, and that is the point: We're like cars, and as we age they replace parts. Your apprehension/fears are real, but as you go through this forum and others you are likely to find that most people get/got on with their lives. One thing is for sure: You will get a bunch of different opinions and experiences, but if you are in halfway decent physical shape you should be fine. Positive emotional state going in, with a sense of humor, helps too! Cheers.

 

[dick0236]

Any long term ascending aorta, root and mechanical AVR survivors on here.

Hi JannerJohn. Glad to see you. This is a great forum for advice on living with an artificial valve. I have had my aortic mechanical valve for 53+ years.....same valve. I had an aortic aneurism diagnosed a couple years ago but declined surgery due to my age (mid 80s). If you are like most of us you will find the valve will little interfere with your life or lifestyle.

My surgical experience is so old I try to stay out of modern technological discussions......I hang around for support only. My only advice is "take your anti-coagulant drug as prescribed, test routinely....and live your normal life".

 

[tom in MO]

Any long term ascending aorta, root and mechanical AVR survivors on here. I have stenotic BAV and root/ascending aorta aneurysm requireing surgery. My surgeon says the composite graft and mechanical valve should be for life (I'm 50 years old). Is this a realistic expectation or just what the surgeons say to not worry you. I have severe anxiety about the procedure and worry about the quality of life and limitations after such surgery. Advice and experience welcome thanks.

The answer is "Your repair should last until you die of something else."

Your quality of life may be even better than it is now depending upon how much your problem has effected your body. Many people thought they didn't need the procedure but when their stenotic valve was removed a month or so later they saw an increase in physical ability and stamina..

Try not to worry about things that are totally out of your control. You need this procedure to live, the option is death. When it comes to hard decisions, rest easy knowing the decision is hard since both paths have merit, thus no decision is wrong.

 

[elMIguel]

Since being diagnosed with AS last month and discovering this board, it is a nightly ritual to read these postings until I drift off to a fitful sleep. Fitful though it is, it is less so thanks to all you regulars (and not so regulars) who chime in with the knowledge, compassion and support that can only come from someone who has been throgh this. Yes, I am still scared and overwhelmed but you all give me hope and I want to say thank you for that.

 

[pellicle]

Yes, I am still scared and overwhelmed but ...

It's all good. It's just a need for some new plumbing.

It's been 47 years since my fist OHS. Too many of my friends have died of cancer. We in contrast have a simple and well defined treatment.

Best wishes

 

[Sheenas7]

Best of luck to those going in for surgery. My mechanical heart valve is 20 years old. I am still doing fine. With the help of this board I switched to testing at home. Thankful for all the help I got from everyone. Tested yesterday at 2.8. Happy with that.
I also have a lead less pacemaker now since 2017. I think that worries me more because my prior pacemaker which had leads, failed, (the old lead failed) and it was an emergency since I am pacemaker dependent. It felt awful. I lost my sight (got my sight back thankfully) and it felt like the end. The new one is supposed to last 8 years and now I have 6 years left. That worries me more than the valve if you can believe it. One day at a time. It has made me afraid to travel abroad. I was back from Europe just two weeks when it failed. The battery was new but the wire was old. The electrophysiologist decided not to touch the old wire and just gave me a new battery when it was time...... but the wire was what failed to engage. The Medtronic lead less pacemaker was pretty new but ready in time for me. Since I had my new pacemaker at age 23, there were no more arteries to fill with leads. Also getting an old lead out is very dangerous. Anyway, I was lucky and I got my new lead less pacer before this old lead completely failed. It did cause me some trauma and now I have some fears to travel abroad and more aware of the fragility of life and mortality. Most days I try not to think about it. Of course traveling now is not an option anyway wit Covid.
Good luck to all my friends here.

 

[elMIguel]

Too many of my friends have died of cancer. We in contrast have a simple and well defined treatment.

So true.
Yesterday, a coworker and friend of mine lost her daughter in a traffic accident. No fixes for that.
Perspective.

 

[pellicle]

Yesterday, a coworker and friend of mine lost her daughter in a traffic accident. No fixes for that.

That's life changing, my condolences to the parents.
My friends mother was never the same after he died (21), I believe this sort of death is very hard to recover from.

 

[Paul Schur]

Any long term ascending aorta, root and mechanical AVR survivors on here. I have stenotic BAV and root/ascending aorta aneurysm requireing surgery. My surgeon says the composite graft and mechanical valve should be for life (I'm 50 years old). Is this a realistic expectation or just what the surgeons say to not worry you. I have severe anxiety about the procedure and worry about the quality of life and limitations after such surgery. Advice and experience welcome thanks.

I had the same diagnosis. I’m at almost 7 years with a mechanical valve. I was 52 at surgery. No issues with my valve. None. And I have no problems taking warfarin or maintaining my INR. I’ve become a master at knowing exactly what to do and eat if it goes to high or low. I was back at work in 3 months and traveling 6 months after that. I had real fears along the way, what happens to my valve when I fly, should I just plateau at the gym instead of adding too much weight when I bench press, etc. We work through those thoughts and fears; mine were short lived. For the record, I’ve had no issues with bleeding, etc. I haven’t even had a paper cut. For me a bigger life was on the other side. The mechanical valve was the best decision I could have made. I wish you the best of luck with your surgery.
Paul

 

[kimcdougc]

I had my aortic heart surgery in May of 2013. I have an on-x heart valve. There is nothing I can't do now pre surgery except I can walk and exercise without running out of breath. With my mechanical valve I only to have my inr between 1.5 and 2.0. I take less warfarin than those with a different model of heart valve. No restrictions. I test weekly at home. This forum was what kept me sane during my pre operation 7 years ago. Good luck with your surgery.

 

[pellicle]

Hi

I just wanted to reach out on this point

With my mechanical valve I only to have my inr between 1.5 and 2.0.

Firstly you need to be careful that you are also taking your aspirin. This was a part of the trial and a necessary component in the mix. The original trial (gov link) was structured with three study groups

There are three test arms of the study: low risk aortic valve replacement, high risk aortic valve replacement, and mitral valve replacement. Each arm has an equivalent control. ​

Test therapies are: ​

1. low risk aortic valve replacement - aspirin/Plavix,
2. high risk aortic valve replacement - Coumadin at INR of 1.5 to 2.0 plus aspirin, and
3. mitral valve replacement - Coumadin at an INR of 2.0 to 2.5 plus aspirin.

another aspect is of their methodology was weekly testing.

There is actually nothing specifically magic about the On-X other than (them being the new kid on the block, to get a leg into market share) they leaveraged off the idea that "their valve" was passed by the FDA for lower INR levels. Actually a number of studies have also shown this for the existing bileaflet pyrolytic carbon valves (such as the St Jude and the ATS {I believe now MedTronics} et al).

I understood that once a trial has completed and a FDA pproval granted that its uncommon for that to be revoked and requires an amount of evidence. There been a few cases of thromboembolism with On-X valves with one forum member following that low INR protocol having an issue Eg
https://www.valvereplacement.org/threads/failure-of-onx-valve-and-problems-with-lowering-inr.878615/
To add to this there are many cases of people having zero anticoagulation and surviving event free with all these valves for decades. Apart from the stars of that show Table 1 bears looking at too.

So what I'm saying is that its not a black and white thing but a continuum of things, like all "risk analysis" and that sometimes even the "nag" wins the derby. The statistical analysis of safety is well represented here:
http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415179

Why am I writing this? Well because while it matters not to my life what happens to others (who I don't know) we have a saying here (perhaps only among the veterans) that "its easier to replace blood cells than brain cells" and having a stroke is not an enhancement in quality of life.

So why would you bother having an INR of 1.5 (extremely difficult to be sure you aren't 1.3 even) when you can simply increase your INR into a region with the minimal known risks?

Unless its because you somehow think that your dose of warfarin is somehow a factor?

I take less warfarin than those with a different model of heart valve.

There is not any comprehensive study that correlates warfarin dose with any negative health outcome except a bleed if INR is too high. There are any number of Pharmaceutical companies who would be all over that were it correct because warfarin is cheap to make and nobody makes more money out of it than supermarket grade aspirin or paracetamol.

Anyway ... just in case you weren't aware I thought I should let you know that.

Please do keep up the aspirin especially if you want to hover under INR=2.

Best Wishes

 

[ATHENS1964]

And my low INR valve writes in their form. My cardiologist and my surgeon were adamant that I should be around 2.5, I do self-management and I feel good even if it shows a little more.

 

[Amy]

what happens to my valve when I fly,

What DOES happen to your valve when you fly? I'm considering a 15 hour, 2-day drive (under normal circumstances) (3? days on the way home) or a flight to have my AVR. I would really like to not do that (the drive) to my husband, I think.....

 

[dick0236]

What DOES happen to your valve when you fly? I'm considering a 15 hour, 2-day drive (under normal circumstances) (3? days on the way home) or a flight to have my AVR. I would really like to not do that (the drive) to my husband, I think.....

Years ago I was advised to not fly long distances that required sitting in a seat for a long time without moving around......I think that was to maintain blood circulation by forcing the heart to more rapidly beat and improve circulation. That may be "fact" or it may be an "old wives tale", I really don't know. I have flown many times since my surgery.......some internationally, requiring a dozen hours of flight time with no issues. To answer your specific question I have never heard of any effect on the valve itself.

I'd take the flight unless the doctors have strictly forbidden it for a medical reason.

 

[pellicle]

That may be "fact" or it may be an "old wives tale", I really don't know

Having done quite a few long haul flights (13 hours) I suspect that's the latter.
(Brisbane to Helsinki typically 10 then 13)

 

[Superman]

What DOES happen to your valve when you fly? I'm considering a 15 hour, 2-day drive (under normal circumstances) (3? days on the way home) or a flight to have my AVR. I would really like to not do that (the drive) to my husband, I think.....

We’ve driven all over the continental US. Michigan to Florida and back almost annually. Big circular drive through Ohio, up the east coast to Maine and back through Canada. Michigan to Denver to Utah to Los Angeles to Yosemite and back. Michigan to Yellowstone to Glacier and back. Longest single stretch ends up at roughly 22 hours if the kids need more breaks.

We’re heading to Florida for Spring Break and Utah this summer again.

My hips bother me far more than any Warfarin issues. Ankles and lower legs get a bit puffy these days too, but a good nights sleep and walking around fixes that.

When you fly, your valve ticks. At least mine does. But it also ticks when I don’t fly.