mechanical or tissue valve and an active lifestyle?

[Yanina]

Hello, I am new to this forum but not new to heart valves. I was born with aortic stenosis/insufficiency. Did not have valve replacement until 1996 when I was 37 yrs old. I am now 65 and still doing the coumadin with the mechanical heart valves. These are St Jude Carbon valves. Does anyone else have that type? If so how long have you had them?

 

[Chuck C]

Welcome to the forum Yanina. We look forward to your valued contributions.

I also have a St Jude aortic heart valve, put in place about 2.5 years ago. Been on coumadin and still live a very active life. In fact, I boxed 9 rounds of boxing this morning.

So, am I understanding your post corrently, that you are about 27 years into your St Jude mechancical valve?

 

[dick0236]

These are St Jude Carbon valves. Does anyone else have that type? If so how long have you had them?

Welcome Yanina. I don't have a St. Jude but I also have an old valve. Mine is a Starr-Edwards mechanical that is 56 years old. If you are like me you can learn much from this Forum......I know I did even tho I didn't find this Forum until 40 years after my surgery.

 

[Yanina]

Welcome to the forum Yanina. We look forward to your valued contributions.

I also have a St Jude aortic heart valve, put in place about 2.5 years ago. Been on coumadin and still live a very active life. In fact, I boxed 9 rounds of boxing this morning.

So, am I understanding your post corrently, that you are about 27 years into your St Jude mechancical valve?

Yes I have had them for 27 years. It will be 28 yrs on Valentines Day 2024. A friend of mine had his Aorta Valve replaced approximately 2-3 years prior to me having mine done, but I didn't know him yet. He made it 20yrs. So I feel blessed. I was told that these valves had a life expectancy of 15-25 years is what they projected when this type first came out.

 

[Yanina]

Welcome Yanina. I don't have a St. Jude but I also have an old valve. Mine is a Starr-Edwards mechanical that is 56 years old. If you are like me you can learn much from this Forum......I know I did even tho I didn't find this Forum until 40 years after my surgery.

Wow that is amazing! My concern was and is the long term affects of coumadin. I do have a liver panel blood draw annually and function is good. Are you doing the home metering INR?

 

[pellicle]

Hi
Yanina

My concern was and is the long term affects of coumadin

After well over 60 years and Millions of people we can safely say there are no clearly demonstrated long term effects from warfarin.

Manage it well and there aren't even short term ones

Best wishes

 

[Chuck C]

I was told that these valves had a life expectancy of 15-25 years is what they projected when this type first came out.

Since they are mechanical valves, they would be expected to last the rest of your life. See 30 year study on St Jude mechanical valves, aortic and mitral.

"There was no incidence of structural valve deterioration observed in either group. In the AVR group, 30-year actuarial freedom from reoperation was 92% ± 2% and cumulative 30-year freedom from reoperation was 94% ± 1%. In the MVR group, the 30-year actuarial freedom from reoperation was 85% ± 5%, and cumulative 30-year freedom from reoperation was 93% ± 1%"

https://www.jtcvs.org/article/S0022-5223(18)32341-9/fulltext

 

[dick0236]

Wow that is amazing! My concern was and is the long term affects of coumadin. I do have a liver panel blood draw annually and function is good. Are you doing the home metering INR?

I have a blood panel drawn annually that measures various functions. Nothing indicates any "out of range" functions, including the Liver, have shown up. That was also a concern I had based on "stuff" I had heard over the years. I also have a full head of hair.....another "old wives tale" about warfarin(coumadin) causing hair loss.

I did "home testing" for about 10 years through a remote INR lab administered by Coagucheck Patient Services.....and loved it. Coagucheck closed their lab and transferred me to a remote lab that was terrible. My PCP has an "in-house" lab that is very convenient, easy to work with, and efficient, so I probably will stay with their lab. They actually have a "drive-thru" service where you drive up, stick your finger out of your car window, and get the finger stick.

 

[ashadds]

Yes I have had them for 27 years. It will be 28 yrs on Valentines Day 2024. A friend of mine had his Aorta Valve replaced approximately 2-3 years prior to me having mine done, but I didn't know him yet. He made it 20yrs. So I feel blessed. I was told that these valves had a life expectancy of 15-25 years is what they projected when this type first came out.

did your friend have his for 20 years ? Did he need to replace it ?

 

[pellicle]

Did he need to replace it ?

basically these never need to be replaced even though they are. Something else (other than the actual valve) drives the replacement.

For instance these valves can get clagged up with blood clots if the patient fails in a repeated way to adhere to their anticoagulation therapy. Even this however is not sufficient with

• modern procedures using tPA to disolve (break the molecule chains of Fibrin)
• some people having decades of non-compliance

The usual reason however is that something else drives the need for an OHS. For instance in 2010 it was identified that I had developed an aneurysm. This triggered a surgery (on a relatively urgent time scale) and my valve (which wasn't a mechanical) was replaced along with my section of aortic artery.

So more or less when you get one of these they're in there for life. This is in stark contrast to such a replacement with a tissue valve where its expected to need some sort of surgical intervention unless you are old when you get it in the first place (old means more than 60). Some lucky outliers win the valve duration casino bet and get 20 years, meanwhile people under 50 seldom get 15, others even less than 5.

This is well established after something over 50 years of global surgical data.

 

[ashadds]

basically these never need to be replaced even though they are. Something else (other than the actual valve) drives the replacement.

For instance these valves can get clagged up with blood clots if the patient fails in a repeated way to adhere to their anticoagulation therapy. Even this however is not sufficient with

• modern procedures using tPA to disolve (break the molecule chains of Fibrin)
• some people having decades of non-compliance

The usual reason however is that something else drives the need for an OHS. For instance in 2010 it was identified that I had developed an aneurysm. This triggered a surgery (on a relatively urgent time scale) and my valve (which wasn't a mechanical) was replaced along with my section of aortic artery.

So more or less when you get one of these they're in there for life. This is in stark contrast to such a replacement with a tissue valve where its expected to need some sort of surgical intervention unless you are old when you get it in the first place (old means more than 60). Some lucky outliers win the valve duration casino bet and get 20 years, meanwhile people under 50 seldom get 15, others even less than 5.

This is well established after something over 50 years of global surgical data.

this man hit the lottery

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10449611/
A bio prosthetic tissue valve on a 33 year old patient lasting 42 years

 

[pellicle]

this man hit the lottery

he sure did, I bet he's been studied quite a bit to try to work out why:

From that article

Our case report focuses on a 76-year-old patient who had undergone an AVR with a bioprosthetic valve at the age of 33, which has still not demonstrated any valve deterioration. As the longest known case of bioprosthetic durability, this patient provides useful data for designing bioprosthetic valves more resistant to structural degeneration and thereby better suited to younger patients or those at higher risk of bleeding.​

as you probably know (having researched to even find that), such is by far not the norm.

Myself I am part Irish, so I believe in the principle of "what can go wrong will go wrong"

Thus I developed and honed my INR management process, because those statistics are also well known too.

PS: a good example of "patients ... at higher risk of bleeding" would be Harriet (a member here) who should never have been approved for a mechanical valve

 

[Standardvelocity]

That is incredible, it must have been made from the pig’s nose.

 

[dick0236]

That's a long time. He must be doing something right!

I had a friend who received, what he called, a Pig Valve in his early 30s that lasted 30+ years and was replaced with a mechanical valve in his mid-60s that lasted until he passed in his 80s. He died of cancer complicated by a dental infection after having several teeth removed for "dental implants".......and not heart-related.

 

[pellicle]

I had a friend who received, what he called, a Pig Valve in his early 30s that lasted 30+ years

So much for all the modern treatments...

 

[carolinemc]

I have a blood panel drawn annually that measures various functions. Nothing indicates any "out of range" functions, including the Liver, have shown up. That was also a concern I had based on "stuff" I had heard over the years. I also have a full head of hair.....another "old wives tale" about warfarin(coumadin) causing hair loss.

I did "home testing" for about 10 years through a remote INR lab administered by Coagucheck Patient Services.....and loved it. Coagucheck closed their lab and transferred me to a remote lab that was terrible. My PCP has an "in-house" lab that is very convenient, easy to work with, and efficient, so I probably will stay with their lab. They actually have a "drive-thru" service where you drive up, stick your finger out of your car window, and get the finger stick.

I go to the hospital one, that is also a cancer center and they work with me very well. If I am over 4.0, they send me to the regular lab for a blood draw from the arm and get results within two hours. Then we dose from that, otherwise they at the cancer center will do the draw from the finger and we get the results asap and dose accordingly. And they use Coagucheck also.

 

[sandpoet_1]

My doctor actually made the choice for me based on my age..I am 54 so they went with the mechanical. The Coumadin is a small price to pay. It makes sense. to me. The only thing that is irritating is the sound at times, but I have gotten used to it. They fully explained why that decision was made to go mechanical. I am now just getting back to exercising regularly...my concern is not the valve. It is getting my body used to the ranges of motion again..

I got a St Jude mechanical in 2008(twice) went back to vigorous exercise 4 months post discharge. I lift weights, hike and/or walk 5-10 miles per week. The valve clicking sound is not even noticed anymore. It will be 16 years post surgery March 18. I ended up with Afib after surgery, which cardioversion didn't resolve. I inquired into ablation, but the cardiologist informed me it would likely be unsuccessful due to my heart remodeling after several years. I have an athletes heart and have never experienced tachycardia, but resting pulse has gone as low as 30 on occasion, a condition my cardiologist is not worried about unless I am lightheaded or fatigued. She said I may need a pacemaker in my mid 70s, but the newer ones are tiny and implanted through the femoral artery, so as not to be concerned about major surgery or cosmetic scars.

 

[sandpoet_1]

When my second aortic mechanical valve was placed, my surgeon, Dr Miller told me my range with this Carbomedic top hat valve was good at 2-3, and he said he wouldn’t worry if my INR went down to 1.8. I had bacterial endocarditis with a subarachnoid haemorrhage before that surgery. I think he was trying to keep my INR low because of that. However, when I went into chronic a fib 5 years after surgery, my cardiologist upped my range to 2.5-3.5 where it remains. I tried to keep my INR at 2-2.5 after my surgery but that range is very difficult to keep imo.
The last 3 mos my actual test range has been 2.6-3.9, only out of range high twice. Pretty stable!

We had the same health problems: Endocarditis which destroyed my aortic valve requiring 2 surgeries(original and redo). I also had a brain bleed and a mycotic subdural hemorrhage in my right frontal lobe requiring a craniotomy. My INR range is 2.5-3.5, which I try to keep on the high side due to potential clotting on the valve. When I visited a new cardiologist she asked if I was taking aspirin. I told her that my previous cardiologist advised against, due to my brain surgery and the clipped off blood vessel in my brain. She then said: don't take aspirin. I am surprised that this nationally known nuclear medicine cardiologist didnt review my records before seeing me. I think that conversation scared her into more thorough review of my medical history.

 

[bolligal]

Hello All!



RDish

Hi There,

I'm extremely active, compete in triathalons, kayaking, running, weight lifting, cross fit, daily workouts, high intensity. I used to play full court basketball in a very competitive, up tempo league, but unrelated to heart conditions and directly related to ankle issues, I switched to volleyball (sand) and love it.

Injuries post surgery: Nothing heart related, but I had a broken nose from basketball that had to be re-set twice, broken foot from basketball, several pulled muscles with heavy bruising. The only difference I noticed is more bruising than pre-surgery. Wasn't a problem.

I've had my mechanical valve for 13 years. I replaced it when I was 31, 44 now. I'm very happy with my choice. I've been on coumadin for 13 years of course, and still hopeful that eventually it will be a once daily pill with no testing, but honestly at home testing once every other week (takes 3 minutes) has been no issue at all. As many have said, I chose mechanical because the surgery at 31 doesn't scare you much, but I did NOT want to sign up for another surgery at 50 yrs/old, I wanted to be done with it and there is a long history of mechanical valves, so I knew it was a safe choice. I run faster, lift more, and am even more active now that I was when I was 30. Mechanical valve vs how I was pre-surgery is like night to day difference. If I had it to do all over again, I would pick mechanical again. The only other side effect that changed my life at all is that with coumadin you do have to watch alcohol intake. I wasn't a heavy drinker before, but I did (every once in while) over indulge, and with coumadin you really can't. I set a self imposed limit of 3 drinks for any evening event I attend now, and I know how to adjust my dosing accordingly to make sure it's not a problem. The reduction of alcohol which previously I considered as a negative has really turned out to be a positive as I haven't had a hangover in 13 years...!

Hope this helps,
AJ

 

[Chuck C]

I'm extremely active, compete in triathalons, kayaking, running, weight lifting, cross fit, daily workouts, high intensity. I used to play full court basketball in a very competitive, up tempo league,

Thanks for sharing your experience. It is important that people make informed choices, and dispelling popular myths is important. One of the biggest myths out there is that you can't be physcially active with a mechanical valve. When you made your choice, I'm curious as to the guidance that you were given. Did your cardiologist and surgeon inform you that you can still remain active with a mechanical valve? If so, good for them.

I set a self imposed limit of 3 drinks for any evening event I attend now, and I know how to adjust my dosing accordingly to make sure it's not a problem.

Interesting. I have had more than 3 or 4 drinks on a few occasions, and find that it hardly moves my INR at all- not enough to justify altering my dose- maybe like 0.1 or 0.2, if that. But, setting a limit of 3 drinks is probably a good idea for health in general, even if not on warfarin. I'm glad to hear that this limitation has had a positive result for you.