Mechanical Valvers, how old is yours?

[AmyBL]

Hi,

I had my mechanical valve (19mm St Jude) for 34 years (I was almost 4 when I had it done). I had a congenital defect-hole in heart that needed repairing and then once I was opened up they realised the valve had prolapsed. They were going to wait until I was 10 but it then very quickly became a ‘we must replace the valve now’ moment. This resulted in 3 surgeries in 10 days for a tiny almost 4 year old.
I’m currently waiting for the call to have it replaced-growing into an adult and a pregnancy has taken its toll. Could be any time now-once Covid allows!
Life on warfarin has not been an issue and I will be requesting another mechanical as it has always served me well. Warfarin has not stopped me doing anything I wanted. I was on tinzaparin injections twice daily whilst pregnant but apart from that, it’s been pretty straight forward.

Wow! You were so small & young when you had your surgeries. That must have been terrifying for your folks and you, although at four, could you fully understand? Also, I would have thought that a valve that would fit on a small person’s valve wouldn’t fit an adult sized heart.
Thank you for participating in the research. That will help so many folks in the future.

 

[flex131]

How long you had the MV for (when)? St. Jude AVR - 25 years - I am 47.
Why did you get the MV (disease, congenital, emergency)? Born with a leaky Aorta Valve. Got lucky how they discovered it.
What is life on warfarin like? Nothing changed. Played all sports but paid the price when I got hurt. (Very Lucky)
Ever had a "significant event" (thrombosis, bleed) ? 2 Events both caused for not doing monthly blood work.
1- Blood clot, lost temp eye vision from one eye while playing flag football. Ended in Emergency getting injected to get INR high again. It was very low.
2- Playing Volleyball, got hit in the thigh by another payer. INR was to high major bleeding in muscle, again Emergency room to lower INR.
Both event where in my mid 20s, I didn't take it serious. I though i was invincible. Since both event I always do monthly blood work. No issue since then.
Ever had to have a redo or repair? Thank god, No

 

[vitdoc]

38 years on wafarin and with only 1 event.. sounds pretty good
So you had to change the mechanical valve? Was that due to scar tissue formation? Aneurysm?

I had a tissue valve first which lasted 5 1/2 years then the St. Jude. It was fine when I had my aneurysm repair but as we have talked about it is easier and safer to put in a combined valve and aortic conduit since they come connected then trying to hook a conduit to an already in place valve. And at age 57 the surgeon said you really don't want a fourth open heart so we went with another mechanical. (TAVR in 2006 was not yet an issue). Also as I have said every procedure including TAVR has risk so as a general rule fewer procedures the better. So yes would I like not to be on warfarin sure. But would I want multiple procedures to avoid warfarin no.
Like my new picture of me in front of Edwards Lifesciences on a bike ride? Manufacturer of the first major mechanical valve, the Starr-Edwards circa 1960. See Dick0236.

 

[tom in MO]

1. My St Jude mechanical valve is 16 days old
2. Life on warfarin- wild for me during the first few days after release from the hospital, as they missed the fact that one of my meds they sent me home with, amiodarone, interferes with the uptake of warfarin such that warfarin has almost double its normal effect. INR went to 9.7, then after treated with Vitamin K and k2 down to 1.6. Other than that, life is great on warfarin. Seriously, it is stable now and I don't think it will have any major impact on my life. I will home monitor.
3. BAV, and severe aortic stenosis
4. Significant event? Well, it's only been 16 days but nope.
5. No repairs

Sounds to me you are the victim of malpractice. Assuming you told your doctor you were on amiodarone, at a minimum you might want to replace the doctor who prescribed the med that led to a 9.7 INR

How long you had the MV for (when)? 8 years
Why did you get the MV (disease, congenital, emergency)? BAV
What is life on warfarin like? Good except I cannot take NSAIDS for arthritis except at OTC doses for no more than a few months.
Ever had a "significant event" (thrombosis, bleed) ? When I had TURP surgery on my prostate, it took extra time for the prostate to heal (scab over and stop bleeding) due to the higher INR. It was insignificant.
Ever had to have a redo or repair? No

 

[Chuck C]

Sounds to me you are the victim of malpractice. Assuming you told your doctor you were on amiodarone, at a minimum you might want to replace the doctor who prescribed the med that led to a 9.7 INR

It was a nurse practitioner. She missed it, as did the pharmacist. I have written them a letter about it, in the survey I was given from the hospital, encouraging them to pay closer attention to this interaction.

 

[LondonAndy]

• How long you had the MV for (when)? September 2014 (6.5 years)
• Why did you get the MV (disease, congenital, emergency)? Emergency in the end - was due to calcification, surgeon suggested combination of insulin and a statin for over 20 years had caused the calcification
• What is life on warfarin like? No bother, though I keep a supply of assorted plasters, bandages and more just in case! Test weekly with a CoaguCheck XS. Drink randomly but moderately - dose the diet, not the other way round!
• Ever had a "significant event" (thrombosis, bleed) ? No
• Ever had to have a redo or repair? No

 

[Meanjellybean]

This is all so very encouraging!

 

[sangfroid]

St Jude, 22 years and counting. Warfarin management easy with CoaguChek. It was a hassle with hospital labs prior to home monitoring. Thank you Roche.

 

[pellicle]

This is all so very encouraging!

I often wonder why despite many people reporting this and many scientific studies showing the evidence why so few are willing to believe this simple fact but yet so many believe in magic and other unsubstantiated fluff ... weird

we drive over bridges and never give a thought to the engineering legacy that got us there ... but "fears and prayer" seem human nature.

 

[Meanjellybean]

Results that are holding true to their design and purpose are encouraging.. the uncertainty of the valve and its durability was not in question as talking about the design and engineneering factors.. it was more the encouraging fact that people can have the mechanical Valve for so long with very little or no significant events. And when an event such as a stroke did occur it was usually temporary and had the possibility of being avoided with more rigorous INR measurements.

 

[pellicle]

so long with very little or no significant events. And when an event such as a stroke did occur it was usually temporary and had the possibility of being avoided with more rigorous INR measurements.

well the time in theraputic range is the gold standard for predicting events.

I don't want to be booring but the evidence is pretty compelling

and should be more compelling than our anecdotes. Which of course are nice too, but are simply a puny sample compared to

"Optimal level of oral anticoagulant therapy for the prevention of arterial thrombosis in patients with mechanical heart valve prostheses, atrial fibrillation, or myocardial infarction: a prospective study of 4202 patients."​

I am what some would call a Doubting Thomas ... I want the hard evidence, not the stories.

 

[Eva]

I had both the Aortic and Mitral valves replaced in 2008
What is life on warfarin like? Ok
Ever had a "significant event" (thrombosis, bleed) ? None
Ever had to have a redo or repair? No, and I hope none will be needed

 

[OMG]

Hi all,

Thought it may be a cool idea to get a new thread dedicated to those with mechanical valves specifically and give some feedback on:

16 years st judes aortic How long you had the MV for (when)?
congenital bicuspic; left ventricle got too big, so cardio recommended to OP. Why did you get the MV (disease, congenital, emergency)?
normal; What is life on warfarin like?
NO Ever had a "significant event" (thrombosis, bleed) ?
NO Ever had to have a redo or repair?

Appreciate all posts as this may help shed some light on what life is like with a Mechanical valve. It always seems so poorly represented in journal articles for some reason.

 

[pellicle]

Appreciate all posts as this may help shed some light on what life is like with a Mechanical valve. It always seems so poorly represented in journal articles for some reason

Probably because of:

1. Lack of repeat business
2. Patients can be morons and fail to comply with warfarin therapy

. A study showed that up to 92% of the patients could not adhere to warfarin therapy and had under anticoagulation control.

https://www.sciencedirect.com/scien...arin is,and had under anticoagulation control.

 

[egar]

A study showed that up to 92% of the patients could not adhere to warfarin therapy and had under anticoagulation control.

Wow, 92%, I don't understand that at all. This is necessary to assure our health and failure to manage your warfarin properly has a direct correlation to negative outcomes. I've always joked that 50% of people are below average. Now I think the number below average is much higher.

 

[caro]

Hi!

I’ve had my on-x for 14 months. Congenital BAV (found out from a TEE I actually had a Unicuspid valve). Diagnosed with it in high school. 31 now. Warfarin is fine. Helps to set a daily alarm (or two!) on your phone for a reminder if you need to in addition to pill box. Test at home weekly with coaguchek. No “significant events.” No redo or repair.

 

[pellicle]

Now I think the number below average is much higher.

I fully agree.

To me what this shows is how robust the mechanical valve is that with such compliance the stats aren't worse.