New Member Dfw area - St. Jude Valve

[JDSif]

I've had 3 open heart surgeries. All done at Tx Children's Hospital in Houston, Tx. All were done by Denton Cooley and Charles Mullins was my Cardiologist there.

Surgeries
Patent Ductus - 1970 (2 years of age) Was open heart surgery then
Coarctation of Aorta - 1973 (5 yrs of age)
Aortic Valve Replacement (19 years of age) St Jude Valve

The St. Jude valve has lasted me 36 years so far. Cooley did say that it would last me a lifetime. You have to be on Warfarin and get it check because it could change a little depending on things that you eat. I'm very fortunate that I haven't had any problems. If anyone has any questions please don't hesitate to ask.

 

[HokieHaden]

Thanks for sharing your experience, and I’m sorry you’ve had to endure 3 OHSs (though you certainly sound like you’re doing well).

I’ll take you up on the offer. I’m scheduled for SAVR (OHS for valve replacement and aortic aneurysm repair) on Oct 25, and I’m really torn about whether to take the On-X mechanical or bovine tissue replacement valve. Since you have been on warfarin for 36 years, I’ll consider you an expert. Is having a bad fall or accident and “bleeding out” (sorry to be extreme) an overblown fear I have? I mean, surely in 36 years you’ve had accidents or bad cuts. If I’m honest, this fear is what keeps me from easily choosing a mechanical valve, despite the guidelines saying it’s the right choice for a 49 year old.

For example - I solo road cycle 20-30 miles all the time. I’m seriously concerned about taking a spill, or worse getting hit by a vehicle, and being out there alone, and bleeding profusely.

Appreciate your insights and experience!

 

[HokieHaden]

I've had 3 open heart surgeries. All done at Tx Children's Hospital in Houston, Tx. All were done by Denton Cooley and Charles Mullins was my Cardiologist there.

Surgeries
Patent Ductus - 1970 (2 years of age) Was open heart surgery then
Coarctation of Aorta - 1973 (5 yrs of age)
Aortic Valve Replacement (19 years of age) St Jude Valve

The St. Jude valve has lasted me 36 years so far. Cooley did say that it would last me a lifetime. You have to be on Warfarin and get it check because it could change a little depending on things that you eat. I'm very fortunate that I haven't had any problems. If anyone has any questions please don't hesitate to ask.

Thanks for sharing your experience, and I’m sorry you’ve had to endure 3 OHSs (though you certainly sound like you’re doing well).

I’ll take you up on the offer. I’m scheduled for SAVR (OHS for valve replacement and aortic aneurysm repair) on Oct 25, and I’m really torn about whether to take the On-X mechanical or bovine tissue replacement valve. Since you have been on warfarin for 36 years, I’ll consider you an expert. Is having a bad fall or accident and “bleeding out” (sorry to be extreme) an overblown fear I have? I mean, surely in 36 years you’ve had accidents or bad cuts. If I’m honest, this fear is what keeps me from easily choosing a mechanical valve, despite the guidelines saying it’s the right choice for a 49 year old.

For example - I solo road cycle 20-30 miles all the time. I’m seriously concerned about taking a spill, or worse getting hit by a vehicle, and being out there alone, and bleeding profusely.

Appreciate your insights and experience!

 

[JDSif]

Thanks for sharing your experience, and I’m sorry you’ve had to endure 3 OHSs (though you certainly sound like you’re doing well).

I’ll take you up on the offer. I’m scheduled for SAVR (OHS for valve replacement and aortic aneurysm repair) on Oct 25, and I’m really torn about whether to take the On-X mechanical or bovine tissue replacement valve. Since you have been on warfarin for 36 years, I’ll consider you an expert. Is having a bad fall or accident and “bleeding out” (sorry to be extreme) an overblown fear I have? I mean, surely in 36 years you’ve had accidents or bad cuts. If I’m honest, this fear is what keeps me from easily choosing a mechanical valve, despite the guidelines saying it’s the right choice for a 49 year old.

For example - I solo road cycle 20-30 miles all the time. I’m seriously concerned about taking a spill, or worse getting hit by a vehicle, and being out there alone, and bleeding profusely.

Appreciate your insights and experience!

 

[JDSif]

First and foremost sorry you have to go through this. Secondly the doctors are the experts and I believe they know what’s best for you. Share your concerns with them and see if they still agree. I used to play Softball a lot as a younger male. Would always have scrapes and bruises longer than the normal person. I do sometimes have bruises show up and I have no idea how I got them. Probably my worse time I bled was when I was younger and got a deep cut from shaving. I missed all my morning college classes because I just couldn’t stop it bleeding. It just wasn’t clotting but it wasn’t like I was bleeding all over the place. Share your concerns and trust the experts. Have faith in the doctors and surgeons. I think once you share your concerns maybe they can talk you through why they think it’s best. Good luck.

 

[dick0236]

I've had 3 open heart surgeries. All done at Tx Children's Hospital in Houston, Tx. All were done by Denton Cooley and Charles Mullins was my Cardiologist there.

Welcome to the forum. Your experience, especially with parents with children, will be invaluable to help ease their fears.

...........Is having a bad fall or accident and “bleeding out” (sorry to be extreme) an overblown fear I have? I mean, surely in 36 years you’ve had accidents or bad cuts. If I’m honest, this fear is what keeps me from easily choosing a mechanical valve, despite the guidelines saying it’s the right choice for a 49 year old.

I've heard this "bleeding out on warfarin" term used over the years but have never known it to happen. It is more likely that the trauma of a seriously bad accident will kill a person, not an anti-coagulant. I have had 15-20 stitches to my head from a metal ceiling fan while putting up ceiling tiles, and 50-60 stitches to my hand after cutting myself with a box cutter while regripping golf clubs without any danger of "bleeding out". Only three months ago I slipped and fell down a grass bank and broke three ribs.......and didn't even bruise.

The only issue with warfarin is "can the valve patient responsibly take the warfarin" The serious issue with warfarin is a compliance issue. Warfarin must be taken as prescribed and routinely tested every week or two. If you can walk and chew gum at the same time, you can handle warfarin. The reward of the mechanical valve is that you probably will never need another surgery...........and that is a very good thing

 

[pellicle]

For example - I solo road cycle 20-30 miles all the time. I’m seriously concerned about taking a spill, or worse getting hit by a vehicle, and being out there alone, and bleeding profusely.

Appreciate your insights and experience!

my bruising is getting worse, but then that could be just me getting older or having better accuracy with walking into tow bars and what not.

I've not noticed any significant difference in bleeding, indeed even my dentist remarks that if he didn't know I was on warfarin then he'd never suspect because my gums don't bleed any more than "normal people".

I hear all sorts of stuff from people including having a nurse snatch a razor off someone because "you can't do that now you're on warfarin".

Its the people that know least, have never been on it and had the least daily experience with it who seem to have the most exaggerated beliefs. Meanwhile those of us who're on it for many years (**** is like 56 years, I'm only a toddler wit 12 years) just don't know what they're talking about.

The "bled out" thing is a running gag here if you ask me.

 

[pellicle]

The only issue with warfarin is "can the valve patient responsibly take the warfarin" The serious issue with warfarin is a compliance issue.

this

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068890/

https://pubmed.ncbi.nlm.nih.gov/17296877/

I can only imagine why its so bad, but it is.

 

[pellicle]

Cooley did say that it would last me a lifetime

I love that "life time warranty" stuff ... cracks me up every time. My surgeon said that about my aneurysm repair ;-)

Glad you're still here. You started your surgical career a bit earlier than me, I had my first OHS at 5, but didn't get a mechanical valve on OHS #2. Given that was in 1992 I'm sort of glad that I didn't start my warfarin career then, as INR measurement wasn't the simple finger prick it is now.

Best Wishes for many more anniversaries

 

[pellicle]

Some quotes from here involving bleeding out.

Thank you Freddie and Scott. It's so nice to know that someone understands and I am not alone in this new venture. When you first start this journey, you have the notion that if you go in and the INR is too high, you're gona bleed out on the spot or have an immediate clot if it's a little too thick. I am going to try to relax .

I'm totally slack about my testing but when I do test I'm between 2.8 and 3.2. (Except for the week when I washed my warfarin down with grapefruit juice and hit 9.0! I still didn't bleed out and the nurse who took my blood was surprised to hear I was on warfarin, cos the needle stick area didn't bleed excessively.)


This evening I took my INR and it was 3.2, after which I slipped in the rain and landed on my arse, driveway first. I've been waiting patiently to bleed out, but nope.
I too have a clapping monkey with cymbals in my chest.

FYI I've got a mech valve too and I recently took up mountain biking, fall off frequently, and have yet to bleed out, or even bleed very much.

Richie, I have (had) a BAV with associated aortic dilation diagnosed 14 years ago (aorta 46mm at the sinus in 2002), and I was very active tracking a variety of cars, so maybe this will help you make your own decision. ... s far as I'm concerned, it's not the G-forces or anything during 'normal' on-track driving; it's what happens if / when there is a mishap (which may not be my fault at all): I didn't want a relatively minor, survivable, crash to lead to dissection (or worse), and I don't want to bleed out.

I’m glad you’ve had a good experience. I’ve had a few docs and NPs who don’t know 5hit about warfarin dosing cavalierly dispense braindead advice. And one time a pharmacist (new, i presume) wouldn’t dispense my refill script without calling and confirming it — I take about 15-17mg a day and she seemed to think I was going to bleed out right in front of her

Basically if you're not elderly (more prone to bleeds anyway, so who knows if warfarin makes such a difference there) you're probably ok with most normal activities.

 

[Superman]

Thanks for sharing your experience, and I’m sorry you’ve had to endure 3 OHSs (though you certainly sound like you’re doing well).

I’ll take you up on the offer. I’m scheduled for SAVR (OHS for valve replacement and aortic aneurysm repair) on Oct 25, and I’m really torn about whether to take the On-X mechanical or bovine tissue replacement valve. Since you have been on warfarin for 36 years, I’ll consider you an expert. Is having a bad fall or accident and “bleeding out” (sorry to be extreme) an overblown fear I have? I mean, surely in 36 years you’ve had accidents or bad cuts. If I’m honest, this fear is what keeps me from easily choosing a mechanical valve, despite the guidelines saying it’s the right choice for a 49 year old.

For example - I solo road cycle 20-30 miles all the time. I’m seriously concerned about taking a spill, or worse getting hit by a vehicle, and being out there alone, and bleeding profusely.

Appreciate your insights and experience!

I’ve done several 30+ mile rides this summer. Topped it off with a 64 mile tour last weekend. Honestly, warfarin never crossed my mind other than to take my daily dose before we hit the road. I have more trouble with leg cramps than anything warfarin related.

I’ve been on it for 33 years, coming up in November.

 

[Superman]

I've had 3 open heart surgeries. All done at Tx Children's Hospital in Houston, Tx. All were done by Denton Cooley and Charles Mullins was my Cardiologist there.

Surgeries
Patent Ductus - 1970 (2 years of age) Was open heart surgery then
Coarctation of Aorta - 1973 (5 yrs of age)
Aortic Valve Replacement (19 years of age) St Jude Valve

The St. Jude valve has lasted me 36 years so far. Cooley did say that it would last me a lifetime. You have to be on Warfarin and get it check because it could change a little depending on things that you eat. I'm very fortunate that I haven't had any problems. If anyone has any questions please don't hesitate to ask.

Welcome. Aside from the very early surgery you had, our stories aren’t too far off. I was followed very closely growing up and had my St Jude valve installed when I was 17. 19 years after that I had an aneurysm repaired. That’s been 14 years ago now. So 33 years (nearly) of ticking and taking warfarin.

 

[treichert0312]

I got two century rides in this summer, no bleeding out. I take my weekly finger pinprick for the INR test and the bruise takes a day or two to disappear. I took the pig valve first, 2014, with the thought of the easy TAVR after that valve stopped working- no guarantees- my pig valve broke 2022 so then I needed to go mechanical. Oh well.
Others on this site have made it much longer with the bio valve but not me.
I some days wake up and realize I forgot to take my warfarin pills last night, so take them in the morning and everything seems ok.
“Overblown fear” did drive me to select bio valve first. I found this after my mechanical valve replacement and it alleviated that fear. I had considered life over and was resigned to walking in bubble wrap - UNTRUE! I ski my *** off, run, cycle etc and find myself free to live fully. Two months for the broken bone to heal - that was my experience - then all good.

 

[Chuck C]

I hear all sorts of stuff from people including having a nurse snatch a razor off someone because "you can't do that now you're on warfarin".

That was me and that really happened. Day 5 in the hospital after my valve surgery. Nurse shift change is 7am and at about 6:45am the night shift nurse asked me if there was anything she could get for me before she leaves. "Sure, a razor would be nice." I was starting to look a little cavemanish after 5 days without a shave.
Well, the day shift nurse comes in, sees the razor and confiscates it, lecturing me that I must never shave again, now that I am on warfarin. Later that day I had my wife sneek one in for me anyway

 

[Chuck C]

Welcome to the forum JDSiF

The St. Jude valve has lasted me 36 years so far.

Excellent! I had my St Jude put in at age 53, so 36 years would take me to 89. But, I'll need to live to 109 just to match ****'s record!

 

[pellicle]

That was me and that really happened.

I was pretty sure it was, but I didn't want to name you and drag you into the fray by force.

;-)

BTW @JDSif "naming" is done by typing an @ symbol, then following directly (without space) the first few letters of the users name ... a dropdown appears and you click the name (saving you typing all of it). Naming (as also does replying) causes a notification to be sent to the named (or the person you are replying to). This is the best mechanism for getting the attention of someone if you are asking a question which you wish to direct to someone specifically.

Just FYI ;-)

 

[V__]

Well, the day shift nurse comes in, sees the razor and confiscates it, lecturing me that I must never shave again, now that I am on warfarin.

It might be a generic policy with "bloodthinners" in the hospital. I was never on warfarin, but had regular heparin shots (*). So the policy was no sharp razors (electric shaver was ok), and no floss even (waterpick was ok).

(*) It seems, the point was to avoid the blood clots. Which are more likely to form with low physical activity. The walking was very helpful, but not high enough volume back then.

 

[pellicle]

and no floss even (waterpick was ok).

Madness

 

[carolinemc]

It might be a generic policy with "bloodthinners" in the hospital. I was never on warfarin, but had regular heparin shots (*). So the policy was no sharp razors (electric shaver was ok), and no floss even (waterpick was ok).

(*) It seems, the point was to avoid the blood clots. Which are more likely to form with low physical activity. The walking was very helpful, but not high enough volume bacW

It might be a generic policy with "bloodthinners" in the hospital. I was never on warfarin, but had regular heparin shots (*). So the policy was no sharp razors (electric shaver was ok), and no floss even (waterpick was ok).

(*) It seems, the point was to avoid the blood clots. Which are more likely to form with low physical activity. The walking was very helpful, but not high enough volume back then.

Blood thinners are not just for those with mechanical valves, it is also used to control clots with people who have had heart attacks or strokes on a short time limit.

 

[V__]

Blood thinners are not just for those with mechanical valves, it is also used to control clots with people who have had heart attacks or strokes on a short time limit.

Yes, of course. I never said otherwise.

Can add AFib to the list...