Need Help Choosing! 14 Questions For Those With Mechanical Valve + Warfarin

[csigabiga]

Hi everyone. Long time lurker, but now things have gotten real. I have crossed into severe aortic regurgitation and will need a surgery that replaces the aortic valve and likely part of the aorta as well (bentall). Aiming to be butchered in early 2023.

As seems quite common, I am having the Ross vs mechanical debate in my head.

Instead of engaging in the debate which has been debated to death, I’d like to ask those of you with a mechanical valve a few questions so I can get a better sense of life on warfarin and with the valve. Feel free to answer as much as you want / have time for. Maybe this can even be a useful resource for prospective surgery patients faced with the same choice in the future. Would appreciate any responses I can get here or in a similar ross thread I am making for those who had that procedure. Thanks in advance!

1. At what age did you get your mechanical valve?

2. How long did you have / have you had your mechanical valve for?

3. If your valve failed, what was the reason?

4. Do you self manage your Warfarin, or go to a lab?

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?

6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis daily, but once every week or 2 I enjoy a having most of a bottle of wine - or consuming an edible)

10. How often, if ever, is it necessary to go to the hospital for a fall or accident? Would you go if you fell skating or skiing? If you got hit in the head with a ball? What if you were in a car accident?

11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?

13. On a scale of 1-10, with 1 being miserable and 10 being happy, how happy are you with your choice for mechanical valve?

14. Would you recommend someone in my shoes get a mechanical valve? (39 years old, severe regurgitation, bentall needed, dilated annulus and LV, can probably self manage INR responsibly, otherwise healthy, likes to travel, hike, eat everything, drink and consume a bit of cannabis occasionally, likes silence and might be irritated by the clicking).

Thanks in advance to everyone for the help in advance

 

[Al3x]

Welcome! I'm happy to expand on any answers, but to keep it brief:

1. 35
2. 18 months
3. N/A
4. Self manage
5. 10
6. No
7. No impact, but antibiotics tend to spike INR so require dosage change.
8. Very easy. I've done it twice. Heparin injections aren't much fun and cause bruising, but it's no biggy.
9. Same advice as any foods (i.e dose your diet). I'm not a cannabis user so can't comment on that.
10. I've not had any hospital trips for this so far.
11. No limits. I do a lot of sport (mainly running and HIIT) and don't feel the need to hold back. For 6 months or so post surgery I was advised to keep below 150. My only concern with sports is the risk of head injuries so I don't ski anymore (although I know others do).
12. Yes, initially. Post surgical pain is the biggest initial barrier to sleep. 4 or 5 months later I was sleeping with no issues. The clicking no longer bothers me, although some people do comment on it.
13. 10
14. I don't have any regrets over my choice. I was put off Ross due to the enhanced operative risk and the fact that it interferes with a healthy valve. Most people will get used to the ticking.

Best of luck with your choice. It's not an easy one.

 

[pellicle]

1. At what age did you get your mechanical valve?

47

2. How long did you have / have you had your mechanical valve for?

I'm still wearing it 11 years later

3. If your valve failed, what was the reason?

never

4. Do you self manage your Warfarin, or go to a lab?

self manage, gave up on labs

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?

8 & no effect I can think of
(note, I have edited this answer please see my later post)

6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

no

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

not that I can think of ... and I was on antibiotics for nearly 10 years after my infection

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

I don't bridge I just manage around it (based on a colonoscopy and a foot surgery)

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis

measure, understand your reactions and manage based on data

10. How often, if ever, is it necessary to go to the hospital for a fall or accident?

haven't

Would you go if you fell skating or skiing?

I didn't ... and skiing not skating

What if you were in a car accident?

seriously ... ? if i'm in a car accident of fckuing course I'll go to hospital (or the mortuary) ... what the hell kind of question is this ... have you never been in a car accident?

I've been in rollovers and bad T-Bones ... all bets are off when you roll those dice, warfarin or no.

11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

I'm presently finding that if my HR goes over 160 I'm not far into that before I burn out (say, hill climbs on bicycle) ... YMMV

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?

nope and "getting used to it" is difficult to quantify. I actually credit my ability to know my HR at any time I choose to tune in with helping me identify a (possibly post covid symptom of) tachycardia which is now being appropriately treated with drugs (but could have been an unexplained death if I wasn't aware of my HR)

13. On a scale of 1-10 how happy are you with your choice for mechanical valve?

10

14. Would you recommend someone in my shoes get a mechanical valve? (39 years old, severe regurgitation, bentall needed, dilated annulus and LV, can probably self manage INR responsibly, otherwise healthy, likes to travel, hike, eat everything, drink and consume a bit of cannabis occasionally, likes silence and might be irritated by the clicking).

only if you take management seriously, and maybe consider giving up that weed (because it'll fck you up in the long run). If you at least take self management seriously then I'd anticipate that you'll be having better life span than if you didn't take up the new drug of warfarin because as you age

• chances are you'll get some arrythmia of some sort (more likely if you've had OHS or even valvular disease) and being on it is prophylactic (you know, like condoms) for a stroke (which I could have had by now with the tachycardia and ectopic beat madness of earlier in the year
• stats are that if followed long enough all other valve types (including ross) need ACT (anticoagulation therapy), especially in final stages
• you won't get DVT

I strongly advocate you to move away from a lifestyle that erodes your health and towards one that conserves what you've got. At 39 you've probably not yet realised that your health isn't 19 forever and that after 40 all that you can do is slow down the fall. Smoking weed isn't helping that (eventually booze will follow)

Best Wishes

 

[Superman]

1. At what age did you get your mechanical valve?

17 and 36, respectively (The suspense! Why two!?!)

2. How long did you have / have you had your mechanical valve for?

I’ve been clicking away for 32 years total.

3. If your valve failed, what was the reason?

My valve did not fail. I had an ascending aortic aneurysm show up when I was 36. They installed a one piece valve/graft conduit and upsized from 23 to 25mm’s. I’m confident the first would still be fine if not for the aneurysm.

4. Do you self manage your Warfarin, or go to a lab?

I home test, report results to a lab and we partner in any changes needed.

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?

8 or 9. It’s doing something vs nothing. Other than that, no big deal.

6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

No strokes. Had blood in urine once. Learned not to drink way too much cranberry juice. Wasn’t a big disruption.

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

Not limitations. Just care. I usually test more often and adjust my dose if I need a course of antibiotics or steroids or NSAIDs.

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

I’ve had a colonoscopy, another heart surgery, a vasectomy, gall bladder and appendix removed, all while on warfarin. I either lowered my dose or bridged as prescribed without issue. Doesn’t mean there can’t be issues. Just my experience.

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis daily, but once every week or 2 I enjoy a having most of a bottle of wine - or consuming an edible)

Don’t get fall down drunk and split your head open? I’m a very occasional drinker. More frequent when I was younger. I’ve also tried cannabis a few times when I was younger. Don’t recall any issues with warfarin management and don’t give it any thought if I have a cocktail or two these days.

10. How often, if ever, is it necessary to go to the hospital for a fall or accident? Would you go if you fell skating or skiing? If you got hit in the head with a ball? What if you were in a car accident?

Never for me. I dropped a big cabinet on my foot once. It turned a beautiful purple. I’ve gone skiing, mountain biking, road biking, etc without issue. Broke my thumb on a bike ride once. I went in because my thumb was broken, but not because of warfarin. I do always mention it if I go in though. They just note my chart. Nobody freaks out.

11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

I’m on metoprolol too. I top out at about 170 in an intense spin class or run if I push it up a hill. But I don’t hold back because of my valve. It’s just that that’s all I got.

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?

I don’t think so. But as a teenager I could sleep through the worst storms and wonder why trees were down the next morning. I’ve lost more sleep to babies.

13. On a scale of 1-10 how happy are you with your choice for mechanical valve?

Is 10 the happiest? I’ll give it an 8. I wish I didn’t have to make any choice.

14. Would you recommend someone in my shoes get a mechanical valve?

If I were in your shoes (and I was), it’s the choice I would make (and did). I can’t tell you what to do, and the recommendation business is fraught with liability (even if just guilt if you don’t end up happy).

BTW - I saw your Ross post but will of course leave that to the appropriate audience. Overall I really like what you’ve done here for both. They should be made sticky’s somewhere. Would you consider doing one for tissue valves? I’m sure you’d have to give thought to the questions, but others might benefit as well.

 

[Justmadi]

Still tickinAt what age did you get your mechanical valve?

60

2. How long did you have / have you had your mechanical valve for?

9 years

3. If your valve failed, what was the reason?

Still ticking

4. Do you self manage your Warfarin, or go to a lab?
I self manage with assistance from my doctor if needed.

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?
8-9
6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

I've had bleed due to getting food poisoning and not being able to eat. Since that I have self monitored.

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

not too much. I also have auto immune hepatitis. That limits me more than warfarin

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

no problem with bridging BUT be your own advocate when warfarin is re-introduced.

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis daily, but once every week or 2 I enjoy a having most of a bottle of wine - or consuming an edible)
Just monitor. I don’t drink much alcohol but have seen a slight rise in INR when I used to.

10. How often, if ever, is it necessary to go to the hospital for a fall or accident? Would you go if you fell skating or skiing? If you got hit in the head with a ball? What if you were in a car accident?
I’d probably be very careful and cautious with falls. Better to get checked out. I just tripped over my dog last week..banged my knee. It got a pretty good bruise but that’s all. Being on warfarin doesn’t mean you don’t coagulate at all. It just takes longer. Generally I put ice on bangs and bruises. It helps.
11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?
I’m one of those that hear my valve all the time. First year or so it was VERY aggravating. Now I barely notice. I just can’t sleep with my ear on the pillow.
13. On a scale of 1-10 how happy are you with your choice for mechanical valve?
10
14. Would you recommend someone in my shoes get a mechanical valve? (39 years old, severe regurgitation, bentall needed, dilated annulus and LV, can probably self manage INR responsibly, otherwise healthy, likes to travel, hike, eat everything, drink and consume a bit of cannabis occasionally, likes silence and might be irritated by the clicking). I would not presume to recommend for you. You’re young enough that a second surgery in 15 years should not be an issue, but there are no guarantees. mechanical valves have a very low fail rate.

Of the things you list that you like to do, the only item on your list that would be directly I pasted by warfarin May be the silence!!

 

[TeresaUK]

1. Age 46
2. 17 years ago
3. Bilateral valves/stenosis
4. Both
5. My INR is unstable so I have to test every week. Sometimes have to bridge. I find clexane bridging jabs (and the lumps they make )painful.
6. Both. Both were complications of emergency kidney surgery and clotting management.
7. My INR plummeted when I took up green tea instead of caffeine. I don’t feel the need to take any supplements.
8. Big issue for me. See 6.
9. I don’t feel the need for alcohol (or any other recreational drugs) so it’s a non issue.
10. If I hit my head/was in an accident I would go to emergency like anyone else. I wore a medical alert bracelet for a while. Stopped, don’t know why.
11. I’m not athletic. No advice.
12. Thought it would drive me mad as I hate repetitive noise. I don’t know when I stopped noticing the click. Months, years. I’m still fairly sane.
13. I’m glad I didn’t have a tissue valve as I prefer the idea of a mech valve that will outlast the rest of me.
14. No recommendation, not qualified.

 

[Gail in Ca]

1. 46 & 54
2. 22 years total
3. Mech valve didn’t fail, bacterial endocarditis caused damage of tissue around valve.
4. Self test and report to Coumadin clinic pharmacist.
5. 10
6. I had a subarachnoid hemorrhage due to staph. Lugdunensis (bacterial endocarditis)
7. No
8. Easy, but I bruise with lovenox shots.
9. Drink rarely, now. Used to have a cocktail nightly when I was younger. Never caused an issue.
10. No
11. I never thought much about HR, but now I’m in chronic a-fib with a leaking mitral valve, so my HR isn’t always good.
12. Took me about a year before it became part of me. I’m a musician so maybe more sensitive?
13. 9, also wish there would’ve been valve that lasted for life with no warfarin or clicking.
14. I think it’s always better to choose 1 surgery, if possible. You never know what can go wrong before 2nd or 3rd surgeries.
(I’m an example).
Welcome.

 

[sangfroid]

Hi everyone. Long time lurker, but now things have gotten real. I have crossed into severe aortic regurgitation and will need a surgery that replaces the aortic valve and likely part of the aorta as well (bentall). Aiming to be butchered in early 2023.

As seems quite common, I am having the Ross vs mechanical debate in my head.

Instead of engaging in the debate which has been debated to death, I’d like to ask those of you with a mechanical valve a few questions so I can get a better sense of life on warfarin and with the valve. Feel free to answer as much as you want / have time for. Maybe this can even be a useful resource for prospective surgery patients faced with the same choice in the future. Would appreciate any responses I can get here or in a similar ross thread I am making for those who had that procedure. Thanks in advance!

1. At what age did you get your mechanical valve?

2. How long did you have / have you had your mechanical valve for?

3. If your valve failed, what was the reason?

4. Do you self manage your Warfarin, or go to a lab?

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?

6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis daily, but once every week or 2 I enjoy a having most of a bottle of wine - or consuming an edible)

10. How often, if ever, is it necessary to go to the hospital for a fall or accident? Would you go if you fell skating or skiing? If you got hit in the head with a ball? What if you were in a car accident?

11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?

13. On a scale of 1-10 how happy are you with your choice for mechanical valve?

14. Would you recommend someone in my shoes get a mechanical valve? (39 years old, severe regurgitation, bentall needed, dilated annulus and LV, can probably self manage INR responsibly, otherwise healthy, likes to travel, hike, eat everything, drink and consume a bit of cannabis occasionally, likes silence and might be irritated by the clicking).

Thanks in advance to everyone for the help in advance

Got the aortic mechanical valve in 1999 at age 66. Warfarin control is easy after a few weeks of using the Roche coagucheck meter. I test at home every 2 weeks and report on line. Range is INR 2.5 to 3.5. Average 3 MG warfarin daily and using 1 MG tabs for adjustments. Before coagucheck (managed by Biotel) I had to go to hospital lab once a month. If you're not on Medicare Biotel is expensive. Your cardiologist can get you on a more reasonable coagucheck program. So far no bleeding or stroke. Bottom line: I'm very happy with the mechanical aortic valve and warfarin management has been easy, especially with coagucheck home INR testing.

 

[pellicle]

My INR is unstable so I have to test every week. Sometimes have to bridge. I

Holler if you want to try a method.

 

[sangfroid]

Got the aortic mechanical valve in 1999 at age 66. Warfarin control is easy after a few weeks of using the Roche coagucheck meter. I test at home every 2 weeks and report on line. Range is INR 2.5 to 3.5. Average 3 MG warfarin daily and using 1 MG tabs for adjustments. Before coagucheck (managed by Biotel) I had to go to hospital lab once a month. If you're not on Medicare Biotel is expensive. Your cardiologist can get you on a more reasonable coagucheck program. So far no bleeding or stroke. Bottom line: I'm very happy with the mechanical aortic valve and warfarin management has been easy, especially with coagucheck home INR testing. I've had 2 major surgeries. With gall bladder they lowered my INR to below 20, and with emergency hip surgery they repaired without lowering the INR.

 

[sangfroid]

2.0

 

[pellicle]

2.0

just fyi, by inserting everything inside the tags [] and [/] your answer is hidden and can't be replied to ... I'm repling to the one below the problem (which is this one )

 

[pellicle]

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?

hey, just a point, I edited my answer to this above and as I saw you'd liked it I can't be sure if you saw my edit.

The usual scale of 1-10 puts thing in the inverse to what you have said, (meaning 1 is not annoying 10 is annoying). I've now corrected my answer to reflect your actual question. That you've written it this way suggests your mindset is bent on it being annoying rather than making no assumption.

So I'm going to say if you go into it with the assumption that it'll be annoying you'll probably find that it is annoying.

You have to keep in mind that surgery is an injury, an injury which is specifically designed to change part of you (which is killing you). So like all injuries you must want to recover. If you lay about moaning about how horrible the injury result is you'll exactly talk yourself into a horrible situation.

People lose limbs in car accidents, those who recover well are those who adapt, those who never adapt go down hill and have shitty lives.

So its a choice that you make. I personally have made my choices to get better on more than one occasion and with respect to more than one injury.

Best Wishes

 

[Gail in Ca]

I thought of another small issue on warfarin. When I cut myself, whether it’s small or deep but no stitches required, I find that after the initial bleed that first day, it wants to bleed for 2-3 more days.
I’d say my cuts take twice as long to heal.

 

[Martin1962]

1. At what age did you get your mechanical valve?

59

2. How long did you have / have you had your mechanical valve for?

10 months.

3. If your valve failed, what was the reason?

N/A.

4. Do you self manage your Warfarin, or go to a lab?

Self manage, report result to local GP who then advises on dosage (I'm in the UK).

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?

8 & very little effect.

6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

No.

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

No, although antibiotics and some other meds can affect INR.

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

Just "bridged" for the first time. Not risky, but I found it a bit of a hassle. One issue for me was the time to get INR back into range.

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis

Can't comment on cannabis, but I do drink alcohol moderately mainly at weekends and haven't had any issues.

10. How often, if ever, is it necessary to go to the hospital for a fall or accident?

Haven't had to so far.

11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

Can't comment.

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?

No. Can hear the ticking quite a lot, particularly at night but doesn't bother me.

13. On a scale of 1-10 how happy are you with your choice for mechanical valve?

9

14. Would you recommend someone in my shoes get a mechanical valve? (39 years old, severe regurgitation, bentall needed, dilated annulus and LV, can probably self manage INR responsibly, otherwise healthy, likes to travel, hike, eat everything, drink and consume a bit of cannabis occasionally, likes silence and might be irritated by the clicking).

I would if I was in your situation, particularly at your age. However you're asking people who have opted for mechanical, so responses might be somewhat biased!

 

[csigabiga]

Thank you everyone so far for your answers so far! So so appreciated

That you've written it this way suggests your mindset is bent on it being annoying rather than making no assumption.

I wouldn't say bent on it, but I think it's fair to say that there are disadvantages to being on Warfarin. The question is (and what I'm trying to get a feel of) is whether they are worth trying to avoid at the risk of more surgeries later with a Ross. If I knew I would get 20+ years from a Ross, I'd probably favor that, but since I am showing aoritc insufficiency and a dilated annulus, the chances of this are slightly lower. Anywhere from 50-85% from what I've read.

helping me identify a (possibly post covid symptom of) tachycardia which is now being appropriately treated with drugs (but could have been an unexplained death if I wasn't aware of my HR)

That is indeed a nice surprise, but couldn't a smart watch that keeps track of HR do the same?

if followed long enough all other valve types (including ross) need ACT (anticoagulation therapy), especially in final stages

I've never heard of this before. Do you have any studies that show a need for ACT in the second decade of Ross?

have you never been in a car accident?

Believe it or not I actually haven't! I guess it depends on the size of the accident, but I would assume being in one while on Warfarin is a lot riskier than being in one and not being on Warfarin

I’m on metoprolol too

Sorry to hear it. Has that always been the case? Can I ask what lead to it?

I’ve also tried cannabis a few times when I was younger.

Was this when you already had your first mechanical installed?

Overall I really like what you’ve don’t here for both. They should be make sticky’s somewhere. Would you consider doing one for tissue valves? I’m sure you’d have to give thought to the questions, but others might benefit as well.

Thank you very much! Right now biological isn't on my radar because I worry it might not even last 10 years, but if someone else is reading this and wants to take the same approach I agree it probably would be helpful.

I've had bleed due to getting food poisoning and not being able to eat. Since that I have self monitored.

Was the bleed due to not being able to eat? Or was it due to the bacteria from the food poisoning? Like if I fasted a day would that impact INR? Do you have any idea how high your INR was when that happened ?

I think it’s always better to choose 1 surgery, if possible. You never know what can go wrong before 2nd or 3rd surgeries.
(I’m an example).

Just wanted to clarify that when you had your second op due to endocarditis, that's when the staph happened? Or was it something else?

I’m in chronic a-fib with a leaking mitral valve

Also sorry to hear. Is this common with aortic issues? I've thankfully never had any issues with any other valve to date

When I cut myself, whether it’s small or deep but no stitches required, I find that after the initial bleed that first day, it wants to bleed for 2-3 more days.

This is also the first time I've heard someone emphasize that small bleeds are a bit stubborn. Has anyone else had this experience?

 

[Superman]

Sorry to hear it. Has that always been the case? Can I ask what lead to it?

Nothing to be sorry about. Just another pill I take. They added it after my aneurysm, I guess to help manage against blood pressure spikes and an occasional irregular heart beat? Some folks find it impacts their ability to hit higher heart rates during exercise. I averaged 157 bpm on a 5k run today topping out at 171, so I don’t worry about it. Resting pulse is in the mid 50’s. Last check up had blood pressure at 110 / 75 I think?

Was this when you already had your first mechanical installed?

Yeah. Early 20’s at the Euchre table (card game) with friends. I had my mechanical valve installed in high school. I wasn’t super disciplined in getting to the lab at that age though, and home testing didn’t exist yet. Survived that decade without incident.

 

[Superman]

This is also the first time I've heard someone emphasize that small bleeds are a bit stubborn. Has anyone else had this experience?

Maybe? I wouldn’t say days though. I really don’t pay much attention. I do get some discoloration around cuts that tends to last. Also on long hikes in hot weather I’ll get red dots on my lower shins. I have some staining in the skin there. Maybe from red blood cells or something? I don’t know. Either way, I probably can’t model sneakers in shorts and ankle socks for a living anymore.

 

[Gail in Ca]

I’ve had 3 ohs. First one at 34, was given porcine valve and Dacron graft due to aneurysm. Eleven years later, porcine failing, I was put into congestive heart failure after the cardiac cath test, got rushed to hospital and had 2nd surgery of carbomedic top hat valve. My mitral was leaking mild to moderate and the surgeon couldn’t address it because I was too sick going into that surgery.
My 2nd mechanical valve was placed after I got bacterial endocarditis from staph infection. After 6 weeks on antibiotics thru a picc line, I had tests done because of sob. My 3rd surgery was replacing mech valve with valve in graft,
repairing mitral valve w anulplasty ring.
My a-fib started 3 years after 3rd surgery.
Got a cardioversion which kept me regular for 2 years. Chronic A-fib after that. I live with it. I think issues do pop up after multiple surgeries. These surgeries we have are not as worry free as we would like to think.

 

[pellicle]

I wouldn't say bent on it, but I think it's fair to say that there are disadvantages to being on Warfarin.

there are disadvantages to every option (including and especially doing nothing). What you need to do is sort out what you think about those disadvantages.
You need to understand properly the actual reality of what they mean, what reoperation means and what the full risks are (no, not just risk of death, risk of erosion of your health).

The question is (and what I'm trying to get a feel of) is whether they are worth trying to avoid at the risk of more surgeries later with a Ross.

there are posts here where people have said "if I knew then what I know now I'd probably have gone another route"

My view is expressed many times here, but for brevity I'll restate it as: Ross came from a time when younger people needed it, and when INR management wasn't Point of Care and as easy as it is (or can be if you're not entrapped in the US medical health care system).

If I knew I would get 20+ years from a Ross, I'd probably favor that, but since I am showing aoritc insufficiency and a dilated annulus, the chances of this are slightly lower. Anywhere from 50-85% from what I've read.

I think those stats are really hard to interpret

That is indeed a nice surprise, but couldn't a smart watch that keeps track of HR do the same?

no, because they don't know how to deal with ectopic beats ...

I've never heard of this before. Do you have any studies that show a need for ACT in the second decade of Ross?

read all your studies again and don't just read the abstracts ... I don't have them to hand. Keep clearly in mind that most studies of the Ross are written by those who favor and promote the Ross

Believe it or not I actually haven't! I guess it depends on the size of the accident, but I would assume being in one while on Warfarin is a lot riskier than being in one and not being on Warfarin

no, because warfarin only effects the duration of bleeds (if INR = 2 then the clotting time is increased by 2, INR=3 by three ...) and every ER is going to be able to reverse ACT pretty fast once your in a hospital. What happens with massive internal trauma is like "a dripping tap" compared to "a dam has burst"

IC bleeds (from a concussion should be identified and treated quickly).

Ultimately I have nothing invested in your choice, but from what I read almost everything you've said that concerns you about warfarin and mechanical valve falls into the "common misconceptions" category and everything you've said about the Ross falls into the "hope for the best of the claims" category.

PS just quickly
https://pubmed.ncbi.nlm.nih.gov/28242079/

Results: Median age was 12 years, 74% were pediatric patients, and 66% had previous surgical procedures. There were 8 (5%) early deaths, 6 of whom underwent the Ross-Konno procedure, and 10 (7%) late deaths. Survival rates at 15 and 20 years were 86% in the total cohort and 91% in the isolated Ross subgroup. Linearized occurrence rates of endocarditis and valve thrombosis, thromboembolism, and bleeding events combined were 0.30% per patient-year and 0.15% per patient-year, respectively. Cumulative incidences of all-cause reoperation at 15 and 20 years were 35.2% and 45.3%, respectively. Twenty-six patients needed autograft reoperation, 20 due to dilatation. Cumulative incidences of autograft reoperation at 15 and 20 years were 20.1% and 31.1%, respectively. At latest echocardiogram, 4 patients had moderate aortic regurgitation and none had stenosis.​

and there is no mention of ACT and AF rates but the underline suggest there is some (not fussed on the reoperation rates either).