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

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ChuckM

Member
Joined
Nov 29, 2022
Messages
15
Location
Lafayette, La
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?
49
2. How long did you have / have you had your mechanical valve for?
2 years
3. If your valve failed, what was the reason?
Hopefully never!
4. Do you self manage your Warfarin, or go to a lab?
Lab, monthly and insurance cost is only $10/month.
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. It really hasn't but it did bring me here. I bit my tongue and had a problem stopping that. Pressure and teabags btw are the suggestions. Nose bleeds once, passed in urine once and use styptic pencils for shaving and other cuts. If I plan on going to the beach to drink, I bring a couple of bags of spinach and if I have a 6 pack, I'll have a plate of cooked spinach (throw some cheese and hotsauce on it).
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?
I was a normal user of ibuprofen, but have switched to Tylenol now.
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?
Haven't had to yet, was about to pull the trigger on another minor procedure for some sinus issues, but decided against it. So I guess you can say that it changed my direction on that. I will move forward if it gets worse but not until then.
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 use weed, but see above for drinking. Casual drinking doesn't seem to be a bother, and Im not a big drinker in the first place. But I do tend to binge on beach vacations, so I try to be careful and balance.
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 think those are serious things to consider. I wear a life alert necklace now in case of car wrecks, specifying I'm on coumadin and have an artificial valve.
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)
Mine spikes during our daily walks, but I'm not nearly as active as I used to be (or probably should be). Concern plays a part of that, for real.
12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?
Chest tube vacuums kept me from hearing it in the hospital. It was until I got in them removed and was in a quiet bathroom that I first heard it. Wife bought one of those rain sound machines.. sleep with it every night. But I HAVE to have it to sleep.
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?
I second guess, especially after reading here all the people with tissue valves, but my surgeon suggested it and gave me good reasons. The warfarin really isn't that bad.
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
You ARE going to hear it, so that may be an issue. I find that in bed, if I position myself just right, I can reduce it maybe 95%. However I have to say that I've grown accustomed to it and when I had the palpitations, it was because I could hear it that I was aware of them. My doctor seemed to lean towards the fact that I was young and that tissue valves may not last a lifetime, and I didn't want another. Combined with the aneurysm, I don't think I had a choice.
 

tommyboy14

Well-known member
Joined
Mar 17, 2014
Messages
85
Location
London, United Kingdom
I am fairly recent Mech valve person, so I think that comments from the other forum participants are prob more valuable than mine.
We are similar in age. I am 41 and just had my second surgery (this time mech valve) in May.

When I had my first surgery (Mech valve was second), I was also pushing for Ross procedure. There is a couple of things that you need to be aware of:

1) Aortic annulus is an important risk factor for early failure of ross procedure. When I spoke to Prof. Hans Sievers, the leading Ross surgeon in Europe at the time, he said he will not do a ross on someone with Aortic annulus > 32mm. You can read the papers of Tirone David (the surgeon who invented the david procedure) and he says the same. Both Prof Sievers and Dr. David have some of the best ross outcomes at 20 years because they only selected patients who are optimal candidates for the procedue.

2) When the autograft does fail, there is no calcium because it is your own tissue. This means current TAVR cant be used for future replacement. There is something called a Jena TAVR valve that can sometimes be used in cases with pure regurgitation, but at present only used in very old and frail people in Europe. in the US, it is still in clinical trial. On the pulmonary homograft, transcatheter pulmonary replacement has a high incidence of endocarditis and not always possible. They tried to do this for Arnold Schwarzenegger in 2018, but then had to convert to full surgery because it failed.

Finally, a lot of doctors emphasize the positive success stories with Ross. But if things go wrong, they can really go wrong. Just look at Arnold Schwarzenegger: Ross in 1997. It failed the next day, so reop 24 hours later. Attempted transcatheter replacement of Pulmonary homograft in 2018 needed to be converted to full OHS. Transcatheter Aortic Valve replacement in 2020. He is only 72. Transcather valves only last 7-10 years. What then?

I think that the Ross can be a great operation, but the stats say people with only stenosis and normal aortic root/annulus have the best outcomes.

Anyways, I just wanted to share what I found through my research. Hopefully you find this helpful.
 

LondonAndy

VR.org Supporter
Supporting Member
Joined
Aug 1, 2015
Messages
576
Location
London, UK
1. At what age did you get your mechanical valve?
48
2. How long did you have / have you had your mechanical valve for?
8 years so far
3. If your valve failed, what was the reason?
Still ticking
4. Do you self manage your Warfarin, or go to a lab?
Self manage
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?
9
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?
Limit on pain killers, but that hasn't been an issue
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 had a pacemaker replaced last month. No bridging or particular arrangement was needed, other than being towards the lower end of my therapeutic 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 daily, but once every week or 2 I enjoy a having most of a bottle of wine - or consuming an edible)
Although my INR is pretty stable, I monitor it weekly anyway. If on vacation I will test every 3 days or so, owing to the alcohol and different diet tending to cause my INR to increase. I then adjust my dose accordingly.
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?
This hasn't happened to me, but would depend on the severity.
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)
No
12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?
No. The clicking is very minor and has never bothered me.
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?
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).
Insufficient knowledge to comment.
Thanks in advance to everyone for the help in advance
 

Jacque

Member
Joined
Jul 14, 2010
Messages
5
Location
Mayo Clinic, Rochester, MN
1. At what age did you get your mechanical valve?
48

2. How long have you had your mechanical valve for?
15 years (2007)

3. If your valve failed, what was the reason?
First one clotted (St. Jude); I have FVL-a clotting disorder which contributed to this, they put a second one in (Carbo-Medics). My chest was opened up 3 times in 4 days, I had excessive bleeding between the 2 OHS. Also had a pacemaker placed. Found out a year after my OHS that I had an aneurysm (mid-ascending aortic), they are monitoring the aneurysm.

4. Do you self manage your Warfarin, or go to a lab?
Self manage with a CoaguChek INR Machine. Highly recommend this.

Stay consistent on your greens; foods that have vitamin K. Increased greens or increased activity makes blood thicker, lowering INR. Less greens and excess wine makes blood thinner, raising INR.

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; set an alarm, I take it after supper.

6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?
Not from the OHS. I had mini strokes (TIAs) for 8 years as it took that long before doctors realized I had a hole in my heart; had that plugged in a 2003 procedure (separate issue from my OHS in 2007).

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?
No

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?
Easy; I have had numerous procedures with no issues except sometimes it takes time for my INR to get back on track.

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 two. I enjoy having most of a bottle of wine - or consuming an edible)
I drink occasionally, no issues. Too much would lower my INR. I do not use cannabis. I avoid caffeine; coffee, energy drinks, pop…I do eat chocolate! Everything in moderation.

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, I bruise easily is all. I would only go if I felt something was off.

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 work out with weights and bicycle, plus play Pickleball, no issues. I did have to have an ablation because my heart rate was staying elevated. Grandma here stays very active.

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?
No. I can’t remember that far back, I rarely notice it now.

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?
8; it may or may not have caused my osteopenia? Not sure.

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).
That would be your decision because of legality issues. For me, I didn’t want to have to go back in after 8-10 years to have another natural valve replaced as I would be on Warfarin the rest of my life anyways because of my TIAs and FVL clotting disorder.
 

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
149
Location
Frederick, MD
1. At what age did you get your mechanical valve?

50

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

6 months

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

My birth valve: Bicuspid Aortic Valve. Monitored closely for the last couple of years. Finally traversed into the severe category on all things. I still had 0 real symptoms but jumped in to get it done. Recent studies show that the best outcomes are with people who get the surgery done BEFORE symptoms show.

My On-X 23mm valve is still ticking.

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

Self-Manage. Holy crap there is NO WAY I would let anyone else manage me knowing what I know now.

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?

Currently: 10 (no big deal). I test once a week. I test less than a diabetic. I do all of my normal stuff that I did prior to surgery: Weightlift, run, walk the dogs, house work on ladders, target shooting (large calibers) and shotgun clays, wrestle with my dogs, bike ride, work on cars, sex, eat, sleep, etc. I honestly don't even know I am on Warfarin until my alarm goes off to take my pills each day.

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

Neither

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

I take multivitamin, Vitamin D, Vitamin K ... sometimes I take Magnesium/Potassium. I often make protein drinks (blueberries, milk, whey isolate, PB powder) with no issues. The only oddity that I have had so far has been a potential issue taking big doses of Cod Liver Oil. I need to get around to verifying or disproving that (easy since I self test). Of course I stay away from Cranberry juice as most Warfarin takers do. I do NOT shy away from any greens. Bring them on! Love them.

It is a known thing that taking antibiotics and drugs like amiodarone will have an affect on INR. I haven't had to take any of those so I can't report on it.

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'm too new to this way of life so I haven't need to bridge or taper my dose (like pellicle and chuck c have done)

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)

I drink whenever I want. I have no dependence on alcohol whatsoever - Zero. I don't crave it and never overindulge. That said, I often have a drink on Fridays and/or Saturdays. I haven't had any issues whatsoever. That said, I'm not drinking an entire bottle of wine by myself. 2 glasses at most (I'm 170lbs).

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 so far for me. Honestly, I don't even know I am on Warfarin anymore. For real. I was really concerned about it (but knew a mechanical valve was the best choice for long term survival). And now I am like - Why was I ever worried? Again, a quick reminder that I self test ... so I absolutely know what my levels are. Nothing is left to chance.

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)

None after recovery. That said, I don't workout at that level. I get my heart rate routinely in the 135-145bpm range. I have ZERO issues pushing it higher into the 160's. I stop not because of heartbeat ... but because I am not superman. I am in pretty good shape ... but I am no athlete. I'm working toward bench pressing my body weight 10 times again. I am working toward running 2 miles again. I have no desire to do anything more than those 2 things in terms of fitness goals.

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

We have a lot of white noise in our house because my wife and I like life that way. I have never lost sleep due to ticking - not one time - ever. But, if you don't have white noise or you like it quiet, then it will probably drive you crazy. YMMV.

It was weird at first when I went to the bathroom for #2 and sat in silence with the ticking. However, it is now a comforting bathroom noise ... a reminder that I am "alive and ticking". Another reminder that I am mortal and to keep my priorities in order. Additionally, it is a great topic of conversation :).

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?

11. Seriously. If I could do it all over again I would probably choose a different mechanical valve than the On-X ... but that isn't me saying that this valve has issues or is bad. I am not saying that. I just believe that they have made some interesting business/marketing decisions that I could have shown my NON support by just choosing differently.

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).

Point of note that this is not my advice to you NOR medical advice in any way, shape, or form. Too hard to say. In my opinion, if someone is not contraindicated for Warfarin - then mechanical is the clear winner in terms of logic and risk at a young age. However, we all know that life doesn't work that way for everyone. Individuals need to ask themselves how many OHSs they are willing to have in their life ... AND if they can deal with the ticking. Ross will clearly turn a one valve problem into a 2 valve problem 15-25 years from now. Then what?
 
Last edited:

Justmadi

Active member
Joined
Apr 1, 2016
Messages
39
Location
Wisconsin
My bleed when I had food poisoning was because without eating my INR went sky high…Something like 8.1. This prompted bleeding. ( I have some internal hemorrhoids..sorry TMI)
Warfarin is closely tied with what and how much you eat.
if you decide to fast even one day, I would expect that your warfarin level will be impacted. However, if you self test you may be able to adjust accordingly with your fasting.
 

Beach77

VR.org Supporter
Supporting Member
Joined
Feb 27, 2021
Messages
103
Location
San Diego CA
Great questions!

At what age did you get your mechanical valve?

64 (turned 65 in the hospital) I initially wanted the TAVR and my heart team approved (they thought I was too young) but they wanted me to talk with another surgeon about a mechanical valve. Then left the decision to me. It took me a few weeks to decide but I went with an On-X mechanical.

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

Two years (this Saturday, Dec. 3, 2022)

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

Hasn’t failed

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

Go to the lab 4 to 6 weeks but I self-monitor weekly with a monitor I purchased from ebay

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?

Scale of 9, when my alarm goes off at 6 pm for me to take it, I stop what I’m doing and take it. Then my husband says “did you take your medicine?”. (so annoying, even if I tell him I took it! but I’m grateful he cares!)

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

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 bridged one time, it wasn’t fun but it worked and gave me a little reassurance. Giving the first 2 shots were hard but it was easier after that. Next time, if needed, I won’t be so concerned about the shots. I don’t think it is a big deal to bridge, it’s just annoying.

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 much, a couple of glasses of wine sometimes on the weekend or more on vacations. It hasn't had any effects on my INR.

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 have fallen because of my big feet! I didn’t bump my head. Did not go the hospital. Had an impressive bruise! If I bumped my head falling, I’d would decide at the time to go or not.

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

No limits. I do what I want. We’ve hiked hard hikes in the Sierras and Oregon. I work-out at the gym, weights, yoga and classes. I walk about 4 miles most days. My peak is 120 to 130 and I’m okay with that so is my doctor.

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

No. I rarely hear it. If I notice it at night, I’ll just make an adjustment to my position or I’ll start counting to get me to sleep faster! No one has heard it besides me.

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

That a 10! I can hike uphill again!!! My first strenuous hike I was happy beyond happiness! My two cardiologist received cards and pictures! I’m alive too!

I don’t have a worry that the valve will fail and God willing I won’t need a 2nd OHS! I didn’t think I had a lot of symptoms before my surgery but after, I realized I did have limitations. Afterwards, I felt like I was in my 20’s again! Wished I had it sooner!

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'm happy with my decision but it's up to you.
 
Last edited:

csigabiga

Active member
Joined
Jan 23, 2018
Messages
31
Location
Toronto & Tel Aviv
You ARE going to hear it, so that may be an issue. I find that in bed, if I position myself just right, I can reduce it maybe 95%.

The clicking kinda worries me. I sleep on my side with my head/ear on a pillow. Maybe white noise, rain, or sleeping while hugging / smothering a pillow would help?

he will not do a ross on someone with Aortic annulus > 32mm. You can read the papers of Tirone David (the surgeon who invented the david procedure) and he says the same.

I've read tons of articles from David and Sievers. I've read articles that state they'd do a ross for patients whose annuluses are above 27mm and 28mm, but that the evidence no longer states a Ross is best for these kinds of patients. I've never seen anything where 32 mm was mentioned. If you could direct me to it, I'd be really really grateful.

the stats say people with only stenosis and normal aortic root/annulus have the best outcomes.
Yeah, I have seen this quite a bit. I think if that were the case for me, I'd go with a Ross as the research seems to favor it for these types of patients.

I had a pacemaker replaced last month.
I'm sorry to hear it. Did this by chance have anything to do with your mech valve?
 

csigabiga

Active member
Joined
Jan 23, 2018
Messages
31
Location
Toronto & Tel Aviv
My bleed when I had food poisoning was because without eating my INR went sky high…Something like 8.1. This prompted bleeding. ( I have some internal hemorrhoids..sorry TMI)
Warfarin is closely tied with what and how much you eat.
This is actually really helpful to know. I had no idea that was possible and that the quantity of your food (or not eating at all I guess?) could have that effect
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,371
Location
kansas city, mo
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
No need to answer a lot of questions. I have had a St. Jude's leaflet aortic valve since 2001 and been on Warfarin for as long. No real changes in activity and goes a little wacko every so often. I do fine and still alive. They will bridge you carefully for minor procedures. Just stay on the taking daily. I went without for three months and had a eye stroke. Left eye and it stopped the progression of cataracts in that eye. But I do fine most of the time. Most younger people get the mechanical valves due to not wanting to do surgery within a few years. Mechanical valves have a longer span of use than tissue valves. You can still do a lot while on the warfarin. You can make the choice of what you want, we cannot do it for you. It is whatever you feel comfortable with. Good luck.
 

LondonAndy

VR.org Supporter
Supporting Member
Joined
Aug 1, 2015
Messages
576
Location
London, UK
I'm sorry to hear it. Did this by chance have anything to do with your mech valve?
Yes. The pacemaker was inserted a week after my valve operation in 2014, as a result of "surgical complication" - ie they accidentally damaged my heart's electrics. It means I am 100% paced, but to be honest I don't think it has caused me any restrictions. I have read it is less than a 3% risk of aortic valve surgery.
 

tommyboy14

Well-known member
Joined
Mar 17, 2014
Messages
85
Location
London, United Kingdom
How do you then explain calcification in native valves?
I can't explain this and you are right to pick up on it. Also doesnt explain how Arnold Schwarzeneger had a TAVI 23 years after this Ross (but then again we dont know what happened when his ross failed the first time - whether they repaired the autograft or instead put an Aortic Homograft instead).

I should have made it clearer that I referred to this recent article below, which is one of the few studies done on Ross re-operations over a long time period.


In the article it says: 'Importantly, stenosis of the autograft has never yet been seen which makes valve-in-valve catheter-based therapy impossible for the failed autograft with current technology'

That is what my statement was based on.
 

Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,751
Location
Grand Rapids, MI, USA
My bleed when I had food poisoning was because without eating my INR went sky high…Something like 8.1. This prompted bleeding. ( I have some internal hemorrhoids..sorry TMI)
Warfarin is closely tied with what and how much you eat.
if you decide to fast even one day, I would expect that your warfarin level will be impacted. However, if you self test you may be able to adjust accordingly with your fasting.
I suspect the illness had as much or more to do with that significant a change in INR vs just a normal healthy fast day taken by choice. I’ve fasted without issue and without a significant INR change.

I also had the flu and Covid where my INR management certainly had to be more active, but it didn’t go way up unless I was also taking medication for my illness.

In short I would say we’re all different and respond differently to things so take as prescribed, test as needed, and adjust as needed.
Yes. The pacemaker was inserted a week after my valve operation in 2014, as a result of "surgical complication" - ie they accidentally damaged my heart's electrics. It means I am 100% paced, but to be honest I don't think it has caused me any restrictions. I have read it is less than a 3% risk of aortic valve surgery.
Probably worth pointing out that this was a complication of surgery. Not of choosing a mechanical valve. We have tissue valvers here with pacemakers as well.
 

pellicle

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I can't explain this and you are right to pick up on it. Also doesnt explain how Arnold Schwarzeneger had a TAVI 23 years after this Ross (but then again we dont know what happened when his ross failed the first time - whether they repaired the autograft or instead put an Aortic Homograft instead).
I think that the problem is your implicit assumptions are perhaps incorrect (perhaps for instance you've simplified in your mind the cause for valve failure (tissue or original native or even a graft). I can say that with my homograft that when they took it out at 20 years old it was still functioning, but very calcified.

Why should a ross autograft be any different?

Some recent research about a topic raised here I did for my own interest turned up this link:


I suggest that when you read it you think critically and keep the following questions in mind:
  • how long do you expect (statistically speaking) to live? Is it more than another 20 years? Statistics would suggest to over 70 is probable
  • does the article (any one, not just this one) have data out to over 20 years?
  • Does the data show a downward trend (which may be accellerating)?
I just wrote this to someone else, so I'll reuse it again here. My summary position is this: there is no definitive cure to valular heart disease, we simply exchange valvular heart disease for "prosthetic valve disease" each of the solutions is not ideal but are different in nature. The answer of which of the non-ideal choices you face has a set of actual parameters (not perceived parameters) which are directly related to which you choose
  1. the mechanical valve is a reasonably permanent solution which all of the literature states (yes, even the pro Ross literature) has as its only drawback the requirement to manage AntiCoagulation Therapy
  2. all other valves have as their only advantage that you don't have to manage ACT but have the only drawback that you will certainly require reoperation eventually (unless you die first).
  3. The chances of dying first increase with age at operation.
So in essence its a simple equation which can be answered by one simple question: are you the type of person who will take that call to management seriously and do it?

If yes then the answer becomes simple, as it does if the answer is "no".
 

pellicle

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Just tossing ideas around:
@Justmadi ... why was your INR so high?
As Superman says
I suspect the illness had as much or more to do with that significant a change in INR vs just a normal healthy fast day taken by choice. I’ve fasted without issue and without a significant INR change.
and this is consistent with the facts that high INR does not cause bleeds, something else causes them, and the high factor of anticoagulation therapy (ACT) (well out of range) exacerbated it. I've had food poisoning and I got a rather large varicose vein in my arse as a result of it, I as less than 30 and not on warfarin, so both those things factored in it not causing a bleed.

The point is that after you're in your 20's (like it or not) ones health needs to be managed. an INR of over 5 clearly means a failure of (actually quite simple) management.

Seeing this as the cause (the failure of management of ACT / INR) as well as the failure of management after that event I suspect.

I'm sure it was traumatic, but you need to blame the right causal agent.
 

LondonAndy

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How do you then explain calcification in native valves?
I don't know if it is helpful to mention my experience of calcification. We have a long family history of high cholesterol, with male relations dying quite young, especially in the 1980s and early 1990s. As a result, I have been on a statin since my early 20s (I am now 57), and I was diagnosed as an insulin dependent diabetic in 1996. After my valve was replaced, my surgeon said my valve was so white it looked like a piece of cauliflower, and he said "we now think the combination of insulin and statins causes calcification".
 
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