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

[pellicle]

nd he said "we now think the combination of insulin and statins causes calcification".

ouch
BTW were you at all BAV?

 

[LondonAndy]

ouch
BTW were you at all BAV?

No.

But I now have a BEV! (Battery Electric Vehicle!) . Sometimes struggle to keep up with all the acronyms we use!

 

[pellicle]

But I now have a BEV! (Battery Electric Vehicle!)

I could tell you a funny story about needing to help a mate with a BEV with a flat 12V lead acid battery... with jumper leads, using my Pajero
He still had 40kWh's charge in his other battery

 

[dick0236]

I have had my one and only mechanical valve since I was 31 years old......now 86+
Warfarin, since the INR system was introduced in 1980s, has not been difficult to manage.
I had one stroke, in 1974, due to my ignorance of warfarin management...no problems since INR was introduced

My personal thought is:
If you are younger than 60 a mechanical valve should be considered since it will most likely last your lifetime.
If you are older than 60 and not expected to live more than 20-25 years a tissue valve should be considered.
I would not accept TAVR unless I was in my mid to late 70s and unable to safely have OHS.

I would do whatever I could to stay away from a surgical table for OHS after I turned 80. Since I am in my mid 80s I shudder at the thought of OHS at my age.

 

[ChuckM]

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?

I definitely have a little Homemedics "rain" machine. A ceiling fan, box fan, air conditioner or even an app on my iphone are fine with me. I just don't like it completely quiet. I still hear it but so long as its not the ONLY thing I hear, I don't concentrate on it. Its not quite Edgar Allan Poe.

 

[DJ-Rae09]

1. At what age did you get your mechanical valve? 43

2. How long did you have / have you had your mechanical valve for? 4 months now

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

4. Do you self manage your Warfarin, or go to a lab? I'm self managing

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? 10

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? No issues as yet

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 love beer and drink 3 days a week, no issues!

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) No that I know of

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it? No and I got used to it very quickly, I find it soothing now and only hear in a quiet room anyway, but it's background noise for 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). Yes I would recommend. I had the Bentall procedure 4 months ago and I'm 43 years old. I didn't want re-operations with the tissue valve option

 

[Nick Drew]

At what age did you get your mechanical valve? 64

2. How long did you have / have you had your mechanical valve for? 5 months

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

4. Do you self-manage your Warfarin, or go to a lab? I'm self-managing

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? 10

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? none so far

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 issues as yet

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 love beer and wine and drink at weekends so far no issues but certainly do not drink like I used to. Not a cannabis man!

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? N/A

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) Not that I know of. Walking regular and hoping to start walking football again in the new year

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it? No and I got used to it very quickly, I find it soothing now and only hear in a quiet room anyway, but it's background noise for 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). Yes I would recommend. Had an ON-x fitted and so far, so good here in the UK!

 

[csigabiga]

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.

I completely agree with everything here. If I had stenosis and a smaller annulus (mine is about 29-33 depending on if you believe echo or CT) I would probably go with the data, go for a Ross with an experienced surgeon of course, and feel good about getting 20+ good quality, no clicking, no ACT years. Since I have regurgitation and a dilated annulus though, there is a much greater chance of it failing early which would mean more surgeries, sooner than I'd hope for. Since multiple surgeries are increasingly dangerous and complicated, mechanical is probably my best option and probably what I'll be going with. I am a bit worried about changes in lifestyle, but people who've had the mechanical seem to find it no big deal which is a big relief. Can I ask what your first OS was and why it failed?

 

[Lucker]

I completely agree with everything here. If I had stenosis and a smaller annulus (mine is about 29-33 depending on if you believe echo or CT) I would probably go with the data and go for a Ross. Since multiple surgeries are increasingly dangerous and complicated, mechanical is probably my best option and what I'll be going with. Can I ask what your first OS was and why it failed?

May I ask, have your surgeons told you about any delicacies with installing the mechanical valve in a large annulus? It seems to me that you are getting the valve only, without the aorta prosthesis (no Bentall), and annulus 33 is larger than most of the aortic valves. Sometimes surgeons use mitral valves in aortic positions in such cases.

 

[csigabiga]

May I ask, have your surgeons told you about any delicacies with installing the mechanical valve in a large annulus? It seems to me that you are getting the valve only, without the aorta prosthesis (no Bentall), and annulus 33 is larger than most of the aortic valves. Sometimes surgeons use mitral valves in aortic positions in such cases.

It would in fact be a Bentall. My ascending aorta is at about 45cm, so they want to be aggressive in order to prevent an aneurysm from developing down the road

 

[tommyboy14]

I completely agree with everything here. If I had stenosis and a smaller annulus (mine is about 29-33 depending on if you believe echo or CT) I would probably go with the data and go for a Ross. Since multiple surgeries are increasingly dangerous and complicated, mechanical is probably my best option and what I'll be going with. Can I ask what your first OS was and why it failed?

Hi there,

that was my reasoning the first time around as well.

I got a tissue valve (a Bio-Bentall operation) the first time around, with the hope that I can have TAVI as a bailout to give me a total of 15-20 years and that in that time technological progress would deliver an anti-coagulant free long-term solution.

Here is what actually happened: Valve failed after 8 years in a strange way (one of the leaflefts tore, there was no calcium - so no possibility of TAVI). So I couldnt do TAVI and even if I was told that with what they know now (but unclear in 2014), surgical replacement after TAVI is harder. Finally, when you have to re-operate on a Bentall, there is a 20-30% risk of needing to redo the whole Bental conduit. This is actually a slightly higher risk operation. In hindsight, I was lucky: I had an excellent surgeon which meant few adverse consequences after surgery. My recommendation from my own experience: 1) The only sensible options in anyone below 60 are mechanical or Ross. 2) Hope for a better solution in the future is a bad strategy. You need make your decision based on what you know today.


I was also scared of anti-coagulant related mechanical valve adverse effects when I had this the first time around. I will say I was plainly irrational. I should have gone for the one and done mechanical valve. If you read the literature objectively, then there is a lot of evidence to suggest that

a) survival after the operation is more about the individual patient than Ross vs mechanical. Some papers dont come to this conclusion (normally those based on national registries with incomplete data on patient characteristics), but those that have really good data on individuals patients (normally run by hospitals with more complete data) do come to this conclusion.

b) The reported adverse event rates with mechanical valves have come down over time, probably because of better anti-coagulation management. The stroke rates in many of recent studies are in line with so called background stroke rates (I.e. the probability of a stroke in the general age and *** matched population).

c) Survival of patients with congenital valve disorders (bicuspid/unicuspid valve) is normal (in line with general population) regardless of operation.

Finally, if you are considering the Ross, the results are highly surgeon specific and we dont know if that is due to surgeon skill or surgeon ability to select the right patients for the operation (those whose anatomy is ideal for this approach). We dont have a super large sample, but I wonder if the results in some of the very long-term Ross studies with 20 years good data, are because patients with enlarged aortic annulus were not offered this surgery.

 

[tommyboy14]

May I ask, have your surgeons told you about any delicacies with installing the mechanical valve in a large annulus? It seems to me that you are getting the valve only, without the aorta prosthesis (no Bentall), and annulus 33 is larger than most of the aortic valves. Sometimes surgeons use mitral valves in aortic positions in such cases.

So if you look at the valve size, you need to add approx half a centimeter for the sewing ring to the actual valve size. If you have a Bentall you may need to add some mm's on top, depending on how it is installed. This is why I got a 25-mm valve despite a 33mm annulus.
As always, this decision is something that the surgeon will do while you are in the operating theatre.

 

[Pat Heaney]

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

Hi. I will try to answer below….



1. 44
2. 3 years
3. N/A
4. self-manage
5. 10 (it is no big deal for me)
6. No
7. No
8. I had a colonoscopy two years ago and had to bridge. There were no issues aside from getting jabbed in the belly with Lovenox shots for a few days.
9. I don’t use cannabis. But I do love beer and drink about 20-25 beers a week. I drink exactly the same as did pre-surgery and have never had any issues with my INR. If my INR does dip or get too high I just adjust the dosage. But I think foods and activity and heat affect my INR more that alcohol.
10. Never had an issue. I still downhill ski (but I wear a helmet). And I do a lot of cross country skiing and ski marathons too. I would go to the hospital if I took a good hit to the head. Other body parts I would be less concerned about.
11. Never had an issue with my heart rate. I skied the 50k Birkiebeinder ski race last winter.
12. I am an extremely light sleeper but generally the clicking does not bother me. I use a fan at night to help drown it out. (I used a fan pre-surgery too). The only issue is when I wake up in the middle of the night. Sometime the clicking makes it a little difficult to fall back asleep. The clicking could be an issue if I was camping or in a situation where I could not use white noise or a fan. But, for the most part, the clicking does not bother me and in a weird way I sort of like it now.
13. 9
14. Yes. When I had my surgery three years I was really concerned about how a mechanical valve and warfarin would affect my hobbies and lifestyle. But I wanted to be “one and done” and not worry about multiple procedures the rest of my life—procedures that are never risk free. I can honestly say my life has changed very little with a mechanical valve. I am just more cognizant about getting hit in the head and staying on top of warfarin management (which is basically a 5 minute time commitment once a week) but I am very happy with my choice.

Good luck!

 

[treichert0312]

What tommyboy said…
My pig valve leaflet tore after 8 years, got the mechanical valve on Fathers Day & all good with INR/warfarin that were previous concerns. I ski & run - took a few months before cleared for full activity but going well now.
This was my third OHS and planning on that as my last - fingers crossed- but with hindsight would absolutely have gone mechanical from the start. Clicking is minimal except in quiet room and I’m the only one to head it.
The alcohol thing - I don’t drink but read / heard that when on warfarin just need to stay consistent and don’t hop on & off the wagon. No personal experience so I defer to others on that.

 

[DebbyA]

1. 65
2. 10 years
3. My mechanical valve did not fail, but the tissue valve I got at 60 did.
4. Self-manage but insurance requires reporting to RemoteInr (formerly Coaguchek) who notifies my cardio who is supposed to monitor.
5. 7 the main annoyance for me is the contraindication for so many other medications
6. An artery burst after my mastectomy, and about an hour after bridging with heparin. This is probably a fairly uncommon situation.
7. Yes
8. I've had cataract surgery and surgery for a broken wrist without the need for bridging. Be sure to find specialists who are up to date.
9. "dose the diet" How substances affect you is infinitely variable, and you will have to observe.
10. This also is variable and depends on the severity of the injury.
12. Clicking has never been a problem and I'm a light sleeper. Also I'm a quiet person who works on projects for hours by myself without even a radio. I hear a click from time to time, but kind of like it.
13. 2
14. yes
adjusted for backwards scale

 

[Buckeye]

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

1. 52 yrs old
2. On X aortic valve on January 2020
3. Valve works great
4. Went to lab for first couple of months. Now self monitoring and sending results through app
5. I would say it has been an 8. I have lynch syndrome which makes me susceptible to different cancers. So I have to have procedures every year for surveillance. So I am on and off warfarin quite frequently.
6. No I have not. I have sliced my finger using a mandolin slicer and it healed, but needed to stop taking warfarin for a day. It takes injuries a few days longer to heal.
7. Only ibuprofen. I take any supplements I want. I eat what I want. They will dose you based on your lifestyle. They don’t expect you to change your life completely.
8. With the on X valve I do not have to bridge. I get colonoscopies annually along with other procedures as mentioned above. Have never bridged for anything.
9. I drink bourbon every weekend, I hit the bourbon trail annually. Alcohol only stays in your system for 24 hrs. I don’t get blitzed, but I will drink 2-3 cocktails at a time. The biggest thing to remember is they don’t want you to get drunk and fall ( especially your head) it could lead to an event. That is the biggest concern with drinking. I don’t do drugs.
10. If you hit your head go to the ER.
11. No regards. Know your upper limit based on your age. I exercise regularly. Treadmill/ stationary bike.
12. Clicking sounds are very negligible. I can hear it at night if I curl into myself. Sometimes during *** I can hear it. It is comforting to me. Nothing I worry about. Sometimes my kids can hear it. They say I am like the alligator on peter pan. The clicking with the on X is very minimal.
13. 9 I wanted a 1 and done surgery. Sometimes with all my procedures I wonder about a tissue valve. My cardiologist told me every subsequent heart surgery is harder to recover from and at some point the diameter of the valve becomes smaller each time they have to replace it. At some point you will no longer be able to have a valve replacement.
14. I can’t tell you what to do. Its your decision. All I can tell you is I am happy with my On X valve. I live a very active lifestyle and don’t worry about my heart. The minimal clicking I can hear on occasion is comforting to me. I know my heart is working properly. Good luck on your decision. If I can give you any other information let me know.

 

[pellicle]

5. I would say it has been an 8. I have lynch syndrome which makes me susceptible to different cancers. So I have to have procedures every year for surveillance. So I am on and off warfarin quite frequently.

I hope this helps with making that more like a 5

http://cjeastwd.blogspot.com/2022/05/rapid-dust-off-inr-management.html

 

[Buckeye]

Pellicle, good information to know for sure, Thank you.
I was wondering does the articles you referenced take into account the type of mechanical valve one has? I have been told by my cardiologist that my valve, the On X is a superior valve in that the blood flow through the valve is less turbulent and therefore doesn’t damage the blood as easily as some other valves. He has stated with my particular valve I could have a ACT therapy of 1.8 to 2.0, however my clinic likes to keep me in the 2.0 to 3.0 range. I self manage and test at home. I try to keep my range somewhere between 2.0 and 2.5. So I guess what I am saying is that if my cardiologist says my normal INR with ACT therapy could be 1.8-2.0 with this valve, going down to 1.3-1.4 for a couple of days without warfarin isn’t that big of a deal is it? Am I wrong? Is he wrong? I really don’t like going off warfarin, so I may ask my cardiologist about the above article next time I see him before a procedure. My body has so far tolerated warfarin pretty well. I am usually back in range within a couple of days after restarting therapy. Thanks again.

 

[pellicle]

Hi

Pellicle, good information to know for sure, Thank you.

totally welcome, btw I'm the author of that (yes its my blog).

I was wondering does the articles you referenced take into account the type of mechanical valve one has?

I guess you didn't dig down and read the article it was based on and that contained the citations of studies indicating that its all mechanical valves.

... I have been told by my cardiologist that my valve, the On X is a superior valve in that the blood flow through the valve is less turbulent and therefore doesn’t damage the blood as easily as some other valves.

many have, its advertising jism and has no actual scientific basis. Indeed the fine print from On-X themselves is "to go with what evidence suits you" because one size does not fit all. Eg as this thread clarifies for a member here.

... He has stated with my particular valve I could have a ACT therapy of 1.8 to 2.0

you could, but that would be risky in the longer term.

, however my clinic likes to keep me in the 2.0 to 3.0 range.

prudent

I self manage and test at home. I try to keep my range somewhere between 2.0 and 2.5.

so I guess you aren't using a clinic anymore (self manage means self determination of dose based on INR), and if you can manage to be within that range and don't remain long under 2.2 I'd concur that's a good range

... going down to 1.3-1.4 for a couple of days without warfarin isn’t that big of a deal is it?

agreed and the very basis of that post. Indeed 1.4 is the place where most surgeons will be comfortable to operate.

I'd read that post carefully, not knowing what you know or what your degree area is makes it harder to know how used to reading papers about science you are.

so I may ask my cardiologist about the above article next time I see him before a procedure...

good idea ... he may dismiss it without reading (because its not peer reviewed but cited peer reviewed content) it but

Reach out if you want to chat more about this

Best Wishes

 

[Chuck C]

Hi.

Somehow I managed to miss this thread until now. It appears that you have already made your decision, but I'll go ahead and add my voice and give my answers for the benefit of others who might come across this thread in the future.


1. At what age did you get your mechanical valve?
Age 53

2. How long did you have / have you had your mechanical valve for?
Just shy of 2 years.

3. If your valve failed, what was the reason?
My St Jude mechanical valve has not failed. If you mean my native valve, I had a bicuspid aortic valve, BAV, which became severely stenotic when I was 53.

4. Do you self manage your Warfarin, or go to a lab?
I've been self managing since about 2 weeks after surgery.

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. The only thing that really changed for me was that I did boxing and kick boxing as a hobby before surgery. I decided it would be best to stop that activity. I still do all my other activities and am very physically active.

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 stopped taking one supplement, once I was on warfarin. Prior to warfarin, I was taking tumeric. Tumeric may act like aspirin, with some anti-platelet effects, which are not picked up as an increase in INR. Tumeric has anti-inflammatory properties, but I have very low inflammation markers, so I figure it is best to just avoid it for me. I have had some dishes with tumeric with no apparent adverse effects.

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 have not had to bridge. I had a thyroid procedure and just reduced my INR below 1.5 for a short period, the day of surgery. Pellice has documented my experience doing this and has linked it above. There have been studies published which support lowering INR as superior to bridging, with fewer events, for many surgeries. For major surgeries, bridging is still the standard, but for less severe procedures, there seem to be a number of surgeons moving towards lowering INR vs bridging.
I have not had a colonscopy, instead opting to get Cologuard. If I do need a colonoscopy at some point, I will work with a doctor who subscribes to lowering of INR for this procedure vs bridging.

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 can't speak to cannabis, but I drink regularly. Some days I don't drink at all. Some days I have 1 or 2 and on a festive day I might drink 5 or 6. I have tested extensively before and after drinking. One or two do not appear to move my INR. If I drink 5 or 6, it will move my INR a little, but never enough to be concerning. For example, I might be at 2.4 one morning, then drink 6 beers that day, and be at 2.8 the next morning. By the next day after that I will be back to 2.4, and sometimes I seem to get a little rebound to the downside, maybe down to 2.2 or so, if I was at 2.4 at baseline.
So, it would go something like this.
Morning day 1: INR= 2.4
Relive heavy drinking due to celebration of some sort- 6 beers.
Morning of day 2: INR= 2.8
Morning of day 3: INR= 2.2
Morning of day 4: INR= 2.4 or 2.5, basically about what it was on day 1.
I've seen this pattern a few times and yes, it took me some strips to figure it out, but I don't worry anymore about testing every time I have a drink and I don't worry that I need to drink exactly the same every day.


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?
It really depends on the severity of the injury for me. I participate in a grappling martial art and will catch an accidental knee or elbow to the head from time to time. I also bumped my head on the garage door pretty hard once. I paid close attention and watched for symptoms of hemorrhaging, but never felt the need to go to ER. But, I would err on the side of caution. If you hit your head, if you are nervous about it or in doubt, go to ER and get it checked out. If there is a serious bump to the head, whether on warfarin or not, one should get checked out in ER. For those of us on warfarin, I would suggest erring on the side of caution here and be more quick to get things checked 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'll try not to get carried away here, as I am an athlete and like to monitor my HR a lot. Basically no, I don't feel I have any limitations. My max HR was about 170 when I did a treadmill before surgery- about 3.5 years ago. I recently pushed myself on an uphill and got it up to 166. I'm not sure if that was my absolute top- I may be still at 170 or it may be 166/167 now. In that 3.5 years have passed since that treadmill, it would be normal if my max HR has gone down a few points, as it generaly dropps about 1 point per year, in terms of our max.

Today at Brazilian Jiu Jitsu our instructor was encouraging us to go hard during a take down drill. My partner was a 42 year old ex marine, wo is in good shape and I was tossing him around the mat a bit. The instructor jokingly told me to start acting my age, and then said I was training like a 25 year old or something. Well, before being on warfarin, I guess I did not always act my age in this regard, and I guess now post surgery and on warfarin I still don't act my age at times. My point is that I don't feel like the valve or warfarin have slowed me down much.

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?
I don't believe it has ever caused me to lose sleep. It has never bothered me at all.

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. I hesitate to put 10, because the choice is not a perfect one, regardless of which valve is chosen, but if I had the choice to make again, I would choose mechanical. The past 2 years have flown by. People often start to see the intitial signs of SVD in their echos after 5-6 years in their echos. 5 years will be here before I know it. The thought that, if I had chosen tissue, that in just a few years I might stard getting reports of SVD on my echos is something which did not appeal to me. I don't think it is a good idea to plan for repeat surgeries, when it can be avoided. At 53, choosing a tissue valve would have meant I would be planning for repeat surgeries. So, I don't second guess my choice.

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).
The first question I would ask is whether you plan to be consistent with taking warfarin and to fully appreciate how important this is. You are here on this forum, and that might seem like a silly question, but studies have shown that there are some individuals in the general population who are not good at compliance and don't take it seriously as they should.
If you appreciate the importance of being diligent with warfarin and if you don't have any medical contraindications to warfarin, then every guideline in the world would call for a 39 year old to get a mechanical valve. At 39 you would face many future surgeries with a tissue valve and studies have shown that young patients have a shorter life expectancy with tissue valves, due to the repeat surgeries, which is why the guidelines call for mechanical for young patients.