My first official post

[MKM]

Hello all and thank you for your help. I've been reading and absorbing your information over the past week or so. Tomorrow I talk to the heart surgeon about a Mitral Valve and Aortic Valve replacement (and possibly Tricuspid valve.) The main reason for the visit is to get on his surgery calendar and to ask any follow up questions. I was diagnosed in Dec 2020 with AFib and EKG, Sonigram, TEE, chest xrays, cardiac cath showed mitral valve stenosis and aortic stenosis due to rheumatic fever from when I was a kid. (Who knew?!)

Dec 21, 2020 I went to ER because I had a blood clot in my kidney. I was then put on coumadin and have not had any issues with taking it. So, warfarin and metoprolol are my nightly meds.

My first question to you is what questions should I ask the surgeon tomorrow that you wish you had asked or known prior to your surgery? I live in Northern Colorado and the procedure will take place at Medical Center of the Rockies in Loveland.

I am 66 and leaning toward tissue valve instead of mechanical - I am still doing my research. Thank you in advance for your comments and suggestions. Your stories have given me hope.

 

[pellicle]

Hi and welcome

I never had any questions before surgery that I'd not asked ... and to be honest I didn't really have many because the explanations I got were top notch

At 66 I don't think its a highly significant issue which way you go. The clear and well documented issue is simple: tissue prosthesis fail structurally over time and have lower rates (about 10%) of needing life long Anti Coagulation Therapy. Bileaflet prosthetics have insignificant levels of failure but require lifelong ACT.

That's it in summary.

In my time on this site, I've seen a few cases here when someone picks a bio-prosthesis to ACT, but ends up being on warfarin life long anyway due to one of the well documented possibilities, perhaps you should ask about that? That would make AC Therapy quite the bitter pill to swallow each day.

Also as you age the chances of being on AC Therapy due to stroke propensity is very real too .. if you pick a mechanical valve you'll simply never have to worry about that (unless you fail to take your medications).

People often discuss the view of "I'll have a bioprosthesis now (and myabe still end up on warfarin) and have a TAVR later when that fails". TAVR is not without risks despite the poster boys.

At 66 you stand a good chance of getting approaching 20 years out of a bioprosthesis, however SVD will impinge on your health probably by 15 years, which is perhaps the time when you least want anything making things worse. This is why for tissue bioprosthetics you'll find that the monitoring regime is higher than for mechanical valves. Indeed as you progress through time the monitoring of youve valve (echos, CT scans ...) will likely decrease (I'm up to 5 years now), but you'll find that its the opposite with a tissue.

If you are avoiding ACT due to the stories of horror about diet and drinking a few beers or glasses of wine then you can either believe that all of us here are lying and we are a plant by "the system" or that the stories you've heard are wrong or at least highly exaggerated.

Its true that as you age you'll need to manage ACT around things, but it is indeed not such a project as putting up the International Space Station. Here are two such "work around" with my "whys"

http://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
http://cjeastwd.blogspot.com/2020/10/another-example-small-procedure.html
as well as a detailed and reasonably exhaustive look at the reality of life on ACT

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
you'll note the dates are 2017, 2020 and 2014 ... in that order. Since 2014 I've only learned its more straightforward in practice than I expected.

I've been managing since 2012.

Best Wishes

 

[dick0236]

Welcome to the forum.

The only question I asked the docs was "what were my odds if I didn't have the surgery vs my odds if I did have the surgery?" The surgery has worked out even better than what the docs told me I could expect.

Your situation is far different from mine. The need for both aortic and mitral valves plus ongoing a-fib and your age of 66 raises a lot of questions.,,,,,
.....what are the odds of one, or both, tissue valves failing in your late 70s or 80s. I am now 85 and the thought of possible major surgery, at my age, would scare me "to death".
......the a-fib will require you to be on ACT(anti-coagulant therapy) in the future and the newer non-warfarin drugs normally are not given to a-fub/valve patients, either tissue or mechanical)
......you are currently on warfarin and seem to be managing it well. The warfarin fear seems to be one of the main reasons people choose tissue over mechanical valves. If warfarin is not an issue with you I would certainly explore a "one and done" surgery.

Either valve material/design will seemingly solve your current problems. Good luck to you and stick around this forum......your experiences will help someone who faces a similar dilemma.

 

[MdaPA]

Tomorrow I talk to the heart surgeon about a Mitral Valve and Aortic Valve replacement (and possibly Tricuspid valve.)

I am 66 and leaning toward tissue valve instead of mechanical

Think hard on this one as if you need 2 or 3 valves replaced and opt for tissue instead of mechanical valves then you will be leaving the door open for intervention(s) 15-20 years later when they fail. And understand that they may not fail at same time (i.e. MV may fail at 10 years, AV at 20 years) so you my need interventions at different times.

I was then put on coumadin and have not had any issues with taking it. So, warfarin and metoprolol are my nightly meds.

If you are already on Coumadin, then why are you not considering mechanical?

 

[MKM]

Welcome to the forum.

The only question I asked the docs was "what were my odds if I didn't have the surgery vs my odds if I did have the surgery?" The surgery has worked out even better than what the docs told me I could expect.

Your situation is far different from mine. The need for both aortic and mitral valves plus ongoing a-fib and your age of 66 raises a lot of questions.,,,,,
.....what are the odds of one, or both, tissue valves failing in your late 70s or 80s. I am now 85 and the thought of possible major surgery, at my age, would scare me "to death".
......the a-fib will require you to be on ACT(anti-coagulant therapy) in the future and the newer non-warfarin drugs normally are not given to a-fub/valve patients, either tissue or mechanical)
......you are currently on warfarin and seem to be managing it well. The warfarin fear seems to be one of the main reasons people choose tissue over mechanical valves. If warfarin is not an issue with you I would certainly explore a "one and done" surgery.

Either valve material/design will seemingly solve your current problems. Good luck to you and stick around this forum......your experiences will help someone who faces a similar dilemma.

--
Thank you for your comments. I will write your questions down to ask the doctor for I think they need to be addressed. As for tissue or mechanical valves, I am really a newbie here and am learning as I go.

I am leaning towards tissue valve because they already do valve-in-valve here on a regular basis and I expect to go in that direction when the tissue valves need to be updated. But, I am learning as I go. So much to learn! I appreciate your words and sharing your experience and insights with me.

 

[MKM]

Think hard on this one as if you need 2 or 3 valves replaced and opt for tissue instead of mechanical valves then you will be leaving the door open for intervention(s) 15-20 years later when they fail. And understand that they may not fail at same time (i.e. MV may fail at 10 years, AV at 20 years) so you my need interventions at different times.

I have no idea how to proceed which I why I am asking questions. I didn't realize that patients can walk around with 2-3 mechanical valves at the same time. I have tons to learn and have turned to the experts (ALL OF YOU) for first hand experience.

If you are already on Coumadin, then why are you not considering mechanical?

Thanks for your thoughtful comments. My eyes are blurred from all this research. I so appreciate your input.

 

[MKM]

Hi and welcome

I never had any questions before surgery that I'd not asked ... and to be honest I didn't really have many because the explanations I got were top notch

At 66 I don't think its a highly significant issue which way you go. The clear and well documented issue is simple: tissue prosthesis fail structurally over time and have lower rates (about 10%) of needing life long Anti Coagulation Therapy. Bileaflet prosthetics have insignificant levels of failure but require lifelong ACT.

That's it in summary.

In my time on this site, I've seen a few cases here when someone picks a bio-prosthesis to ACT, but ends up being on warfarin life long anyway due to one of the well documented possibilities, perhaps you should ask about that? That would make AC Therapy quite the bitter pill to swallow each day.

Also as you age the chances of being on AC Therapy due to stroke propensity is very real too .. if you pick a mechanical valve you'll simply never have to worry about that (unless you fail to take your medications).

People often discuss the view of "I'll have a bioprosthesis now (and myabe still end up on warfarin) and have a TAVR later when that fails". TAVR is not without risks despite the poster boys.

At 66 you stand a good chance of getting approaching 20 years out of a bioprosthesis, however SVD will impinge on your health probably by 15 years, which is perhaps the time when you least want anything making things worse. This is why for tissue bioprosthetics you'll find that the monitoring regime is higher than for mechanical valves. Indeed as you progress through time the monitoring of youve valve (echos, CT scans ...) will likely decrease (I'm up to 5 years now), but you'll find that its the opposite with a tissue.

If you are avoiding ACT due to the stories of horror about diet and drinking a few beers or glasses of wine then you can either believe that all of us here are lying and we are a plant by "the system" or that the stories you've heard are wrong or at least highly exaggerated.

Its true that as you age you'll need to manage ACT around things, but it is indeed not such a project as putting up the International Space Station. Here are two such "work around" with my "whys"

http://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
http://cjeastwd.blogspot.com/2020/10/another-example-small-procedure.html
as well as a detailed and reasonably exhaustive look at the reality of life on ACT

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
you'll note the dates are 2017, 2020 and 2014 ... in that order. Since 2014 I've only learned its more straightforward in practice than I expected.

I've been managing since 2012.

Best Wishes

Thanks so much for all your links to your research and input from past experiences. For now I am going to read some of this and formulate some questions to take to my appointment tomorrow. This forum is something special, isnt it?

 

[pellicle]

... This forum is something special, isnt it?

it sure is ... signal to noise ratio here is pretty good.

Best Wishes

 

[pellicle]

If you are already on Coumadin, then why are you not considering mechanical?

interestingly I missed this point ... lucky there's more than one pair of eyes on this stuff.
(*I note also that **** spotted it too)

 

[dornole]

Hi, I’m a fellow “who knew” rheumatic fever valve patient. But I found out about it and had a corrective procedure at 34 not 66.

I have a bunch of questions.

1) did they tell you that you need to proceed to surgery now? How severe is the stenosis? Are you symptomatic? Questions to review with your doc.
2) have they discussed the possibility of a repair? Specifically, I had a balloon valvuloplasty for my severely stenotic mitral valve, home the next day and stable for 18 years now. May not be an option for you but worth asking. FYI an interventional cardiologist would do that, not a surgeon.
3) I’m wondering why tissue too. Valve in valve does carry risk and the technology to do this for mitral is pretty new and might even still be for people who can’t survive surgery. Ask your surgeon
4) I’ve read on here that multiple mech valves can create flow issues in the heart, that could be a factor if you do need two , again a topic for discussion
5) my understanding is that past rheumatic fever accelerates the degradation of tissue valves. Just FYI.

Hope this gives you a preview of some of the things
That might be discussed and questions you might ask of the surgeon doesn’t bring them up first. Good luck

 

[Hyp2r]

Just purely of interest, does anyone here have 2 or more mechanical valves?. I’m very much like the OP having rheumatic fever damage my mitral valve and stenosis of the aortic. I had surgery to replace both 7 weeks ago.
I was keen on mech valves as I was on pradaxa for another issue and thought this would cover instead of warfarin, which I really struggled with 12 or so years ago. It doesn’t replace warfarin for heart valves. 3 seperate surgeons advised tissue as the better option- perhaps it’s something to do with multiple mechanical valves?. I do wish I’d questioned more though.
I also wonder about the ‘ticking’ of multiple mech valves.

Very happy at my results so far though and not having to bother with warfarin is a plus.

 

[MdaPA]

does anyone here have 2 or more mechanical valves?.

My wife has St Jude aortic and mitral mechanical valves going on 4 years now (along with a Porcine PV and a repaired TV). Annual echo's are normal so life is good!

3 seperate surgeons advised tissue as the better option- perhaps it’s something to do with multiple mechanical valves?

When she was seeking 2nd opinions, there were surgeons who recommended tissue but it was more to avoid anti-coaguation meds. The last opinion she got and where she ended up having her surgery was at Cleveland Clinic where the surgeon basically said you don't want a 4th OHS so I will only do mechanical valves on the left side of the heart (AV and MV's). It was that cut and dry for her.

I also wonder about the ‘ticking’ of multiple mech valves.

Yes, you can certainly hear the ticking. It has not faded like she was told it would and she has not gotten use to it. This might be due to her small frame/being thin. When she sleeps she listens to talk radio so she doesn't hear the ticking. The sounds coming from her heart amaze every doctor that listens to her heart!

 

[MKM]

Hi, I’m a fellow “who knew” rheumatic fever valve patient. But I found out about it and had a corrective procedure at 34 not 66.
Thanks so much for your comments. I was in the doctors office reading this post and happily added some of your questions to my list.
I have a bunch of questions.


1) did they tell you that you need to proceed to surgery now? How severe is the stenosis? Are you symptomatic? Questions to review with your doc.
The symptoms are more pronounced - harder to breathe when walking, there's 'no hurry' in me. Pain radiates from the heart area over the course of the day.

2) have they discussed the possibility of a repair? Specifically, I had a balloon valvuloplasty for my severely stenotic mitral valve, home the next day and stable for 18 years now. May not be an option for you but worth asking. FYI an interventional cardiologist would do that, not a surgeon.
Looking at surgery in middle of June.
Repair is not an option due to calcification on valve (I think that's what I heard)

3) I’m wondering why tissue too. Valve in valve does carry risk and the technology to do this for mitral is pretty new and might even still be for people who can’t survive surgery. Ask your surgeon
Which type of valve to use is still topic of discussion - Doctors and second opinion Doctor lean towards tissue.

4) I’ve read on here that multiple mech valves can create flow issues in the heart, that could be a factor if you do need two , again a topic for discussion.
Thanks, you have no idea how nice it is to bounce these questions off you in this forum.

5) my understanding is that past rheumatic fever accelerates the degradation of tissue valves. Just FYI.
Thank you. I will research this as well.

Hope this gives you a preview of some of the things
That might be discussed and questions you might ask of the surgeon doesn’t bring them up first. Good luck

 

[dornole]

“Repair is not an option due to calcification on valve (I think that's what I heard)”

Just so you know that is exactly what the valvuloplasty is designed to address - basically the balloon breaks open the calcified crusty valve. It reduced my stenosis from severe to moderate but also created moderate regurgitation. I’m in no way trying to push this as I’m not a cardiologist. But it is kind of a special-use solution that only applies to treat stenosis in cases where worsening the regurgitation by a degree is an acceptable outcome. I don’t *think* anyone else on here has had it done so I just want people to know it exists. As it’s not a surgical repair it’s in a separate category in a way. It was fantastic for me as I’ve been able to avoid open heart surgery and keep my native valve for another 18 years so far (procedure was at age 34). My twins who were born amid all that sudden heart chaos graduate from high school in a couple weeks.

I hope you get all the info needed to make your decisions and ultimately relief from symptoms. It’s no fun.

 

[MKM]

“Repair is not an option due to calcification on valve (I think that's what I heard)”

Just so you know that is exactly what the valvuloplasty is designed to address - basically the balloon breaks open the calcified crusty valve. It reduced my stenosis from severe to moderate but also created moderate regurgitation. I’m in no way trying to push this as I’m not a cardiologist. But it is kind of a special-use solution that only applies to treat stenosis in cases where worsening the regurgitation by a degree is an acceptable outcome. I don’t *think* anyone else on here has had it done so I just want people to know it exists. As it’s not a surgical repair it’s in a separate category in a way. It was fantastic for me as I’ve been able to avoid open heart surgery and keep my native valve for another 18 years so far (procedure was at age 34). My twins who were born amid all that sudden heart chaos graduate from high school in a couple weeks.

I hope you get all the info needed to make your decisions and ultimately relief from symptoms. It’s no fun.

Thanks for taking the time to write. I hope to get all my questions answered and to get on with a healthy life again. This forum has been really helpful.

 

[kimcdougc]

I had AVR in May of 2013 after interviewing 3 doctors and doing hundreds of hours of research. I chose the O-NX mechanical heart valve at age 53. I have been on warfarin since then and have not had any problems with it. Minor bruising and that is it. I would recommend going with the mechanical heart valve. No more surgeries hopefully. Lower warfarin amounts. It is your choice. I just gave you my experience. Good luck with your choice.

 

[MKM]

I appreciate you sharing your experience with me. I am amazed at the amount of research I am working through. The good thing is it takes my mind off my upcoming surgery.