Doc reversed the diagnosis

[Freebird]

Freebird - I'm not going to tell you mechanical versus tissue -- but at 58, the likelihood that you'll need a procedure to replace a failed/failing tissue valve in your lifetime is fairly high -- depending on how much longer you live, and other factors. The likelihood that you'll have to replace a mechanical valve are negligible -- I won't say that mechanical valves aren't sometimes replaced, but the track record for mechanicals is exceptional.

If you're going mechanical to avoid the clicking (which you get used to) or having to manage warfarin - realize that warfarin isn't that big a deal. I've been taking it for 28 years, and many on this forum have been using it much longer. It isn't really a big deal.

If you're gambling that by the time your tissue valve needs to be replaced, a new technology will have been developed that can be done through a catheter - realize that this is still a gamble. Perhaps they'll have an improved TAVI procedure and valves, perhaps they won't.

By that time, maybe they'll have developed an anticoagulant that doesn't require dosage adjustment and weekly testing. Maybe they won't.

Maybe, by the time your tissue valve fails (all of this assumes that you'll be around long enough for it to fail), they'll have a better mechanical that doesn't require anticoagulation.

This is all a bunch of 'perhaps' and 'maybes.' What should be fairly obvious is that, at 58, a tissue valve may not make it without having to be repaired or replaced at some time in your life. Second (or later) surgeries are always more complicated than the first - scar tissue to deal with, adhesions, and other stuff make it more difficult for the surgeons.

I'm sure that you've thought very carefully about this -- but, if you're avoiding mechanical because you want to avoid warfarin, please think again. (One more thing -- there are other reasons that people take warfarin - if you develop one of the other reasons, you may wind up taking it anyway).

Yes at my age I am thinking that if I go with tissue I could be looking at 2 OHS and one TAVR and maybe even in that order because doing a 2nd OHS at a younger age would most likely be a good move. No perfect answers here but I do appreciate your insight.

Are you saying you went 20 years in the state of severe stenosis, just watching it periodically on echos? Watchful waiting is what those of us with stenosis of the birth valve do. Not sure what you mean by "severe," but that usually means it's time for replacement. They do not wait for symptoms. As Pellicle indicated, the change due to stenosis is not linear when it gets bad. It can change quickly. That's why it's echos every 5 years, every 3 years, every year and then 6 months. My stenosis was due to a bicuspid valve. I never made it past the every year and only had my first "symptom" after being told "get thee to a surgeon" based upon the echo.

What was the thing that made you determine to have surgery? My cardiologist told me it was time to schedule surgery. I asked him when should I have it, next week or in a few months? He said "best get it done within less than three months, you don't want to suffer the syndrome known as sudden death." That kind of focuses you. I saw the surgeon a few weeks later and he said "soon". I got it done in a little more than a month from seeing the surgeon. After removal, my surgeon said my AV was severely clogged and ready to quit.

I had mine done at 55yo. I chose mechanical because I'd had surgery 3 times before, now 5 times total. No surgery is a pleasant process and they all have risks. I've never had an operation that has been 100% successful, there's always something. The good thing is it's usually not too big of a deal, but I've had pain from my first surgery 25 years ago every day. I just don't touch that part of my body By the way, the metric for success for OHS is life, not quality of life. Take the statistics with a grain of salt.

Thanks for your thoughts. I have a congenital bicuspid aortic valve. They are checking my echo every 6 months. I am in "severe stenosis" but apparently the echo shows that it hasn't damaged my heart yet and I don't have symptoms. My cardiologist suggested I meet with a surgeon and I met with two. The most well known/respected one is the one I'll be going with. His opinion was that I could get it done now or I could wait for symptoms. Thus I'm in that mode currently. My next echo is in March. If I still don't have symptoms then, but the echo shows a worsening, then I'm sure my cardiologist will say it's time.

 

[Eva]

.....What was the thing that made you determine to have surgery? I'd love it if I could just stay stable (without doing damage to my heart) for a few more years since I'm 58 and would need at least two more replacements.

Free bird, My apologies about the figure 20.
Correction: my valve was moderately leaking for over 20 years. Became severe in 2002, surgery in September 2008.
What determined my surgery was my consistently increasing fatigue and calcification of my aortic, and deterioration of my mitral valve...I ran out of breath going upstairs or talking on phone, sighing a lot while sitting at rest!

What kept me going in my opinion is partly luck and partly change in some of my life style. Doctors commended continue doing whatever I was doing!!
What I changed: I stopped anything that over-exerted my heart! Instead of playing 2 hours tennis four times a week, I swam at leisure pace! I stopped moving heavy furniture and/or carrying heavy plant pots from one place to another. I stopped my weekly 2-hrs high-impact aerobic classes to one hour low impact or just walking, drank one cup of Turkish coffee instead of 4 or 5 a day, checked my TSH regularly, etc. etc.

Best is that you ask for echo with contrast. It may give you peace of mind. And from my experience, don’t let worry steal the joy of the present time!
Good luck and keep us posted.

 

[Freebird]

Free bird, My apologies about the figure 20.
Correction: my valve was moderately leaking for over 20 years. Became severe in 2002, surgery in September 2008.
What determined my surgery was my consistently increasing fatigue and calcification of my aortic, and deterioration of my mitral valve...I ran out of breath going upstairs or talking on phone, sighing a lot while sitting at rest!

What kept me going in my opinion is partly luck and partly change in some of my life style. Doctors commended continue doing whatever I was doing!!
What I changed: I stopped anything that over-exerted my heart! Instead of playing 2 hours tennis four times a week, I swam at leisure pace! I stopped moving heavy furniture and/or carrying heavy plant pots from one place to another. I stopped my weekly 2-hrs high-impact aerobic classes to one hour low impact or just walking, drank one cup of Turkish coffee instead of 4 or 5 a day, checked my TSH regularly, etc. etc.

Best is that you ask for echo with contrast. It may give you peace of mind. And from my experience, don’t let worry steal the joy of the present time!
Good luck and keep us posted.

Thanks for the clarification. So you're saying you were in Severe Stenosis stage from 2002 to 2008 or about 5-6 years? During that time did you do echos every 6 months?

 

[Eva]

Thanks for the clarification. So you're saying you were in Severe Stenosis stage from 2002 to 2008 or about 5-6 years? During that time did you do echos every 6 months?

When I said I was in “exact similar situation”, I was referring to the contradiction of cardios’ opinions, not to “severe stenosis”!
I had severe regurgitation and had echoes every six months from March 2002 to March 2008. Surgery was in September.

 

[carolinemc]

Yes at my age I am thinking that if I go with tissue I could be looking at 2 OHS and one TAVR and maybe even in that order because doing a 2nd OHS at a younger age would most likely be a good move. No perfect answers here but I do appreciate your insight.

Thanks for your thoughts. I have a congenital bicuspid aortic valve. They are checking my echo every 6 months. I am in "severe stenosis" but apparently the echo shows that it hasn't damaged my heart yet and I don't have symptoms. My cardiologist suggested I meet with a surgeon and I met with two. The most well known/respected one is the one I'll be going with. His opinion was that I could get it done now or I could wait for symptoms. Thus I'm in that mode currently. My next echo is in March. If I still don't have symptoms then, but the echo shows a worsening, then I'm sure my cardiologist will say it's time.

Happy that you are going with a surgeon you feel confident with and going with the gut feeling. It is always best to do things as soon as possible, but also with information. Good luck and keep us posted of when the surgery will be.

 

[tom in MO]

...My cardiologist suggested I meet with a surgeon and I met with two. The most well known/respected one is the one I'll be going with. His opinion was that I could get it done now or I could wait for symptoms. Thus I'm in that mode currently. My next echo is in March. If I still don't have symptoms then, but the echo shows a worsening, then I'm sure my cardiologist will say it's time.

I was counseled not to wait for symptoms, maybe our echos were different.

The reason given to me was since surgery is needed anyway, if I waited until I got the symptoms, it could be an emergency situation with no time to plan, pick a hospital, choose a surgeon,etc. and fit it into my life. I was also given the warning that if I waited I could suffer "the syndrome known as sudden death." My family was much happier having it planned...I waited until after my daughter's birthday and gave my job plenty of notice.

I had my first dizzy/sit down spell a few weeks after being told to get it fixed. A few weeks after surgery, I could walk up and down the hills in my neighborhood better than before. Turns out I was experiencing symptoms of stenosis before, but they came on so gradual I didn't notice the change. This is a pretty common observation on this forum.

Make sure you know the symptoms.

Good luck.

 

[Eva]

. Turns out I was experiencing symptoms of stenosis before, but they came on so gradual I didn't notice the change. This is a pretty common observation on this forum.

Make sure you know the symptoms.

Good luck.

Ditto! Yes, symptoms creep on us and we could relate them to other reasons!

 

[Astro]

I was counseled not to wait for symptoms, maybe our echos were different.

The reason given to me was since surgery is needed anyway, if I waited until I got the symptoms, it could be an emergency situation with no time to plan, pick a hospital, choose a surgeon,etc. and fit it into my life. I was also given the warning that if I waited I could suffer "the syndrome known as sudden death." My family was much happier having it planned...I waited until after my daughter's birthday and gave my job plenty of notice.

I think that the topic of symptoms is difficult. The current AHA/ACC guideline (America's 2014 guideline) uses the presence of symptoms as their first indication for surgery. They gloss over what counts as "symptoms".

Since these guidelines were published, there have been several studies published that advocate earlier surgery to improve long-term survival (I am happy to provide the references to those who are interested). The concern is that once heart damage (cell death and fibrosis) starts, replacing the valve does not necessarily mean that the process of heart damage will stop or reverse. This means that survival after 10 or 15 years is not necessarily what it should be. Personally, I would agree with Tom's cardiologist about not waiting for symptoms. Survival is the basis of my reason rather than convenience. However, I acknowledge that medical opinion is split about this topic. Also, many people on this forum waited until symptoms occurred and are doing really well (but we won't hear continuing posts from those who didn't).

What are "symptoms" is unclear:
Getting seriously short of breath walking up one flight of stairs - everyone would agree are symptoms.
A person who normally runs 5 miles a day, has noticed that they are 5 minutes slower - they can still run 5 miles which is way better than most people but it is a significant decline for that person. This level of symptoms is probably an important warning sign. Does it warrant surgery? What if this person is 10 minutes slower? Do you wait until they can't run 5 miles anymore?

I think that time course is really important. If a valve is rapidly deteriorating then you have less time before something will need to be done. This makes the decision easier.

I am sorry that my reply rambles and does not give definite answers.

 

[Astro]

I was also given the warning that if I waited I could suffer "the syndrome known as sudden death."

I laughed when I read Tom's comment about "the syndrome known as sudden death". That line would certainly get most people's attention. Rambo and Arnie dish out "syndrome known as sudden death".

Fortunately, this syndrome is relatively rare unless there is also coronary artery disease or there has been refusal to follow medical advice. I think that the bigger question is survival after 10+ years which relates more to whether permanent heart damage has occurred.

There are new tests, such as global longitudinal strain (GLS) which may provide further insights about when permanent damage is starting. There are probably many people on these forums who have had a GLS test.

 

[Freebird]

I think that the topic of symptoms is difficult. The current AHA/ACC guideline (America's 2014 guideline) uses the presence of symptoms as their first indication for surgery. They gloss over what counts as "symptoms".

Since these guidelines were published, there have been several studies published that advocate earlier surgery to improve long-term survival (I am happy to provide the references to those who are interested). The concern is that once heart damage (cell death and fibrosis) starts, replacing the valve does not necessarily mean that the process of heart damage will stop or reverse. This means that survival after 10 or 15 years is not necessarily what it should be. Personally, I would agree with Tom's cardiologist about not waiting for symptoms. Survival is the basis of my reason rather than convenience. However, I acknowledge that medical opinion is split about this topic. Also, many people on this forum waited until symptoms occurred and are doing really well (but we won't hear continuing posts from those who didn't).

What are "symptoms" is unclear:
Getting seriously short of breath walking up one flight of stairs - everyone would agree are symptoms.
A person who normally runs 5 miles a day, has noticed that they are 5 minutes slower - they can still run 5 miles which is way better than most people but it is a significant decline for that person. This level of symptoms is probably an important warning sign. Does it warrant surgery? What if this person is 10 minutes slower? Do you wait until they can't run 5 miles anymore?

I think that time course is really important. If a valve is rapidly deteriorating then you have less time before something will need to be done. This makes the decision easier.

I am sorry that my reply rambles and does not give definite answers.

Thank you for acknowledging that this is a point of contention in the medical community.

I feel that I have done all of my homework.

I have met with two different cardiologists. I have my cardiologist chosen. After interviewing two of the three surgeons recommended to me by my cardiologist, I have my surgeon chosen. The hospital where I will have the surgery is a 15 minute walk from my home. I pass it nearly every day.

We recorded our appointment with both surgeons. Here is the direct transcript of what my chosen surgeon said "If psychologically you are comfortable with waiting with that, I’ve got no problem with that. There are other patients who are completely different who say, I know I’m gonna need this done in a year, let’s do this. I’m not gonna sit around. Other patients, sounds kinda like what you are, you know what I’m totally comfortable with waiting until my body says it’s time or when you guys twist my arm, then I’ll go. Or you could do it now. Either way. If you’re not gonna be a regular person and live your life and enjoy it, then let’s get your surgery behind you. Others say look I know what I got, I’m feeling fine, I’ll see you in 6 more months and get an echo.If patients are good with that,I’m totally good with it.”

I've since had a total 3 echocardiograms in the last year and my next one is scheduled for March. As I said, I'm awaiting either symptoms or a further diminished echo. I appreciate everyone's concern, but I am listening to the folks who know my situation best.

 

[Astro]

Thank you for acknowledging that this is a point of contention in the medical community.

I feel that I have done all of my homework.

I have met with two different cardiologists. I have my cardiologist chosen. After interviewing two of the three surgeons recommended to me by my cardiologist, I have my surgeon chosen. The hospital where I will have the surgery is a 15 minute walk from my home. I pass it nearly every day.

We recorded our appointment with both surgeons. Here is the direct transcript of what my chosen surgeon said "If psychologically you are comfortable with waiting with that, I’ve got no problem with that. There are other patients who are completely different who say, I know I’m gonna need this done in a year, let’s do this. I’m not gonna sit around. Other patients, sounds kinda like what you are, you know what I’m totally comfortable with waiting until my body says it’s time or when you guys twist my arm, then I’ll go. Or you could do it now. Either way. If you’re not gonna be a regular person and live your life and enjoy it, then let’s get your surgery behind you. Others say look I know what I got, I’m feeling fine, I’ll see you in 6 more months and get an echo.If patients are good with that,I’m totally good with it.”

I've since had a total 3 echocardiograms in the last year and my next one is scheduled for March. As I said, I'm awaiting either symptoms or a further diminished echo. I appreciate everyone's concern, but I am listening to the folks who know my situation best.

It sounds like you have settled on a plan that has sensible people keeping an eye on you. You are likely to do well.
Best wishes. If you don’t mind, keep us informed how you go.

 

[tom in MO]

I laughed when I read Tom's comment about "the syndrome known as sudden death". That line would certainly get most people's attention. Rambo and Arnie dish out "syndrome known as sudden death".

Fortunately, this syndrome is relatively rare unless there is also coronary artery disease or there has been refusal to follow medical advice. I think that the bigger question is survival after 10+ years which relates more to whether permanent heart damage has occurred.

There are new tests, such as global longitudinal strain (GLS) which may provide further insights about when permanent damage is starting. There are probably many people on these forums who have had a GLS test.

Well sudden death syndrome sure helped focus me. I also came upon a study of deaths from un-diagnosed valve failure and there was a significant number of them, ranging in age from about 16 to 80 the median being 55, my age at the time.. These were all sudden deaths. My doctors were clear that for me, waiting was risky and of no benefit. Upon removal, the valve was ready to fail.

 

[Eva]

Thank you for acknowledging that this is a point of contention in the medical community.

I feel that I have done all of my homework.

I have met with two different cardiologists. I have my cardiologist chosen. After interviewing two of the three surgeons recommended to me by my cardiologist, I have my surgeon chosen. The hospital where I will have the surgery is a 15 minute walk from my home. I pass it nearly every day.

We recorded our appointment with both surgeons. Here is the direct transcript of what my chosen surgeon said "If psychologically you are comfortable with waiting with that, I’ve got no problem with that. There are other patients who are completely different who say, I know I’m gonna need this done in a year, let’s do this. I’m not gonna sit around. Other patients, sounds kinda like what you are, you know what I’m totally comfortable with waiting until my body says it’s time or when you guys twist my arm, then I’ll go. Or you could do it now. Either way. If you’re not gonna be a regular person and live your life and enjoy it, then let’s get your surgery behind you. Others say look I know what I got, I’m feeling fine, I’ll see you in 6 more months and get an echo.If patients are good with that,I’m totally good with it.”

I've since had a total 3 echocardiograms in the last year and my next one is scheduled for March. As I said, I'm awaiting either symptoms or a further diminished echo. I appreciate everyone's concern, but I am listening to the folks who know my situation best.

I love your surgeon! you’re on the right track. Good luck and keep us posted!