Possible 3rd Valve Replacement

[Homeskillet]

You should probably get your Lp(a) tested. It's a simple blood test that is often done with a cholesterol panel, such as the CardioIQ advanced lipid panel at Quest Diagnostics. It can also be ordered as a stand alone test at any major lab. It runs about $50.

Elevated Lp(a) is causal for both heart disease and valve disease. Often times when a patient presents with valve disease who is not BAV, who has not had rheumatic fever or endocarditis, it is discovered that the patient has elevated Lp(a). However, this is often over looked by cardiologists and despite it's strong association with valve disease, valve patients are often never tested for Lp(a). See link below for info on the association.

"High Lp(a) may also promote faster progression of aortic stenosis, culminating in earlier aortic valve replacement or death.
In the primary prevention setting, elevated Lp(a) is associated with several ASCVD outcomes, as well as aortic valve stenosis and cardiovascular and all-cause mortality. "

https://www.acc.org/Latest-in-Cardiology/ten-points-to-remember/2022/09/07/14/43/Lipoproteina-in-ASCVD-ESC-2022#:~:text=High Lp(a) may also,cardiovascular and all-cause mortality.

Also, you indicated that your porcine valve failed after about a year. In a study published this year, elevated Lp(a) was found to be strongly associated with early development of SVD for tissue valve patients. See link below:

Role of lipoprotein(a) concentrations in bioprosthetic aortic valve degeneration

https://heart.bmj.com/content/110/4/299


If your Lp(a) is normal, you will never need to get it tested again. Unlike LDL cholesterol, Lp(a) remains almost exactly the same throughout a patient's life. There is currently one treatment which lowers it 15% to 45% for most patients, but there is a treatment which lowers it about 80% called antisense which is well into its phase 3 trial and expected to get FDA approval next year.

Wowsie—Never even heard of this test. Will try to get done ASAP.

Thank you again.

 

[Springdogg]

I am sitting here 1 week post op from my 3rd surgery. From my previous 2 I was under the impression that the risk were significantly higher. I live in a city with a fantastic health system and top rate surgeons. I am very active and healthy 41 year old. I had resided that I would need to put in a mechanical valve when the 2nd tissue failed. After my cardiac cath pre op procedure both my cardiologist and surgeon started to talk to about considering a TAVR. This excited me because I would really hate to miss out on new valve options that COULD be coming that last and don't require warfarin. The day before the procedure my surgeon changed his mind based on 2nd echo he had me undergo. I am glad he did because it turned out that my previous valve had started to fall apart and a TAVR could have given me a stroke in this instance. So from there I really dug in on true risk of the surgery for me at my health and age. I considered what the future might offer. This included considering taking warfarin as I see new long lasting valves not requiring warfarin are put into new patients. I thought about getting another tissue valve that has has good historical data to last longer than my previous 2 (I have had some bad luck there) and then possibly getting a TAVR for the 4th. In the long run these decisions are incredibly hard/personal. I went with the tissue valve and told myself I need to keep in shape to prepare for the next time around. At 26, 34 and 41 I have time and time again decided to bet with science and deal with the recovery vs. the warfarin. That my choice.

My recommendation for you is to get the data from your doctors. What they say the risks are for you. In the end that's what will guide you to your decision.

 

[pellicle]

Hi there and welcome back

well, the following:

My recommendation for you is to get the data from your doctors. What they say the risks are for you. In the end that's what will guide you to your decision.

is exactly why I always disagree with the assertion that there is no perfect choice.

I disagree with this because there is a choice that is more optimal and choices which are (due to "individual circumstances") which are far less optimal; as you yourself say:

I am glad he did because it turned out that my previous valve had started to fall apart and a TAVR could have given me a stroke in this instance.

so clearly a TAVI would have been a very sub-optimal choice.

The difficulty is that it requires the patient to understand what is being said to them and by understand it I don't mean simply "able to repeat it" I mean "be able to write an essay on the topic and get it marked by a cardiologist just like you did at school (and if you went there University where that happens time and time again through undergrad and to even get your Honours or your Masters or your PhD.

This skill (the skill of becoming an expert in a topic) is not common in life unless you have a professional career; engineer, doctor, anyone who will expect to be sued for failure of "getting it right".

As a society we demand engineers get it right and we take it seriously when they don't

https://en.wikipedia.org/wiki/List_of_bridge_failures

Somehow medicine sidesteps that responsibility (try suing for malpractice if you doubt me).

decided to bet with science and deal with the recovery vs. the warfarin. That my choice.

This is a choice now made and is history, what matters is what you choose for your next one. Myself I look at it that way; science is about what we know. You've bet on what we don't know and don't have. So to me that's betting on hope and the faith you have in that hope.

There are patients here who have had 5 surgeries, I've only had 3. I hope you get the sort of outcomes they got (good ones by the way).

Best Wishes

 

[Gail in Ca]

I, like most open heart redo patients, expected to be able to have a 4th surgery if my mitral repair from the 3rd failed.
I’ve recently had the bad news from the top surgeon at the #2 heart hospital that I’m too high risk for a 4th surgery and my only possible option is TMVR off label and ‘hope’ it lasts 10 years. (5-7yrs is average). I’ll have a CT today to find out if I’m even a candidate for this procedure.
The TAVR valve doesn’t last long either.
I don’t feel sick or feeble, I’m in great shape but I’m not a redo candidate and it sucks!

 

[Survived03]

I’ve recently had the bad news from the top surgeon at the #2 heart hospital that I’m too high risk for a 4th surgery and my only possible option is TMVR off label and ‘hope’ it lasts 10 years. (5-7yrs is average)

Thinking about your case and praying for you Gail.

 

[Chuck C]

I, like most open heart redo patients, expected to be able to have a 4th surgery if my mitral repair from the 3rd failed.
I’ve recently had the bad news from the top surgeon at the #2 heart hospital that I’m too high risk for a 4th surgery and my only possible option is TMVR off label and ‘hope’ it lasts 10 years. (5-7yrs is average). I’ll have a CT today to find out if I’m even a candidate for this procedure.
The TAVR valve doesn’t last long either.
I don’t feel sick or feeble, I’m in great shape but I’m not a redo candidate and it sucks!

Sorry to hear this Gail.

I don’t feel sick or feeble, I’m in great shape

That is very good news.

Wishing you all the best with your TMVR and hope that you are one of the fortunate ones and that it lasts much longer than expected.

 

[vitdoc]

I, like most open heart redo patients, expected to be able to have a 4th surgery if my mitral repair from the 3rd failed.
I’ve recently had the bad news from the top surgeon at the #2 heart hospital that I’m too high risk for a 4th surgery and my only possible option is TMVR off label and ‘hope’ it lasts 10 years. (5-7yrs is average). I’ll have a CT today to find out if I’m even a candidate for this procedure.
The TAVR valve doesn’t last long either.
I don’t feel sick or feeble, I’m in great shape but I’m not a redo candidate and it sucks!

I too was faced with a 4th surgery about 8 yrs ago. I had 3 associated with the aortic valve and the aorta. But my mitral had markedly decompensated with insufficiency. I was between a 4th open heart and mitral clips. I was about to travel to the surgeon's location when I got a call suggesting I try the clip instead of surgery. They never explicitly stated I would not make it but clearly they (and several other surgeons) were not clamoring to do my case. So I lucked out and had the number one clip person in the US (by numbers) do the procedure with two clips placed with a very good outcome. Modest regurge and no significant stenosis. I am curious other than having 3 previous surgeries why your physicians feel you can not have a 4th? Any special issues? Also if most of your problem is regurge maybe the clip is an option. It also beat the hell out of going through open heart surgery. And it is still working well at 8 yrs out.
Good luck.

 

[Steve B]

What to say ... I've been through three OHSs for AVR (tissue, On-X, On-X) - #1 (2011) was to replace a bicuspid valve; #2 (2015) was due to endocarditis; and #3 (2016) was a re-fit because #2 had been done under difficult, emergency conditions (the endocarditis had left the local tissue in a bad state for accepting stitches) and there was significant para-valvular leakage. That see,ed to be an end to the saga but now, eight years on, I'm experiencing significant leakage again and am in the midst of investigations (MRI scan, trans-oesophageal echocardiogram, PET-CT scan) with the prospect of a fourth OHS looming large.
Recovery after previous three was OK - no reason to suspect #4 won't be as good - if not better. At least I know what to do now! Just focussed on being in as good a shape as possible in terms of fitness/general health (and mental health too).

 

[Gail in Ca]

Surgeon said I was very high risk for something to go wrong during a 4th surgery, like a stroke. He just said if he were me he would do the TMVR off label and hope to get 10 years from the valve.
I’m not a candidate for mitraclip because my mitral valve area is very tight from being repaired in 09. This was the first time I’ve been told no, so it shocked me.
Weirdly, after my CT w contrast yesterday to see if I qualify for the TMVR, I started crying when I got to my car. All the concern about my future just hit me, I guess, and I had to cry it out.

 

[tom in MO]

Crying is a good release. Strangely it can help heal. My prayers are with you and yours.

 

[vitdoc]

Surgeon said I was very high risk for something to go wrong during a 4th surgery, like a stroke. He just said if he were me he would do the TMVR off label and hope to get 10 years from the valve.
I’m not a candidate for mitraclip because my mitral valve area is very tight from being repaired in 09. This was the first time I’ve been told no, so it shocked me.
Weirdly, after my CT w contrast yesterday to see if I qualify for the TMVR, I started crying when I got to my car. All the concern about my future just hit me, I guess, and I had to cry it out.

Clearly a clip is not for you due to the stenosis.
So it comes down to a procedure that might go 10 or 5 years or totally unknown. Then what? Still not sure why they think you are at such high risk for complications. I would get another opinion ASAP.

 

[Homeskillet]

Clearly a clip is not for you due to the stenosis.
So it comes down to a procedure that might go 10 or 5 years or totally unknown. Then what? Still not sure why they think you are at such high risk for complications. I would get another opinion ASAP.

Gail—Not that it matters one wit, but I keep thinking the same thing about your potential 4th procedure.

Personally, I would get super-aggressive & locate someone who will give you a 2nd (or even 3rd or 4th) opinion…ASAP. Just my 2-cents.

 

[carolinemc]

Surgeon said I was very high risk for something to go wrong during a 4th surgery, like a stroke. He just said if he were me he would do the TMVR off label and hope to get 10 years from the valve.
I’m not a candidate for mitraclip because my mitral valve area is very tight from being repaired in 09. This was the first time I’ve been told no, so it shocked me.
Weirdly, after my CT w contrast yesterday to see if I qualify for the TMVR, I started crying when I got to my car. All the concern about my future just hit me, I guess, and I had to cry it out.

So sorry, but things have a strange way of working out unexpectedly. So sorry.

 

[Gail in Ca]

I’ve thought of seeing Dr Starnes or driving back to see the Stanford doctor my cardiologist said he would send me to if I still lived there and needed another surgery. However, why should I not take a well respected surgeon’s advice about not having a 4th surgery? Dr Trento has done every kind of heart surgery.
If I demanded another surgery or found a surgeon who would do it, would I feel relief or even more concern for dismissing the first surgeon’s opinion.
I don’t know. I’m in a quandary.

 

[Homeskillet]

I’ve thought of seeing Dr Starnes or driving back to see the Stanford doctor my cardiologist said he would send me to if I still lived there and needed another surgery. However, why should I not take a well respected surgeon’s advice about not having a 4th surgery? Dr Trento has done every kind of heart surgery.
If I demanded another surgery or found a surgeon who would do it, would I feel relief or even more concern for dismissing the first surgeon’s opinion.
I don’t know. I’m in a quandary.

Personally, I’d want to at least hear what other surgeons have to say on the matter.

I have zero doubt that Trento has the utmost respect of his/her peers for a reason, but there are many-many-many highly regarded thoracic surgeons out there. For me, I would want to consider their reasoning at the very least, express *ALL* of my concerns—and neither would I stop at more than one alternate opinion.

We’ll help you pray for the right surgeon!

 

[Homeskillet]

Personally, I’d want to at least hear what other surgeons have to say on the matter.

I have zero doubt that Trento has the utmost respect of his/her peers for a reason, but there are many-many-many highly regarded thoracic surgeons out there. For me, I would want to consider their reasoning at the very least, express *ALL* of my concerns—and neither would I stop at more than one alternate opinion.

We’ll help you pray for the right surgeon!

My cardio actually called me today from his personal phone & spent time discussing my situation. (Very rare needle-in-a-haystack cardiologist!)

He’s actually sending me to OHSU (Portland, OR) who has a highly reputable valve program: https://www.ohsu.edu/knight-cardiovascular-institute/heart-valve-program

The worrisome thing for us right now is that they’re going to do a TEE before OHSU contacts me (they’ve already sent the referral) in an effort to speed up the diagnostic process. This is where things get spooky since the last time my cardio did a TEE he sent in a referral to the surgeon for immediate surgery—which I’m obviously not looking forward to (to put it mildly—wife’s already [physically] sick at the idea of a 3rd OHS).

I *BARELY* survived the last one. For me, the immediate post-operative days & nights are where the most danger lies for some reason.

 

[vitdoc]

I’ve thought of seeing Dr Starnes or driving back to see the Stanford doctor my cardiologist said he would send me to if I still lived there and needed another surgery. However, why should I not take a well respected surgeon’s advice about not having a 4th surgery? Dr Trento has done every kind of heart surgery.
If I demanded another surgery or found a surgeon who would do it, would I feel relief or even more concern for dismissing the first surgeon’s opinion.
I don’t know. I’m in a quandary.

The problem as I see it is that the current suggestion is very problematic with a very unclear duration of function and with no other options if the valve fails other than an open procedure. So without the possibility of an open procedure your life expectancy is strongly tied to how this valve performs. So again the question is why does the surgeon feel that you might have a dire outcome with a fourth open procedure? Or does he feel that most heart patients don't do well with a fourth?
Is there something specific to you that is generating this recommendation?

I have met Dr. Trento he has a very good reputation and vast experience. He was involved with signing off on my mitral clip procedure 8 years ago so I would not dismiss his suggestions. But getting one or in your case maybe two other opinions might be helpful.

The American heath care system has some very significant flaws but it also has some strong pluses. We have some of the best physicians and programs in the world for a variety of medical issues. So if you have the ability to access these people /programs you should take advantage and use them. They may all agree.
Or not. So again good luck with whatever you do.

 

[Gail in Ca]

Yes, my questions and concerns are the same. I just had the CT w contrast a couple of days ago of the chest, abdomen and pelvis. Haven’t gotten the results, yet.
I’ll probably end up getting another opinion or two. It’s just a hard thing to do when I’m an introvert!

 

[tom in MO]

Introvert is a label...don't label yourself. You can get done what is needed. We are all more complex than the labels. Prepare your questions so you don't forget what you want to know.

 

[pellicle]

I’ll probably end up getting another opinion or two. It’s just a hard thing to do when I’m an introvert!

I think that's wise and I agree with Tom in MO, push through this. All we can do is listen and advise, but you can be sure we are listening and care.

Best Wishes