Tavr for intermediate risk and my struggle

[coryp]

Hello all,

Some background. im 45, had avr and aneurysm repair/root remodel 11 yrs ago. Have found out in October that i should prepare for another surgery as the valve is starting to calcify. Was not ready then and still not ready, i delayed and have been monitoring every three months. I had a bovine valve put in with the intention of Tavr technology being my next step. According to my surgeon it is still not for me and we need to do a 2nd ohs now and then most certainly in 10-15 yrs tavr will be my option.

I have been reading and researching and reached out to my old cardio whom suggested i meet the lead guy and most experienced tavi guy in the world who is at cedars and discuss the possibilities now and later.

I went for my Echo yesterday and it has become worse, i followed that visit with a trip to cedars to meet this Dr.

The below is an email i sent my cardiologist last night regarding my visit to Dr Makkar (The person who has done the most tavi in the world to date)

I did my echo yesterday and went to see Dr Makkar. Echo shows AI and AS and leakage is still moderate. EF now around (not confirmed) 55-60 vs 55-65 as per last.
He was the 1st to see it and says take it easy and its almost time say mid June to early July would be my LIMIT.

When i saw Dr Makkar he reviewed all and was wondering why Dr Raissi and Trento did not suggest this option which best suits me? He feels i am intermediate risk based on my aortic root and arch done back during the 1st surgery. He said that he should be able to give me another 12-14 years conservatively with 2 tavi procedures using SAPIEN 3, first will be the norm then tavi in tavi for the 2nd. He wants to do the ct scan and Angiogram to confirm i'm the perfect candidate and would then go back to Dr raissi and Trento and seek there approval for treatment

Ultimately i WILL have to undergo another OHS at some point it appears so this is only a bridge, either next month or in 12-14 years when the 2nd valve goes and there is no more space to do another tavi, some questions come to mind:
will there be a large difference doing the OHS at 45 vs 58-60? MAkkar says almost none.
I guess it comes down to surgery now or later, and why later would be a better option (if i live that long)?
I think i have been trying to avoid the dreaded third ohs with all the surgical risks and scar tissue etc, does 2 TAVI procedures over 12 -14 years present less risk than a 3rd OHS ?
Of course i think (probably because i am scared of this surgery a 2nd time) that delaying until 60 when i'm most likely retired and have far less things going on sounds like the better option as well as maintaining my healthy life style with less risk and less metal in me to close the sternum up again.

Another point is that now that Tavr seems prevalent now and certainly in the future, is the thought of mechanical valve for ME almost out the window in your opinion?
If i did mechanical as some suggest, i should be done and no more procedures, if i do ohs, then i can probably have and do 2 tavi and that should get me to 72-74 and same if i do 2 tavi and ohs i should get to the same point + have the option to do another tavi if I can live until 80??


I would appreciate your opinions on my decision as i have not made 1 yet....

Here is his response: The decision matrix depends on the “Heart Team” that is managing your case. For example, I would not be comfortable sending you to another regional hospital in Southern California for TAVR given the expertise available at Cedars.

The approach recommended by Dr.xx is the “Gold Standard” surgical approach with the most data and predictable outcomes as he discussed. TAVR in this situation is a new modality with a track record that has less foundation.

I believe both options are reasonable under the circumstance with the caveats you have already outlined in your note below.

Dr. Makkar had planned to consult with Dr. Raissi and Dr. Trento once all the data was available. I would defer your own decision till you hear the consensus opinion.


I am curious that some of your thoughts and opinions are on this as well as some of the unanswered questions.....

I also understand that the decision to even have tavi will not be an easy 1 to get approved as the trial is for hi risk patients over 65 that have mdeicare, i do not qualify for any BUT he felt that if he could get both surgeons approval and buy in that he would have a good chance to sell it as intermediate risk and get it approved.....


Thank you for reading.

I am really struggling here.

 

[coryp]

Let me set a few things clear. I have the luxury of what i consider some of the best surgeons in the world deciding over how best to treat me and how i want to be treated, i did not want to come off as sad sack because im in a great spot for the best care and i know thats what i am going to get no matter what. So the prior post was more my INTERNAL struggle and mental anguish.

Cory

 

[dick0236]

I'm not sure I understood all of your initial post but my first question is.....Why, at age 45, don't you consider a mechanical valve? That should eliminate a need for future surgeries on that valve.

 

[coryp]

Good question and probably thew same reason i did not the first time, did not think that i would be good at managing my own inr... now that ive already aired on the side of technology and almost lost my bet i asked the cardio the same question about the mech valve (see my post) and he basically did not respond.??????

 

[pellicle]

Hi

... i asked the cardio the same question about the mech valve (see my post) and he basically did not respond.??????

probably because he wants it to be your decision not his. He (if he thinks like me) will wish to avoid the accusation of "I only did this because you said it would be better, and now look whats happened"

Iife is about learning and life is about change.

when we are kids our parents force us to do things
when we are adolescent we are often pushed around by our peers
when we are parents we make our own decisions for our kids benefits ....

So here you have the opportunity to make a decision soley about you, on your own ... the decision to me comes to this: "can I grow / change to become more responsible for myself, for my own benefit?"

often the answers which come immediately are the same answers which keep people from striving to become their best in other areas too:

• I don't want to
• why should I
• I'm not strong enough / reliable enough / consistent enough
• I'm too lazy

every sportsman who pushes themselves to be better than they could have been makes the decisions needed to be better.

So if the reason you're afraid of mechanical is you're afraid of taking the bit between your teeth and being consistent with your drug and your self monitoring then the sportsmans question applies to you.

 

[dick0236]

Good question and probably thew same reason i did not the first time, did not think that i would be good at managing my own inr...

Given todays INR technology it is not difficult to manage INR. It has changed a great deal since "home testing" was introduced.

 

[pellicle]

Hi

...
I would appreciate your opinions on my decision as i have not made 1 yet....

Here is his response: The decision matrix depends on the “Heart Team” that is managing your case. For example, I would not be comfortable sending you to another regional hospital in Southern California for TAVR given the expertise available at Cedars.

The approach recommended by Dr.xx is the “Gold Standard” surgical approach with the most data and predictable outcomes as he discussed. TAVR in this situation is a new modality with a track record that has less foundation.

I believe both options are reasonable under the circumstance with the caveats you have already outlined in your note below.

Dr. Makkar had planned to consult with Dr. Raissi and Dr. Trento once all the data was available. I would defer your own decision till you hear the consensus opinion.


I am curious that some of your thoughts and opinions are on this as well as some of the unanswered questions.....

I also understand that the decision to even have tavi will not be an easy 1 to get approved as the trial is for hi risk patients over 65 that have mdeicare, i do not qualify for any BUT he felt that if he could get both surgeons approval and buy in that he would have a good chance to sell it as intermediate risk and get it approved.....


Thank you for reading.

I am really struggling here.

my opinion ... I'm not sure you want it. None the less here it is in plain honesty. Some of my reply draws upon the very long phone call we had. I will do my best to keep what was said private aside from my impressions which I convey here to you in my opinion

You are clutching at every straw possible (even the irrational ones) in the attempt to avoid reality.

Your desire to have a TAVI is unsound. Your own Dr's response makes that point clear to me as he is that he is telling you TAVI is not ready yet. Let me make this clear what that means:

• a much higher risk of death as an outcome
• a much higher risk of stroke leaving you permanently mentally damaged : if you are lucky it will just be muscular issues, if you are unlucky you may have significant brain damage
• a likelihood of ongoing stroke problems caused by the TAVI
• a much reduced physcial ability (which seldom impacts the eldrerly frail people who are in the decision matrix, as the are not out coaching sport)

and why are you willing to risk all this?

You spoke to me that you have the eventuality of your death well covered in insurances. I assure you that you do not have it as well covered as you think you do. I doubt you will understand what your family will go through even if they are well provided for in finances.

There is no doubt that you are facing a life threatening issue. Equally there is little doubt that OHS (as your surgeon so rightly points out) is the gold standard for managing this threat.

Pick a tissue and front up again in 10 years, or pick a mechanical and manage your INR. But if you push the TAVI issue I will put money down that you'll regret it more than either of the above.

You know how to call me if you want to discuss it.

Lastly let me set a few things clear.: I personally don't care if the entire world dies. The most important people to me are dead, two of the three died within a month of each other in 2012 and from then on I really don't care who lives or dies. At all.

Why am I posting here? Because I don't like watching people suffer because of the actions of others. INR management and to a much lesser degree valve choice are life decisions I like to help people with.

I can "lead a horse to water" but I can't make it drink.

That is my opinion and stance

 

[rnff2]

I'm 43 and about 3 months ago I had my 3rd OHS for mitral valve replacement. My surgeon gave me the choice of mechanical vs tissue also telling me the TMVR will be available to me in the future if I choose a tissue valve. I never imagined I would even be offered a tissue valve at my age and already having had 2 OHS. I was beyond happy to avoid coumadin and future surgeries even with a tissue valve. I left the surgeon's office with my mind made up, I was going to be able to get a tissue valve.
Then as the days passed and I started researching and I got to thinking...I can end up on coumadin even with a tissue valve, I would end up fighting symptoms again as it becomes time for the next valve replacement, what if TMVR isn't available to me in 10 years, tissue mitral valves don't last as long as tissue aortic valves, I can only have so many valves inside of valves if TMVR is even available and then what? Each OHS has increased risks of complications, not to mention the recovery. And I almost forgot the ticking of a mechanical valve, I couldn't imagine living with that. So many things go into making the choice, but I'm the only one who can make it.

My advice is...You need to do what's right for you, there is no right or wrong choice. Go with your gut.
I wish you the best and hope you find peace with whatever you choose.

BTW...I have a mechanical mitral valve, I'm on coumadin, I home test my INR weekly and the ticking does drive me crazy at times, but for me it was the right choice.

 

[AZ Don]

will there be a large difference doing the OHS at 45 vs 58-60? MAkkar says almost none.

Predictions of the future are little more than guesses. The prediction that TAVR would be ready for low risk patients by now turned out to be wrong.

I guess it comes down to surgery now or later, and why later would be a better option (if i live that long)?

It seems to me that for most, recovery is related to health prior to surgery. Most people are not as healthy at 60 as at 45 so it's a pretty good bet that your recovery at 60 will not be easier than it would be at 45.

I assume the reason that TAVR is not available for low risk patients is because there are either too many known risks or not enough is known about the long term effects to effectively gauge the risk. My understanding is that TAVR is offered to high risk patients for whom major surgery (such as OHS) is much higher risk than it is for others. So the known and unknown risks of TAVR are thought to be less than the risks of a major surgery. So if you really are in the intermediate risk category now and so qualify for TAVR, then your risk will likely be at least intermediate in the future when you have to have another OHS. It's not clear to me what you are gaining by TAVR except buying time at the cost of the risks associated with a new technology and the risk that you may not be as healthy in the future when it is time for ohs.

No matter what you do there are risks, and the risk of doing nothing is the highest. The risks of all the options are probably quite low, but if one has a 3% risk vs. another that has a 2% risk, that is a 50% higher risk that you could be taking .... with your life. Unfortunately some risks are hard to know precisely so you have to use your best judgement to decide what is best for you. Good luck.

 

[gregjohnsondsm]

Coryp. What valve did you have that has calcified already? I am sorry that you have to go through this again so soon. I can tell you from personal experience that TAVR is not without risk. My 54 year old cousin had TAVR AT MAYO the day after I had OHS. We were close and followed each other's progress. He died of infection a couple of weeks after the procedure.

 

[pellicle]

gregjohnsondsm , I'm sorry to read of your cousins passing at such a young age. If you don't mind me asking (really for coryp 's information) how would you have described your cousins health before the surgery? Was he a fit and active man before surgery? Like training, coaching sports ... that sort of thing?

I understood that Coryp is actually quite fit and active and to my mind not at all the type who fits the "risk criteria".

Best Wishes

 

[neil]

coryp I would gather all the info and advice of your surgeons and cardio docs, yes take into account if you want to from forums like this about things but for me the experts are those you seek council with at your hospital, They are where they are because of what they know, Just my opinion mate

 

[gregjohnsondsm]

Pellicle, he wasn't in great shape but we had been elk hunting together the previous fall, 5 months earlier. He had had leukemia early in life and the radiation had messed up his sternum. That is why they chose TAVR. Currently TAVR is not done with the same cleanliness standards as surgery. It should be.

 

[pellicle]

Hi

... Currently TAVR is not done with the same cleanliness standards as surgery. It should be.

eek!

thanks for the details.