Avr #2

[Guest]

My husband had his first AVR at the age of 36. At that time he chose a bio valve and the surgery was performed by Dr. McCarthy at Northwestern in Chicago. He had no complications and a relatively easy recovery. Now at the age of 44 we have been told he has sever stenosis and needs a replacement in the next month. We have three small children 7 and under. Both Dr. McCarthy and Dr. Malaisrie are recommending a TAVR. I understand that at most this will buy him time before he needs another open heart replacement likely with a mechanical valve. However, both doctors expressed that a mechanical would likely need to be replaced in 20-30 years. So my questions are, has anyone had a TAVR and what was your experience? Do you buy some time now, and then have the mechanical in 5-10 years hoping it takes you the rest of your life? Any thoughts/experiences would be greatly appreciated.

 

[pellicle]

Hi

My husband had his first AVR at the age of 36. .... Now at the age of 44 we have been told he has sever stenosis and needs a replacement in the next month.

Ok, well firstly let me say that I had my 2nd AVR (which happened to be my 3rd OHS a bit older at 47, so I'm suggesting that he'll do fine being 1) younger 2) having had less surgeries.

We have three small children 7 and under.

this must be a stressful time for you and them (as well as the patient)

Both Dr. McCarthy and Dr. Malaisrie are recommending a TAVR. I understand that at most this will buy him time before he needs another open heart replacement likely with a mechanical valve.

I think that's a reasonable assessment. However I would doubt it will buy him more than 5 years and expose him to significant risks. I would put hard straight questions to the quacks who are recommending this avenue.

These would be:

• TAVR is currently aimed at high risk patients (meaning patients who are at a unacceptably high risk of death for conventional AVR), is my husband in this category, if not why are you suggesting this approach given it is also in and of itself a higher risk option when it comes to: paravalvular leaks, strokes, calcium flake releases (leading to a greater stroke risk). Read this link and look at their star patient and as yourself does that look like you https://www.medtronic.com/us-en/pat...lve-replacement/about/benefits-and-risks.html
• TAVR is not intended to be durable, so "best most optimistic case" for duration would be 5~7 years (probably sounds pretty good to that ukulele player but not to a parent of kids under 7), but if your husband is active (unlike the elderly and frail that TAVR is intended for) then that best case duration will be revised down. I would thin especially so given your reduced duration from a conventional tissue prosthetic (which btw are always reduced in duration for patients under 60)
• what is the evidence they base their unreal expectation of a likely duration of 20-30 years for a mechanical?
• what is the likelyhood of an Aortic Aneurysm in my case?

Do you buy some time now, and then have the mechanical in 5-10 years hoping it takes you the rest of your life? Any thoughts/experiences would be greatly appreciated.

My view of the evidence (as well as pretty much every paper I've ever read( is that a mechanical will last you the rest of your life unless some other factor drives a reoperation (for instance an Aneurysm). However IF your husband had stenosis due to a Bicuspid Aortic Valve then there is an increased risk of aneurysm (due to connective tissue disorder that causes bicuspid valve) and that would make the risk of tissue issues at the site of a TAVR even higher and drive serious questions about the likely durability of a TAVR


I would counsel strongly towards a mechanical valve in this case. If they are bringing out the warfarin boogy man I suggest that you become informed about the reality of Anti Coagulation Therapy (warfarin is ACT) and I would say (well because I wrote it) to start said research at my blog (and read further)

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

If you wish to reach out to me, simply comment on my blog with your contact details and I will not publish (my blog requires my approvals for all comments to allow me to weed out spam).

Best Wishes

 

[pellicle]

PS: when asking those hard questions do not just sit there like a deer staring into the headlights, take notes, go and read up or ask here for opinions and then go read up to see if those opinions meet facts

I counsel strongly that when you do your google searching ignore any fluff publications festered with ads (and thus tracking cookies) for vitamins and suspect therapies. Go to only good research sites. Yes its harder to read but its also more reliable.

Keep this word in your mind always: VERACITY

Best Wishes

 

[pellicle]

Lastly I also suggest you have a read of my post here: http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

( and yes leadville you can correctly guess I didn't want to edit nor be marked as spam after writing as much as I have.;-)

 

[DachsieMom]

I was about to say the same thing as Pellicle. I was 42 (a week shy of 43) at the time of my surgery and was told that my st Jude mechanical valve conduit would last the rest of my (hopefully very long) life. My children were were 6 and 8 at the time of my surgery. I wonder why they both said mechanical would require a reoperation in 20-30 years. It has been 4 years since my surgery.

 

[DDT77]

Had 1st AVR @ 20, 2nd AVR twenty years later (~1 ago - clicky-clacky).

Will 'echo' what Pellicle indicated. Am also a warfarin addict. Not a big deal.

TAVR is unreasonable given available information .

Maybe surgeon wishes to add risk and certainty of redo in <10 years.

I would find 2nd opinion ASAP!

 

[dick0236]

..........Both Dr. McCarthy and Dr. Malaisrie are recommending a TAVR. I understand that at most this will buy him time before he needs another open heart replacement likely with a mechanical valve. However, both doctors expressed that a mechanical would likely need to be replaced in 20-30 years. So my questions are, has anyone had a TAVR and what was your experience? Do you buy some time now, and then have the mechanical in 5-10 years hoping it takes you the rest of your life? Any thoughts/experiences would be greatly appreciated.

I agree with DDT77 and would get a second opinion. I am not a dr. nor do I know your husband but from what I understand, at age 42, he will not get 5-10 years out of a TAVR, especially since he went thru a bio valve in only 8 years.

BTW, I got my mechanical valve at age 31 and still have that valve........52 years later.

 

[Eva]

I’’d seek a second opinion before making any decisions, as it’’s rare when a mechanical valves needs to be replaced!!

Here’s a link from American College of Cardiology discussing both valves.
https://www.acc.org/latest-in-cardio...-young-patient

good luck and keep us posted.

 

[user 16827]

pellicle As soon as i saw the PS it's the first thing i thought of ; )

I got my Mechanical AV at 44, i expect it to last my lifetime, which i hope is a long one ( i am an optimist )


I echo the thoughts regarding BAV and aneurysms, but with regards to the valve lasting 20 - 30 years this seems pessimistic
unless there are other issues you have not mentioned.

Its a worrying time,

best wishes

 

[Warrick]

My two cents...
At the very least this might sound silly but i think if hes not going to have a mechanical valve hed be better to have another tissue like the new edwards inspiris valve, get 8 yrs or so at least and hope that the developing foldex valve will be mainstream by then

 

[pellicle]

pellicle As soon as i saw the PS it's the first thing i thought of ; )
LOL

...but with regards to the valve lasting 20 - 30 years this seems pessimistic
unless there are other issues you have not mentioned.

the only thing I can think of is that if you are miserable with maintaining your INR (long stints of ignoring your ACT) then you can get a thrombosis based valve obstruction. In times gone by (like 10 years or so ago) this was commonly treated with a valve replacement surgery. However today its treated (well in modern countries) with tpa (as this 5 year old article suggests was becoming the gold standard)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4625813/

Until the 1990s, the treatment of choice for mechanical valve obstruction was surgery but over the last decade, thrombolyis has been used increasingly and has become an alternative to surgery as the first-line therapy in patients with PVT. Tissue plasminogen activator at a low dose and with prolonged infusion time has recently contributed to the success of thrombolytic therapy, with decreased complication rates.​

but perhaps the surgeons in question of the OP were not "up to date" on the last 20 years of works?

 

[DDT77]

but perhaps the surgeons in question of the OP were not "up to date" on the last 20 years of works?

might not be too far off the mark there... One of the docs received his MD in 1980.

 

[Hockey Heart]

Thank you for all the feedback on this. It is very much appreciated!

I am the husband in this post initiated by my wife. Today, we met with the cardiac surgeon that would be doing to the TAVR. While the option for either a TAVR or a Mechanical valve is still on the table, he was pushing for a TAVR. One of the frustrating things for us in this process is the inconsistent and contradictory information we have received from both surgeons and both cardiologists we have met with. Today, the surgeon said that the TAVR would last 8 years because my previous tissue valve (open heart) lasted 8 years. This doesn't make any sense to me. My understanding is that a TAVR will only last 10+ years in older patients. Younger patients are looking at 7 years as a best case scenario and because my tissue valve was supposed to last 15 but only lasted 8, I can reasonably expect a TAVR life span of 5-7 years at best due to my high metabolism. If I knew I would be getting 7 years from the TAVR, then I would likely choose that option but if it's going to be closer to 2 years then I would opt for the mechanical.

The other thing that has us suspicious of motives is that I need to participate in the study in order to be approved for a TAVR at my young age. They haven't been doing TAVRs on younger patients for very long and they need more subjects for the study. This particular hospital and these particular specialists seem to be pushing me toward the TAVR and I am suspicious that maybe they aren't considering what is best for me and are more concerned with what is best for the general public as a whole.

We are really struggling with this decision. Any further insight is greatly appreciated. Thanks for listening.

 

[pellicle]

The other thing that has us suspicious of motives is that I need to participate in the study in order to be approved for a TAVR at my young age. They haven't been doing TAVRs on younger patients for very long and they need more subjects for the study.

bingo

And so (without data) how can they say how long they last for (and I've never heard of 10 years from ta TAVI)

and welcome aboard by the way.

 

[Warrick]

https://www.edwards.com/devices/heart-valves/resilia
Worth a look
and
https://foldax.com/ the future.. we all hope

 

[pellicle]

... My understanding is that a TAVR will only last 10+ years in older patients..

fresh study: [h=2]Journal of the American College of Cardiology[/h] Volume 73, Issue 5, February 2019DOI: 10.1016/j.jacc.2018.10.083

http://www.onlinejacc.org/content/73/5/546

Results At 6 years, the rates of all-cause mortality were similar for TAVR (42.5%) and SAVR (37.7%) patients (p = 0.58). The rate of SVD was higher for SAVR than TAVR (24.0% vs. 4.8%; p < 0.001), whereas there were no differences in NSVD (57.8% vs. 54.0%; p = 0.52) or endocarditis (5.9% vs. 5.8%; p = 0.95). BVF rates were similar after SAVR and TAVR through 6 years (6.7% vs. 7.5%; p = 0.89).

Conclusions In the NOTION trial through 6 years, SVD was significantly greater for SAVR than TAVR, whereas BVF was low and similar for both groups. Longer-term follow-up of randomized clinical trials will be necessary to confirm these findings. (Nordic Aortic Valve Intervention Trial; NCT01057173)​

just saying don't you become fresh meat ... those are horrible stats

Run, don't walk from that

 

[jwinter]

More insight but I agree with many that posted before me. I had porcine and stenosed in less than 5 years. The "team" was really wanting me to go with tavr until they found out I had a liver autoimmune problem and then sent me directly to Mayo. I am a bit older than you, ok, I was 60 when I had my mechanical put in.

My bottom line is I am not signing up for another open heart. It was too stressful for me, especially the waiting part. Both surgeries went well and I did have some of the usual post surgery things go on. The worst part for me was before the surgery and after so I tell everyone if you don;t mind that part it all is good and get what you want.

Do be proactive, show up with all your questions and make sure you understand the how, whens, and why's. and then it is ultimately YOUR decision.

Good luck to you.

 

[LondonAndy]

I see that you list "Hockey, sports and cooking" in your interests, Hockey Heart - do you actively play hockey, and is this why you have gone for a tissue valve previously (to hopefully avoid being on warfarin/coumadin needed with a mechanical valve)? If so, how much longer do you think you can play? Perhaps worth considering biting the bullet and going for a mechanical valve to avoid open heart surgery when you are yet older. I had my valve replaced at age 48 and fully expect it to last the rest of my life, and advice here seems fairly consistent.

 

[pellicle]

Hi

I am the husband in this post initiated by my wife. Today, we met with the cardiac surgeon that would be doing to the TAVR.

I just observed this point, as I had skimmed too quickly the first time, and didn't observe your history of posts. So (as you see I've replied to your older post) I read a few of your "agonizations" about choices.

I expect you are now (or I hope you are now) seeing what people who told you "reduced druability with a tissue valve in yournger patients" meant. So I think you should now be considering that you've used up one of your choices and its time to reflect on things in a far more real and experienced way (I mean now that you have actual valve surgery experience).

I had my sugery for my mechanical in 2011 (so about as long a duration as yours) and like pretty much all the mechanical valvers my valve is still doing fine and is anticipated to do so for longer duration than I'll live for.

Remember your family as you make these decisions and reflect on what happens to them. I think there is sufficient evidence to suggest your fears of warfarin may be exaggerated (perhaps at least as much as your exaggerations of how long you might get on a TAVR and or another Tissue Valve). Complications and issues only increase with subsequent surgeries, anyone what suggests otherwise is fooling either themselves or attempting for fool you.

Like I say on my blog here:
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

Anyway, enough about you, think for a moment about your family.

[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/1.bp.blogspot.com\/-Pi8LfNbMCUk\/UJ3tuQUUdMI\/AAAAAAAADQ0\/u3OvV4Fedgg\/s320\/ICU%252Bearly-788531.jpg"}[/IMG2]My wife was distraught at the thought of my surgery (more so than me), she was beside me every step of the way. She said to me in recovery that some of the happiest moments of her life were in seeing me get better every day.

She put on a brave face, but the fact is that she was scared shitless that I would die and she would be left without me.

She was so pleased because she was so relieved. I would not want to put her through that again. If you are a reasonably healthy adult, and you choose a tissue valve you will for sure be putting your loved ones through it again.

Is that something you want to do to them?

There is a log in that post and I recommend you read it all carefully.​

Best Wishes with your second chance decision

 

[pellicle]

PS: a second sugery isn't a huge increase in risk, a third is and a fourth more again. If you pick a path now which makes a 3rd a certainty you have essentially cut off your choices for the future and if things are not perfect you'll have pushed yourself towards a 4th for no real reason.

It is your choice of course, but be ware of people who are already 20 years older than you telling you stuff, because their lives , their activity levels and their body metabolism are differnt ... not just in a philosophical way but a real and tangible way.

If you wish to reach out and chew the fat I'm here (email me) ... I'm sure others would be so too if you asked them.