Shopping for heart valves

[PsyDanny]

Hi



I just checked (to confirm it) and yes, same here. So either they've moved it or taken it down.

Let me know if you want a copy of the file as I saved it a few years back.

Good. Not just me.

Yes, I would like a copy of that file. I am doing a lot of reading on this topic these days. Picked a surgeon on Thursday (Vibhu Kshettry, Minneapolis Heart Institute/Abbott Northwestern), and the plan is to call at the end of May to schedule OHS in July.

 

[dani's nana]

I had a mechanical aortic valve 4 weeks ago. I feel better than I have in years. Doctor said only mechanical choice due to my age.

 

[dani's nana]

I had a mechanical aortic valve 4 weeks ago. I feel better than I have in years. Doctor said only mechanical choice due to my age.

 

[Earthsciencerocks]

I've been noncomunicato for a while due to successful aortic valve surgery. Guess what? Just got back from the echocardiogram and they found that one of my leaflets has failed in my 9 year old tissue valve (Medtronic Freestyle). So I'm going back for another April 25th, 2016. At 48, I'm hoping to get longer than 9 years on my new one. I loved my last one and look forward to being back and healed up again. Each doctor and surgeon answered the same when asked "What would you choose for yourself or your children?" Each answered "Tissue Valve" without skipping a beat. Same as 9 years ago. Do your due-diligence/research, pray, and go with what speaks to your needs most! God bless all you Valvers out there! 🏌

 

[marc_kowal]

I was 40 when I was advised to do have the surgery and I initially picked a tissue valve. I realized that I may need another 2 re-dos in my lifetime, but I just didn't want to be on warfarin, truth be told it scared me. My surgeon said it was my choice and he would support my decision.

After talking with my wife some more and looking at my two young kids, I decided that I was going to do what would give me the best chance of being here with them for the long haul. Re-dos are risky, recovery can be hard, and life never goes according to plan. So 3 days before my surgery, I called my surgeon and told him that I wanted to go with a mechanical valve. Once again, he supported my decision.

My surgery went off without a hitch, and it didn't take long for me to get a handle on this warfarin thing. I am glad I went with mechanical, because I definitely do not want go through a surgery like that again.

Everyone's decision is a highly personal one. There are lots of things to consider. The only bad decision, in my opinion, is the uninformed one.

Best of luck to you!

~Marc

 

[JulienDu]

I was 40 when I was advised to do have the surgery and I initially picked a tissue valve. I realized that I may need another 2 re-dos in my lifetime, but I just didn't want to be on warfarin, truth be told it scared me. My surgeon said it was my choice and he would support my decision.

After talking with my wife some more and looking at my two young kids, I decided that I was going to do what would give me the best chance of being here with them for the long haul. Re-dos are risky, recovery can be hard, and life never goes according to plan. So 3 days before my surgery, I called my surgeon and told him that I wanted to go with a mechanical valve. Once again, he supported my decision.

My surgery went off without a hitch, and it didn't take long for me to get a handle on this warfarin thing. I am glad I went with mechanical, because I definitely do not want go through a surgery like that again.

Everyone's decision is a highly personal one. There are lots of things to consider. The only bad decision, in my opinion, is the uninformed one.

Best of luck to you!

~Marc

Yes, I had the same reasoning. I was very very hesitant but looking at my wife and kids, I had to pick mechanical for them. Also, considering sternum takes 5 months to 1 year to fully heal and that I do heavy duty manual work, the idea of not being able to fully work 6 months post-op several time in my life + the risk of wrecking my sternum and losing my jobs forever was scary. TAVI might be around the corner but there are too little data as to the long term survivability to be able to take a reasonable decision at a young age like mine.

 

[pellicle]

Hi

its with a sense of relief that I see some other posters here following up on this, as quite frankly I get tired of taking the heat on suggesting anyting "outside the 9 dots"

... Just got back from the echocardiogram and they found that one of my leaflets has failed in my 9 year old tissue valve (Medtronic Freestyle). So I'm going back for another April 25th, 2016. At 48, I'm hoping to get longer than 9 years on my new one.

I was going to say when I read this that lets project that you get 9 years out of the next valve: that would mean that you'll be 57 when fronting up to your next redo. That will mean you'll be fronting up for your 3rd surgery. That will mean that you'll suffer the degradation (and make no mistake there is degredation to the body, increase in scar tissue, increased risk of cutting the AV node nerve, increased risk of post surgical infection...)

It is beyond question that in an otherwise health adult at younger ages a tissue prostheis will require a redo while a mechanical will outlast you. The tissue valves have remained more or less unchanged (with only tweaks in the chemistry to help them last). Each "generation" they claim "greater life" (like a TV ad for something) but then you just keep reading peoples stories where they got far less than the 15 years sales pitch.

Meanwhile the mechanical valves have undergone a relatively quiet revolution, with incredible amounts of research going into everything from flow dynamics (I can send you some papers) to anticoagulation monitoring. So in my view tissue prostheses should be oriented for people who have other significant health concerns (diabetes, diverticulitis, history of stroke, history of GI bleed ....) and that mechanicals are for strong healthy people who just happen to have a bicuspid valve.

You now have evidence of some kind that you are not one of those body types who get "may last up to 20 years".

I would call this experience informative ... so I would use this to make an informed decision.

Here on VR you can find power lifters, competitive surf athletes, long distance runners ... all with mechanical valves, all less than 50. Out in the wild you can find even more, you can find a woman who has actually climbed Mt Everest on a mechanical valve and warfarin. You just don't get a more arduous test of a human than that.

So I would consider carefully and make an informed decision. Use what you've learned to feed into your decision cycle. I do not know if you are avoiding one valve type over another due to fear or apprehension or ignorance or just that it it feels weird. But I'll leave you with this thought

No matter what you decide to do, just make sure its an informed decision based on cold hard rational examinatoins of what you know.

 

[heartburst]

Hey heartburst here, I started this post a couple months ago. Having felt in my gut that a tissue valve was for me, initially, my research on a life on warfarin, durability of tissue valves longterm, my age and reading of all you Valvers experiences on here. It finally lead me to a mechanical, and I've never looked back.

My initial concern, was that I was looking only for evidence that would support me choosing tissue, like somebody whose dug their heals in on their position and won't hear the other side. I was pleased with myself that I was able to pivot positions without prejudice. Oh, and once I chose mechanical... what manufacturer? What model? Forget it, I left it up to my surgeon. They put in a Saint Jude Mechanical on Friday April 1st. Dr. Yun, Kaiser LA.

I got home Tuesday and am now just bidding my time till my sternum heals.

So glad pre surgery anxiety is a thing of the past.

Surgery had no complications and neither have I. It wasn't as bad as I had imagined. I've fainted getting blood drawn in the past, understand. Pain? Not much. I'd label it discomfort. But everyday just gets better. I was freaked about catheters, drainage tubes, and IV's being pulled, Again, not painful. Weird, freaky, yes. But not painful.

Would I want to go through another surgery, if it wasn't as bad as I thought? HELL NO! See, I could live another 40 + years. It really became a simple math problem:

A= my age (50)
B= age at death (90)
C= average life span of tissue valve (12)
X= number of surgeries I would undergo (3.3333333)

This assumes a couple things, of course. Each valve actually lasts 12 years, and my three surgeries go down without a hitch at 50, 62, and 74
Did I hit 90? No only 86. I'd do the TAVR at 86.

That all just sounds gruesome to me.

What about TAVR or advances in medicine over this time making OHS less invasive?

Then I can always have my mechanical swapped out with a tissue and do non invasive re-dos.

Thank you all for your insights!
​Viva La Valvers!

 

[JulienDu]

Congratulations man ! Glad you are happy with your decision and your surgery went smooth.

Also have a Mech St Jude, 2months post op, can run 25-30 min at 10km/hour and not even short of breath or tired ( could do more but I am careful not to push ).

Did a stress test 2 weeks ago, cardio told me I already have capacity of young athlete and that I have unlimited physical capacity. No heart murmur.

My inr was almost instantly stable thanks to Pellicle and a good AC clinic.

I am not saying that to brag but to give hope for young Terminator.

Really like what the 2 last posts said.

 

[dick0236]

Your methodology of using simple math makes a lot of sense to me. I have always thought that valve choice is a simple matter as to how many times you want to have this surgery. Here are a couple tips that may be of interest to you;.
1. make sure you get your ID card that shows serial number and model of your valve.....you may need it years down the road.....long after your cardio, surgeon and hospital have purged your records from their files..
2. get a seven day pill box.....makes taking warfarin fool proof.
3. after 3 months try to go on INR self-testing....makes managing warfarin more accurate and conveniant. .
4. don't run with scissors LOL

Good luck and stick around......your reasoning may help someone grappling with the valve choice question.

 

[heartburst]

What did they replace your valve with in 96' and what caused your aneurysm?
Pellicle is the AVR guru
Also: how do you get your stats to appear at the bottom of every post?

 

[heartburst]

Thanks dick0236,
I'm going to do just that.....

 

[ForeverThankful]

Congratulations! Glad that everything went well!

Also: how do you get your stats to appear at the bottom of every post?

Click on your name in the upper right, click User Settings

Click the Account tab

Go down a bit to " Conversation Detail Options" and "Visible Post Elements" and click on "Edit Post Signature"

 

[JulienDu]

What did they replace your valve with in 96' and what caused your aneurysm?
Pellicle is the AVR guru
Also: how do you get your stats to appear at the bottom of every post?

In 96, when I was 9, they did not replace my valve. They did a repair on it. I had a severe stenosis. After the operation it went mild.

In November I did a CT and they discovered a 4.9 Ascending Aneurysm. I ask for it to be operate quickly and they did replace the valve even if I was asymptomatic because I knew that down the road, I would need a replacement.

What caused my aneurysm ?

Well several thing. Among the people with BAV, a certain number do have an associate connective tissue disorder located at the Ascending Aorta. Some would never develop an aneurysm, some would develop one later in life or some early like me. My cardio told me that because of my very intense heavy lifting job, this could have accelerate the growth of the aorta + couple others factors ( I smoked 3 years )... Usually the raise of blood pressure ( occasional or constant ) can contribute to the growth.
But the main cause is a genetic issue that weaken the tissue walls and make it more susceptible to growth with episode of high blood pressure and other factors of course. A young man with no connective tissue disorder should not have had an aneurysm that size that young, even with heavy lifting or heavy smoking.

In my opinion, if at 50 you did not have any growth of your aorta, there is very very little chance that you develop and Ascending Aortic Aneurysm, and if you get one at 80, they will not open you chest, they will throw a stent.

Yeah Pellicle is awesome. He has a Redneck mind with an education Background so even ****** uneducated like me can usually understand complicated stuff he explains hahaha.

Dick0236 incredible story and experience was also a tremendous inspiration during my decision. And yeah I agree with the 7 days box, at the beginning was always wondering if I had taken my dose and I missed some couple times.

 

[pellicle]

Hi

4. don't run with scissors LOL

 

[pellicle]

Julien

...
Yeah Pellicle .. has a Redneck mind with an education Background so even ****** uneducated like me can usually understand complicated stuff he explains hahaha..

thanks mate, one of the nicest things anyone here has said of me.

:-*

I'm just a Wild Colonial Boy at heart

 

[coryp]

Excellent posts and as i get close to having my 2nd avr i am still undecided.....
I went edwards magna when i was 34 now 45 11 years later my surgeon wanted to do the redo at xmas, was not ready too many things going on and still had no symptoms, well slowly getting some symptoms and on a quarterly echo protocol to watch and make sure things don't get worse. I was hoping to tavr when i opted for the first tissue valve but surgeon wont do it and says not there yet. If i get another 11-13 years from this 1 then will it be smooth sailing for tavr for the 3rd? Is it best to opt for mechanical now and hope to never do this again? I truly have forgotten most of the recovery time spent from the first, maybe blocked it out of my mind....???? I do remember to sleepless nights for the 1st couple of weeks sitting in that recliner looking outside into the darkness hoping for a car to pass by to give me something to do.....I guess i healed quick as i did not do rehab or anything like that, was walking 2 miles a day after 5-7 days....
Not sure exactly what to do at this point. I am also more concerned about this surgery then i was on the 1st as weird as that sounds. Looking at your photo does remind me of those red SORE scar days now looking at mine being all white and almost gone....

Im all about technology but feel that it has let me down somehow, when i chose 11 yrs ago i chose with the thought that for sure it was going to be tavr for the 2nd and no breaking the sternum. That is still not the case/////

I was concerned about the coumadin as everyone else and the ticking as i am a light sleeper , all of this and the potential to have tavr if i could last 10yrs made my choice. Well i lasted and back to square 1.
Any recent developements or ideas anyone can pass my way???

Thank you for listening

 

[pellicle]

Hi

... I was hoping to tavr when i opted for the first tissue valve but surgeon wont do it and says not there yet. If i get another 11-13 years from this 1 then will it be smooth sailing for tavr for the 3rd?

sorry, but how many more times of "not yet" are you hoping to hear? I've read posts like that going back yonks. What no one seems to even address in this discussion is "will that tissue valve be amenable to a TAVR?" ... they have metal frames you know.

Is it best to opt for mechanical now and hope to never do this again?

unless you have any medical conditions which select against warfarin I strongly suggest yes.

I truly have forgotten most of the recovery time spent from the first, maybe blocked it out of my mind....????

well add to that an increased risk of being told you need a pacemaker (and that's just this time, it will get more risky each time)

Looking at your photo does remind me of those red SORE scar days now looking at mine being all white and almost gone....

That scar has been cut through 3 times ;-)


I'll also strongly suggest you think carefully about things like post surgical infections and the increase in "litter" left behind in your body to make it easier for bacteria to hide in when they get there.

Have a close and careful look at all the objects and left over wires in my xray

they aren't double images there, those are the old wires beside the new ones... and a bunch of staples (as well as my new valve)

Pay careful and close attention to the reports of differences between the medical research on tissue vs valve - primarially they just talk about death.

Death rates between tissue and mechanical ... they talk about that as if that's the only difference. Not commonly other issues like what happens to your health, what other side effects are there (pacemakers, debilitation).

Sure the absolute death rates are similar (only if you consider the poorest of last centuries INR monitoring) ... but everything else (like 'oh you've got an infection we'll just cut out your sternum" or "oh your AV Node was damaged, so you'll be on a pace maker" ) is not of concern to the surgeon because they go home: you in contrast live with it.

so you're 45 now. You've already had one ... and you already didn't get the "up to 20 years" they promised you. So if you pick a tissue and if it fails at 13 years then you'll be 58 and having your third (and have had to suffer health loss as it fails). It may be that you are a candidate for a TAVI at that point, but you know it is not a good thing to be a prime candidate for TAVI.

Of course its up to you, and I would not like to have you complain at me that "I would have picked tissue if it wasn't for your advice" ... but if you choose tissue and report back here in 10 years that it failed and TAVI wasn't ready yet ... well that will probably just make me sad for you.

Lastly, try reading my post here about my 3rd operation:
http://www.valvereplacement.org/foru...ges-disturbing

and perhaps my blog on points of interest for decisions and analysis of "studies"
http://cjeastwd.blogspot.com/2014/01...r-choices.html

 

[pellicle]

Hi

thanks for posting

... I am a surgical nurse and I have done probably about 15 TAVR operations so far (our hospital does on average two a week) ; however, right now TAVR are reserved for those that are too sick for an open procedure; the thing with TAVR operations is the skill of the team doing them, there is definitely a big learning curve for the Cardiac Interventionist and the Surgeon,

would you be able to provide some basic stats from your hospital? Such as the criteria for selection for TAVR or the outcomes of followup?

 

[JulienDu]

sorry, but how many more times of "not yet" are you hoping to hear? I've read posts like that going back yonks. What no one seems to even address in this discussion is "will that tissue valve be amenable to a TAVR?" ... they have metal frames you know.

Yeah I agree. When I was digging your old post Coryp, I saw what you wrote 10 years ago and this is proving the point that Pellicle is making. 10 years ago, they were saying that Tissue would last 20 years and TAVR was around the corner. Same speech as now. Are you sure you are ready to make the same decision ? And by the way, what is all that non sense with BAV and increase risk with coumadin ??

http://www.valvereplacement.org/foru...ance-and-input

But I was as you may have read concerned about taking the Coumadin and the other issues regarding the mechanical, well he made it real simple, he suggested that BICUSPIDS (like me) usually with tissue disorder (like me, now I understand thank you Bob) do not do very well on Coumadin long term for many reasons. Also my blood type is 0- and very thin (he said that is also quite common is Bicuspids. We discussed the Porcein vs Bovine and he almost uses Bovine Edwards exclusively, sighting that 96% of patients will get 20 years out of this valve (exactly what I wanted to hear). Actually I went in thinking that if I could get him the committ to 15 years it may very well be worth going with the tissue vs the mechanical for just a few years difference and freedom from the changes. He gave me more than that I feel that if I am able to last 15-20 with this valve then I will be about 55 when I need the next (and hopefully final) valve replacement and at that time he said most should be done by cath, so the real fear of having to do another OPS is greatly reduced.