Exercise and Tissue Valve

[skier]

Increased mortality is why the increased difficulty of subsequent surgeries matters. A second open heart surgery has a higher risk of death than the first, and the third higher than the second.

I've had two open heart surgeries with the same highly qualified surgeon at a top university hospital. He said my risk of dying was 1.5% for my first surgery and 2.5% for my second (because of the scar tissue and increased likelihood of complications).

He also said we *really* don't want to do a third, even higher-risk surgery, so we want to do everything possible to avoid going under the knife again.

I look at it like this: Would I get on an airplane with a 1.5% chance of crashing and burning? Only if my life depended on it. Would I do so knowing I'd have to get on a second airplane with a 2.5% chance of crashing? Not if I have another option.

The odds start stacking up against you if you plan to have multiple open heart surgeries. And, like many of us, you might also have to have an unplanned subsequent surgery.

 

[csigabiga]

FWIW I was also told by my surgeon, who is a top notch and well-known surgeon in Canada that once you get to your third, surgeries become increasingly dangerous and more complicated. For this reason, at 39, I am likely to choose mechnical over Ross

 

[pellicle]

surgeries become increasingly dangerous and more complicated

This is because if scar tissue (not the stuff you see on your skin in the mirror) increasing the complexity of getting to stuff while not damaging other stuff (like nerves). This increases time on the cross clamp which also increases morbidity and mortality risk.

For this reason, at 39,

Will this be your second or third?

 

[70sdiver]

I think pellicle is "biased toward mechanical" due to the scars all over him and his lived trauma of multiple OHS, without the choice of avoiding it. You also posted this:

"I´m not posting this to get feedback regarding my decision, although if anybody wants to provide it you are more than welcome ."

If you are confident tissue is that best for you, then get tissue! And don't explicitly invite feedback on your valve choice when you don't want it. To demand that everyone on a forum present "unbiased" views divorced from their own experiences isn't realistic or reasonable.

When I was in my quest for an aortic valve. He showed no bias and actually saved me from having a TAVR at 66 I was pretty dead set on it but after some suggestion I researched it and decided on tissue valve. We will see if I made the right choice if I'm still here in 10-15 years.Dreaded the open heart surgery as I thought it would be as debilitating as when I broke my c-4 vertebra and was in surgery 21 hours. Now that was painful and took close to 2 years to get back to normal.

 

[tommyboy14]

I would just like to add my own story here: My tissue only lasted for 8 years when I got it aged 33. 8 years seems like a lot, but it becomes a blink of an eye when faced with another surgery. My surgeon specialised in reops (more than 60 percent of his ops), and even did the 6th AVR in someone recently. He said that this wasnt such a big deal, but nevertheless insisted I get a mechanical. He said it is best to avoid reops, even if in his hands the risks stay low. The other thing that we dont tend to think about is that other stuff can happen. Ie. One day your mitral valve may go or you may need coronary artery surgery. The best way to keep your options open and to ensure that you can take another OHS if you need to is to minimize them to begin with. In my age group, early 40s, Mech valve is definetly the best option. I wish I would have gotten it the first time around.

 

[csigabiga]

Will this be your second or third?

First one. Having my cherry popped and very much not looking forward to it

 

[Chuck C]

When I was in my quest for an aortic valve. He showed no bias and actually saved me from having a TAVR at 66 I was pretty dead set on it but after some suggestion I researched it and decided on tissue valve. We will see if I made the right choice

In my view, you made a sound decision. I fully understand the allure of TAVR. My first cardiologist was very much a TAVR fan; " No matter what you don't want them to open your chest up, if you can avoid it." He said to me. But, I was 53 and when I looked at the data, and received additional consults from cardiologists and surgeons, it became clear to me that the short term gain of avoiding OHS now would create major complications down the road.
66 is still young in the valve world. You don't want to be in a bad spot from TAVR at 71 or 74. Your tissue valve could easily last you 15 to 20 years, at which point TAVR might be an excellent option for you.

Unless by then there is a better option. Perhaps something magical will come along which requires no intervention at all. You could always try this guy next time around

Star Magic Healing

 

[pellicle]

Hey

First one. Having my cherry popped and very much not looking forward to it

so then, that means you have more flexibility. Sure there is more risk with a redo than with a first time, but not something like a horrible risk level. So this means to me that you can pick anything (although you'll probably know I'm going to say don't pick a Ross). As I see it:

1. a homograft at a center that specialises in cryopreserved homografts will give you the best documented chance of 20 years at your age. Based on a study of over 600 patients at my hospital: For all cryopreserved valves, at 15 years, the freedom was ... 85% (21-40 years), 81% (41-60 years) ... thats a from a 29 year followup.
2. a valve like the Resilia should get you similar
3. its possible (not likely) that something else will drive a reoperation in the future anyway.

So basically if you get 20 years that's out to 59 for your second. If you focus on good health and good diet (meaning good health) then you should be in ok shape for your second

I had my second at 28 (god, how many times have I typed this?) and my third at 48 ... I didn't feel any anxiety on the 3rd, perhaps a little concern on my second. But then it was my second.

Best Wishes

 

[pellicle]

Hi

... He showed no bias and actually saved me from having a TAVR at 66 I was pretty dead set on it but after some suggestion I researched it and decided on tissue valve.

sounds like that was a good consult, because that's my reading of the better choice too.

We will see if I made the right choice if I'm still here in 10-15 years.

I hope we're all still here to hear back on that.

Dreaded the open heart surgery as I thought it would be as debilitating as when I broke my c-4 vertebra and was in surgery 21 hours. Now that was painful and took close to 2 years to get back to normal.

I injured my SI joint on the lawnmower ... that took 2 years before I could do everything nearly properly. Life throws these things ...

we can only catch them as best we can.

 

[csigabiga]

1. a homograft at a center that specialises in cryopreserved homografts will give you the best documented chance of 20 years at your age. Based on a study of over 600 patients at my hospital: For all cryopreserved valves, at 15 years, the freedom was ... 85% (21-40 years), 81% (41-60 years) ... thats a from a 29 year followup.
2. a valve like the Resilia should get you similar
3. its possible (not likely) that something else will drive a reoperation in the future anyway.

Yeah I've discussed both these options with my surgeon. She didn't feel great about either of them and I trust her. For me it came down to Ross vs Mechanical. Due to having aortic insufficiency and a pretty dilated annulus she felt mechanical would be safer short term and more durable long term, so I'm leaning in that direction.

 

[pellicle]

For me it came down to Ross vs Mechanical. Due to having aortic insufficiency and a pretty dilated annulus she felt mechanical would be safer short term and more durable long term, so I'm leaning in that direction.

my feelings on the Ross are well known here (and easily searchable). If I'd have had the Ross on OHS#2 (1992) then OHS#3 (2011 driven by aneurysm but the aortic would have been not far behind) would have been more complicated and I'd probably already (if not then) need the pulmonary replaced.

I can't say anything negative about the mechanical other than "monitor your INR properly" ... from the Canadians I've helped in INR management you get good access to INR tests but at a cost of it being vein draw, which is not ideal after years and years of weekly draws it will leave your veins scarred. I would strongly urge you to consider self testing with a Coaguchek.

After 11 years with my valve I can say I've had no incidents, needed to manage for 2 procedures and spent a lot of time training others to do the same (or better).

remember:
you don't get better you get to swap disease from the disease you have now to prosthetic valve disease. One is managed by serial redo operations the other is managed by warfarin therapy and monitoring your INR weekly. Either prosthetic disease choice will mean you don't die from the original one.

Best Wishes

 

[csigabiga]

my feelings on the Ross are well known here (and easily searchable). If I'd have had the Ross on OHS#2 (1992) then OHS#3 (2011 driven by aneurysm but the aortic would have been not far behind) would have been more complicated and I'd probably already (if not then) need the pulmonary replaced.

I can't say anything negative about the mechanical other than "monitor your INR properly" ... from the Canadians I've helped in INR management you get good access to INR tests but at a cost of it being vein draw, which is not ideal after years and years of weekly draws it will leave your veins scarred. I would strongly urge you to consider self testing with a Coaguchek.

After 11 years with my valve I can say I've had no incidents, needed to manage for 2 procedures and spent a lot of time training others to do the same (or better).

remember:
you don't get better you get to swap disease from the disease you have now to prosthetic valve disease. One is managed by serial redo operations the other is managed by warfarin therapy and monitoring your INR weekly. Either prosthetic disease choice will mean you don't die from the original one.

Best Wishes

Yes, if I go the route of mechanical valve, which looks likely, there is no question that I will be looking to manage my own INR with a coaguchek. Would be happy for some help with that if/when the time comes

 

[pellicle]

Would be happy for some help with that if/when the time comes

That's why we're here

 

[carolinemc]

Increased mortality is why the increased difficulty of subsequent surgeries matters. A second open heart surgery has a higher risk of death than the first, and the third higher than the second.

I've had two open heart surgeries with the same highly qualified surgeon at a top university hospital. He said my risk of dying was 1.5% for my first surgery and 2.5% for my second (because of the scar tissue and increased likelihood of complications).

He also said we *really* don't want to do a third, even higher-risk surgery, so we want to do everything possible to avoid going under the knife again.

I look at it like this: Would I get on an airplane with a 1.5% chance of crashing and burning? Only if my life depended on it. Would I do so knowing I'd have to get on a second airplane with a 2.5% chance of crashing? Not if I have another option.

The odds start stacking up against you if you plan to have multiple open heart surgeries. And, like many of us, you might also have to have an unplanned subsequent surgery.

It depends on what was done. My first one was repair, second was replacement of the aortic valve with St. Jude's. I may still face another for the Mitral Valve is having calcification issues. I am not as worried as I would going out of my home and into the world of danger around everywhere I go.

 

[Gail in Ca]

In 2009 my surgeon said if he had to give me a homograft as the only option, he said to expect only about 10 yrs from it.
My clarinet friend who recently got the resilia was told by his surgeon that he would have a tavr in about 10 years.
I would think if these valve choices lasted 15-20 on most people then that’s what the surgeons would tell us.

 

[sangfroid]

my feelings on the Ross are well known here (and easily searchable). If I'd have had the Ross on OHS#2 (1992) then OHS#3 (2011 driven by aneurysm but the aortic would have been not far behind) would have been more complicated and I'd probably already (if not then) need the pulmonary replaced.

I can't say anything negative about the mechanical other than "monitor your INR properly" ... from the Canadians I've helped in INR management you get good access to INR tests but at a cost of it being vein draw, which is not ideal after years and years of weekly draws it will leave your veins scarred. I would strongly urge you to consider self testing with a Coaguchek.

After 11 years with my valve I can say I've had no incidents, needed to manage for 2 procedures and spent a lot of time training others to do the same (or better).

remember:
you don't get better you get to swap disease from the disease you have now to prosthetic valve disease. One is managed by serial redo operations the other is managed by warfarin therapy and monitoring your INR weekly. Either prosthetic disease choice will mean you don't die from the original one.

Best Wishes

No veindraws are necessary for an INR. I've used finger stick with 'Coagucheck' for over 20 yrs. You can maintain good control checking yourself every 2 weeks.

 

[pellicle]

He also said we *really* don't want to do a third, even higher-risk surgery, so we want to do everything possible to avoid going under the knife again.

simmilarly when I was facing my third (started early) my guy said:
good surgeons will not be lining up to do your 4th. I didn't want another anyway and expected that sort of "information".

So I was already inclined towards a mechanical before I walked in.

 

[pellicle]

No veindraws are necessary for an INR

yes, I'm well aware of that. Non the less, as I said it still happens and I know that because I have contact with people in Canada who tell me that (maybe they are lying to me).
I regularly use and recommend a Coagucheck and self testing and self management.

also, two weeks is not ideal, I always recommend weekly testing

 

[Chuck C]

My clarinet friend who recently got the resilia was told by his surgeon that he would have a tavr in about 10 years.
I would think if these valve choices lasted 15-20 on most people then that’s what the surgeons would tell us

From my read of things, the honest ones and/or the ones that understand the data, will tell their patients who are younger to expect about 10 years. Expect 10 years was what I was told by the head of cardio thoracic surgery at Cedar Sinai and then also by the head of cardio thoracic surgery at UCLA, if I were to choose the latest tissue valve, given my age of 53. They were going on their experience and the data, as was the surgeon for your friend. But, there seem to be some surgeons out there who, without any supporting data, are telling their patients 15+ years, 20-25 years, even 30+ years, regardless of patient age. From the feedback I hear on the forum, most are hearing the same that you were told and that I was told, but there seem to be a few loose canons out there giving expectations to patients without any actual data to support such claims. If one goes back and reads some of the historical posts on the forum, this type of unreastic guidance was often given going back many years, always because, "this brand new valve that is unique". No data to support, but exciting marketing stuff. So far, it seems the hype and hope does not live up to expectations. Are there outliers who get great longevity? Sure. That is how statistics work. Send 100 people to the casinos in Las Vegas and some will come away winners. But what is the average? How many times do we see on the forum people coming in for their 2nd surgery after 8-11 years, and surprised because their surgeon told them, despite their young age, that they would get 15+ years or even more. It happens often enough such that it is alarming the amount of overly optimistic guidance being sometimes given.

 

[csigabiga]

Does anyone know why there isn't more research done / papers on crypto preserved homografts? I know Pellicle (and maybe a few others) have had it, and Pellicle posted research about it as a strong option for ages 20-40 or so. My surgeon recommended against it, saying they don't last very long, but I really can't find much research on it. I think I read an article by El Hamamsy stating that Pulmonary homografts last longer, than crypto preserved ones, but we all know where his bias lies. So if there really is a chance they can get 15-20 years on certain patients, why isn't there more research and why don't more patients get them?