Inspiria Resilia

[newarrior]

My back up MD in Bangkok estimates 3-5 years till I need AVR

I will get a 2nd opinion on that from my main MD

That would put me at 61-63 when I do AVR

he recos Inspiria Resilia--says estimated to last 19-21 years--at which point I can do TAVR/TAVI

Inspiria Resilia - he says coated to slow down calcification

Thoughts ? Experiences ?
Cheers ! Ted Danson and Woody !)

 

[Unicusp]

Been discussed already many times. Nope, not for me! My surgeon stated that sure it could last up to 20, but would most likely last 7 for me. But again, it is all forecast. No long term data.
Bottom line: your planning on at least 2 more surgeries(total of 3) or planning to be deceased by age 68 to 80 depending.
I don't gamble financially or with my health.
Your call. At least you have several years to get more data and research.

 

[newarrior]

I haven't researched that valve much I just found out about it hours ago. What makes you think I'm going to have two surgeries and be dead between 68 and 80? How is that a gamble financially? What about my situation seems like a Gamble? How am I gambling with my health?

 

[newarrior]

Been discussed already many times. Nope, not for me! My surgeon stated that sure it could last up to 20, but would most likely last 7 for me. But again, it is all forecast. No long term data.
Bottom line: your planning on at least 2 more surgeries(total of 3) or planning to be deceased by age 68 to 80 depending.
I don't gamble financially or with my health.
Your call. At least you have several years to get more data and research.

Where are you getting your information from? What did you end up going with? Have you done the surgery? What makes you think I'm gambling with my health or my finances?

 

[stephenismycopilot]

I haven't researched that valve much I just found out about it hours ago. What makes you think I'm going to have two surgeries and be dead between 68 and 80? How is that a gamble financially? What about my situation seems like a Gamble? How am I gambling with my health?

I got the Inspiris Resilia on my surgeon's and cardiologist's recommendations last year at age 37 at UCLA Ronald Reagan. I was planning on going mechanical, but with the advances made with the new tissue valve technology (something about wet storage as opposed to dry) and TAVR options, in his words: "You'd be crazy to do mechanical nowadays." I know everyone's experience is different, and these forums lean pretty heavily toward mechanical valvers, but his surety put my mind at ease. As of today, 16 months out from surgery, I feel better than I have in 15 years, the valve is doing exactly what it should, and I haven't had to worry about INR or warfarin dosage other than 12 weeks post-surgery; those three months were wild, as we could not get it to stabilize. The warfarin clinic said some folks never do.

Again, you'll get a lot of different voices chiming in here, but that's been my experience. The important thing to remember (and you'll hear this here, too!) is that there is no "wrong" decision. Whatever you choose is saving your life, and medical technology gets better every day. You're doing the right thing gathering anecotal experiences, but I always at the end of the day trust the doctors. Sure, they're not gods, but they know an awful lot more about this stuff than we can read on the internet.

You're gonna be great!

 

[newarrior]

Hey man thanks I feel like I'm on a new Jag year for a long time I was denying this and I wasn't one to make a decision about whether to stay overseas or go back to the state and I was working on slowing things down or somehow hearing things now I'm in the acceptance phase where I know this is going to happen and I'm researching surgeons and going back to doctors trying to find the best hospital breast surgeon and also I've got a couple of possibilities for insurance. I'm also trying to avoid the covid-19 an outbreak here in Thailand. But yeah thanks man I spent two hours with the doctor today and I spend another four hours transcribing is no sending stuff off the group sending stuff off to other doctors and people I trust try to get answers that was the first time any gave anybody gave me a time estimate I've heard that before 3 to 5 for surgery. They're calling me mild-moderate somebody else called me moderate anyways complicated stuff but yeah I'd like to avoid the the ticking valve I think I'd be a disaster with the mechanical valve between the INR the Warfarin and the ticking I've already got really bad ringing of the ears from hearing loss I've already got one sound in my head 24 hours a day for 24 years I don't need another sound in my body. So it looks like I'll be getting the new valve between age 61 to 65 but I'll keep looking for time estimates as well. I've got to figure out if I'm going to be able to do insurance here or not if not I've got to suck it up and pay cash or fly back to America grab an Airbnb for a couple months do the whole thing for free in California where I've got free insurance and then come back here in a couple of months. I'll have to keep researching things on the group. Hope I'm not sounding like too much of a newbie. Good to know that there's no wrong decisions but I feel like I've got a lot laying on this it's especially complicated because I live overseas I don't have anybody to take care of me after surgery I am uninsured etc etc so I got some extenuating the good thing is I'm fanatical about my health every doctor I've talked to says you're doing everything you can more than any of my other patients they can look at me and see that I look you know fantastic everybody thinks I'm about 15 to 20 years younger than my age whether it's doctors or women I date or friends of mine everybody thinks I'm closer to 40 than 60 of course I've got bad genetics and screwed up chromosomes hahaha so I feel like I'm about 85 sometimes I'm reading the rest of your message so the first three months you still have to be on Warfarin even with a tissue valve? Can you explain that. Yeah my doctor was pushing doing a tissue valve and he thinks that would last me into my 80s then in my 80s he's saying I'll do tavr and then that'll carry me out until my 90s or whenever I die. Like I said I got the wacky extenuating circumstances of 0 family or friends to take care of me living alone + no insurance + living overseas however I've got enough cash that I could probably absorbed quite a bit of hits the only downside is if I get hit too bad financially or physically it's going to make it harder to go back to America with the cost of living in Los Angeles or San Francisco is so off the roof that it's probably worth what worth wasting money on a few surgeries year versus going back to the States and burning through money on rent we're having to buy a house getting whacked with taxes

 

[stephenismycopilot]

Yep, warfarin for the first three months to make sure you don't clot while it's healing. Eight weeks of recovery after surgery, which means no heavy lifting, etc. They also don't want you driving and even limiting your trips in a car. Your sternum's wired shut, so until the breastplate fuses, something like a little fender bender or trying to lift something too heavy could be disastrous.

Sounds like you're going through the same mental journey we all did! I was lucky in that my doctor noticed a heart murmur and sent me immediately to the cardiologist down the hall. An EKG and ultrasound revealed SEVERE regurgitation. One month and a bunch of poking and prodding and it was done. If your doctors say tissue is right for you, I'd trust 'em! And who knows what other scientific advances resembling witchcraft will happen in the couple years before you need your surgery. For me, having never even broken a bone and not having had a medical issue since I was a kid, I allowed myself to be fascinated by the science. It's a trip, man, but it's amazing that they can do this. And that they do it every day all day in hospitals around the world. That's reassuring, sure, but it's just really cool, ya know?

Keep us updated on your journey.

 

[tom in MO]

My back up MD in Bangkok estimates 3-5 years till I need AVR. That's a guess. Nobody really knows what makes it deteriorate and most times the ending deterioration is quicker than the beginning.

he recos Inspiria Resilia--says estimated to last 19-21 years--at which point I can do TAVR/TAVI That time period is also a total guess couched to seem real by the two year window. In addition, when replacement time comes not everyone is a TAVR/TAVI candidate. You never know until the time comes, for example, the reverse happened to my friend's husband who expected an AVR, but due to other complications they recommended TAVR.

Live your life as if you'll die tomorrow of something other than a valve that currently works good enough

 

[Luckyguy17]

My back up MD in Bangkok estimates 3-5 years till I need AVR

I will get a 2nd opinion on that from my main MD

That would put me at 61-63 when I do AVR

he recos Inspiria Resilia--says estimated to last 19-21 years--at which point I can do TAVR/TAVI

Inspiria Resilia - he says coated to slow down calcification

Thoughts ? Experiences ?
Cheers ! Ted Danson and Woody !)

am likely adding nothing new...
3-5 years to the AVR was pretty much my timeline, from when my GP detected a murmur and referred me to a cardio

in 2010, it was also thought, that the St-Jude ESP100 might do 20 years for many/most, but alas it did 11 years for me...i suspect (unscientifically) that maybe 20% achieve long lifespans and this will likely be true of Resilia. Too many variables to be proven out For any given on durability.

TAVI is an insert of a new valve into the existing valve, nothing is removed. To my understanding the older valve must be at a minimum 23mm or greater for a TAVI. Life expectancy of TAVI is also unknown and currently only done for 70+ patients in my area.

As always age 60 is sort of the deciding age of a mech or bio valve. Not often is life expectancy talked about, another variable target.

 

[Chuck C]

am likely adding nothing new...
3-5 years to the AVR was pretty much my timeline, from when my GP detected a murmur and referred me to a cardio

in 2010, it was also thought, that the St-Jude ESP100 might do 20 years for many/most, but alas it did 11 years for me...i suspect (unscientifically) that maybe 20% achieve long lifespans and this will likely be true of Resilia. Too many variables to be proven out For any given on durability.

TAVI is an insert of a new valve into the existing valve, nothing is removed. To my understanding the older valve must be at a minimum 23mm or greater for a TAVI. Life expectancy of TAVI is also unknown and currently only done for 70+ patients in my area.

As always age 60 is sort of the deciding age of a mech or bio valve. Not often is life expectancy talked about, another variable target.

I agree about your comments on the Resilia. Right now they are selling hope, but there is no data to support that it will last any longer than other tissue valves and there won't be for another 5-10 years. I was leaning towards the Resilia initially, with the hope that I would get 15-20 years out of it. Ultimately, decided I could not bank on hope and went with the hard data pointing strongly towards mechanical valves for longevity in my age bracket. It will be fantastic if the anti calcification treatment is proven to extend valve life expectancy, but this just can't be said yet.

I agree also on your comments on TAVI/TAVR. They really don't know how long they will last. I think it makes great sense to use them for elderly high risk patients who might not survive open heart, but they are now approved for low risk and starting to do some in my area on younger patients in their 50s and 60s. In my view, this is very hard to justify given the very low risk of OHS for low risk patients and the unknowns regarding longevity of TAVR. BTW, my local cardiologist believed that if I could just hold on for a few more years that I would be a TAVR candidate, as TAVR is moving quickly into the BAV world. Just so that I knew whether TAVR was an option, I was evaluated at Scripps in San Diego for TAVR. I was told that due to the fact that my calcification was unevenly distributed, I was not likely a candidate. Knowing what I know now, even had they said I was a good candidate, I would not have chosen TAVR, given the unknown durability and the certainty of future operations.

 

[bobco70]

,.. I was told that due to the fact that my calcification was unevenly distributed, I was not likely a candidate. Knowing what I know now, even had they said I was a good candidate, I would not have chosen TAVR, given the unknown durability and the certainty of future operations.

TAVR being not suitable for unevenly distributed calcification, perhaps also applies to patient prothesis mismatch (PPM) where TAVR would be risky. I had a CE Bovine 21mm replacement in my 2005 AVR when my weight was about 150lbs and height 5' 9.5" so borderline/mild PPM. Since then over the last 15 plus years I have been unable to windsurf without a big impact on how I felt for at least week afterwards so had to give it up. My cardiologist suggested a procedure that uses an inflated bulb to try to burst the bovine valve calcified ring though I heard in a surgeon forum online that it could break unevenly if not designed to break making TAVR risky in small valves. A structural cardiologist at my local heart center seems to think it might be possible and they can always fall back on OHS. I prefer OHS to start with rather than take that risk so am now talking to Cleveland Clinic (CC) hoping to have an interview with a surgeon to see what they recommend and then go there when it is appropriate. I've sent in the data requested and now am waiting to hear back.

 

[newarrior]

TAVR being not suitable for unevenly distributed calcification, perhaps also applies to patient prothesis mismatch (PPM) where TAVR would be risky. I had a CE Bovine 21mm replacement in my 2005 AVR when my weight was about 150lbs and height 5' 9.5" so borderline/mild PPM. Since then over the last 15 plus years I have been unable to windsurf without a big impact on how I felt for at least week afterwards so had to give it up. My cardiologist suggested a procedure that uses an inflated bulb to try to burst the bovine valve calcified ring though I heard in a surgeon forum online that it could break unevenly if not designed to break making TAVR risky in small valves. A structural cardiologist at my local heart center seems to think it might be possible and they can always fall back on OHS. I prefer OHS to start with rather than take that risk so am now talking to Cleveland Clinic (CC) hoping to have an interview with a surgeon to see what they recommend and then go there when it is appropriate. I've sent in the data requested and now am waiting to hear back.

Forgive my stupidity what is PPM? Why did you have to give up windsurfing? You think you're going to be able to regain that activity? Let us know when you hear more from the Cleveland Clinic.

 

[newarrior]

TAVR being not suitable for unevenly distributed calcification, perhaps also applies to patient prothesis mismatch (PPM) where TAVR would be risky. I had a CE Bovine 21mm replacement in my 2005 AVR when my weight was about 150lbs and height 5' 9.5" so borderline/mild PPM. Since then over the last 15 plus years I have been unable to windsurf without a big impact on how I felt for at least week afterwards so had to give it up. My cardiologist suggested a procedure that uses an inflated bulb to try to burst the bovine valve calcified ring though I heard in a surgeon forum online that it could break unevenly if not designed to break making TAVR risky in small valves. A structural cardiologist at my local heart center seems to think it might be possible and they can always fall back on OHS. I prefer OHS to start with rather than take that risk so am now talking to Cleveland Clinic (CC) hoping to have an interview with a surgeon to see what they recommend and then go there when it is appropriate. I've sent in the data requested and now am waiting to hear back.

tavr.. I'm still learning about it and in my 50s I'm nowhere near the age to be a suitable candidate but it does sound like it's somewhat overhyped I guess what everybody loves is the lack of invasiveness in the short recovery time I'm sure by the time a lot of us get old enough to be good candidates for it they'll have it more down to a science with less problems. At least that's the hope

 

[newarrior]

Yep, warfarin for the first three months to make sure you don't clot while it's healing. Eight weeks of recovery after surgery, which means no heavy lifting, etc. They also don't want you driving and even limiting your trips in a car. Your sternum's wired shut, so until the breastplate fuses, something like a little fender bender or trying to lift something too heavy could be disastrous.

Sounds like you're going through the same mental journey we all did! I was lucky in that my doctor noticed a heart murmur and sent me immediately to the cardiologist down the hall. An EKG and ultrasound revealed SEVERE regurgitation. One month and a bunch of poking and prodding and it was done. If your doctors say tissue is right for you, I'd trust 'em! And who knows what other scientific advances resembling witchcraft will happen in the couple years before you need your surgery. For me, having never even broken a bone and not having had a medical issue since I was a kid, I allowed myself to be fascinated by the science. It's a trip, man, but it's amazing that they can do this. And that they do it every day all day in hospitals around the world. That's reassuring, sure, but it's just really cool, ya know?

Keep us updated on your journey.

Hey thanks for the kind words of thanks for taking an interest in me I've had chronic health issue since my thirties but no surgery in 50 years I'm not sure if I'm Amazed by the technology I've had enough medical problems over my lifetime I wish I could never think about my body again other than eating the healthy vegan diet that I do. Interesting about UCLA my last medical doctor was at UCLA when I had Insurance in America until I left four years ago I just finished a business certificate there right before I left as well love that place. Break campus great school great Medical Center. I thought I just had mitral valve prolapse myself into until slightly under 2 years ago when they found out about my aortic valve. I don't think I have significant regurgitation on any of my valves just mild mitral valve prolapse and moderate to mild aortic stenosis but still I know I'm facing at least one surgery before I croak of whatever kills me in old age

 

[newarrior]

I agree about your comments on the Resilia. Right now they are selling hope, but there is no data to support that it will last any longer than other tissue valves and there won't be for another 5-10 years. I was leaning towards the Resilia initially, with the hope that I would get 15-20 years out of it. Ultimately, decided I could not bank on hope and went with the hard data pointing strongly towards mechanical valves for longevity in my age bracket. It will be fantastic if the anti calcification treatment is proven to extend valve life expectancy, but this just can't be said yet.

I agree also on your comments on TAVI/TAVR. They really don't know how long they will last. I think it makes great sense to use them for elderly high risk patients who might not survive open heart, but they are now approved for low risk and starting to do some in my area on younger patients in their 50s and 60s. In my view, this is very hard to justify given the very low risk of OHS for low risk patients and the unknowns regarding longevity of TAVR. BTW, my local cardiologist believed that if I could just hold on for a few more years that I would be a TAVR candidate, as TAVR is moving quickly into the BAV world. Just so that I knew whether TAVR was an option, I was evaluated at Scripps in San Diego for TAVR. I was told that due to the fact that my calcification was unevenly distributed, I was not likely a candidate. Knowing what I know now, even had they said I was a good candidate, I would not have chosen TAVR, given the unknown durability and the certainty of future operations.

Hey Chuck we've been talkin offline so I understand what you're saying about the valve it sounds like there's a lot of marketing claims made that can't be proven yet yes my doctor specifically said you're my backup doctor here in Bangkok said that the valve is specifically coated with a particular substance to slow down calcification. Not course gentleman like you and I with high levels of lipoprotein that 19 to 20 year window may be much smaller. At least you've got a benchmark for better or worse that you got the valve replaced it 53 I'll probably be about 61 to 65 it's still young enough for I'm probably going to also need to go a mechanical the only drive with mechanical is the INR the ticking the warfarin otherwise mechanical seems like the way to go unless you're closer to 70. We'll have to see how the marketing claims for the the resilia valve bear out over the next five to ten years.tavi. yeah my main doctor in Bangkok seems to be all excited about it as well but I think I'm far too young I think you're correct shock. Anybody under 70 should probably be looking at mechanical or tissue. Definitely 65 or under mechanical. That's why I'm hoping to hold out as long as possible so there's more technology more data more advances in the technology as well as the surgery

 

[newarrior]

am likely adding nothing new...
3-5 years to the AVR was pretty much my timeline, from when my GP detected a murmur and referred me to a cardio

in 2010, it was also thought, that the St-Jude ESP100 might do 20 years for many/most, but alas it did 11 years for me...i suspect (unscientifically) that maybe 20% achieve long lifespans and this will likely be true of Resilia. Too many variables to be proven out For any given on durability.

TAVI is an insert of a new valve into the existing valve, nothing is removed. To my understanding the older valve must be at a minimum 23mm or greater for a TAVI. Life expectancy of TAVI is also unknown and currently only done for 70+ patients in my area.

As always age 60 is sort of the deciding age of a mech or bio valve. Not often is life expectancy talked about, another variable target.

I'll probably be around 61 to 65 when I do my valve replacement I'm sure it's either going to be a toss-up between tissue or mechanical the doctors told me that they like doing open heart surgery cuz then they can correct anything else I might have to have my mat mitral fixed or replaced at the same time plus you never know if there's a minor coronary artery blockages

 

[newarrior]

It seems like under 60 definitely mechanical under 70 a toss-up between Manic Mechanic or tissue over 70 you're going to do the tavi.. or maybe tissue but everything could be thrown up in the air within a few years or less given the changes in technology

 

[bobco70]

Forgive my stupidity what is PPM? Why did you have to give up windsurfing? You think you're going to be able to regain that activity? Let us know when you hear more from the Cleveland Clinic.

PPM stands for Prothesis-Patient Mismatch.

According to Dr Pibarot’s article at
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861088/pdf/1022.pdf
“ Prosthesis-patient mismatch (PPM) is present when the effective orifice area of the inserted prosthetic valve is too small in relation to body size.,..”


It is my understanding that when the ratio EOA/BSA is less than 0.85 then you have mild PPM. But when it is below 0.65 then you have severe PPM. To look up your situation, see table figure 6 in same article above. Your valve size heads the columns and your row is your body size at time of surgery.

I have a 21 mm CE pericardial bovine valve with average EOA of 1.3 cm2 and a BSA of 1.8 m2 at time of surgery so I was in the red area defined as PPM. If you lose weight your BSA drops. Over the years I’ve lost about 30 lbs perhaps due to my PPM so I move up to smaller BSA levels. But my valve calcified so it resulted in a lower EOA moving me back into the PPM red area.

After my second AVR my valve will not be calcified at first so perhaps I can windsurf again especially if I get a larger valve if that is feasible. But I also expect to gain weight as some studies have shown occurs with a larger EOAs post AVR.

Windsurfing requires a lot of power from your heart especially if sailing in challenging conditions at high speed and need a wetsuit whose pressure your heart needs to pump against in getting enough oxygenated blood to your muscles fast enough. When I no longer could hold on to the boom even with the assistance of a harness, I went to my GP and the echo showed aortic stenosis.

After my AVR in 2005 and for the next few years I kept trying to windsurf and though I could do it for short times with my 55 plus year old heart racing over 186 bpm I felt awful for days afterwards and didn’t want to do permanent damage to my heart so quit until I could get a bigger valve at the next AVR.

I would be interested if any one with PPM has ever received a larger valve and did it increase your ability to go back to intense sports.

Thanks,

Bob