Need a Aortic Valve Replacement before year ends

[Dunwanted]

Hello Everyone from this lovely group.

i have been reading tons of information and decided to join since my cardiologist finally told me i must get my valve replacement before the year ends. Little information about me, i was born with a biscupid aortic stenosis which was mild when i was a child but now that i am 29 years old its on the severe side and i must get it replaced.

To say im super scared would be an understatement as this will be the first surgery, any suggestion on top ranked hostpitals to get this done, i currently live in a country which does not offer the best medical interventions so i am planning to have this procedure done in the united states, im thinking getting a mechanical valve is the way to go but also thinking a bovine valve could be a good option while i wait for the Foldex TRIA valve trials to finish (this is if im being to opstimistic).

 

[Chuck C]

Hi and welcome to the forum!

US News ranks the clinics in the US, so you could start there to look for a top ranked facility.

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
In California, some of the top clinics are UCLA, where I had mine done, Cedar Sinai and Stanford also rank very high, and there are several others. Many who need to travel for the surgery choose the Cleveland Clinic, which is usually ranked #1 in the nation year after year. Many members here have had their procedures done there and most seem very happy with the results.

im thinking getting a mechanical valve is the way to go

At your age of 29, every guideline in the world would recommend a mechanical valve, as it should avoid the need for future interventions, unless you are contraindicated for warfarin. So, in my view this is a wise choice.

Good luck in doing your due diligence on where to get your procedure done and which valve choice to make.

 

[pellicle]

Hi and welcome

i have been reading tons of information and decided to join since my cardiologist finally told me i must get my valve replacement before the year ends. Little information about me, i was born with a biscupid aortic stenosis which was mild when i was a child but now that i am 29 years old its on the severe side and i must get it replaced.

so, just to give you my basic history; right now I'm about 30 years older than you. I was diagnosed at 5yo, had my first OH Surgery (repair) at about 10, had that replaced at 28 (nearly 29 marking my 2nd OHS) with a homograft and then had that replaced in late 2011 with a mechanical.

Of significance on my 3rd (2011) OHS the primary driver for OHS was actually an aneurysm on my aortic valve which was "critical". The valve may have gone on for another few years.

I say this because at your age and with your history of bicuspid valve we know now that its a very high likelihood that you'll require another surgery in later years. Let me come back to that.

im thinking getting a mechanical valve is the way to go but also thinking a bovine valve could be a good option while i wait for the Foldex TRIA valve trials to finish (this is if im being to opstimistic).

first and foremost: do not dream about future possibilities, be hard and cold minded about fantasies of "promise of a beautiful future" ... the mind will love that and that emotion may indeed just mar your progress.

Right now we do not have a definitive cure for valvular heart disease, which is a known terminal illness. We do however have the option to make a surgical wound (yes, its a wound with all that such entails) where we replace the diseased part (that would kill you) with a prosthetic part. This introduces you to then the ongoing (they like to call it 'chronic') state of managing "prosthetic valve disease".

There are currently two forms of prosthetic valve disease; bio-prosthesis valve disease and mechanical valve disease. Each of these has different management strategies.

Bioprosthetic valve disease is managed by monitoring it and observing when structural degradation occurs to the valve and then replacing that valve with another surgery when that has occurred and progressed to a point where stenosis again recurs and you're back where you are now (except that you now have a surgical wound and scar tissue, will be older and thus need to recover again as an older man).

Mechanical valve disease does not suffer from 'wearing out' as does bio, but it is a higer risk of thrombosis related problems (aka strokes). This managed by introducing a drug that makes the formation of clots something that the body can naturally deal with internally. This is called AntiCoagulation Therapy (ACT). The current drug of choice is a bit sensitive and requires managing the dose and monitoring your blood coagulation levels. The ideal method of managing this is to train the patient in self management, pretty much exactly like what diabetics do (NBZ: test their blood and make an insulin dose accordingly), however we on ACT need to test far less than they do (with testing about once a week being generally sufficient).

The major differences between your situation and mine are these:

1. at 28 I'd already had one OHS, which made my 2nd operation more of a challenge due to scar tissue caused by the wound and other stuff left lying around from previous surgeries. Complexity is bad and complexity is cumulative, making my 3rd sugery more complex again, which led to an infection that needed to be dealt with.
2. technology has moved on faster than surgery and the body, and so technology assists not only surgery but importantly with the management of ACT with home point of care machines. These are a game changer and liberate you from being on a ball and chain to a clinic; which would have been my case had I had a mech valve in OHS 2 in 1992

I could write more, but if you want, feel free to reach out by PM and I can call you on the phone and we can chat about it if you so desire. Its a complex subject and individual parameters are needed (by you for you) to make a decision (on what's best for you).

In the meantime I suggest you get a cup of coffee and a notepad and pencil and watch this (taking notes):




Best Wishes

 

[Dunwanted]

Hi and welcome to the forum!

US News ranks the clinics in the US, so you could start there to look for a top ranked facility.

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
In California, some of the top clinics are UCLA, where I had mine done, Cedar Sinai and Stanford also rank very high, and there are several others. Many who need to travel for the surgery choose the Cleveland Clinic, which is usually ranked #1 in the nation year after year. Many members here have had their procedures done there and most seem very happy with the results.


At your age of 29, every guideline in the world would recommend a mechanical valve, as it should avoid the need for future interventions, unless you are contraindicated for warfarin. So, in my view this is a wise choice.

Good luck in doing your due diligence on where to get your procedure done and which valve choice to make.

Hello Chuck,

Thank you very much for the welcoming and the link for the top ranked clinics i really appriciate it, will give it a look to choose a good clinic.

As i keep reading everything looks like i will be getting a mechanical valve.

 

[pellicle]

hey, @Dunwanted , sorry, but when I got the notice of a like I proof read my reply and noticed something missing, so I've added that in as an addition to the bioprosthesis section

 

[Dunwanted]

Hi and welcome


so, just to give you my basic history; right now I'm about 30 years older than you. I was diagnosed at 5yo, had my first OH Surgery (repair) at about 10, had that replaced at 28 (nearly 29 marking my 2nd OHS) with a homograft and then had that replaced in late 2011 with a mechanical.

Of significance on my 3rd (2011) OHS the primary driver for OHS was actually an aneurysm on my aortic valve which was "critical". The valve may have gone on for another few years.

I say this because at your age and with your history of bicuspid valve we know now that its a very high likelihood that you'll require another surgery in later years. Let me come back to that.


first and foremost: do not dream about future possibilities, be hard and cold minded about fantasies of "promise of a beautiful future" ... the mind will love that and that emotion may indeed just mar your progress.

Right now we do not have a definitive cure for valvular heart disease, which is a known terminal illness. We do however have the option to make a surgical wound (yes, its a wound with all that such entails) where we replace the diseased part (that would kill you) with a prosthetic part. This introduces you to then the ongoing (they like to call it 'chronic') state of managing "prosthetic valve disease".

There are currently two forms of prosthetic valve disease; bio-prosthesis valve disease and mechanical valve disease. Each of these has different management strategies.

Bioprosthetic valve disease is managed by monitoring it and observing when structural degradation occurs to the valve and then replacing that valve with another surgery when that has occurred and progressed to a point where stenosis again recurs and you're back where you are now.

Mechanical valve disease does not suffer from 'wearing out' as does bio, but it is a higer risk of thrombosis related problems (aka strokes). This managed by introducing a drug that makes the formation of clots something that the body can naturally deal with internally. This is calle AntiCoagulation Therapy (ACT). The current drug of choice is a bit sensitive and requires managing the dose and monitoring your blood coagulation levels. The ideal method of managing this is to train the patient in self management, pretty much exactly like what diabetics do (NBZ: test their blood and make an insulin dose accordingly), however we on ACT need to test far less than they do (with testing about once a week being generally sufficient).

The major differences between your situation and mine are these:

1. at 28 I'd already had one OHS, which made my 2nd operation more of a challenge due to scar tissue caused by the wound and other stuff left lying around from previous surgeries. Complexity is bad and complexity is cumulative, making my 3rd sugery more complex again, which led to an infection that needed to be dealt with.
2. technology has moved on faster than surgery and the body, and so technology assists not only surgery but importantly with the management of ACT with home point of care machines. These are a game changer and liberate you from being on a ball and chain to a clinic; which would have been my case had I had a mech valve in OHS 2 in 1992

I could write more, but if you want, feel free to reach out by PM and I can call you on the phone and we can chat about it if you so desire. Its a complex subject and individual parameters are needed (by you for you) to make a decision (on what's best for you).

In the meantime I suggest you get a cup of coffee and a notepad and pencil and watch this (taking notes):




Best Wishes

Thank you very much for the information.

i agree with almost everything you say, it is true i should not dream with the ideal future i should deal with the problem with the best current solution there is.

really appreciate you taking the time to write this much information, i will give the video a watch after im done working.

i would only have one question, which mechanical valve would you recommend on-x or st jude (i know you have the st jude i have been lurking and reading a lot from this forum past few days).

 

[pellicle]

i would only have one question, which mechanical valve would you recommend on-x or st jude

Speaking as one with an ATS, I would say the St Jude from what I know.
Happy to elaborate more if you so wish.

 

[Superman]

Welcome to the forum, Dunwanted. Sounds like you’ve done your homework. Just to piggyback on some responses with respect to no guarantees. I did go with a St Jude for my first valve when I was 17 back in 1990. That did not prevent a second open-heart when my aneurysm showed up on 2009. However, I was still just 36 so I stuck with St Jude.

If I could have been guaranteed a tissue valve to last 19 years and have it wear out in perfect timing with my aneurysm, that would have the ideal. However when I was 17, no such tissue valve was offered and no link between BAV and aneurysm was made. That was also the dark ages of monthly blood draws at the lab and no instant results. I did that for over 20 years before I was finally able to home test.

As far as valves go, I think 10-15 years for a tissue valve would be a positive outcome for a younger patient like yourself. Then treatment options will be different, but it’s anybodies guess as to how.

I know one person who received a tissue valve in their 30’s about 14 years ago and was told TAVR would be the norm by the time it went bad. Good news was they got 14 years. But they have an On-X now. TAVR was not an option. The plus was 14 years of no warfarin, but I don’t know they would have made a different choice if they were told they’d have to have open-heart again.

As far as which mechanical, I don’t know that there’s a bad option. St Jude has been with me for 32 year in November so I’m comfortable with it. The On-X designers are former St Jude folks. I know ATS is good for at least 12 years now (I only know a sample size of one).

As far as where to get it done, I don’t think any hospital accredited to do such operations is bad. I did mine locally both times. Closest cardiac hospital to home (different homes each time) and both experiences mirror what most here have been through. No real issues other than normal recovery challenges. And no travel needed.

Long winded, but I had a moment. Keep us posted!

 

[dick0236]

im thinking getting a mechanical valve is the way to go but also thinking a bovine valve could be a good option while i wait for the Foldex TRIA valve trials to finish (this is if im being to opstimistic).

Welcome to the forum........and, yes, a mechanical valve is a logical choice for a 29-year-old. By the time you need a replacement, if ever, the valve science may have progressed to the point where you might just "grow" another valve.

 

[pellicle]

I know ATS is good for at least 12 years now (I only know a sample size of one).

 

[ValveAdmin]

Welcome to the forum. Best wishes and good luck!

 

[Hokiesid]

Hey Dun!

Congrats on finding your bad valve and being young enough to deal with it. I found mine when I entered heart failure with an EF of 24%. For the first surgery, I was 43 and like Pellicle, went the tissue route. 8 years of bliss with no warfarin and blood draws. Got my mechanical valve Dec 2021 and the warfarin is actually not a big deal. I've been going old school with blood draws at my clinic that is 1/2 mile from work/home and it seems to work for me. It really does make sense to get the machine and do it at home, but I do not like sticking myself so there's that. I would encourage the mech valve initially because of the chance to avoid another OHS for as long as possible. They did find an aneurysm when the valve went bad and so, I was on the road to another surgery regardless of valve choice. My surgeon: Dr. Chad Hughes at Duke in Durham NC (love the doc and most importantly, the nursing staff) let me pick the first one but he picked the second one and it was no doubt going to be a mechanical. If I had it to do over, I would have gone mechanical.

 

[carolinemc]

Hi and welcome


so, just to give you my basic history; right now I'm about 30 years older than you. I was diagnosed at 5yo, had my first OH Surgery (repair) at about 10, had that replaced at 28 (nearly 29 marking my 2nd OHS) with a homograft and then had that replaced in late 2011 with a mechanical.

Of significance on my 3rd (2011) OHS the primary driver for OHS was actually an aneurysm on my aortic valve which was "critical". The valve may have gone on for another few years.

I say this because at your age and with your history of bicuspid valve we know now that its a very high likelihood that you'll require another surgery in later years. Let me come back to that.


first and foremost: do not dream about future possibilities, be hard and cold minded about fantasies of "promise of a beautiful future" ... the mind will love that and that emotion may indeed just mar your progress.

Right now we do not have a definitive cure for valvular heart disease, which is a known terminal illness. We do however have the option to make a surgical wound (yes, its a wound with all that such entails) where we replace the diseased part (that would kill you) with a prosthetic part. This introduces you to then the ongoing (they like to call it 'chronic') state of managing "prosthetic valve disease".

There are currently two forms of prosthetic valve disease; bio-prosthesis valve disease and mechanical valve disease. Each of these has different management strategies.

Bioprosthetic valve disease is managed by monitoring it and observing when structural degradation occurs to the valve and then replacing that valve with another surgery when that has occurred and progressed to a point where stenosis again recurs and you're back where you are now (except that you now have a surgical wound and scar tissue, will be older and thus need to recover again as an older man).

Mechanical valve disease does not suffer from 'wearing out' as does bio, but it is a higer risk of thrombosis related problems (aka strokes). This managed by introducing a drug that makes the formation of clots something that the body can naturally deal with internally. This is called AntiCoagulation Therapy (ACT). The current drug of choice is a bit sensitive and requires managing the dose and monitoring your blood coagulation levels. The ideal method of managing this is to train the patient in self management, pretty much exactly like what diabetics do (NBZ: test their blood and make an insulin dose accordingly), however we on ACT need to test far less than they do (with testing about once a week being generally sufficient).

The major differences between your situation and mine are these:

1. at 28 I'd already had one OHS, which made my 2nd operation more of a challenge due to scar tissue caused by the wound and other stuff left lying around from previous surgeries. Complexity is bad and complexity is cumulative, making my 3rd sugery more complex again, which led to an infection that needed to be dealt with.
2. technology has moved on faster than surgery and the body, and so technology assists not only surgery but importantly with the management of ACT with home point of care machines. These are a game changer and liberate you from being on a ball and chain to a clinic; which would have been my case had I had a mech valve in OHS 2 in 1992

I could write more, but if you want, feel free to reach out by PM and I can call you on the phone and we can chat about it if you so desire. Its a complex subject and individual parameters are needed (by you for you) to make a decision (on what's best for you).

In the meantime I suggest you get a cup of coffee and a notepad and pencil and watch this (taking notes):




Best Wishes

Defective heart defects are not terminal, for I am a 2x double bypass survivor, first at 8 years old, 1973, repair. Second one was replacement St Jude's leaflet, at 36 years old in 2001. So not terminal, it is considered a chronic condition.

 

[Unicusp]

Welcome. You came to the right place for good information. I'll be brief. I recommend the Cleveland Clinic and mechanical valve. Allow the surgeon to choose which specific brand based upon your anatomy.

 

[Dunwanted]

thank you very much for all the information, i will have everything in mind when taking a decision.

i am very much afraid about this procedure and i want to make the best decision i can, i really appreciate everyone taking some time of their day to respond and help me, I really appreciate it.

i am looking to set up my first check up at the cleveland clinic to have my operation date selected as well.
will keep you guys posted.

 

[Unicusp]

thank you very much for all the information, i will have everything in mind when taking a decision.

i am very much afraid about this procedure and i want to make the best decision i can, i really appreciate everyone taking some time of their day to respond and help me, I really appreciate it.

i am looking to set up my first check up at the cleveland clinic to have my operation date selected as well.
will keep you guys posted.

Understandable. Try to get Dr. Lars Svensson. Great surgeon. Much experience.

 

[pellicle]

For the first surgery, I was 43 and like Pellicle, went the tissue route

Just for clarity I had a homograft, which is different. A tissue is usually thought of as a prosthesis, which is a manufactured thing wrapped around a metal frame. The bio is no more biological than leather.

Meanwhile the homograft is a viable living tissue transplant.

 

[pellicle]

and just generally on homograft, its really a high tech cottage industry surgery dependent on viable valves which are not carrying any disease (which seems less likely these days). IF a cryopreserved homograft is implanted in the optimal manner the results are like this:
at 15 years, the freedom [from reoperation] was

• 47% (0-20-year-old patients at operation),
• 85% (21-40 years),
• 81% (41-60 years) and
• 94% (>60 years). Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement .

This is interesting stuff as it shows how well the valves perform in older people.

Research questions surround why the valves were only 80 to 94% in 21 ~ 60 year olds, what role other factors (such as aneurysm) played and if there was any factor such as recurrence in stenosis of the valve and if so what was the cause of that. I would put forward the usual suspects of LP(a), mishandling / damage to the tissue of the graft, smoking and other known factors fingered in stenosis in the first place.

To my knowledge the aetiology of aortic stenosis is not fully clear at this point.

https://www.karger.com/article/fulltext/354221

Valvular heart disease (VHD) can be defined as a structural or functional abnormality of a cardiac valve. This is a generic term that includes several etiologic entities with different pathophysiologic mechanisms, presentations and natural histories. Disruption of the anatomic integrity of a cardiac valve may produce valvular stenosis, valvular regurgitation or a combination of the two. Structural abnormalities of a cardiac valve often produce surface phenomena, which may be associated with platelet aggregation and microorganism accumulation predisposing to thromboembolism and infective endocarditis. In addition to intrinsic valve pathologies, cardiomyopathies or other causes of myocardial dysfunction can result in mitral and/or tricuspid regurgitation, even in the absence of intrinsic structural valve abnormalities, presumably due to abnormal mechanical stresses that lead to the distortion of normal valves and of the subvalvular apparatus; similarly, aortic regurgitation can develop from abnormal mechanical stresses acting on an intrinsically normal aortic valve in the setting of aortic root disease and dilatation ​

Roy had quite the conversation on this lack of longevity (in a more general sense) with his maker

but died anyway ... the transformation in him however was perhaps more valuable than the extension he might have got.

... I mean assuming that anything we become lives on after we die.

 

[tommyboy14]

Hello,

I was in this boat in 2014.

You have four options:

1) Mechanical - you already know the pros and cons ==> high probability of only one operation, but need to take anti-coagulants
2) Tissue - No Anticoagulation, but limited lifespan - I got 8 years when I was close to your age
3) Ozaki - The surgeon makes a new heart valve out of your hearts pericardium - this is a new surgery with long-term results only from Japan - There is a Japanese surgeon who does this surgery at the Cleveland Clinic
4) Ross procedure - They switch your pulmonary into aortic position , and put a homograft in your pulmonary (2 valve operation). This can last for more than 20 years in some selected people - but you will need multiple (prob more than 2) reoperations later on in life. This is because it is hard to do Tavi replacement on the Pulmonary and the technology to do TAVI on the aortic after Ross is still in development - so unknown if that is a possibility.

If you want to explore a new option that may (may because we dont know) last for long time and dont mind a reop in the future, perhaps it is worth speaking to the Ozaki surgeon at the Cleveland Clinic. Otherwise if you want to avoid reoperations, mechanical is the way to go.

If you are female, you need to know that it is more difficult to have a successful pregnancy while on warfarin. Lots of medical reports saying it is has been done, but this is something you need to discuss with your surgeon.

A bit about me: I had a tissue valve in 2014 at 33. I also banked on new technologies to bail me out in the future. Didnt happen. Valve lasted 8 years and failed in a way which made TAVI impossible. I ended up with an On-X mechanical valve in May of this year.

On the On-X vs St Jude question, we wont know the answer until we results from the randomised 'PROSE' trial. My gut feeling is that these valves are very similar. The only difference is that On-X has a pannus protection feature (this is when your issue grows into the valve and stops it from functionning well. - It is rate, but can happen).

Good luck with your decision.

Hello Everyone from this lovely group.

i have been reading tons of information and decided to join since my cardiologist finally told me i must get my valve replacement before the year ends. Little information about me, i was born with a biscupid aortic stenosis which was mild when i was a child but now that i am 29 years old its on the severe side and i must get it replaced.

To say im super scared would be an understatement as this will be the first surgery, any suggestion on top ranked hostpitals to get this done, i currently live in a country which

does not offer the best medical interventions so i am planning to have this procedure done in the united states, im thinking getting a mechanical valve is the way to go but also thinking a bovine valve could be a good option while i wait for the Foldex TRIA valve trials to finish (this is if im being to opstimistic).

##

 

[Dunwanted]

Hello again, everyone thank you so much for the information i have done a lot of research as well everything looks like i will be choosing the mechanical valve, already have seen somevideos on INR home testing to be prepared and also saw @pellicle video on it.

pretty scared about bleeding issues, clotting etc with the mechanical valve, but it is what it is i will try and do my best to prevent it.

just started talking to the cleveland hospital to schedule and start doing some tests and then schedule my operation date, im hoping for a mini thoracotomy for this operation due to the scar and recovery time but will see what the surgeon recommends.

thank all of you soo much for all the information and support.

this has been very hard for me these past few days, everything was going so good with my life and now suddently i have to put a temporary stop to everything, but atleast im glad its something that has a solution .