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Superman

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Grand Rapids, MI, USA
I am researching my options...Are you living overseas ? Paying for your own surgery ? Considering doing surgery in a foreign country that does speaking primarily English ?
Adding. We all have challenges. I had my heart valve replaced before I left high school. Even before I had my first date.

When I moved out of my parents house, finding a job with insurance was my only option. I started basically as an on call worker because the place had benefits like health insurance (which, unlike my healthy friends, I couldn’t risk being without) and tuition reimbursement.

I was able to post to a full time spot a couple months after hiring in, so my benefits became more affordable. I was renting a place with a couple people I had never met before in a new city to me and I started using the tuition reimbursement to put myself through college. My parents weren’t college minded people. I’m sure they were proud of me, they just weren’t subsidizing me. So I took classes at a community college first then transferred to a four year school.

Here I am years later with a masters degree, $0 student loan debt, a good primary job, a side gig teaching at a university, an amazing wife and five awesome kids. I’ve been blessed to stay in that same industry and had health insurance when each of our kids were born and when I needed the second heart surgery.

So when I say that sometimes you just have to make a decision and move forward, it does come from experience. I could have just told myself that there’s no way an on call position can work. I need full time! I can’t move in with strangers! What if they take my bike? And frankly, at 17 I’m glad my team just made the decision of St Jude for me. They showed the options and explained what they were using and why. They still had the ball and cage around back then!
 
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Timmay

Grandfather Clock
Supporting Member
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Apr 22, 2022
Messages
148
Location
Frederick, MD
If you are struggling this much over making a valve choice ... and you choose a tissue valve ... you're going to freak out within 5-15yrs when you're tissue valve is bad and you need to do this all over again. You're between a rock and a hard place sir. Don't get me wrong, mech valve is the best choice - but probably not for you. Why? ...

Because the ticking WILL bother you. Why? Simple. Look at your back and forth here. I can read your personality and you're the person who is going to complain about this. Period. So - even though you're going to end up back in the hospital again in 5-15yrs, the tissue valve might be the best choice for you (even though it is clearly not the best choice medically).

What you don't realize is that you're actually the type of person that is already setup for "mech valve clicking" success. You're already running outside noise all the time! I don't hear my On-X at all at night because of all of the white noise that I play. If you are an individual that keeps heavy background noise - you're going to be fine sleeping. The only time I hear my valve is 1) in a quiet bathroom because there is no background noise or 2) when I am not in my normal location/routine. For #1, sometimes I decide to play music through my iPhone ... although that is happening less and less over time. For #2, I play white noise through my iPhone (like I did this week when camping in the forest ... FWIW, I played crickets chirping 😎).

I'm almost at 5 months and the ticking is now finally becoming part of me and integral to what I expect to hear. That said, I don't have misophonia (Misophonia - Wikipedia)
 

Daniel758

VR.org Supporter
Supporting Member
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Apr 24, 2018
Messages
82
Location
California
I think the biggest thing to think about regarding valve choice is that if I'm living in Thailand when I do my next surgery in about 10 years then I'll have to pay for a Tavr.. then another 10 years later I'll have to pay for a valve in valve.. however the price is might come down significantly for some of these procedures or I may simply drop dead before I end up getting a second or third procedure. And if that point I'm still living in Thailand it won't really matter because the cost of living is so low here as long as I've got enough money to cover my expenses until I drop dead of whatever kills me then it doesn't matter. And I don't have children and I don't own a home anywhere so I don't have to worry about those sorts of things I just rent out a cheap condo for a couple hundred dollars a month here till I drop dead of old age

Newarrior,

At some point you have to take full personal responsibility for yourself and your situation, both medical and financial. Full stop here.

First, you know you'll need surgery so pick a valve option and move on.

Second, no one owes you a free surgery or a life free of having to work for a living before or after surgery. That's just how life in the real world works.

Your new reality is that you've mismanaged your reserves and lost your money in the market and now you'll either have to go to work or find some other way to pay for yourself going forward. Not a lot of options to weigh here either.

One positive is that you're in Thailand and living expenses are low and even a relatively small amount of reserves could get you by. My best advice is find a good financial advisor to help you invest what you have left or simply buy into an income fund such as JEPI (NYSE) that should give you a pretty reliable dividend.

Good luck.
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
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Queensland, OzTrayLeeYa
If you are struggling this much over making a valve choice
I think that he's struggling with:
  1. why is this happening to me
  2. what should I do (surgery or sit down and die)
  3. should I have surgery or wait
He's addicted to asking about this problem but has no concept of the requirement: taking action.
 

pellicle

Professional Dingbat, Guru and Merkintologist
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Messages
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David

I know (from dealing with you over years) that you're probably sitting there thinking "why is everyone being so mean to me", when the answer is in truth we are not being mean, we are actually caring (those of us who are posting).

Being mean is when people seek to throw stones at you (NB something which has no value to you and is intended only to cause harm), instead people here respond because they are (slightly) invested in what happens to you.

By continuing to repeat the same things again and again you are actually showing people a wall; a wall of "I'm not listening to anything you say".

I'm sure you don't see that, because I'm sure you are only seeing things from your own perspective and looking inwards (not outwards).

This can be found in your constant reference to your situation and not to dealing with the information. Your constant seeking of additional information while neglecting or rejecting what you already know.

What you know is this: you are in need of surgery, you have crossed the line into severe and if you don't act soon (yes, you ... YOU have to act {and I don't mean on a stage}) you will suffer.

I suspect that the problem comes from the situation you outline when you say you having no living family. When you previously described how you live off investments which you inherited. It makes me think that you do not have the experience of actually being responsible for yourself (note: responsible is not the same as being alone). You have (I strongly suspect) not had to actually take care of yourself (you know, like get a job, juggle priorities ...) and act like an adult.

To the outside it would seem you act like a child, asking why is it happening to me. Yet you actually KNOW why it is happening to you. Lp(a) is why its happening to you.

You have tried the course of non-action (Vegan diet) and this has not been the magic elixir of cure that you hoped it would be.

Now you face either death from failing to act or salvation from acting and having surgery.

As is commonly said here: there are no wrong choices except to not choose.

So pick one and go.



Considering doing surgery in a foreign country that does speaking primarily English ?

even YOU know this is complete bull5hit because you speak to your various medical professionals in english. Stop coming up with childish excuses.

You have plenty of discussion and good points (even if only from me) on which valve to pick and why. So just get it done mate ... no ... phucking really ... just book it in and get it done.

Best Wishes
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
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Messages
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Location
Queensland, OzTrayLeeYa
, I play white noise through my iPhone (like I did this week when camping in the forest ... FWIW, I played crickets chirping 😎).
suggestion

or this one with a bit of thunder

and others on that site :)
 

newarrior

I have severe tricuspid aortic stenosis live in Ba
Joined
Jun 28, 2019
Messages
605
Location
Bangkok Thailand
If you are struggling this much over making a valve choice ... and you choose a tissue valve ... you're going to freak out within 5-15yrs when you're tissue valve is bad and you need to do this all over again. You're between a rock and a hard place sir. Don't get me wrong, mech valve is the best choice - but probably not for you. Why? ...

Because the ticking WILL bother you. Why? Simple. Look at your back and forth here. I can read your personality and you're the person who is going to complain about this. Period. So - even though you're going to end up back in the hospital again in 5-15yrs, the tissue valve might be the best choice for you (even though it is clearly not the best choice medically).

What you don't realize is that you're actually the type of person that is already setup for "mech valve clicking" success. You're already running outside noise all the time! I don't hear my On-X at all at night because of all of the white noise that I play. If you are an individual that keeps heavy background noise - you're going to be fine sleeping. The only time I hear my valve is 1) in a quiet bathroom because there is no background noise or 2) when I am not in my normal location/routine. For #1, sometimes I decide to play music through my iPhone ... although that is happening less and less over time. For #2, I play white noise through my iPhone (like I did this week when camping in the forest ... FWIW, I played crickets chirping 😎).

I'm almost at 5 months and the ticking is now finally becoming part of me and integral to what I expect to hear. That said, I don't have misophonia (Misophonia - Wikipedia)
It's interesting because I have tinnitus so I dread a 2nd noise yet I may adapt to it because I already adapted to 26 years of tinnitus..I am aware of misophonia...I don't have it--I have hyperacusis from damaged ears..I worked with the leading tinnitus/misophonia/hyperacusis expert Pawel Jastreboff for 2 years...Yes 1-2 more surgeries plus cost of those surgeries is crazy but a life on warfarin and the ticking may be worse
 

newarrior

I have severe tricuspid aortic stenosis live in Ba
Joined
Jun 28, 2019
Messages
605
Location
Bangkok Thailand
"One positive is that you're in Thailand and living expenses are low and even a relatively small amount of reserves could get you by. My best advice is find a good financial advisor to help you invest what you have left or simply buy into an income fund such as JEPI (NYSE) that should give you a pretty reliable dividend." My investments are good--I get dividends plus interest and am also invested in value stocks..I have a diverse portfolio and have a leading VP from Morgan Stanley who has helped me a lot + I manage some on my own..Correct my expenses are low in Bangkok but my quality of life is high....I have always been frugal and lived simply and wisely. My only errors were not buying a home stateside years ago AND not developing a career...I am working hard to get new job, rebranding myself and seeking additional education as well as working my Linkedin like a maddog)..I also get occasional work as an actor and have done remote English teaching to China
 

pribanic4

Member
Joined
Jul 24, 2022
Messages
13
If you are struggling this much over making a valve choice ... and you choose a tissue valve ... you're going to freak out within 5-15yrs when you're tissue valve is bad and you need to do this all over again. You're between a rock and a hard place sir. Don't get me wrong, mech valve is the best choice - but probably not for you. Why? ...

Because the ticking WILL bother you. Why? Simple. Look at your back and forth here. I can read your personality and you're the person who is going to complain about this. Period. So - even though you're going to end up back in the hospital again in 5-15yrs, the tissue valve might be the best choice for you (even though it is clearly not the best choice medically).

What you don't realize is that you're actually the type of person that is already setup for "mech valve clicking" success. You're already running outside noise all the time! I don't hear my On-X at all at night because of all of the white noise that I play. If you are an individual that keeps heavy background noise - you're going to be fine sleeping. The only time I hear my valve is 1) in a quiet bathroom because there is no background noise or 2) when I am not in my normal location/routine. For #1, sometimes I decide to play music through my iPhone ... although that is happening less and less over time. For #2, I play white noise through my iPhone (like I did this week when camping in the forest ... FWIW, I played crickets chirping 😎).

I'm almost at 5 months and the ticking is now finally becoming part of me and integral to what I expect to hear. That said, I don't have misophonia (Misophonia - Wikipedia)
And what many don’t seem to understand on this site is many people don’t have a choice so to glorify the mech valve and the pessimism shared on here against tissue valves can make this journey for many much more difficult then it already is . If you have a choice great !
 

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
148
Location
Frederick, MD
And what many don’t seem to understand on this site is many people don’t have a choice so to glorify the mech valve and the pessimism shared on here against tissue valves can make this journey for many much more difficult then it already is . If you have a choice great !

From what I have seen so far, most actually do have a choice. Have you seen different here?

These individuals don't really have a choice ...
  1. Contraindicated for Warfarin. Rare.
  2. Future pregnancy. Not many.
  3. Coagulation defects. Rare.
  4. Documented history of internal bleeding?

The rest have a choice. Even those with worries of hearing clicking.

🤷‍♂️

I am not against tissue valves. I am not against people having a choice. I am not against someone choosing a tissue valve over a mech valve even when they aren't contraindicated. 'Murica. Freedom. I am actually seriously hoping that technology improves so that Tissue valves last a guaranteed 30 years.

The main points from me to convey here would be to ...
  1. Illustrate that "blood thinners" aren't the devil. Educate & Lighten/Remove the huge negative stigma that most new people bring with them when they arrive here on this forum.
  2. Educate that current science shows that tissue valves do NOT last as long as a lot of surgeons are saying ... especially in young and active people.
  3. Educate that TAVR is not a guaranteed procedure as a lot of surgeons present it. You have to qualify for TAVR after an evaluation after your tissue valve fails. So, if you're banking on a tissue valve and then a TAVR ... you have a significant risk of being extremely disappointed.
  4. Educate that more Open Heart Surgeries are statistically linked to higher mortality rates (more deaths).
Tim
 

Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,751
Location
Grand Rapids, MI, USA
And what many don’t seem to understand on this site is many people don’t have a choice so to glorify the mech valve and the pessimism shared on here against tissue valves can make this journey for many much more difficult then it already is . If you have a choice great !
Honestly I think the vibe is more against the Warfarin boogey-man and a dose of realism to counter some of the optimism sold by surgical teams on tissue valves.

We have plenty of folks here that were sold tissue on the promise of either one and done or TAVR next time, and their team couldn’t deliver on that promise for various reasons. I know someone outside of here that was told TAVR next time prior to 2010 and just got a mechanical valve when their tissue replacement wore out.

It’s not anti-tissue. It’s just that people need to know that one likely outcome is a second open heart surgery. And for many, that choice remains preferable to a lifetime medication and monitoring. Nobody has a problem with that. What people do have a problem is when people are led to believe they can have the best of both worlds. No meds and no second surgery.

We’ll get there someday I hope. But we aren’t there yet. Not consistently enough to make that promise and call it an informed decision.

Again, there’s nothing wrong with opting to avoid medication and ticking for another decade or two of normalcy. I get that desire, and I’ve been ticking and medicating for close to 32 years (next month).
 

pellicle

Professional Dingbat, Guru and Merkintologist
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to counter some of the hope and 10 year myopia sold by surgical teams on tissue valves.
I fixed your woke mixed words

;-)

Again, there’s nothing wrong with opting to avoid medication and ticking for another decade or two of normalcy.
... as long as you understand what you are trading off, what the facts (not the beliefs) are and do understand that there are more risks to late reoperation than you may be "led" (like a lamb somewhere :unsure: ) by those who really don't care about you (but about their personal stats) to believe.

I mean having had 3 surgeries how would I frikkn know right? I'm just some random Australian dude on the internet.
 
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pellicle

Professional Dingbat, Guru and Merkintologist
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Messages
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not to superman, but just leap frogging in general to flesh out the idea...

Again, there’s nothing wrong with opting to avoid medication and ticking for another decade or two of normalcy
especially if your first surgery is older (you know, like 28 not 8) and you've just got a desire to go through those "wild oats years" without restrictions.

Then when you get to 38 (and assuming its not 32) and they tell you that your valve is starting to stenose and those checkups reveal less and less good news you find yourself back on the lineup for the waiting room.

You will inevitably find that (and those parameters) will put you back into surgery somewhere between 5 and 15 years (from 28).

What will you do then?

Sure technology may have answered that question by then, or it may not have. To me over 10 years into a mechanical valve (fitted on my 3rd OHS) I find warfarin to be a "meh" and I've been free to roam (travelled more of the world in those 10 years than most people in a life time, and indeed had the 10 years before that).

I can assure you that I would not like to venture into a 4th OHS because I'm more concerned with how I'll come out alive than if I did die in surgery (which is very rare).

So I wake up each morning to the sound of my heart beating ... which I find better than the alternative. Allow me to paraphrase a classic scene:

1665787294160.png


and I'm of the view that I'd like this life to go on longer than shorter.

Make no mistake, every choice we make turns us into something else. So what matters is the choice and understanding where that path leads.
 

Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,751
Location
Grand Rapids, MI, USA
Well here is to hoping the Inspiris Resilia Aortic heart valve can last 20-25 years it's a promising looking experiment. I had to try it ,I'll keep you posted every year I'm alive! Just roll the dice man ,pick one and get to living.
I hope so. One of my boys may some day need an intervention. So far so good. The longer he can wait the better. Still in mild territory in his 20’s. Hoping for never, but if it’s 10 or 20 years or more down the road, I’d love for him to have a realistic one and done option with no need for ACT. Or especially a truly durable TAVR option. I’m glad they keep working at it.
 

70sdiver

Well-known member
Joined
May 13, 2019
Messages
75
Location
Richland wa
well the valve is made for a TAVR mating for the future if need be. I was in the waiting room for 10 years for my stenosis to progress to a replacement. i think if he can make another 5-6 years we should have a better idea of how long it will last. They are doing an 11 year study its in the 6 the year now . The 5 year study looked very promising.
 

pribanic4

Member
Joined
Jul 24, 2022
Messages
13
From what I have seen so far, most actually do have a choice. Have you seen different here?

These individuals don't really have a choice ...
  1. Contraindicated for Warfarin. Rare.
  2. Future pregnancy. Not many.
  3. Coagulation defects. Rare.
  4. Documented history of internal bleeding?

The rest have a choice. Even those with worries of hearing clicking.

🤷‍♂️

I am not against tissue valves. I am not against people having a choice. I am not against someone choosing a tissue valve over a mech valve even when they aren't contraindicated. 'Murica. Freedom. I am actually seriously hoping that technology improves so that Tissue valves last a guaranteed 30 years.

The main points from me to convey here would be to ...
  1. Illustrate that "blood thinners" aren't the devil. Educate & Lighten/Remove the huge negative stigma that most new people bring with them when they arrive here on this forum.
  2. Educate that current science shows that tissue valves do NOT last as long as a lot of surgeons are saying ... especially in young and active people.
  3. Educate that TAVR is not a guaranteed procedure as a lot of surgeons present it. You have to qualify for TAVR after an evaluation after your tissue valve fails. So, if you're banking on a tissue valve and then a TAVR ... you have a significant risk of being extremely disappointed.
  4. Educate that more Open Heart Surgeries are statistically linked to higher mortality rates (more deaths).
Tim
Please contact Dr Rachael Hughes head of Gerald McGinnis Cardiovascular Institute of Allegheny General Hospital in Pittsburgh or Cleveland Clinic and ask if everyone one can choose between a mech and tissue … not all are candidates ….
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
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Messages
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Queensland, OzTrayLeeYa
not all are candidates …
if you are saying "not all are candidates for mechanical valve" this is entirely true. If you are contra-indicated for anti-coagulation therapy then you are not suitable for mechanical valve.

The fact is however that very very few are contra-indicated (bleeding disorders or young females wanting to have children being the major groups).

Eg from: https://academic.oup.com/eurheartj/article/43/7/561/6358470

1665875467409.png

This is all made clear in the Surgical Guidelines (the American ones, each region has its own like European, Australian and New Zealand ...) which almost nobody who posts here ever reads it seems.

Best wishes
 
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Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
148
Location
Frederick, MD
Please contact Dr Rachael Hughes head of Gerald McGinnis Cardiovascular Institute of Allegheny General Hospital in Pittsburgh or Cleveland Clinic and ask if everyone one can choose between a mech and tissue … not all are candidates ….

Thanks for repeating exactly what I said. Did you not read my post?

I literally listed conditions that would require someone to choose a tissue valve. And then you quote my response and ask me to contact doctors that would tell me what I just said.

Please read before replying.
 
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