Doctor has given me a timeframe for the first time for surgery but it appears I have fallen into severe range..please see echos below and my post

[newarrior]

Hello Everyone from Bangkok/Thailand,

For the 1st time ever I have a time estimate of when I'll need surgery to replace my calcified aortic tricuspid valve.

Someone on a valve group said, "Can you get another opinion on your prognosis? Your aortic valve area is 0.78cm. I had my replacement surgery when mine got down to to 1.0. What are they waiting for?"

I am currently 59--estimate is 2 years for the surgery. So new valve at 61.

I am pretty freaked out as the diagnosis says severe yet he thinks I have two more years until I need surgery (?)

The two year window seems generous if I am severe--I will meet with my MD again as well as get a 2nd opinion.

I am getting echos every 6 months although the next one is in 8 months.

He is thinking that I can go for a biological valve because he doesn't want to have me on blood thinners.
I never discussed my concerns about blood thinners or ticking BTW.

Estimate is 10,870 USD to 27,180 USD here at a top University hospital---more if I do it at private hospital.

I am 100% on the hook for the bill as insurance will not cover pre existing.

Other option is go back to the states, do it for free in LA/Califorinia where I think can get reinsured for free..
I can do an Air Bnb and then bounce back to Thailand in a month or so (reasonable to assume I can do all this while severe ?)

I've included my echo test results.

Is two years a realistic window given the recent echo ?

Further thoughts ?

Thank you) David Pearl

 

[svAdagioME]

I am same age as you, and have gone through a similar waiting/questioning process. I doubt anyone online will or should evaluate your echos and give an opinion. My suggestion is to get that second opinion.

My cardiologist has been great. He told me that timing of the surgery decision is judgement, and that different Drs will have different views because there is no perfect “time”. It is a set of complex tradeoffs. The echos, CTs and caths are not perfect measures. I had regular echos showing regular decline and reached “severe” on stress echos, but then the day I went to meet with the surgeons they did another echo and it was well within “moderate”. I was very confused. I was upset. They described that in some cases if there is a lot of regurgitation some of the other measures can look less bad and vice versa. They can look different under load vs resting,and talked to me about why that is and what they think it means in my case. I am having surgery next week. Perhaps I could have it done a year from now and be OK. Probably if I waited 2 yrs the outcome would not be as good. The symptoms are getting worse.

My suggestion is see another cardiologist if you are not comfortable. If you are seriously considering addressing this in the US then maybe see a cardiologist that is well recommended in the US. It has been valuable to me to have doctors I know and trust because the tests and measures they use do not provide hard “trigger” metrics that say exactly when to do this surgery, so judgement and expertise are important.

 

[newarrior]

Hey just a quick reply cuz I'm with friends right now. So I've gotten three opinions I've gotten two echoes the first place I went which said I was severe told me not to come back for another 6 months for an Echo and didn't think that was going to need the surgery in 2 years but I'm going to go back there again it's a government hospital. The second doctor I want to went to which only had me as moderate was telling me to have the surgery in two or three months the Third Doctor I went to where I didn't do an echo is telling me to do the surgery at 6 to 12 months I'm going to go back to the first doctor a government hospital and they were supposed to check with the technician and see if they can get more information but I'm trying to determine how bad my valve is and how long I could wait to get it done also because I live overseas I have to pay cash for everything so that's another consideration. I might get a fourth opinion and a third Echo from another hospital here in Bangkok and if all else fails I can send my Echoes off to a cardiologist at Cedar Sinai in Los Angeles so I used to work with years ago at some point do I have to make a decision because I don't want to wait too long and have my valve fall apart and risk having a heart attack or death or a stroke or a bad outcome from surgery also I'm turning 60 years old next year and I kind of want to get the surgery and get on with things cuz I'm kind of at a critical juncture in my life as far as my relationship with my partner getting a job making life decisions you know I'm 6 years old I have no job no family no house no security I've just got a bunch of money in the stock market which is crumbling so I don't want to get the surgery but it's better that I get it done now so I can recover and then do the things I really want to do which is traveling and getting a job

 

[Timmay]

Here is another thought …

As you get older and the AS becomes more severe, your heart has to work harder to get the same amount of blood out of that small opening. The heart is a muscle - and since it is working harder, it’ll thicken and get bigger. That’s not a good thing.

So, since you know that you will absolutely have to get it done, and IF you’re going with a mechanical valve that will last for the rest of your life, then what’s the point in waiting? Do it at a point when you’re in good health AND before the heart thickens up.

Delaying will put you at risk. Delaying might mean that you have to have emergency surgery. Delaying could mean that you have to do it when you’re not in good health.

This is based on a mechanical valve choice. For me, I honestly wouldn’t even consider a tissue valve if you’re under 60yr old … especially if you’re active. JMHO.

 

[newarrior]

Okay first off I'm totally paranoid about having heart damage as well or heart failure or a heart attack. However I live in a foreign country I have to pay cash and also trying to determine what my diagnosis is and how long I could wait I agree with you the sooner the better by the way I'm just a couple of months shy of turning 60 years old. The mechanical valve fills me with Dread I have a lot of anxiety in the ticking would drive me nuts I've already got ringing in the ears also the idea of blood thinners on the rest of my life sounds miserable I'll reconfirm this with my doctors I'm going back to my main hospital on Monday.. I'm trying to drive this to a conclusion as soon as possible so I don't take any additional risk I'm scared out of my mind it's currently early Saturday morning here in Thailand late afternoon Monday I'm going to go back to my first doctor and see if I can get clarification on this whole thing. Unfortunately it's a government hospital if I don't feel like I'm going to be able to do it there then I'll jump over to a private hospital and try to get it done quickly

 

[newarrior]

1) I am 100% cash patient so searching for a place I can afford
2) Not doing it in the USA
3) Live overseas--insurance does NOT cover pre existing conditions
4) Trying to determine how bad my valve is, when they recommend replacing it, etc etc
5) Looking to do treadmill test as well
6) Trying to determine valve type
7) Trying to determine where to do surgery
8) Hence the wait
9) Trying to drive this to a conclusion ASAP

 

[dornole]

Have you had a TEE or just regular echos?

 

[pellicle]

Okay first off I'm totally paranoid about having heart damage as well or heart failure or a heart attack.

I would recommend that you are then best set (based on what I know and what little expertise I have in this area) to get it done ASAP and as a priority.

The time for action is now, not 6 months from now.

Best Wishes

 

[newarrior]

I would recommend that you are then best set (based on what I know and what little expertise I have in this area) to get it done ASAP and as a priority.

The time for action is now, not 6 months from now.

Best Wishes

Agreed and this is my goal

 

[newarrior]

Have you had a TEE or just regular echos?

Regular echos--what is a TEE ?

 

[pellicle]

Regular echos--what is a TEE ?

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/transesophageal-echocardiogram.

 

[newarrior]

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/transesophageal-echocardiogram.

thanks already checked it out--will ask my cardiologist on Monday..Thank you)

 

[dornole]

The TEE is much more accurate because it is looking from inside your chest and can get better angles. Twice now they’ve thought I was severe but the TEE reversed it and I’ve been surgery free for more than a decade after this first “scare.” Even if it was confirmed I would need surgery, the surgeon would want the TEE to get a good look at what they’re getting into before operating.

 

[newarrior]

amazing on tee

 

[tommyboy14]

You should consider Germany or the UK for your surgery. The surgery in Germany costs around 25k Euro and in the UK around 29k pounds. These are quotes for the best doctors and best hospitals in these countries respectively. With the USD so strong at the moment, perhaps it is worth trying?

Of course, the best doctor and hospital in Thailand could be excellent and on the same level as the one in the UK or Germany. I am not an expert on this. But I can say that the UK has some world leading hospitals in this area and probably some of the best surgeons in all of Europe.

PM me if you want some UK/Germany doctor and hospital recommendations.

 

[newarrior]

You should consider Germany or the UK for your surgery. The surgery in Germany costs around 25k Euro and in the UK around 29k pounds. These are quotes for the best doctors and best hospitals in these countries respectively. With the USD so strong at the moment, perhaps it is worth trying?

Of course, the best doctor and hospital in Thailand could be excellent and on the same level as the one in the UK or Germany. I am not an expert on this. But I can say that the UK has some world leading hospitals in this area and probably some of the best surgeons in all of Europe.

PM me if you want some UK/Germany doctor and hospital recommendations.

Thanks I live in Thailand--hospitals are cheap here JCI accredited and this is where I have support...

 

[pellicle]

Thanks I live in Thailand--hospitals are cheap here JCI accredited and this is where I have support...

Moddeydhoo has said good things about the level of care there ... although not about INR management, so if you go mechanical you'll really want to self manage ... Thailand was quite poor at that aspect
https://www.valvereplacement.org/threads/how-scared-should-i-be.888016/

 

[AZATADINE]

I had mine replaced when my valve area hit 1.0 cm^2.....it dropped from around 1.3 cm^2 to 1.0 cm^2 over a period of a year or thereabouts despite being pretty stable for years prior to that.

 

[user 16827]

10000% aware and am driving this to a conclusion asap..what would make you think otherwise ? your comment is offense and seems to presume I am an *****....

Mr Pearl, in your post #3
By a typo you stated you were 6 years old ( unless you now decide to edit your mistake )

I think you owe Caroline an apology.

@groundhogday

 

[sharky7]

Regular echos--what is a TEE ?

TEE bottom line, and without using too many words is this, the closer they get to your heart for the ECHO is much better and see much more things. this is the TEE, the other is on the outside, the TEE is thru the mouth, and into the inside of ya body, and to get much closer for a much better look at ya heart, and to see what is going on, C what I mean?