Croatian New member-severe aortic stenosis?

[pellicle]

It is hard for me. I am scary of open heart surgery and TAVR is revolution.

its scary for everyone ... and TAVR is only a revolution for the elderly and frail. There is an old saying: a coward dies a thousand deaths ... you won't die a thousand times, but you will regret the outcome I'm quite confident of that.

Arnold Swarzzeneger have 2 surgery's in 20 years.

you don't know the half of it and how much he ruined himself ... he took a Ross however so you should do some reading about that. Its discussed widely here

Look at the famous Arnold Schwarzenegger who had the Ross in 1997, with 2 following surgeries and the final at the Cleveland Clinic this past October.

https://hcatodayblog.com/2018/04/06/what-was-wrong-with-arnold-schwarzeneggers-heart/
It appears that you have time to really research the topic and decide which direction to go. Lots of info out there.

you can get anything if you pay for it ... that does not make it good for you.

Best Wishes

 

[dornole]

It is hard for me. I am scary of open heart surgery and TAVR is revolution. Arnold Swarzzeneger have 2 surgery's in 20 years. I don't mind that. Just want to avoid open heart surgery. I must decide. I will read more stuff. Thank all of you for info's.

I just had OHS 12 days ago for a more complicated surgery (mitral mechanical valve replacement, triscuspid valve repair, a maze procedure, and a left atrial appendage ligation) even with some complications, I’m already back home with zero pain. The sternal scar is actually about half healed on the surface. I am age 56.

To give someone your age a tissue valve (regardless of whether as tavi or traditional ohs) means you will definitely need OHS down the road. I decided to bite the bullet and do it now while I am relatively young healthy and able recover. The mechanical valve will last me a lifetime. My surgeon said in my case a tissue valve would only probably last 3-4 years. While I’m recovering well, I sure don’t want a second ohs.

Per the US cardiology guidelines anyone under age 50 should get a mechanical valve. That is just the medical consensus.

The other thing to understand about TAVI is that is NOT safer than OHS in terms of dying in the operating room which seems to be what you fear. It is normally used for elderly patients who are too weak for OHS. I’m assuming the cash price for TAVI relates to how medical payments work in your country. It is important to say this is not a luxury upgrade. OHS today is a safe procedure that especially for someone of your age will give a very good outcome. TAVI is a wonderful technology for your grandma that can extend her years and quality of life. For us? Not so great. The younger you are, the faster tissue valves degrade.

Keep asking questions, only you can make this decision for yourself but you should make sure logic is driving your decision not fear. It is rough because this was such a shock to learn about but you will get your wits about you and be able to think very carefully.

Best wishes you will get through!

 

[kobaha21]

I understand. Young people often do not ever believe that they will grow old one day. Just consider that the TAVR may very well only last 5 to 10 years and not 10-15. They have very little data on younger patients with TAVR, but young patients go through them faster. Are they telling you to expect 10 to 15 years? If so, I question that guidance.
I totally get the concept of living day to day and wanting to avoid OHS in the short term. But, bear in mind, that you might end up being in your 50s and wishing that you had thought 20 to 40 years ahead, instead of 5 or 10. You're 46 and have a potential long life ahead of you

Regardless, the choice is 100% yours. I would just encourage you to give it a lot of thought before getting set on TAVR.

Yes. That's true. Mechanical valves last forever() but I must take anticolagation pills every day. I they have simptoms? I will search today and tomorrow forum little bit about that. First I must do TEE and we will se. Tnx on info's

 

[kobaha21]

I just had OHS 12 days ago for a more complicated surgery (mitral mechanical valve replacement, triscuspid valve repair, a maze procedure, and a left atrial appendage ligation) even with some complications, I’m already back home with zero pain. The sternal scar is actually about half healed on the surface. I am age 56.

To give someone your age a tissue valve (regardless of whether as tavi or traditional ohs) means you will definitely need OHS down the road. I decided to bite the bullet and do it now while I am relatively young healthy and able recover. The mechanical valve will last me a lifetime. My surgeon said in my case a tissue valve would only probably last 3-4 years. While I’m recovering well, I sure don’t want a second ohs.

Per the US cardiology guidelines anyone under age 50 should get a mechanical valve. That is just the medical consensus.

The other thing to understand about TAVI is that is NOT safer than OHS in terms of dying in the operating room which seems to be what you fear. It is normally used for elderly patients who are too weak for OHS. I’m assuming the cash price for TAVI relates to how medical payments work in your country. It is important to say this is not a luxury upgrade. OHS today is a safe procedure that especially for someone of your age will give a very good outcome. TAVI is a wonderful technology for your grandma that can extend her years and quality of life. For us? Not so great. The younger you are, the faster tissue valves degrade.

Keep asking questions, only you can make this decision for yourself but you should make sure logic is driving your decision not fear. It is rough because this was such a shock to learn about but you will get your wits about you and be able to think very carefully.

Best wishes you will get through!

Uuuu Respec! That was big surgery. That's inspire me a lot. I read your posts of all of you and I am greatfull. You all want to help with good advices. Your story is inspirating and I am on the start now. In 5 days I have MSCT coronarogeaphy. And then TEE(waiting for termin). Hope that MSCT coronagraphy will help for some data of my arteries and maybe valves. I really don't know from ultrasound anything yet. One more time, tnx for wishes and I want you fast recovery. God bless you.

 

[3mm]

but I must take anticolagation pills every day. I they have simptoms?

Very few people have problems with Warfarin. A good source of information is from Mayo Clinic, a major hospital in the USA:
https://www.mayoclinic.org/diseases...s/in-depth/warfarin-side-effects/art-20047592

Many people on this forum have MANY years of experience taking Warfarin with no major problems. It is a very safe drug as long as you take your correct dose each day and test your INR every 1 or 2 weeks.

I take Warfarin every day to keep my INR between 2.0 and 3.0. I have NO worries about the side effects of taking it. I measure my INR every week and adjust my dose if needed. During the last year I have only needed to make adjustments when I had a tooth pulled, and when I took antibiotics because I had pneumonia.

 

[kobaha21]

Very few people have problems with Warfarin. A good source of information is from Mayo Clinic, a major hospital in the USA:
https://www.mayoclinic.org/diseases...s/in-depth/warfarin-side-effects/art-20047592

Many people on this forum have MANY years of experience taking Warfarin with no major problems. It is a very safe drug as long as you take your correct dose each day and test your INR every 1 or 2 weeks.

I take Warfarin every day to keep my INR between 2.0 and 3.0. I have NO worries about the side effects of taking it. I measure my INR every week and adjust my dose if needed. During the last year I have only needed to make adjustments when I had a tooth pulled, and when I took antibiotics because I had pneumonia.

Tnx. I will read it.

 

[SatoriFound]

Well, I buy for my self 10 or 15 years with TAVR and who knows...Why do OHS and risk not to wake up from surgery. Who knows what will be with the world in 10 or 15 years.. Don't think that much long. Live day by day.
TAVR is non invasion one hour procedure. Why not for 7000E?

Of course this is 100% your choice, but the why not is because most likely the planet will still be spinning in 10-15 years.

A bioprosthetic CAN last 20 years, but that doesn't mean it will. I have read stories from people where they failed in three. You MAY, at your age, get 10 years. Let's use that number, although it could be less. That puts you at 56 years old. So, let's say they can do valve in valve at that time, with TAVR again. That would put you at 66 in another 10 years. So, at that point Open-Heart surgery becomes far more dangerous, but it is most likely what you will require. It will be more risky due to your age, and then add in the risk factor of having undergone TAVR twice, and risk is multiplied. TAVR is minimally invasive, but that doesn't mean it doesn't cause scarring, etc inside your body. All that said, as Pellicle stated, you may very well have to get Open-Heart surgery for the second operation and while still young, you will be older and so the recovery will likely be a bit harder.

My husband went through this same decision making process as he is only 51 and just had his valve replaced two weeks ago. He chose mechanical because it is, more than likely, a one-and-done scenario. He can just enjoy the rest of his life without having to go through this ever again. He was unsure about Warfarin management, but reading this forum made him feel confident it wouldn't be a big deal. He already takes daily medication, what's one more. After he gets through the learning stage he will move to home monitoring or his inr which makes Warfarin management even easier, as you can tweak your own dosage as needed for quick adjustments.

Anyway, as I said, this is 100% your decision and you have to make the best decision you can for yourself. If all you are worried about is making it easy right now, then I guess a bioprosthetic is fine. If you would like to make your life easier for the next 40 years though, a mechanical is the way to go.

 

[SatoriFound]

It is hard for me. I am scary of open heart surgery and TAVR is revolution. Arnold Swarzzeneger have 2 surgery's in 20 years. I don't mind that. Just want to avoid open heart surgery. I must decide. I will read more stuff. Thank all of you for info's.

That fear is valid, but in reality, the mortality rate for open-heart valve surgery is very low and being your age and healthy, well.... LOL The mortality rate includes ALL people who have the surgery. Many are VERY sick when they have it. As a healthy person your odds are much higher than someone with severe heart damage already and carrying multiple co-morbidities, such as obesity and diabetes.

 

[Atreus]

Hello, sir! I am from Romania, I had not one but two open heart surgeries in the span of 2 years!! I am still alive without complications. The first one was at 20 and second when I was 22 years old. First one consisted of a valvuloplasty which you guessed, it didn't last, the thing was that nobody wants a young student to take anticoagulants, to manage his INR and so and so. At the second intervention I got a mechanical valve and now for a year and half I have been taking anticoagulant treatment and everything is good. So based on my experience I advise you to undergo only an OHS where your valve will be replaced with a mechanical one. It was a shock for me to undergo a second OHS so soon, you have to take in consideration that might be the case for you too, I have a 42 years old friend who had the surgery done in the same time as mine, he is fine ticking and living and is going to have his second wedding soon, so life goes on. I see no reason for you to not have an OHS you are young, fit, active, you will recover quickly. Yes you will take a break from lifting and drinking beer and smoking, but you will go back to these activities in no time (hopefully you will quit smoking). It's a scary huge, major interventions which movies made it look as a death sentence but it's not that it's a surgery that helps you live longer.
Please do not hesitate to ask me any type of question!

 

[vitdoc]

Well, I buy for my self 10 or 15 years with TAVR and who knows...Why do OHS and risk not to wake up from surgery. Who knows what will be with the world in 10 or 15 years.. Don't think that much long. Live day by day.
TAVR is non invasion one hour procedure. Why not for 7000E?

First you are making an assumption that having a TAVR procedure is without risk. That is not true. Certain things are actually more common with TAVR than surgical valve placement. One is the risk of electrical conduction issues which may cause the need for a pacemaker. The death rate with open surgery in relatively healthy patients is probably less than 1% in the hands of competent surgeons. And who says TAVR is non invasive? You have a catheter in your groin that goes up to the heart and the valve is deployed where the native aortic valve is located. Calcium may be released and the tissue is compressed to support the valve which may lead to electrical conduction issues This is not non-invasive.

The longevity of tissue valves in younger patients is often significantly less than in older patients. So five to ten years is probably a good estimate of a TAVR valve lifetime. So sooner or later unless there is some major advance that is not yet apparent an open surgery will need to be done.

I think that in the US if a TAVR procedure was done on a 47 year old patient the physician might be facing malpractice issues especially if something went wrong. I would be surprised if most hospital protocols would allow this in a young patient unless there were some very unusual circumstances. I would be a bit skeptical of someone taking your money to do this procedure. And I would be skeptical of their competence. Buyer beware.

 

[kobaha21]

Hello, sir! I am from Romania, I had not one but two open heart surgeries in the span of 2 years!! I am still alive without complications. The first one was at 20 and second when I was 22 years old. First one consisted of a valvuloplasty which you guessed, it didn't last, the thing was that nobody wants a young student to take anticoagulants, to manage his INR and so and so. At the second intervention I got a mechanical valve and now for a year and half I have been taking anticoagulant treatment and everything is good. So based on my experience I advise you to undergo only an OHS where your valve will be replaced with a mechanical one. It was a shock for me to undergo a second OHS so soon, you have to take in consideration that might be the case for you too, I have a 42 years old friend who had the surgery done in the same time as mine, he is fine ticking and living and is going to have his second wedding soon, so life goes on. I see no reason for you to not have an OHS you are young, fit, active, you will recover quickly. Yes you will take a break from lifting and drinking beer and smoking, but you will go back to these activities in no time (hopefully you will quit smoking). It's a scary huge, major interventions which movies made it look as a death sentence but it's not that it's a surgery that helps you live longer.
Please do not hesitate to ask me any type of question!

Tnx.

 

[SatoriFound]

Off topic, but.... THE Denton Cooley did your heart valve surgery? Wow!

Hubby had his angiogram at Baylor in the Cooley building. We had to choose between Baylor and Methodist, and ultimately went with Methodist, just due to the experience of the angiogram. While the surgeon was awesome, the room he was put in afterwards and the post-surgical care nurses pushed my hubby towards Methodist. He didn't trust how it went after surgery. Although, we didn't consider Coselli due to the recent scandal where he was saying he was in the room attending the still training surgeon, but was in actuality in a different surgery. Even though, after he (and the other surgeons involved) were caught there was a low likelihood of it happening again, it made us uncomfortable. I wonder how often that happens in institutions? Where surgeons in training are left unattended. I am sure it is fine in most situations, the doctor obviously trusts them to perform the surgery competently, but if a situation occurred that was out of the norm it would be scary.

How come the valve had to be replaced? Is it because you were already replacing the ascending aorta?

 

[Habana58]

Hi. First, sorry on my English. Learned in elementary school. Have problem with grammar..

I am from Croatia. 46 years old male.We don't have any good forums about heart valves.



I have sistematic check for new job and they heard murmur in my heart for the first time in my life. Done 2 ultrasounds. Same results but first one with unclear aortic valve morphology? Second one was biscupspis valves? They sand me to TEE exam. Waiting for list. I don't have simptoms. Few months ago I benched 80 kg, and doing some bodybuilding. Hard training. I am fit. Few cigarettes weekly and few beers,maybe

Never been sick in my life.



My ultrasound results:

AVA 0,5 cm

Vmax 5,3 m/s

PPG 113 mmHg

LV ejection fraction 56%

Aorta is ok and aortic root is ok.



I walk every day 4,5 km...about 3 miles. I am ok. No short breathe, no pain, feel ok.

They say I have one year maybe if I do not change valves?
This is pict of my ultrasound? What is white accumulations in middle?

Any conclusions? Tnx

Hi, your english is perfect, dont forget it is not a perfect language, so tomato and tometo all the same for those born in the english islands of the uk ;

i guess they will start watching you, maybe tests every 6 months or 12; but when it starts to get "bad" you will feel it, out of breath, tired, or dizzy ( that was my experience ), i went to a town with lots of hills and i could barely walk 25 meters with out my girl friend pushing me;

this forum is a great place to learn about other people experiences, and personal opinions; you will have to talk to your cardiologist, and doctors and see what will be your options down the road; and come to terms with the fact that a "surgery" will happen some day in the future and after that is a new life, with new rules; but is not the same one you had 10 years ago;

All the best; and good luck, for me is always hard to place Croatia UNTIL i remember Yugoeslavia , that one i know very well,

 

[kobaha21]

Hi, your english is perfect, dont forget it is not a perfect language, so tomato and tometo all the same for those born in the english islands of the uk ;

i guess they will start watching you, maybe tests every 6 months or 12; but when it starts to get "bad" you will feel it, out of breath, tired, or dizzy ( that was my experience ), i went to a town with lots of hills and i could barely walk 25 meters with out my girl friend pushing me;

this forum is a great place to learn about other people experiences, and personal opinions; you will have to talk to your cardiologist, and doctors and see what will be your options down the road; and come to terms with the fact that a "surgery" will happen some day in the future and after that is a new life, with new rules; but is not the same one you had 10 years ago;

All the best; and good luck, for me is always hard to place Croatia UNTIL i remember Yugoeslavia , that one i know very well,

He he. Tnx. I learned in elementary school and then whatch 1000 USA crap movies. I am big lover of English humor(Only fools and horses Nr1!)

Two months ago I been in Hamburg with my wife wait her sister(she works there). Every day I walked 6,7 miles. Or 10km. Full of energy. Nothing. Healthy ass ox!!!! Smoked electric cigars, drink some beer(In Germany you must).
Came to Croatia 7.9. in one Adriatic coast town. I swim two days. It was cold(not to cold but....).
I back in my home town in Eastern Croatia. Firs sign was pain in right chest! Not left. For ten days. I think it's ok. Maybe I cold my lungs in swimming in not warm sea? Then I get a new job and sistematic check. Doctor heard murmur and then 2 ultrasounds with critic hard aortic stenosis. Now I have constant pain in left lungs where my heart is????
I have MSCT coronagraphy in a few days..

 

[kobaha21]

Hi, your english is perfect, dont forget it is not a perfect language, so tomato and tometo all the same for those born in the english islands of the uk ;

i guess they will start watching you, maybe tests every 6 months or 12; but when it starts to get "bad" you will feel it, out of breath, tired, or dizzy ( that was my experience ), i went to a town with lots of hills and i could barely walk 25 meters with out my girl friend pushing me;

this forum is a great place to learn about other people experiences, and personal opinions; you will have to talk to your cardiologist, and doctors and see what will be your options down the road; and come to terms with the fact that a "surgery" will happen some day in the future and after that is a new life, with new rules; but is not the same one you had 10 years ago;

All the best; and good luck, for me is always hard to place Croatia UNTIL i remember Yugoeslavia , that one i know very well,

Wisit her sister(sorry..keyboard of mobile)

I still walking 3,4 miles. Don't have difficulties breathing. All good. Blood pressure is constant 120/80. Heart beat 60.
Only pain in left side where is heart.

Croatia is famous for soccer world championships. And good food , wine and beautiful sunny Adriatic coast.

 

[pellicle]

still walking 3,4 miles. Don't have difficulties breathing. All good. Blood pressure is constant 120/80. Heart beat 60.
Only pain in left side where is heart.

everyone gets symptoms differently

if you are lucky you'll get the symptoms that make it clear you need the surgery before you commit harm to yourself.

https://www.valvereplacement.org/th...-having-a-replacement-done.889760/post-936515

you've come here (I assume) to ask actual people who have actually been through this and have actual experience. Not just the answers in this thread but that of many threads should suggest to you

1. this is serious, don't brush it off into denial
2. outcomes of each choice you make (including valve selection) will be with you for life (its not an appliance or a car that you can just buy another, its more indelible than a tattoo.
3. not all medical practitioners are there to help you; some are there to use you as a subject for their own publication cycle.

you may know me ...

IMO anyone who will perform a TAVR on you is practicing malpractice.

but if you don't know vitdoc you should read through his posts

I think that in the US if a TAVR procedure was done on a 47 year old patient the physician might be facing malpractice issues

Best Wishes

 

[vitdoc]

Off topic, but.... THE Denton Cooley did your heart valve surgery? Wow!

Hubby had his angiogram at Baylor in the Cooley building. We had to choose between Baylor and Methodist, and ultimately went with Methodist, just due to the experience of the angiogram. While the surgeon was awesome, the room he was put in afterwards and the post-surgical care nurses pushed my hubby towards Methodist. He didn't trust how it went after surgery. Although, we didn't consider Coselli due to the recent scandal where he was saying he was in the room attending the still training surgeon, but was in actuality in a different surgery. Even though, after he (and the other surgeons involved) were caught there was a low likelihood of it happening again, it made us uncomfortable. I wonder how often that happens in institutions? Where surgeons in training are left unattended. I am sure it is fine in most situations, the doctor obviously trusts them to perform the surgery competently, but if a situation occurred that was out of the norm it would be scary.

How come the valve had to be replaced? Is it because you were already replacing the ascending aorta?

When aortas are replaced the valve and aorta are usually replaced as one piece when a mechanical valve is involved. Not sure exactly why. Denton Cooley came through the room seemingly on roller skates prior to the surgery. Never saw him again. Post Op I stayed in a room probably used for foreign potentates. It was nice. 41 years ago, probably a bit different now.

 

[pellicle]

Not sure exactly why

As I understand it; being pre-attached to the graft it saves valuable time (reduce time on the pump is very important in what are already lengthy procedures) and you know its not going to develop paravalvular leak.

 

[SatoriFound]

When aortas are replaced the valve and aorta are usually replaced as one piece when a mechanical valve is involved. Not sure exactly why. Denton Cooley came through the room seemingly on roller skates prior to the surgery. Never saw him again. Post Op I stayed in a room probably used for foreign potentates. It was nice. 41 years ago, probably a bit different now.

My hubby got aortic hemi arch replacement. They did the valve and a graft. It was different pieces, but it wasn't the WHOLE aorta. One piece would probably shorten time on the bypass machine. Every minute you can knock off that is probably beneficial. According to hubby's notes he was on bypass 11 minutes, and cooling time was 39 minutes.

Roller skates, LOL. Busy man. I loved hubby's surgeon. He was so sweet. Not the typical surgeon at all. Very good bedside manner.

 

[pellicle]

They did the valve and a graft. It was different pieces, but it wasn't the WHOLE aorta.

just because its an opportunity to discuss this, the aorta is big and complex

now in my case my aneurysm went all the way into the arch (yep, that dissection woulda been short and sharp)

Now the arch is complex with some variations in anatomy; the more common variants

some less common ones ...

https://neuroangio.org/anatomy-and-variants/aortic-arch/

so depending on the location on the aorta of the surgery, some of or all of those have to be reattached to the graft ...

HTH

PS: just as a final point that descending aorta is what a good Samurai is aiming for when they perform Seppuku. Its a fast death where the person often freezes. The rapid depressurisation of the brain sets it into shock.