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Jack Julles Jackson

Well-known member
Joined
Aug 19, 2023
Messages
62
Location
Brazil
Hi, Im a psychologist and I live in Brazil.
I have a bicuspid valve, and I know it since 16y old, but now, with 34 I got a stenosys.

Im also diabetic, controlled now, and high blood pression - that no so controlled.

Im terrifyied and very anxious.
My surgeon says that a biological valve is better for me, an he says that there is long duration valves that can made 20+ years, but I havent find no mention of this anywhere in internet.
Is it true?

Im glad for this site to exists! Thank you all.
 
Hi Jack and welcome to this forum. Are you 34 years old? If you are, 34 is very young for a "tissue" valve. Why does your surgeon suggest the tissue valve? If you are just now beginning the journey toward heart surgery I suggest you read the many posts on this forum for the pros and cons of tissue valves for young patients.

I think your surgeon is referring to Edwards Inspirus valve. That valve is marketed to last 20 years plus. It is very new and unproven to last that long. How many more surgeries do you want to have in the future? I suggest you look very hard at a mechanical valve that could be a "one and done" surgery.

Either way you choose, you will find great info on this forum.......and we don't charge for an "office visit"
 
I think your surgeon is referring to Edwards Inspirus valve.
Thanks for tell me the name. If it even existis thats good news. Haha
That valve is marketed to last 20 years plus. It is very new and unproven to last that long. How many more surgeries do you want to have in the future? I suggest you look very hard at a mechanical valve that could be a "one and done" surgery.
Brazil have free healthcare, but it is a mess. Now I have a good healthcare plan, paid, obvious, but I dont know the future.
Either way you choose, you will find great info on this forum.......and we don't charge for an "office visit"
This forum is a blessing. Im very happy to find it. Thank you so much.
 
Hi Jack and welcome

Im terrifyied and very anxious.
you shouldn't be ... its one of the most successful surgical procedures in the surgical repertoire

apply some of your psychology on yourself. Be aware of your feelings, but don't let them dominate you.

My surgeon says that a biological valve is better for me, an he says that there is long duration valves that can made 20+ years, but I havent find no mention of this anywhere in internet.
because there is no such valve. There are members here who have had (I think one) nearly that duration but there are some points.
  1. age matters, the more old you are the longer a bioprosthetic will last
  2. activity (being more active shortens the life in years
  3. other biological factors (such as your LP(a) and other enzymatic stuff)
So a mechanical may be the most durable choice, but its not 100% certain that some other issue will trigger a redo operation (such as an aneurysm which can emerge later because BAV is highly correlated with later aneurysm).

If you haven't already seen it I suggest you start on this blog post of mine (yes, I wrote it in 2014 to save me saying the same things many times over):

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
please to look out for the URL in there to Dr Schaff's presentation.

Then when considering a mechanical this is the basics:

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
that last one is intended also as a "go back to it" reference as much as a presentation on why being on AntiCoagulation Therapy is not the end of the world. As you're already testing for blood sugar then one more bleed a week won't be much to do. Oh, and don't use the diabetic lance for the Coaguchek, but you can take your blood sample from the strip after its determined and reportd your INR.

Best Wishes

PS: in case you miss it


perhaps a good place to start anyway ;-)
 
Hi Jack and welcome
Thanks, man.
you shouldn't be ... its one of the most successful surgical procedures in the surgical repertoire

apply some of your psychology on yourself. Be aware of your feelings, but don't let them dominate you.
Im doin psychotherapy with another psychologist. That's the wisest option than solve that myself. I got here to find support on information. That helps to decrease anxiety
because there is no such valve. There are members here who have had (I think one) nearly that duration but there are some points.
  1. age matters, the more old you are the longer a bioprosthetic will last
  2. activity (being more active shortens the life in years
  3. other biological factors (such as your LP(a) and other enzymatic stuff)
So a mechanical may be the most durable choice, but its not 100% certain that some other issue will trigger a redo operation (such as an aneurysm which can emerge later because BAV is highly correlated with later aneurysm).
I need to ask the doctor directly, but some friend here speculated that the valve would be a Resilia one.
If you haven't already seen it I suggest you start on this blog post of mine (yes, I wrote it in 2014 to save me saying the same things many times over):


https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
I already saw your blog, I need more time to read it carefully, but Im already your follower here and saved your post indications. Thanks for your work on this! Helps a lot!
 
follower here and saved your post indications
well I guess that's good, but don't take my word as being better than others words and also be aware I post a lot ... so you may not want to read all that ;-)

Some things I say for anxiety are this:

1692502073618.png


remember that you can not control things outside of your own personal choice of how to respond or react.

http://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
and to recall the Stoic lines of thought (such as Marcus Aurelius)
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1692502210457.png

1692502221351.png

1692502232547.png

1692502245394.png


Best Wishes
 
Brazil have free healthcare, but it is a mess. Now I have a good healthcare plan, paid, obvious, but I dont know the future.
I wasn't talking about the medical cost of future surgeries. You are 34 now.....+20years you will be 54 for your second surgery.......and +20 years you will be 74 for your third surgery. Multiple surgeries take a bigger and bigger toll on the body as you grow older. You do expect to live a long and normal life after this upcoming surgery.....right?
 
You are 34 now.....+20years you will be 54 for your second surgery.......and +20 years you will be 74 for your third surgery.
or (also being a bit less optimistic myself)
  • 34 and valve lasts 15 years (and you're worn down a bit because valve was giving symptoms
  • 49 at sugery 2 it becomes a tougher choice but you pick tissue again and it lasts 20
  • now 69 and perhaps already on warfarin (or similar) because of afib or whatever and chosing what to do for #3
So to @Jack Julles Jackson you need to consider things carefully because unlike most people (who are over 60 when they have their first) you have a different equation.

I was 10, then 28 then 48.
 
I wasn't talking about the medical cost of future surgeries. You are 34 now.....+20years you will be 54 for your second surgery.......and +20 years you will be 74 for your third surgery. Multiple surgeries take a bigger and bigger toll on the body as you grow older. You do expect to live a long and normal life after this upcoming surgery.....right?
And I have diabetes. Its controlled now and I don't need insulin today, but is question to think for both depending on warfarin or thinking about new surgeries
 
or (also being a bit less optimistic myself)
  • 34 and valve lasts 15 years (and you're worn down a bit because valve was giving symptoms
  • 49 at sugery 2 it becomes a tougher choice but you pick tissue again and it lasts 20
  • now 69 and perhaps already on warfarin (or similar) because of afib or whatever and chosing what to do for #3
So to @Jack Julles Jackson you need to consider things carefully because unlike most people (who are over 60 when they have their first) you have a different equation.

I was 10, then 28 then 48.
You are a hero
 
Welcome to the forum Jack!

My surgeon says that a biological valve is better for me, an he says that there is long duration valves that can made 20+ years, but I havent find no mention of this anywhere in internet.
When I was 52 and approaching my time for surgery, I had consults with two of the top heart valve surgeons in the US. They both told me the same thing. At the young age of 52, I should expect a tissue valve to last me about 10 years. The younger a person is the quicker that they go through tissue valves. At one point this was believed to be due to young people being more active. There is now a shift in thinking that it might also have a lot to do with the fact that a younger person has a stronger immune response and attacks the foreign tissue more aggressively.

The valve that your surgeon is probably referring to is the Inspiris Resilia. There is hope that this valve will do a little better than previous generations, at delaying SVD (structural valve degeneration), which will eventually happen with a tissue valve. It's unfortunate that your surgeon is giving you hope that this valve will last you 20+ years. To say that this is optimistic, for a person who is 36, is beyond optimistic. Is it possible? Sure. Then again, I might win the lottery tomorrow. It's possible. As mentioned earlier, I spoke with two top surgeons in the US, specifically about this valve and both said expect 10 years. One of the surgeons was even involved in the design of the Inspiris Resilia, so he is really hoping this valve will do well. But, when he gives expectations, he follows the evidence.

Every guideline in every country in the world recommends that a person at age 36 should get a mechanical valve. These valves are designed to last longer than we are. This was the choice I made at the young age of 53. Yes, 53 is young in the heart valve world. And if 53 is young, at age 36 you are very very young in the valve world. If you take the time to read many of the threads here on the forum, and I hope you do, you will find the stories of several members who received a tissue valve at a young age only to regret it when they had to get operation #2 or operation #3. You will also find a couple of members who defied the odds and have not yet had to get their reoperations, even though they received their tissue valvesat a young age. Some people do win the lottery. The question is whether the casino is a good choice to try to grow one's financial well being. .

Having said all that, if you do follow your surgeon's lead, which is totally understandable, I would suggest the Inspriris Resilia is a very good choice. I am almost certain this is the valve he is referring to. Although I chose mechanical, if I had gone tissue, this is the valve that I would have gone with. But, if you get other surgical consultations, you will probably find that your surgeon is not in line with other surgeons and I expect, given your young age of 36, most will tell you to go with a mechanical valve, which follows the guidelines for someone your age. I do hope that your medical coverage in Brazil allows you to get second opinions. I would suggest getting at least one more opinion and even better if you get 2+ more opinions.

Im also diabetic, controlled now, and high blood pression - that no so controlled.

It is super important to control both of these. Having uncontrolled high blood pressure is correlated with faster SVD, so I do hope that you get this under control. And, I hope that you are making serious lifestyle changes to control your diabetes, with diet and exercise. Diabetes was once thought to be irreversible, but studies have shown that with lifestyle changes it can be reversed. We usually prefer to say that it can be put into remission, because if you drop the lifestyle changes it will come back. When you say it is controlled, I'm not sure if you are controlling it with medications or lifestyle changes, but let me know if you want more info on lifestyle changes that can be made to control diabetes. Even if you're controlling it with medications, I would strongly encourage lifestyle changes to control it in addition to the meds. You are young to have diabetes. As with almost all medical conditions, diabetes makes for drastically worse outcomes if it is not controlled, so this is really important.

As is often said, there is no perfect valve. With one valve, mechanical, you will be on anti-coagulation for a lifetime. With the other valve, you will have future procedures needed. At 36, this would equate to several future procedures. But, you are the one who has the live with the consequences of your choice- not your surgeon and not us on the forum. So, the choice is yours and yours alone to make. We are here to support you regardless of which valve that you choose.
 
Welcome to the forum Jack!
Thanks for your attention.
I surelly will need more opinions on that. I'll talk to another docotors and keep reading people here.
It is super important to control both of these. Having uncontrolled high blood pressure is correlated with faster SVD, so I do hope that you get this under control.
Lots of stress and no exercises make blood pressure high. Im looking of that.
You are young to have diabetes. As with almost all medical conditions, diabetes makes for drastically worse outcomes if it is not controlled, so this is really important.
Im doing it with medications and diet. But now, because the stenosis i can't do much exercises. But its controlled. Today by morning my glycolysis was less then 90. I measure it almost everyday. Its an genetic condition, the doctors says.
As is often said, there is no perfect valve. With one valve, mechanical, you will be on anti-coagulation for a lifetime. With the other valve, you will have future procedures needed. At 36, this would equate to several future procedures. But, you are the one who has the live with the consequences of your choice- not your surgeon and not us on the forum. So, the choice is yours and yours alone to make. We are here to support you regardless of which valve that you choose.
 
As is often said, there is no perfect valve. With one valve, mechanical, you will be on anti-coagulation for a lifetime. With the other valve, you will have future procedures needed
and at such a young age a near certainty of ACT eventually and perhaps a pacemaker in his future too (after surgery 2 or 3).
 
Welcome, @Jack Julles Jackson. Lots of good advice already, but I wanted to mention blood pressure. If your current valve has stenosis you will very likely find that it is causing, or at least contributing to, the high blood pressure. The heart is having to work harder to pump the blood through the valve. After my valve was replaced in 2014 my blood pressure dropped a lot, so much so that it was a bit low!

If you have shortness of breath, I would try and get the valve operation done sooner rather than later: whilst the heart is working hard to overcome the stenosis, it builds up the muscle wall and leads to a degree of heart failure that makes quality of life not as good as it should be.
 
Welcome, @Jack Julles Jackson. Lots of good advice already, but I wanted to mention blood pressure. If your current valve has stenosis you will very likely find that it is causing, or at least contributing to, the high blood pressure. The heart is having to work harder to pump the blood through the valve. After my valve was replaced in 2014 my blood pressure dropped a lot, so much so that it was a bit low!

If you have shortness of breath, I would try and get the valve operation done sooner rather than later: whilst the heart is working hard to overcome the stenosis, it builds up the muscle wall and leads to a degree of heart failure that makes quality of life not as good as it should be.
Thanks for the advice. I was having a normal life until one month ago, when I passed out while runing to catch a travel buss. I really forced out my heart, running and carrying a bag... And, in december I also passed out while running for sport. I did not unnable run 300m. Only in the second time I thinked to run to back the cardiologist and see my bicuspid valve.

You know, last time I was in the doctor, before the pandemic he sayd some people could live its intire life with a bicuspid aortic valve with out have any symtom. I was more worry with the diabets than with the heart. Lots of stress, drinking too much on the weekends has it price.

My cardiologist and the cirgeon I saw, they both say that was a genetic issue. My cardiologist think my high blood pressure is more stress then a real condition, but I do two medications for it. Sometimes, even with medication, It gots high.

Besides drinking on weekend and not doin regular execises, I think im good health. My diabetes is strongly controlled, My blood exames are pritty great too. Blood fat and this stuff, all great.

I had some smoking, less than 5 cigarrets on week. And that quantity is just one year ago, before that I did not even do that much. I dont know if has some differece, but were those natural cigarrets wrapped with straw. I said cigarrts, not cigarrets portifolio, but now Im completing one month without them. And im not drinking too.

Pandemic was hard for me, they got me with drinking and cigarrets.

I think that is just genetic and bad luck. Is that doctors sayid. They did not ordered me stop do nothing, only hard exercesices. I stop drinking and smoking by myself, but I think thats obvious and the doctors dont need to "order" such a thing.
 
Can’t add much to what has already been said. Just reading your intro. Welcome to the forum and best wishes as you move through this journey. Many of us have been where you are, still others are exactly where you are. Ask as many questions as you want.

My own story is an aortic valve replacement in 1990 when I was 17. An ascending aortic aneurysm repair in 2009 when I was 36. I’ve been on warfarin since 1990. No regrets with mechanical. Two surgeries is enough for me.
 
Thanks for the advice. I was having a normal life until one month ago, when I passed out while runing to catch a travel buss. I really forced out my heart, running and carrying a bag... And, in december I also passed out while running for sport. I did not unnable run 300m. Only in the second time I thinked to run to back the cardiologist and see my bicuspid valve.
Hi Jack.

Passing out is a severe symptom of having AS. This is information which you did not mention in your original post and it is significant. Once one gets to the point where they have aortic stenosis and they are passing out, it is time for surgery and not delay. Had you gone in to get things checked out when this first happened to you last December, your cardiologist likely would have sent you for surgery right away, because the mortality rate once a person has severe AS and symptoms is very high, especially if the symptom is fainting, also known as syncope. The survival curve literally drops off a cliff once the patient gets to this point and does not get surgery. The good news, so far you have been one of the lucky ones and very glad that you are still with us. Please see graph below and note the average survival once a person has severe AS with syncope.



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It is not just the risk of dying, if you wait too long after the onset of serious symptoms, your heart may not fully remodel, which could lead to serious complications as you age, if not immediately. Hopefully at this point you understand that when you first fainted 8 months ago that you should have taken it seriously and not waited for another fainting episode. Luckily, you are young. The heart of a person who is young tends to do very well at remodeling after surgery and going back to mostly normal. So, this time you may get a free pass. But, please take a mental note of it and have your echo follow up appointments after surgery to not wait so long next time. In that your surgeon is wanting to give you a tissue valve, if you do go that route, you will have future procedures, maybe in just a few years. Going forward, you want to be like clockwork with those echos and if anything feels off in between echos, get seen right away. You are fortunate that you are not a statistic reflected in the above graph. I would not tempt fate again.

Also, in my post above I suggested that you get a second opinion. Now that you have made us aware that you have had multiple fainting episodes, I believe this should be taken into consideration. If you can get a second opinion this week or next, great. But, if you need to wait 2 or 3 months for a second opinion, in my view it is more important to move forward with your surgery than to wait that long. Also, it is not the time to spend months deciding on which valve to get. At this point, make your decision and don't look back or second guess your choice, but don't delay.

I don't mean to scare you with the above stats. As long as you don't delay you should do fine, especially given your age. Waiting 10 months after syncope to get surgery is not a good plan for anyone with severe AS, but you get the "I'm young so I got away with it" pass this time around, for which we are all very glad. Just be aware that you have a very serious condition, known as valve disease and will need to take any symptoms very seriously going forward after surgery. Yes, it is a very serious condition, but the good news is that it has a highly successful solution-modern valve surgery. But, it is just really important to understand that getting a good outcome from this highly successful surgery is very dependent on getting surgery on time and not waiting too long.

Good luck in your upcoming procedure and please keep us posted as to your valve choice and recovery. We all look forward to seeing you on the other side.
 
Can’t add much to what has already been said. Just reading your intro. Welcome to the forum and best wishes as you move through this journey. Many of us have been where you are, still others are exactly where you are. Ask as many questions as you want.

My own story is an aortic valve replacement in 1990 when I was 17. An ascending aortic aneurysm repair in 2009 when I was 36. I’ve been on warfarin since 1990. No regrets with mechanical. Two surgeries is enough for me.
Thanks for your words.
 
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