33yo with BAV and severe stenosis

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Nesphito

Member
Joined
Jan 29, 2024
Messages
19
Location
Utah
Hey everyone!

I’ve been lurking here for years, but I just found out I’m gonna need surgery soon. Pretty upset it wasn’t 5-10 years later, but what can you do?

I meet with my cardiologist next week. I’m kind of debating what surgery I want to go with. Not sure how soon they want me to get surgery.

Thinking Ross, Ozaki or Mechanical. Leaning mechanical, but afraid I won’t be able to weight lift. I wanted the Tria valve, but it’s still in clinical trials. Mechanical would be nice because insurance would cover most of it because I could stay in state. Although I’m worried my state doctors aren’t great compared to some of the big hospitals (I’m in Utah).

Anyway, I’m glad there’s a community where there’s people you can relate.
 
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Welcome Nesphito. Valve surgery has been around long enough that you can be assured all states have good, competent surgeons to handle simple valve replacements. My surgeon was still in "Residency", in Kentucky, when he did mine........and it has worked out very well:)........for over 56 years.

I envy you newer folks for the support that Forums like this can provide to help ease your minds. Read all you can to help you make choices that fit you and your lifestyle now.........and years down the road!
 
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Hi and welcome
Anyway, I’m glad there’s a community where there’s people you can relate.
I think all of us barely know anyone personally who has our condition, so places like this are our best bet on getting to rub shoulders.

Leaning mechanical, but afraid I won’t be able to weight lift.

strange, I wonder where you got that idea from? We have some high grade power lifters who have mech valves and are on warfarin.

If you can climb Mt Everest on warfarin then you can do pretty much anything

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
While doing your "due diligence" make sure you get to the bottom of what's "hopeful" and what's "myth". Oddly I notice a lot of "hopeful" on all the outlying special orders but only myth on what should be the meat and potatoes. Especially because you say:

  • Mechanical would be nice because insurance would cover most of it because I could stay in state.
  • Although I’m worried my state doctors aren’t great compared to some of the big hospitals (I’m in Utah).
that last point is one of the reasons I suggest against picking one of the special order dishes but not getting it done by the specialist chef in "that NY restaurant".

some readings (or listening's)





https://www.medscape.com/viewarticle/838221
Best Wishes
 
Hi Nesphito,

Ozaki could be the future of valve repair. The data in older people (65-75) looks very good. But then again most bio valves in older people look fantastic. Data on long-term Ozaki outcomes in your age group is still very scarce. Ozaki could last a long time or not very long at all. Ozaki is also likely surgeon dependent, it could be hard to find an experienced surgeon in your State.

The issue with Ross in your age group is the following. The outcomes of the surgery really depend on the surgeon. There are only 4-5 surgeons in the US which have done a lot of these. They may not operate in your state. But perhaps more importantly, even if you get a Ross superstar to do the surgery, the data show that you can get 20-25 years and in some cases more. But even 30 years in your case puts you only at 63. Then you will need to get a reoperation. Ross reoperations tend to be complex. Given how valve replacement technology is advancing, there is a risk that not many people will be around to do the reop by the time you need a reop. Not just that but you may need multiple reoperations. This is what happened to Arnold Schwarzenegger, who is on his fourth OHS now, after a ross procedure in 1997. Presumably he has the financial resources to always have the best possible care every single time, but it is still hard to have so many reops (partially because your valves may fail at different times - This is what happened to Arnold).

I was your age when I got a tissue valve. I regret that since it only lasted 8 years. I now have a mechanical valve after a second OHS. Yes it ticks and I can hear it. Yes I have to take warfarin every day. But this is a minor inconvenience compared to having another OHS, which in both my cases took quite some time to get back to normal. I hope that I will not need another OHS. This is just hope, but with a mechanical valve the odds are 80-90%. Those are good odds. With any other solutions, the odds are 80-90% that you will need to get another OHS at some point.

Good luck with your decision.
 
The issue with Ross in your age group is the following.
ahh, I see the "Anti Ross Crowd" coming out ... its so counter work. We need to only re-enforce what people want ... we must assume that what they initially decided must be the best for them and encourage them to remain there.

Anything else is not woke.

From Chris Williamson
1706646487645.png


if we don't just give them short term emotional comfort and then move on then we aren't really caring for them in the WokeAcceptedWay.

Myself I subscribe to the Weirding Way
1706646587904.png



Knowledge will set you free, insight and wisdom certainly help.

1706646703081.png
 
L
ahh, I see the "Anti Ross Crowd" coming out ... its so counter work. We need to only re-enforce what people want ... we must assume that what they initially decided must be the best for them and encourage them to remain there.

Anything else is not woke.

From Chris Williamson
View attachment 889851

if we don't just give them short term emotional comfort and then move on then we aren't really caring for them in the WokeAcceptedWay.

Myself I subscribe to the Weirding Way
View attachment 889852


Knowledge will set you free, insight and wisdom certainly help.

View attachment 889853
The Ross procedure certainly sounded like an interesting choice to me, if I had the option of it.
 
@Spookygal I also wanted to go Ross the first time I was up for OHS. Then a world famous Ross surgeon told me that my aortic root wasnt suitable for the surgery. Others wanted to do it, but I decided to go with his approach.

Since then there have been some papers published on what happens after Ross re-operations.

https://www.annalscts.com/article/view/16843/htmlhttps://www.annalsthoracicsurgery.org/article/S0003-4975(22)00729-9/fulltext
The life expectancy after a Ross reop isnt great given the average age of the patient.

I can see why someone would choose the Ross and it should always be up to the person what operation she wants. However, it is good to be aware of all the possible risks.

Sometimes doctors like to remind us of known risks, such as mechanical valve risks. But if you look at the studies above, prognosis post Ross Procedure reop isnt great. This is something that anyone considering the procedure should be aware of the risks post reop, which will be inevitable for most patients.
 
The Ross procedure certainly sounded like an interesting choice to me, if I had the option of it.
its an interesting one for sure. Here's a fundamental view I have of all solutions: simple is better. So the best design is the one which has the least to go wrong.

My car is a 1989 Mitsubishi (so yes, 35 years old) with nearly 500,000km on the clock. Still gives me the same mileage as it did in 2003 when I bought it (used). I do not believe there will be one modern made car on the road when thirty years have elapsed.

My car is easy to fix and yet seldom requires anything more than tyres, oils, fuel and filter.

In contrast my friends car has been back under warranty for reversing camera problems, gear selection problems (its electronic automatic), windscreen wiper automation problems and cruise control problems. There is no way that car will be running after warranty runs out.

1706650330825.png


If you understand survivor-bias it will help you to understand the statistics and the problems one finds with a solution which offers the possibility of no long term ACT but trades that off with causing you to move from one diseased valve to having two (or doubling your problems).

An anecdote from here: Raul writes of his ross journey. If you get endocarditis in the future you'll have a ruined aortic valve (and probably root), you'll have a ruined pulmonary valve (which had no disease before you started the path of The Ross) and a ton of extra scar tissue thrown in for good measure. You'll have a certainty of a third operation at the very least.

Endocarditis leading to AVR - my story

To me everything is a cost benefit analysis. And speaking of analysis, this is an exampe of how I do critical analysis

https://docs.google.com/document/d/1p3e74bFolm-Fj-GuFb0V9sJ8M9xDTHKsVNp6xbVojzM/edit?usp=drive_link
it becomes clear when reading my comments (in red) that the author of that Comment Article is perhaps best regarded as this:
1706650976933.png



Best Wishes
 
Hi and welcome

I think all of us barely know anyone personally who has our condition, so places like this are our best bet on getting to rub shoulders.



strange, I wonder where you got that idea from? We have some high grade power lifters who have mech valves and are on warfarin.

If you can climb Mt Everest on warfarin then you can do pretty much anything

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
While doing your "due diligence" make sure you get to the bottom of what's "hopeful" and what's "myth". Oddly I notice a lot of "hopeful" on all the outlying special orders but only myth on what should be the meat and potatoes. Especially because you say:

  • Mechanical would be nice because insurance would cover most of it because I could stay in state.
  • Although I’m worried my state doctors aren’t great compared to some of the big hospitals (I’m in Utah).
that last point is one of the reasons I suggest against picking one of the special order dishes but not getting it done by the specialist chef in "that NY restaurant".

some readings (or listening's)





https://www.medscape.com/viewarticle/838221
Best Wishes

Thank you for the great response! I think I’ll probably go with a mechanical valve. I saw these videos in another thread you posted in and they’ve been very helpful in helping me make my decision
 
You can weight lift on warfarin...as long as you don't drop them on your head :)
I might be mixing up stats. Because my doctor wanted me to be pretty conservative with weightlifting. Is that because I already have stenosis? Where as with a valve you wouldn’t have that issue?
 
I might be mixing up stats. Because my doctor wanted me to be pretty conservative with weightlifting. Is that because I already have stenosis? Where as with a valve you wouldn’t have that issue?
That could be it, your native valve when replaced would not be stenotic.

I don't weight lift, but after having my aortic valve replaced due to it being bicuspid and stenotic, I was told in cardiac rehab there were no restrictions due to the mechanical valve. There were restrictions until the sternum healed. The rehab nurse told me to be wary of one thing...holding my breath during any strong exertion (e.g. weight lifting, some isometric exercises.) This is due to the fact that having a BAV means you have a statistically higher chance of having an aneurism. Holding one's breath when exerting oneself is not good for an aneurism...if you ever get one.
 
That could be it, your native valve when replaced would not be stenotic.

I don't weight lift, but after having my aortic valve replaced due to it being bicuspid and stenotic, I was told in cardiac rehab there were no restrictions due to the mechanical valve. There were restrictions until the sternum healed. The rehab nurse told me to be wary of one thing...holding my breath during any strong exertion (e.g. weight lifting, some isometric exercises.) This is due to the fact that having a BAV means you have a statistically higher chance of having an aneurism. Holding one's breath when exerting oneself is not good for an aneurism...if you ever get one.

My docs basically told me the same thing.
 
Here’s a small update: Met with the surgeon today. He suggest getting surgery in the next few weeks. I was going to talk with multiple surgeons, but because of my slight symptoms I feel the best option is to get the surgery asap.

My doctor has pretty good numbers, he did 200 heart surgeries last year and does an average of 80-100 a year. He also only has a 1-2% of patients have to go back into surgery.

He also wants me to do a CT scan and also said I should get any dental work done before surgery as well. So I’m gonna get a crown done next week.
 
He also wants me to do a CT scan and also said I should get any dental work done before surgery as well. So I’m gonna get a crown done next week.
this bit seems to be pretty standard pre-op work, so that's good to hear.

I'm on the side of get it done earlier than later (y)

Best Wishes
 
Here’s a small update: Met with the surgeon today. He suggest getting surgery in the next few weeks. I was going to talk with multiple surgeons, but because of my slight symptoms I feel the best option is to get the surgery asap.

My doctor has pretty good numbers, he did 200 heart surgeries last year and does an average of 80-100 a year. He also only has a 1-2% of patients have to go back into surgery.

He also wants me to do a CT scan and also said I should get any dental work done before surgery as well. So I’m gonna get a crown done next week.
Thanks for the update.

He also wants me to do a CT scan and also said I should get any dental work done before surgery as well. So I’m gonna get a crown done next week.
That is a good idea. It is good to avoid dental cleanings and dental work for about 6 months after surgery, so getting things taken care of before hand is wise.
 
Here’s a small update: Met with the surgeon today. He suggest getting surgery in the next few weeks. I was going to talk with multiple surgeons, but because of my slight symptoms I feel the best option is to get the surgery asap.

My doctor has pretty good numbers, he did 200 heart surgeries last year and does an average of 80-100 a year. He also only has a 1-2% of patients have to go back into surgery.

He also wants me to do a CT scan and also said I should get any dental work done before surgery as well. So I’m gonna get a crown done next week.
What are your slight symptoms ?
 
What are your slight symptoms ?
I actually thought I didn’t have symptoms and that’s what I told my doctor at first. But I get more tired walking up stairs than usual. I wouldn’t have noticed if I didn’t take the hospital stairs. I thought at the time it was because I was slacking on cardio. I also have a pinpoint dull chest pain when doing more intense cardio, but oddly don’t get winded as easily doing that as walking up stairs. I think I wouldn’t have noticed unless they were more severe.
 

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