Young Bentall Patient

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tsunami8688

New member
Joined
Nov 7, 2021
Messages
3
Hey all, I had my Bentall procedure done approximately 6 months ago (26/male). I had a "gigantic" aneurysm (11 cm) in my ascending aorta that I had no clue was in my body until the day before my surgery. 2 days before my procedure my chest hurt very badly when I took deep breaths and it was impossible to sleep that night from the pain. The next morning I went to an urgent care doc who took an X-Ray of my chest, discovered that my heart was significantly enlarged, and sent me to the hospital. After an echo cardiogram I received the news of the aneurysm and that I would be going into surgery 16 hours later. I received a tissue valve because it was the one my surgeon recommended and felt most comfortable with doing. I'm still on 4 prescriptions but hope to have those lowered soon. Glad that I found this forum because it is still very hard for me to mentally cope with what happened, but i think I will get some comfort from reading about others experiences.

Up until this point in my life I was very active, usually going to the gym 6 days a week. Just wondering if others have transitioned back to an active lifestyle post-surgery, and what that looks like for you? I used to lift weights quite heavily, but I am thinking that might not be so wise anymore.
 
Last edited:

Wiles Darkwinter

Active member
Joined
Jan 24, 2021
Messages
35
Hey man, I was in a similar boat to you re: concerns about training and weight lifting (30 years old) Theres a few threads on here about weight lifting and training post surgery. I didn’t have a bentall, I had a valve sparing aortic root replacement, I’m 8 months post surgery and have no restrictions on physical activity (and I’ve asked about 50 times). Surgeon more or less said get on with it and stop whinging :LOL::unsure:
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
Hi
well it will take some time for your heart to remodel given that you had significant enlargement.
You should over time be able to get it back into the right form, it is after all a muscle, but it has its opposer groups right in the same bundle.
Work with your team and take steps as they are advised and be patient.
I say you'll be fine in the medium term.

At your age another surgery is a certainty, and while I'm a bit surprised they didn't pick a mechanical, the issue there is that the surgeon has to be 100% certain that you'll properly comply with your Anti Coagulation Therapy (ACT) ... properly followed that's as close to a certainty for a good long event free life as you can get. Improperly followed and its a certainty for bad things to happen to you (like a stroke).

You now have time to see where that goes, learn about the options and prepare for what you'll do next.

There is no rush, just let life happen as it happens, because with a tissue prosthetic its out of your hands.

But don't be put off, I've had 3 OHS, and at 57 I'm still doing fun things.
 
Last edited:

tsunami8688

New member
Joined
Nov 7, 2021
Messages
3
Hi
well it will take some time for your heart to remodel given that you had significant enlargement.
You should over time be able to get it back into the right form, it is after all a muscle, but it has its opposer groups right in the same bundle.
Work with your team and take steps as they are advised and be patient.
I say you'll be fine in the medium term.

At your age another surgery is a certainty, and while I'm a bit surprised they didn't pick a mechanical, the issue there is that the surgeon has to be 100% certain that you'll properly comply with your Anti Coagulation Therapy (ACT) ... properly followed that's as close to a certainty for a good long event free life as you can get. Improperly followed and its a certainty for bad things to happen to you (like a stroke).

You now have time to see where that goes, learn about the options and prepare for what you'll do next.

There is no rush, just let life happen as it happens, because with a tissue prosthetic its out of your hands.

But don't be put off, I've had 3 OHS, and at 57 I'm still doing fun things.
The first surgeon I met (Dr. Rajagopal) recommended and was going to put in the mechanical valve. However there was no room the next day at any hospital he had admitting privileges at. I needed the surgery immediately so I took the first open room at the any heart hospital in the area (Houston, TX). The surgeon there (Dr. Chaugle) recommended the tissue valve and he seemed more comfortable doing that so I told him to go ahead. They told me I would likely need a repair 10-15 years in the future but it would likely be minimally invasive as opposed to OHS. But yes I am fully aware I will likely need another OHS at some point in the future.
 

tsunami8688

New member
Joined
Nov 7, 2021
Messages
3
Whoa 11cm, thats amazing, glad you won the life lotto!
Yeah the Dr.'s were in complete disbelief because at that time I was in really great shape, even for my age. I looked totally normal/healthy on the outside. We are thinking it is due to an un-diagnosed genetic condition (Marfans).
 

pellicle

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Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
Hi

They told me I would likely need a repair 10-15 years in the future but it would likely be minimally invasive as opposed to OHS.
well as Yoda says
1636401340265.png


myself I regard it as more like the promise of Fusion Energy, always 20 years away (since the 1960's).

I don't see this as a problem because of the fact that you now have some years to learn and understand, as I said, there is no rush.

My own situation can serve as a good example of how your situation is actually better than mine was (and I'm pretty happy with my own outcomes).

I had my bicuspid valve discovered at about 5 and operated on at about 10 years old. This was chosen to be a repair (and yes it was a standard Open Heart Surgery as there were no trans catheter anythings back then. I was one of the first in Australia to have what we call now call angiograms, but they were then crude by modern standards. A repair was chosen because being young a steel ring with a valve on it (you really should familiarise yourself with the engineering of this, I have little doubt it formed the basis of my education in biology and engineering) into an organ (my heart) that was still growing.

My next surgery was always discussed from the start and my surgeon was always looking towards the (then actual, frequent and large) developments in technology while balancing actual health risks. I did well on the repair into my 20's but by mid 20's it was starting to calcify and stop working.

At 28 (while I was at University doing my second degree) the time came and we replaced the clagged up one of my own with a cryo-preserved human valve of the right type and size. Recovery went well and my question was always about "when is #3"

The answer was always "we don't know" (which was the truth, but not terribly helpful). I had long long ago since given up worrying about any of this (perhaps I was to young to have ever worried about it. On a side note I had developed in my mid teens an interest in Ancient Greece and Rome. From that I discovered the philosophy of the times, Stoicism. This is a quote from a Roman Emperor Marcus Aurelius (no, not the one in Gladiator, the real one ;-)

1636402146026.png


I try my best to live by that.

Anyway my #2 valve (being a live tissue valve) lasted for some time, but (being live tissue that is explanted and replanted) suffers some handling issues and at around the 20 year mark started to show me signs of it losing its capacity.

I had (for various life reasons) stopped going to follow-ups (reasons such as living in different places around the world) and as we (my wife and I) were going back to Australia I submitted myself to get an examination.

This is when they discovered my aneurysm, which was a tiddler in comparison to your beauty. It was however enough to get everyone concerned (5.6cm) and while the valve was still functioning and my symptoms were barely evident I had an operation to replace that whole thing with what you have now, a Bentall.

Now at this time my surgeon (an understudy of my first, as you can imagine all of this spans 40 years) told me that at #3 I faced an important decision. The complexity of another redo would make a 4th surgery one of the most complex surgeries possible and (his words) "Surgeons will not be lining up to do it" (because nobody wants deaths on their list).

I didn't hesitate, I went mechanical because I already knew that a bileaflet pyrolytic valve would last billions of actuations, well into my late 90's (which I don't anticipate getting to) and beyond. The penalty was of course that I had to take warfarin. I instantly assumed (I'm originally a biochemist) that "I can manage that" and in my life up to that point I have managed every obstacle (of course with the help of others). I did Manage That and this is my blog post on that. Its lengthy and detailed and you really don't need to know all that now, but what you can take from that is this:
  • 90% of what you hear about managing Anti Coagulation Therapy is (at best) bullshit or (being nice) highly slanted in basis
  • there are cost effective personal tools that you can use to self manage (discussed and demonstrated in that post)
  • you are not chained to anything
  • managing INR is much easier than what diabetics must do to manage their blood sugar levels
I visit a cardiologist now (a very nice fellow) about every 2 or so years, and this is a change that's occured in the time between surgery #2 and surgery #3, we only saw surgeons (who are actually the ultimate authority on surgery). We mostly just chat about things because all my numbers are perfectly in line with the age group I'm in of "normal no heart problems at all" people.

I would expect the same for you.

I will say that you've been told some little "porkie pies" about the future of a "repair" which are not founded in the present and not likely, but it doesn't matter.

It doesn't matter because you now have the outfit (well except for the valve itself) for reducing the chances of ever needing another surgery : you have the aneurysm dealt with, for that is what drove my (like your) surgery. Now you will more than likely just face one more surgery to stitch on a new (you should consider mechanical) valve when that tissue valve enters (inevitably) SVD.

Ultimately at your age having your first surgery you are definitely more than one up on me, and having a second (which will probably time in less than 15 years) will give you plenty of time to understand the issues, understand the choices and go in informed. It will also give you time to adjust to a new understanding of life and make you more likely to be a good candidate for 100% compliance with your ACT and thus an excellent chance of a "normal life" (god help me if I ever have one of those, I'd fall asleep at the fhukken wheel).

Anyway, reach out if you wish, and we can talk. I'm in Australia (as my posting data shows) but we can do voice or something and have a laugh about the whole thing.

Bottom line = "you are doing well, you can find your own limits and set your own goals and limits". You can see that I live out in the country now (lived in the big cities enough) and indeed I am a very cautious person on my pensioner mobility scooter



well behaved too ;-)
Best Wishes
 
Last edited:

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,294
Hi Tsunami
and welcome to the forum. Welcome also to the Bentall club! I had a Bentall 7 months ago, although I opted for a mechanical valve, in order to have the best chance to avoid future surgeries.

Just wondering if others have transitioned back to an active lifestyle post-surgery, and what that looks like for you? I used to lift weights quite heavily, but I am thinking that might not be so wise anymore.

Yes, you absolutely should be able to transition to your former active lifestyle. Like you, I was very active before my surgery, hitting the gym 5-6 days per week, lifting weights, doing heavy cardio and participating in martial arts. At the 4-month point following my surgery, I was given the green light to return to all former activities, with the exception of some of the combat sports I participated in which involved striking, as I am on anti-coagulation. Up until the green light from my cardiologist at 4 months, I was walking briskly and eventually doing time on the exercise bike. After the green light, I have consistently done several hours per week of hard cardio, lifted weights pretty hard, got knocked around good by waves at the beach while boogey boarding and on and on. Listen to the guidance from your cardiologist, but there should be no reason why you can't return to all of your previous physical activities and since it has been 6 months, I'll bet he will give you the full clearance now if you ask him. There is typically a cardiology follow up after 3 or 4 months. Have you had this yet? If not I would schedule your appointment soon and be sure to ask him/her if you have the green light to return to all of your activities. Everyone is different, and your heart might still need more time if your heart had significant enlargement but getting a follow up echo should be able to determine how well along your heart is in terms of remodeling back to normal size.


Please keep us posted and feel free to ask any questions that you have. Whatever it is that you are facing, there are almost certain to be members here who have faced the issue as well.
 

Critter

VR.org Supporter
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Joined
May 1, 2021
Messages
78
Hi



well as Yoda says
View attachment 888208

myself I regard it as more like the promise of Fusion Energy, always 20 years away (since the 1960's).

I don't see this as a problem because of the fact that you now have some years to learn and understand, as I said, there is no rush.

My own situation can serve as a good example of how your situation is actually better than mine was (and I'm pretty happy with my own outcomes).

I had my bicuspid valve discovered at about 5 and operated on at about 10 years old. This was chosen to be a repair (and yes it was a standard Open Heart Surgery as there were no trans catheter anythings back then. I was one of the first in Australia to have what we call now call angiograms, but they were then crude by modern standards. A repair was chosen because being young a steel ring with a valve on it (you really should familiarise yourself with the engineering of this, I have little doubt it formed the basis of my education in biology and engineering) into an organ (my heart) that was still growing.

My next surgery was always discussed from the start and my surgeon was always looking towards the (then actual, frequent and large) developments in technology while balancing actual health risks. I did well on the repair into my 20's but by mid 20's it was starting to calcify and stop working.

At 28 (while I was at University doing my second degree) the time came and we replaced the clagged up one of my own with a cryo-preserved human valve of the right type and size. Recovery went well and my question was always about "when is #3"

The answer was always "we don't know" (which was the truth, but not terribly helpful). I had long long ago since given up worrying about any of this (perhaps I was to young to have ever worried about it. On a side note I had developed in my mid teens an interest in Ancient Greece and Rome. From that I discovered the philosophy of the times, Stoicism. This is a quote from a Roman Emperor Marcus Aurelius (no, not the one in Gladiator, the real one ;-)

View attachment 888209

I try my best to live by that.

Anyway my #2 valve (being a live tissue valve) lasted for some time, but (being live tissue that is explanted and replanted) suffers some handling issues and at around the 20 year mark started to show me signs of it losing its capacity.

I had (for various life reasons) stopped going to follow-ups (reasons such as living in different places around the world) and as we (my wife and I) were going back to Australia I submitted myself to get an examination.

This is when they discovered my aneurysm, which was a tiddler in comparison to your beauty. It was however enough to get everyone concerned (5.6cm) and while the valve was still functioning and my symptoms were barely evident I had an operation to replace that whole thing with what you have now, a Bentall.

Now at this time my surgeon (an understudy of my first, as you can imagine all of this spans 40 years) told me that at #3 I faced an important decision. The complexity of another redo would make a 4th surgery one of the most complex surgeries possible and (his words) "Surgeons will not be lining up to do it" (because nobody wants deaths on their list).

I didn't hesitate, I went mechanical because I already knew that a bileaflet pyrolytic valve would last billions of actuations, well into my late 90's (which I don't anticipate getting to) and beyond. The penalty was of course that I had to take warfarin. I instantly assumed (I'm originally a biochemist) that "I can manage that" and in my life up to that point I have managed every obstacle (of course with the help of others). I did Manage That and this is my blog post on that. Its lengthy and detailed and you really don't need to know all that now, but what you can take from that is this:
  • 90% of what you hear about managing Anti Coagulation Therapy is (at best) bullshit or (being nice) highly slanted in basis
  • there are cost effective personal tools that you can use to self manage (discussed and demonstrated in that post)
  • you are not chained to anything
  • managing INR is much easier than what diabetics must do to manage their blood sugar levels
I visit a cardiologist now (a very nice fellow) about every 2 or so years, and this is a change that's occured in the time between surgery #2 and surgery #3, we only saw surgeons (who are actually the ultimate authority on surgery). We mostly just chat about things because all my numbers are perfectly in line with the age group I'm in of "normal no heart problems at all" people.

I would expect the same for you.

I will say that you've been told some little "porkie pies" about the future of a "repair" which are not founded in the present and not likely, but it doesn't matter.

It doesn't matter because you now have the outfit (well except for the valve itself) for reducing the chances of ever needing another surgery : you have the aneurysm dealt with, for that is what drove my (like your) surgery. Now you will more than likely just face one more surgery to stitch on a new (you should consider mechanical) valve when that tissue valve enters (inevitably) SVD.

Ultimately at your age having your first surgery you are definitely more than one up on me, and having a second (which will probably time in less than 15 years) will give you plenty of time to understand the issues, understand the choices and go in informed. It will also give you time to adjust to a new understanding of life and make you more likely to be a good candidate for 100% compliance with your ACT and thus an excellent chance of a "normal life" (god help me if I ever have one of those, I'd fall asleep at the fhukken wheel).

Anyway, reach out if you wish, and we can talk. I'm in Australia (as my posting data shows) but we can do voice or something and have a laugh about the whole thing.

Bottom line = "you are doing well, you can find your own limits and set your own goals and limits". You can see that I live out in the country now (lived in the big cities enough) and indeed I am a very cautious person on my pensioner mobility scooter

Looks like fun but your driving in the wrong lane. Lol


well behaved too ;-)
Best Wishes
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
Hi

not sure if you added anything in your reply, but if you did then it was:
lost in quotation
ahh, I think I found a cunningly secreted line:
Looks like fun but your driving in the wrong lane. Lol​

happily everyone drives in the "wrong" lanes over here, except the French tourists...

However if you consider that we are indeed upside down, then when viewed from a distant frame of reference we are indeed doing it right, we just hang upside down. ;-)
 

Critter

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Joined
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Messages
78
I am glad you found the reply. It was a bad joke :) . I have visited many foreign countries and I actually love left hand turns. It feels more natural to me. I love going to the islands and dive like in Grand Cayman, Montserat during a volcanic eruption, Fiji. Love the diving there going to get some batteries for the dive computer.
 
Last edited:

Critter

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Joined
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Messages
78
@Pelicle , I understand the reef in Australia has taken a huge hit with coral bleaching. I hope its recovering.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
firstly, if you don't see the little graphic emerge when typing my username @pellicle
1636604524533.png

then you got the spelling wrong and no notification will occur :)

@Pelicle , I understand the reef in Australia has taken a huge hit with coral bleaching. I hope its recovering.
regeneration will likely take hundreds of years I haven't been scuba diving since 2000 because it just made me sad.


2005–2006
In January and February 2006, a bleaching event took place in the southern Reef, especially around the Keppel Islands. Although bleaching was largely confined to this region, the degree of bleaching was worse than in previous years. Up to 98% of corals bleached on some reefs, resulting in nearly 39% mortality on the reef flats and 32% on the reef slopes.​

there are signs that coral is adapting, but of course if you go deeper then you get less light.

There are indications that favourable conditions are emerging further south


... As mentioned above, many observations have been made of tropical species of fish being found in previously temperate waters of central and southern New South Wales. But the corals which make the Great Barrier Reef a famous icon are also on the move.​

Compared to what I snorked and dove in the 80's its pretty sad now. (*note my location is Queensland)
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
have visited many foreign countries and I actually love left hand turns. It feels more natural to me.
interestingly I found that my time in Finland (European rules) that the "give way to the right" made more sense as I had better vision to the right at intersections in the cars I drive. The A pillar obscures vision to the left (in LHD cars) so it makes sense to do it that way.

I don't know why we have RHD but give way to the right too ... then there is the way merging happens in Australia VS Finland.

OMFG

Well at least winter driving is easier here in Oz
 
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