34 Year old man awaiting Aortic valve replacement / repair

[jeffreycaulfield]

Hi,

I just came across this website through google. Seems like a great resource.

I'm a 34-year-old man with a bicuspid aortic valve. I was diagnosed 3 years ago. I'm currently weighing up surgical options. I haven't seen a surgeon yet so I'm guessing they will advise what is best for my valve shape etc.

I'm still running 5-8km a couple of times per week, ocean swimming 1-2km per week and surfing a few times per week. But my cardiologist believes I need surgery in the next 12 - 24 months. Hard to believe I was running marathons and doing triathlons a few years back while I had a dodgy valve. I often wonder if it's possible that it developed later in life but from everything I've read, I don't think that's possible.

Anyway, I'm wondering if anyone here has had a tissue valve / ross procedure / repair and how they are doing? I'm worried I won't be able to exercise the same way and that's usually how I cope when other aspects of life get challenging.

I'm also weighing up having the surgery in Australia or Ireland so if anyone has any recommendations for either, that would be much appreciated.

Thanks to all for contributing to this website! It's hard to find others in a similar situation.

 

[pellicle]

Hi and welcome

I'm worried I won't be able to exercise the same way and that's usually how I cope when other aspects of life get challenging

You should make a full recovery. I would ask you to be logical in your analysis of what you do. Be wary about people say about warfarin. Usually it's misguided.

Has anyone mentioned aneurysm to you yet? With BAV associated aneurysm in aortic artery is common. My valve replacement at 28 (second ohs ) was still functioning when my 3rd ohs Was driven by the aneurysm.

I led a pretty active life and continue to do so with a mechanical valve and a bental procedure.

If she can do this you can do what you're doing


https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
Best wishes

 

[Lucker]

Hi,

I just came across this website through google. Seems like a great resource.

I'm a 34-year-old man with a bicuspid aortic valve. I was diagnosed 3 years ago. I'm currently weighing up surgical options. I haven't seen a surgeon yet so I'm guessing they will advise what is best for my valve shape etc.

I'm still running 5-8km a couple of times per week, ocean swimming 1-2km per week and surfing a few times per week. But my cardiologist believes I need surgery in the next 12 - 24 months. Hard to believe I was running marathons and doing triathlons a few years back while I had a dodgy valve. I often wonder if it's possible that it developed later in life but from everything I've read, I don't think that's possible.

Anyway, I'm wondering if anyone here has had a tissue valve / ross procedure / repair and how they are doing? I'm worried I won't be able to exercise the same way and that's usually how I cope when other aspects of life get challenging.

I'm also weighing up having the surgery in Australia or Ireland so if anyone has any recommendations for either, that would be much appreciated.

Thanks to all for contributing to this website! It's hard to find others in a similar situation.

Hello, what's your problem - regurgitation or stenosis?

 

[Dunwanted]

Hello Jeffrey and welcome.
In this forum/group you will find a lot of helpful information and peace of mind.

Regarding your options the surgeon will tell you which ones you have from what I'm guessing (I'm not an expert), depending on where you get the operation done they have different options.

For example in my case the surgeon gave me a lot of options: bovine valve, Ross procedure (he wanted me to get that one), Ozaki and mechanical (the one I chose since i don't want another operation).

Hope this information helps.

 

[Freek]

Hi,

I just came across this website through google. Seems like a great resource.

I'm a 34-year-old man with a bicuspid aortic valve. I was diagnosed 3 years ago. I'm currently weighing up surgical options. I haven't seen a surgeon yet so I'm guessing they will advise what is best for my valve shape etc.

I'm still running 5-8km a couple of times per week, ocean swimming 1-2km per week and surfing a few times per week. But my cardiologist believes I need surgery in the next 12 - 24 months. Hard to believe I was running marathons and doing triathlons a few years back while I had a dodgy valve. I often wonder if it's possible that it developed later in life but from everything I've read, I don't think that's possible.

Anyway, I'm wondering if anyone here has had a tissue valve / ross procedure / repair and how they are doing? I'm worried I won't be able to exercise the same way and that's usually how I cope when other aspects of life get challenging.

I'm also weighing up having the surgery in Australia or Ireland so if anyone has any recommendations for either, that would be much appreciated.

Thanks to all for contributing to this website! It's hard to find others in a similar situation.

Hi, I had also a bicuspied aortic valve. Probably you were born with it like me.
When I was 40 it needed surgery to. My health was also very good, no symptons as well. . The better your health is before surgery, the better the outcome (faster recovery etc.). I opted for a valve repair, because it was an option they offered and looked promising. Unfortunately, the repair didn't hold and after 3 years I needed surgery again and opted for a mechanical one. Looking back, I wish I opted for mechanical right away, but this is how things go.
Aortic valve repairs are not so common than mitral valves repairs. You need a surgeon with a lot of experience. It's much more complicated to repair something than removing the whole valve with something else. If I am not mistaken, scientific literature is not so positive regarding aortic repairs, but you can check that out by yourself.
I have a mechanical valve now and I don't feel any limitations in living & sports, i also (kite)surf and I am very happy that I don't need another surgery anymore in the future, which would not have been the case if I opted for a biological valve (but never say never ;-). I use phenprocoumon and the INR is very very steady. No bleedings or other symptons so far. Because of my active lifestyle, my cardiologist allows me to maintain a INR between 2 and 2,5.

Good luck!​

 

[-andrew-]

Hi,

Your questions and concerns sound almost exactly the same as mine were before my first surgery which was a Ross Procedure performed 21 years ago now. I've since had 2 further operations - first one to repair the aortic valve (13 years after the Ross) and sort out an aneurysm (see Pellicle's comment above) and then a second to replace the aortic valve after it was impacted by endocarditis. I decided on a tissue valve for the replacement too.

I went into the first surgery with no outward symptoms whatsoever and was very fit at the time (road bike racing to a decent level and rowing). I recovered quickly from the first (and subsequent) surgeries and picked exercise back up to a reasonable level (2hr 20min olympic distance tri, 22:30 for a 10 mile bike time trial and qualified for the UK age group team for sprint tri - not trying to boast at all, it's just that everyone's view on what decent fitness is varies so thought you may appreciate the detail). I'm 45 now and still doing the odd triathlon, but felt it was time to ease back a little so have focused more on less intensive activities - swimming and windsurfing mainly. So exercise-wise I've really not felt any limitation from my valve surgeries at all. My cardiologist would no doubt have preferred that I kept active and fit but avoided highly intensive exercise, but for me the competition aspect was my motivation to train at all.

I'll need a 4th surgery now when the aortic valve wears out, so I've taken a significant risk with the decisions I've made. With hindsight, I think I'd have still gone for the Ross initially, driven by the hope of an extended period without any of the arguably minor drawbacks of the mechanical option (anticoagulation, clicking) or repeat surgeries, but then moved to a mechanical as a 2nd operation. But there are potential complications with that option too. Others on here are far more informed than I am, and obviously your surgeon will advise, but hope that info helps.

Best wishes with it all!

Andrew

 

[ckeogh]

I'm just out of a similar situation to yourself(surgery in Oct 2022). I'm Irish 31 and I was living in vancouver. I chose to come home and get it from the same surgeon who I got a ross procedure from in 2010.

I ended up needing surgery 12 years on from the ross because of an aneurysm. Valves were in good shape still but unfortunately the aneurysm was above 5.5cm.

I got a mechanical valve and aneurysm repair in the one go this time.

Looking back I have mixed feelings about choosing the ross.
I was 18 so I'm happy I got my 20's warfarin free and I was able to drink and travel without any concern of INR levels. But then I was upset with only getting 12 years and now having 2 bad valves. But I knew the risk and had a great few years so I'd probably do the same again

What I would say is if I was I offered a choice in my 30's between mechanical and ross I'd pick the mechanical without a doubt. Warfarin hasn't been an issue at all and the clicking doesn't really bother me. I don't mind missing mad party's now as much as I would have at 20.

As said above I'd definitely ask about aneurysm risk , by the looks of it that is the reason so many of us here ended up going under the knife again.


Good luck and if you are coming home for the surgery I'd recommend Prof Mark Redmond for the surgery.

 

[tom in MO]

Welcome to the BAV club, one nobody wants to join

When it comes to Ireland vs. Australia, I'd pick the one you live in the most, just in case you need follow up, or the country with the best cardiac hospital close to where you live. Pellicle is not completely correct in saying "With BAV associated aneurysm in aortic artery is common." Aortic aneurysms are not really "common" in those with BAV, but are statistically more prevalent in those with BAV compared to those w/o a BAV. Most people who need their BAV replaced do not have an aneurysm. I didn't, but was warned of the possibility by my cardiologist. In your pre-surgical workup, they will check for one. Often it's noted in the echocardiogram that was used to detect your BAV.

 

[Chuck C]

Actually, aortic aneurysm is very common with BAV (bicuspid aortic valve). About 50%. That is very common.

"A thoracic aortic aneurysm (TAA) is present in ≈50% of BAV patients, who also have an 8‐fold higher risk of aortic dissection than the general population."

https://www.ahajournals.org/doi/10.... ) is,dissection than the general population.
Also here:

"The reported prevalence of aortic dilatation in individuals with BAV is approximately 50% (Verma and Siu, 2014)"

https://www.frontiersin.org/articles/10.3389/fphys.2021.615175/full

 

[Midlo_dave]

Welcome! I am not yet 3 weeks out from aortic valve replacement surgery. I am 50 years and in otherwise good health. Had 2 previous valve repairs when I was a kid. Choose mechanical because I never want to have open-heart surgery again (for me and my family). So far the warafin and ticking have not been an issue. I am obviously early in my recovery, but I hope to do more running (jogging), kayaking, and hiking than I did prior to my surgery. Best wishes in your journey.

 

[nobog]

I'll keep it short - get a mechanical valve.

 

[treichert0312]

Or go porcine and break that valve in less than 10 years. Mine broke after a weekend of hearty physical exertion.
Now I am 6 months out from mechanical replacement and living well.

 

[vitdoc]

bicuspid aortic with marked stenosis
29 tissue aortic failed 5 years
35 St. Jude mechanical
57 repeat mechanical with aorta repair 6.5 cm aneurysm
74 still bike riding
At your age would consider mechanical valve. Unless you crave open heart surgery.

 

[jeffreycaulfield]

Hello, what's your problem - regurgitation or stenosis?

Hey, its regurg

 

[jeffreycaulfield]

Hi,

Your questions and concerns sound almost exactly the same as mine were before my first surgery which was a Ross Procedure performed 21 years ago now. I've since had 2 further operations - first one to repair the aortic valve (13 years after the Ross) and sort out an aneurysm (see Pellicle's comment above) and then a second to replace the aortic valve after it was impacted by endocarditis. I decided on a tissue valve for the replacement too.

I went into the first surgery with no outward symptoms whatsoever and was very fit at the time (road bike racing to a decent level and rowing). I recovered quickly from the first (and subsequent) surgeries and picked exercise back up to a reasonable level (2hr 20min olympic distance tri, 22:30 for a 10 mile bike time trial and qualified for the UK age group team for sprint tri - not trying to boast at all, it's just that everyone's view on what decent fitness is varies so thought you may appreciate the detail). I'm 45 now and still doing the odd triathlon, but felt it was time to ease back a little so have focused more on less intensive activities - swimming and windsurfing mainly. So exercise-wise I've really not felt any limitation from my valve surgeries at all. My cardiologist would no doubt have preferred that I kept active and fit but avoided highly intensive exercise, but for me the competition aspect was my motivation to train at all.

I'll need a 4th surgery now when the aortic valve wears out, so I've taken a significant risk with the decisions I've made. With hindsight, I think I'd have still gone for the Ross initially, driven by the hope of an extended period without any of the arguably minor drawbacks of the mechanical option (anticoagulation, clicking) or repeat surgeries, but then moved to a mechanical as a 2nd operation. But there are potential complications with that option too. Others on here are far more informed than I am, and obviously your surgeon will advise, but hope that info helps.

Best wishes with it all!

Andrew

Thanks Andrew, this really helps! Haven't met anyone who returned to triathlon. Keep up the good work!

 

[jeffreycaulfield]

I'm just out of a similar situation to yourself(surgery in Oct 2022). I'm Irish 31 and I was living in vancouver. I chose to come home and get it from the same surgeon who I got a ross procedure from in 2010.

I ended up needing surgery 12 years on from the ross because of an aneurysm. Valves were in good shape still but unfortunately the aneurysm was above 5.5cm.

I got a mechanical valve and aneurysm repair in the one go this time.

Looking back I have mixed feelings about choosing the ross.
I was 18 so I'm happy I got my 20's warfarin free and I was able to drink and travel without any concern of INR levels. But then I was upset with only getting 12 years and now having 2 bad valves. But I knew the risk and had a great few years so I'd probably do the same again

What I would say is if I was I offered a choice in my 30's between mechanical and ross I'd pick the mechanical without a doubt. Warfarin hasn't been an issue at all and the clicking doesn't really bother me. I don't mind missing mad party's now as much as I would have at 20.

As said above I'd definitely ask about aneurysm risk , by the looks of it that is the reason so many of us here ended up going under the knife again.


Good luck and if you are coming home for the surgery I'd recommend Prof Mark Redmond for the surgery.

Thanks for this @ckeogh. Really helpful to read about someone else who had to navigate moving countries as well as surgery. Did you return to Vancouver?
Do you mind me asking why you opted for a mechanical instead of a tissue valve?
thanks again for sharing your experience!

 

[jeffreycaulfield]

Welcome! I am not yet 3 weeks out from aortic valve replacement surgery. I am 50 years and in otherwise good health. Had 2 previous valve repairs when I was a kid. Choose mechanical because I never want to have open-heart surgery again (for me and my family). So far the warafin and ticking have not been an issue. I am obviously early in my recovery, but I hope to do more running (jogging), kayaking, and hiking than I did prior to my surgery. Best wishes in your journey.

Thanks @Midlo_dave ! I wish you a speedy recovery!

 

[ckeogh]

@jeffreycaulfield no I stayed ireland , I've got my Canadian citizenship so I can always return. My heart wouldn't be a reason to not go back, the cardiologists were great there I just felt more comfortable with the team in ireland because I knew them since I was a kid.

I choose the mechanical over a tissue because these surgerys aren't fun every few years and the more times you've been operated on the higher the risk the next time.

A lot of people only get single digit years from the tissue valve. I wanted to give myself the best chance of this being my last open heart surgery.

Because I got the ross, I will also need my pulmonary valve changed out at some stage(they think I might get another 15 years out of it).They plan on doing this up through my groin so no open heart surgery for this one. But there is still some risks and negative effects to this. So keep that in mind if you are thinking ross.

I've had both now, mechanical and tissue and I feel much better knowing this might get me through the rest of my life without OHS again. The warfarin and clicking really aren't a problem for me.

As far as exercise goes I done Brazilian jiu jitsu for 7 years with a tissue valve and plan on doing it with a mechanical/warfarin too and I'm back working as an electrician, so fitness hasn't been an issue with either valves.

 

[jeffreycaulfield]

@jeffreycaulfield no I stayed ireland , I've got my Canadian citizenship so I can always return. My heart wouldn't be a reason to not go back, the cardiologists were great there I just felt more comfortable with the team in ireland because I knew them since I was a kid.

I choose the mechanical over a tissue because these surgerys aren't fun every few years and the more times you've been operated on the higher the risk the next time.

A lot of people only get single digit years from the tissue valve. I wanted to give myself the best chance of this being my last open heart surgery.

Because I got the ross, I will also need my pulmonary valve changed out at some stage(they think I might get another 15 years out of it).They plan on doing this up through my groin so no open heart surgery for this one. But there is still some risks and negative effects to this. So keep that in mind if you are thinking ross.

I've had both now, mechanical and tissue and I feel much better knowing this might get me through the rest of my life without OHS again. The warfarin and clicking really aren't a problem for me.

As far as exercise goes I done Brazilian jiu jitsu for 7 years with a tissue valve and plan on doing it with a mechanical/warfarin too and I'm back working as an electrician, so fitness hasn't been an issue with either valves.

Thanks @ckeogh, appreciate you sharing your experience. I always thought I'd avoid mechanical and blood thinners for as long as possible, but you've given me something to think about.

Do you mind me asking if you went public or private in Ireland and if it was difficult from that side of things? Since I've lived away from Ireland for 7 years, I've no private health cover and I'm not sure if I can go public after being away. Just wondering about the cost implications of returning to Ireland for the surgery if you're happy to share that?

 

[ckeogh]

No problem, happy to help.

I was the same as you. I talked with a cardiologist in Canada and they recommended mechanical, I wasn't convinced so I talked with my cardiologist in Ireland and he recommended the same.

I said to him "I thought you said I wouldn't be getting a mechanical till I was older" and without a flintch he said " You are older". Knocked me down a peg or two. I still feel like im 18 .

I've always been public and deal with the mater hospital. Prof Redmond who was my surgeon works in the mater Public but is also a share holder in the beacon private hospital. He likes to work out of the beacon so I got shifted over there without having to pay, so that worked out great.


I got one OHS done in 2010 in the public hospital and one in 2022 in the private. Both by the same surgeon and honestly I think the public was better for recovery. As nice as your own room sounds it didn't really suit me. I much preferred interating with the other patients in the public wards. But that is definitely just a personal preference as both hospitals were great.

As far as being away , I don't think that's an issue. I was away for 6 years and there was no problem coming home and getting looked after.

Id recommended, If you come home try get your gp to refear you to the mater hospital for a check up and try get under the care of cardiologist Prof Kevin Walsh. He will then set you up for a consultation with Prof Mark Redmond to discuss surgery . Once your surgery is done you will go back to the care of Prof Walsh and his team.