Younger aortic valve replacement patient experience

[Mbk22]

My son had his aortic valve replaced at 18 yrs old in Boston right before college with a 25mm Edward life science pericardial valve.
He just graduated 4 years later and the valve calcified badly in the last year and needs to be replaced in the fall latest at 23 years old.
He’s an athletic guy with a very social lifestyle and against mechanical Valves because of the anti coagulants and limitations of certain sports , partying and usual post college life. However his body is clearly beating up the bovine tissue at his age and no reason to believe the next one will be better. 5 years at a time doesn’t seem like a good strategy.
I’m wondering if there are any young guys girls out there that have similar stories and what they have found out , recommendations , or what we may not know or be thinking about in trying to make a good decision.
Thanks
Mbk

 

[dick0236]

I'm old now, 83, but I had open heart surgery when I was only 31......just a little older than your son and fresh out of college. That was the only surgery I have ever had. I am not a big man, 5-9 and 175 lbs but have always been active and an "outdoors type".....and have done more than my share of "partying". I have been on warfarin throughout and have lived to talk about it........on one mechanical valve. I imagine your sons' docs have told him that surgery every few years ain't gonna work. Have him read thru many, many posts on this forum to see that warfarin allows us to lead near normal lives.

 

[pellicle]

My son had his aortic valve replaced at 18 yrs old in Boston right before college with a 25mm Edward life science pericardial valve.
...
I’m wondering if there are any young guys girls out there that have similar stories and what they have found out , recommendations , or

I'm no longer young, but I was. I would say first that his concerns about AC therapy due to the mentioned reasons are perhaps overblown (although getting fall down drunk is not a good idea). I help a few younger people manage their INR (in their late 20's) and they've found too that much of the "myth" associated with being on Anti Coagulation Therapy is based on stories passed around (even in the medical community) and on the experiences of the badly managed elderly. Make no mistake though, failing to deal with ACT properly (take your drugs) will potentially have consequences ... but then so to will a 3rd and 4th and ... surgery.


I had my first OHS at 10 (essentially a repair) and my 2nd at 28 when that valve subsequently (expectedly) calcified and became incompetent. As it happened I was at Uni again doing my second degree (lets avoid the reasons for re-training).

On that occasion I got a homograft which was cryo-preserved, partly because my surgeon and that team were of the view that method was ideal and partly because my surgeon felt that managing being on warfarin wasn't the ideal choice for me at that time (perhaps he had some other unspoken ideas).

That homograft lasted me about 20 years, it may have lasted longer but as I had an aortic aneurysm develop that needed replacement it didn't get to squeeze out that last few years.

I now have a mechanical (so yes, that's my 3rd OHS at the age of 48) and manage INR myself.

My findings of life with a mechanical valve are that I was able to restore my health and fitness to levels that exceeded where I was before having that valve. I've found that it works very well (as indeed one would expect) and am confident that I will not need any further surgery for the valve. I'm keen on Cross Country Skiing (about as much on track as off) and after surgery managed to build myself back up to fitter than I was before (I've done XC Skiing since 2006 with some enthusiasm, including some sled pulling trips out in the wild.
This selfie image was on a days lake skiing taken in 2014 in Finland (where I was living)

I'm back in Australia now and sadly Australia does not encourage daily fitness as much as Finland does. So I know I've slipped a bit (ok, and other cumulative injuries make it harder too)

The trade off with Mechanical vs Tissue is of course Tissue (largely but not exclusively) allows you to avoid ACT(blood thinners) while Mechanical largely but not exclusively allows you to avoid re-operation from Structural Valve Degradation (of which you know something about.now).

I would expect that my surgeon back then would have a different view of being on AC therapy now because so much has changed. Back then even the term INR was not around and everyone used ProThrombin Time, as well Point of Care machines such as my Coaguchek did not exist and management of INR was often monthly blood draws. The risk of harm from ACT is significantly improved with the move to weekly testing and dose administration afforded by PoC machines.

I feel that this segment from a talk on the matter by Dr Schaff is worth listening to:


I'd have some more detailed questions, but in your situation I would strongly suggest that the mechanical choice is your best bet at that age. One does not get less risk with each subsequent surgery and indeed the risk of further damage (to the rest of the body systems) increases as well as the risks of post surgical infections.

Lastly I have my thoughts on a few related matters on my blog (saves me retyping them all the time too).

The points as I see them:
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
... and on management of AC Therapy (warfarin)
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Remember, administering ACT is far less onerous than say, developing diabetes, and has far better outcomes too. People with diabetes manage their multiple times per day blood draws to determine sugar levels (while ACT is weekly) and we don't really need to alter our diet (despite the myths).

Please feel free to contact me if you feel inclined to talk. I can spend time on the phone with you if you like. PM me if you are of that mind.

Best Wishes.

 

[Mbk22]

I'm old now, 83, but I had open heart surgery when I was only 31......just a little older than your son and fresh out of college. That was the only surgery I have ever had. I am not a big man, 5-9 and 175 lbs but have always been active and an "outdoors type".....and have done more than my share of "partying". I have been on warfarin throughout and have lived to talk about it........on one mechanical valve. I imagine your sons' docs have told him that surgery every few years ain't gonna work. Have him read thru many, many posts on this forum to see that warfarin allows us to lead near normal lives.

Thank you for the response and positive vibe.

 

[AOS518]

I was in a similar position as your son. I had my first valve replaced at 22 right after college graduation with a tissue valve. 5 1/2 years later I needed it replaced. I choose to go with the mechanical valve. I have an 8 year old daughter and gave up having more children getting the mechanical valve but hopefully I’ll be around for her whole life and not have to go through another surgery.
I self test at home and dose myself with my doctors guidance. I’m still active and do almost everything I want. My surgeon told me to avoid horseback riding but other then that it was just knowing that your going to get bruised and bleed more then the average person. You have to be smart and go to the ER if you take a hard hit to the head or can’t get the bleeding to stop. I was provided this info from my surgeon and doctor.

I tried skiing for the first time this year at 34 and had a blast. I wore a helmet and stayed on the small slopes. Maybe making a pros and cons list would help put it into perspective for him.Good luck to your son with whichever valve he chooses.

 

[Mbk22]

I was in a similar position as your son. I had my first valve replaced at 22 right after college graduation with a tissue valve. 5 1/2 years later I needed it replaced. I choose to go with the mechanical valve. I have an 8 year old daughter and gave up having more children getting the mechanical valve but hopefully I’ll be around for her whole life and not have to go through another surgery.
I self test at home and dose myself with my doctors guidance. I’m still active and do almost everything I want. My surgeon told me to avoid horseback riding but other then that it was just knowing that your going to get bruised and bleed more then the average person. You have to be smart and go to the ER if you take a hard hit to the head or can’t get the bleeding to stop. I was provided this info from my surgeon and doctor.

I tried skiing for the first time this year at 34 and had a blast. I wore a helmet and stayed on the small slopes. Maybe making a pros and cons list would help put it into perspective for him.Good luck to your son with whichever valve he chooses.

Thank you for your response!

 

[JonML]

Had my first done at 16 (mechanical) and never seemed to limit me. Played softball, did the QUAD locally for several years (swimming/crosscountry skiing, biking and running over several months). Whatever my body felt I could do. Have had 2 others over the years (after 14 years valve developed growth so replaced and 16 years later another valve (aortic was first and this was the mitral) replaced. Noticed some limitations now but approching 60 is normal.

 

[Mbk22]

Had my first done at 16 (mechanical) and never seemed to limit me. Played softball, did the QUAD locally for several years (swimming/crosscountry skiing, biking and running over several months). Whatever my body felt I could do. Have had 2 others over the years (after 14 years valve developed growth so replaced and 16 years later another valve (aortic was first and this was the mitral) replaced. Noticed some limitations now but approching 60 is normal.

Thanks much. What brand of valve did you use for aortic? Is growth in valve unusual? Was mitral replacement a result of aortic valve?
Than you
Mbk

 

[JonML]

Thanks much. What brand of valve did you use for aortic? Is growth in valve unusual? Was mitral replacement a result of aortic valve?
Than you
Mbk

The first valve for the aorta in 1976 (...boy am I that old already?) was a Lillehei-Kaster aortic valve prosthesis and this was what was implanted. My understanding was the St. Jude valve was just coming out at the time. Basically the Lillehei-Kaster looks like a ring with 2 "rattlesnake fangs" sticking up and a synthetic (don't know material) that comes up and hits against the fangs and comes back down as the heart beats... is listed as a "pivoting disc". The "growth" was on one part or the other and kept it from closing all the way, leakage. This didn't seem to be the norm. Since that happened and (from my reading) it was being phased out in favor of the St. Judes valve they replaced it with that. That was in 1990 and no problems, still has the crisp sounds of operating like supposed to. That was for the aortic valve. Beginning in 1999 they noticed that the leaflets in the mitral valve were begining to develope "rips" and causing it to leak. They put in a St. Judes valve so I have 2 mechanicals (aortic and mitral). The cause of the mitral was NOT anything related to the aortic valve, just something unfortunately that happened to me. Like said I really didn't experience not being able to do whatever I wanted. I rode trials (motorcycles competing over obsticles...once rode it over a VW) and at that time worked in a furniture store so delivered sleepers, etc. so really no limit on lifting, just normal what I could do (first surgery was 116# and at 2nd up to weight am now, 130ish#). Like said on physical limitations I did notice playing basketball competively it slowed me from the constant running but again during the QUAD we did a 10K and that was no problem.
I know this was long but hope it helps some.

 

[vitdoc]

First aortic valve at 29 . Tissue lasted 5.5 years 1977. St.Jude 83. 2006 aortic aneurysm new St Jude plus aorta . Skied , jogged, horseback riding and bicycling. Minimal problems with warfarin. Still biking at 70. I would still consider the St. Jude. Great track record.

 

[tom in MO]

My son had his aortic valve replaced at 18 yrs old in Boston right before college with a 25mm Edward life science pericardial valve.
He just graduated 4 years later and the valve calcified badly in the last year and needs to be replaced in the fall latest at 23 years old.
He’s an athletic guy with a very social lifestyle and against mechanical Valves because of the anti coagulants and limitations of certain sports , partying and usual post college life. However his body is clearly beating up the bovine tissue at his age and no reason to believe the next one will be better. 5 years at a time doesn’t seem like a good strategy.
I’m wondering if there are any young guys girls out there that have similar stories and what they have found out , recommendations , or what we may not know or be thinking about in trying to make a good decision.
Thanks
Mbk

There are no post-college sports that he will be restricted from with a mechanical valve. Some jobs though (e.g. Navy Seal).
Valve type is irrelevant to a social lifestyle.
Partying is often a euphemism for routine drug and alcohol abuse. That's also possible with a mechanical valve. You just can't get so screwed up that you cause severe internal bleeding . That's a good thing

You say "what we may not know or be thinking about in trying to make a good decision." As the parent of a 24 yo with a benign brain tumor for a few years, I know it's hard to do, but don't forget it's his decision and nobody else's. Encourage him to join here and ask questions. He'd learn about both types of valves for himself. Plus, as we all know, parents are stupid

 

[Superman]

I’ve had a St Jude mechanical valve since I was a senior in high school. Just before I turned 18. I’m going on 29 years on ACT come November.

Enjoyed quite a bit of mountain biking in my late teens and 20’s. Played basketball at the local gym. Enjoyed adult beverages with my friends. And that was all in the days before home monitoring. I had to stop in to the lab to get my blood drawn monthly. Now I just poke my finger and send an an email.

I’ve done some travel as well. I’m on a see food diet (I see food, I eat it).

I mean, maybe if he’s playing organized team sports like football or hockey. But not many people are on leagues for those sports after college. The occasional pick up game isn’t a problem.

We do like to say around here, ultimately whatever he chooses will be better than what he has now.

 

[pellicle]

I rode trials (motorcycles competing over obsticles...once rode it over a VW)

my cousin rode trials (I was always having to explain what that was even to my fellow dirt bike riders who only knew MX or EnduroX)

 

[pellicle]

... I’m on a see food diet (I see food, I eat it).

I'm still on that diet ;-)

 

[Mbk22]

There are no post-college sports that he will be restricted from with a mechanical valve. Some jobs though (e.g. Navy Seal).
Valve type is irrelevant to a social lifestyle.
Partying is often a euphemism for routine drug and alcohol abuse. That's also possible with a mechanical valve. You just can't get so screwed up that you cause severe internal bleeding . That's a good thing

You say "what we may not know or be thinking about in trying to make a good decision." As the parent of a 24 yo with a benign brain tumor for a few years, I know it's hard to do, but don't forget it's his decision and nobody else's. Encourage him to join here and ask questions. He'd learn about both types of valves for himself. Plus, as we all know, parents are stupid

Thanks for your response!

 

[Mbk22]

my cousin rode trials (I was always having to explain what that was even to my fellow dirt bike riders who only knew MX or EnduroX)

Thanks for your response!

 

[Mbk22]

I’ve had a St Jude mechanical valve since I was a senior in high school. Just before I turned 18. I’m going on 29 years on ACT come November.

Enjoyed quite a bit of mountain biking in my late teens and 20’s. Played basketball at the local gym. Enjoyed adult beverages with my friends. And that was all in the days before home monitoring. I had to stop in to the lab to get my blood drawn monthly. Now I just poke my finger and send an an email.

I’ve done some travel as well. I’m on a see food diet (I see food, I eat it).

I mean, maybe if he’s playing organized team sports like football or hockey. But not many people are on leagues for those sports after college. The occasional pick up game isn’t a problem.

We do like to say around here, ultimately whatever he chooses will be better than what he has now.

Thanks Superman!

 

[Mbk22]

First aortic valve at 29 . Tissue lasted 5.5 years 1977. St.Jude 83. 2006 aortic aneurysm new St Jude plus aorta . Skied , jogged, horseback riding and bicycling. Minimal problems with warfarin. Still biking at 70. I would still consider the St. Jude. Great track record.

Thanks

 

[Rob88]

I had a mechanical valve put in almost 2 years ago at 28 years old. The only thing it’s really prevented me from doing that I’ve wanted to is playing rugby for the local club. I continue to exercise including weightlifting, and I’ve been able to travel to Vegas, 8 different countries in Europe and Vancouver. I also have had quite a bit to drink on certain special occasions.

I find with day to day stuff I barely notice the warfarin as it’s as simple as taking the pills and testing to make sure I’m in range. During travel it was a bit more challenging as it’s a completely different routine. My INR got a bit high during my trip to Europe and I had to make adjustments on the fly to bring it back within range. Pellicle was right there to help me with that.

I’m happy to answer any questions or just share more about the experience if you or your son are interested.

 

[Thomas]

I've got a St. Jude mitral valve and warfarin is a part of daily life; not a big deal.
Biggest reason for going mechanical was the chance at not having to have another surgery.

I was told by my cardio not to play contact hockey any more to reduce the risk of a bleeding incident.
So now I play non-contact. Not an issue at 57. I was tired of getting beat up anyways.
Other than that, my profession as a drummer is strenuous at times, I'm still mountain biking, sports climbing/bouldering, lifting heavy weights etc.
Life has to go on, otherwise where's the fun!