Valve patients in their twenties

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Mbk22

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Jun 13, 2015
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Chicago area
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
 

pellicle

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As I mentioned in your previous question I had mine repaired at 10 and replaced at 28

As I said then I agree and see that a mechanical is a good option. When I was 28 there were not the good modern methods of monitoring INR that there are now. As @Superman said too, he had one done at less than twenty and has made it to be having his own kids.

There were lots of good answers in there.
 

carolinemc

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@Mbk22 as long as his cardio has him on no restrictions, he can do sports cause there are many famous people in sports that take Coumadin and warafarin and do quite well. Good luck for him in all endeavors life has to over, never let blood thinners impede his dreams. Tell him to just go for it and he will be fine.
 

carolinemc

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@Mbk22 you are so welcome. Just keep staying at his side. Heart disease is hard to live with. I am also a Type 2 diabetic(appeared after my second OPH and gene pool). So I can understand your fears for your son. Hugs for today.
 

Protimenow

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Your son's fear of mechanical valves is misplaced. If anticoagulation is the issue, it should be considered much less serious than having to replace tissue valves every few years. The problem with replacing valves is that scar tissue forms after surgery, making it more difficult for the surgeons each time they open the chest, and, perhaps, making it too risky to continue replacing tissue valves.

For a person in his teens or 20s, it makes little sense to use a tissue valve (which, at best, may last 15-20 years, and, as your son experienced, didn't last for five) when mechanicals are available. Mechanicals hardly ever require replacement.

Your son can probably live a normal life while on warfarin -- thousands or millions of people (including myself and many others on this forum) do. Don't let your son buy into the horror stories that some like to tell about being on warfarin - as others have noted, it's easy to monitor the INR and management isn't a big deal anymore.

Drug companies are working on developing anticoagulants for use with mechanical valves that may make INR monitoring practically unnecessary - your son may actually be here when a replacement for warfarin that doesn't require frequent monitoring or INR management comes along. It'll be a gold mine for the drug company that develops it (until patents run out), and may make your son's life even easier.

I steer clear of advising people which type of valve to get - but, given the short viability of tissue valves, and the increasing difficulty it is to reopen the chest, clear out scar tissue, and replace a valve, I really don't like the idea of a tissue valve in a young person.
 

cewilk

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It’s been a while since I’ve posted here, but I had my first operation at age 24 and was active duty in the Marine Corps at the time. I opted for a Ross Procedure since I felt it was better than a tissue valve and I could avoid warfarin and remain active duty. I bounced back quickly, almost back to 100% activity in 4-5 months. I did a pre-deployment training work-up for Afghanistan and deployed to Afghanistan about one year after surgery. Unfortunately when I returned I had gone about a year without a cardio check up, and to my disappointment my echos were not looking good. After about 8 months of follow up I needed to have a re-op which happened about 2.5 years after the Ross. I chose a mechanical valve this time (ATS bi-leaflet is what my surgeon used), and also had my ascending aortic arch replaced with a gel weave Dacron graft. I was 27 at the time. I knew this time going on warfarin was going to medically disqualify me for continued military service, but this time I had gotten to do some things I really wanted to in my military career. In my college and military days, I definitely enjoyed my fair share of alcohol and it was and still is a part of my social life. For the first two month post mechanical valve and being on warfarin I didn’t drink a sip of alcohol. I was approved to do home testing and at that point I experimented more with how alcohol affected my INR. By no means am I recommending this, but I got pretty good at knowing what types of alcohol and how much would affect my INR. I also got goodn at figuring out how to regulate my warfarin dose in the event my INR was elevated from alcohol consumption. I test my INR every Monday and call it in every week. I’m now 31 and have been on warfarin with my mech valve for 4.5 years and it has not nearly impacted me in the way that I thought it would. I lift weights, run/sprint, play pick-up sports, swim, hike, and yes...drink alcohol. I still shave with a razor, I don’t bruise any worse than I did before, I’ve had a few cuts and scrapes here and there that took longer to stop bleeding but nothing major. So my advice to your son who may be apprehensive about mechanical/warfarin, it’s not that bad and has had very little to no impact on my activities and social life.
 

carolinemc

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It’s been a while since I’ve posted here, but I had my first operation at age 24 and was active duty in the Marine Corps at the time. I opted for a Ross Procedure since I felt it was better than a tissue valve and I could avoid warfarin and remain active duty. I bounced back quickly, almost back to 100% activity in 4-5 months. I did a pre-deployment training work-up for Afghanistan and deployed to Afghanistan about one year after surgery. Unfortunately when I returned I had gone about a year without a cardio check up, and to my disappointment my echos were not looking good. After about 8 months of follow up I needed to have a re-op which happened about 2.5 years after the Ross. I chose a mechanical valve this time (ATS bi-leaflet is what my surgeon used), and also had my ascending aortic arch replaced with a gel weave Dacron graft. I was 27 at the time. I knew this time going on warfarin was going to medically disqualify me for continued military service, but this time I had gotten to do some things I really wanted to in my military career. In my college and military days, I definitely enjoyed my fair share of alcohol and it was and still is a part of my social life. For the first two month post mechanical valve and being on warfarin I didn’t drink a sip of alcohol. I was approved to do home testing and at that point I experimented more with how alcohol affected my INR. By no means am I recommending this, but I got pretty good at knowing what types of alcohol and how much would affect my INR. I also got goodn at figuring out how to regulate my warfarin dose in the event my INR was elevated from alcohol consumption. I test my INR every Monday and call it in every week. I’m now 31 and have been on warfarin with my mech valve for 4.5 years and it has not nearly impacted me in the way that I thought it would. I lift weights, run/sprint, play pick-up sports, swim, hike, and yes...drink alcohol. I still shave with a razor, I don’t bruise any worse than I did before, I’ve had a few cuts and scrapes here and there that took longer to stop bleeding but nothing major. So my advice to your son who may be apprehensive about mechanical/warfarin, it’s not that bad and has had very little to no impact on my activities and social life.
Please stop the drinking, not good for you at all for starters. You may love how it makes you feel, but it can cause health issues, like heart problems, liver damage, lung damage. and countless other health issues you can see coming. It is good that you remain active and be consistant. Never let warafarin keep you down. But the drinking is a big problem. try to get that under more control, like a couple of beer or two glasses of wine a week. You need to get more educated on the effects of alcohol and your body. You know you have heart problems with two OPH, you do not want to risk more. Just keep on the active lifestyle, you are doing great. Just work on eventually eliminating the alcohol all together, you will be healthier for it. Hugs for today.
 

cewilk

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Messages
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Kansas City, MO
Please stop the drinking, not good for you at all for starters. You may love how it makes you feel, but it can cause health issues, like heart problems, liver damage, lung damage. and countless other health issues you can see coming. It is good that you remain active and be consistant. Never let warafarin keep you down. But the drinking is a big problem. try to get that under more control, like a couple of beer or two glasses of wine a week. You need to get more educated on the effects of alcohol and your body. You know you have heart problems with two OPH, you do not want to risk more. Just keep on the active lifestyle, you are doing great. Just work on eventually eliminating the alcohol all together, you will be healthier for it. Hugs for today.
Thank you for your concern and input. By your comment though, I feel as if you are assuming that my alcohol consumption is that of a full blown alcoholic, which is not true at all. I will continue to enjoy my alcohol in social and leisure settings. 🙂
 
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pellicle

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Thank you for your concern and input. By your comment though, I feel as if you are assuming that my alcohol consumption is that of a full blown alcoholic, which is not true at all. I will continue to enjoy my alcohol in social and leisure settings. 🙂
no, you've just not been observing her style ;-)

This is mine (and Agian's too)
 

pellicle

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Please stop the drinking, not good for you at all for starters. You may love how it makes you feel, but it can cause health issues, like heart problems, liver damage,
gotta die of something, I'd rather die having enjoyed the last 50 years not holding a candle for an extra 4

Drink in moderation, enjoy life to the full I say
 

Cork

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Jun 2, 2006
Messages
52
Location
Pittsburgh, Pa
I had 2 valves replaced @ 22. I asked the surgeon about alcohol at my post op follow up. He looked at my labs... asked if I was really on 12.5 mg of Coumadin.... and said in very broken english.... Alcohol.... yes... good.... green leafs.... no good.
 

dick0236

Eat the elephant one bite at a time
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I was prescribed a can of beer each nite, as a diuretic, while I was in the hospital post OHS. Alcohol, like most everything else, does not need to be eliminated if you are on warfarin.
 

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