Decision for 22 year old UK male

[ajay_22_86]

Hi,

I've been browsing this site for a while but thought it's time to post now

I'm a 22 year old male from London, England who has bicuspidal aortic stenosis (I think that's the right name). I'm having my operation on May 6th and have been going to various appointments to discuss the type of valve that I should have. I'm still undecided and want to get people's opinions given my age.



I shall also contribute more to this place but this is just my first post and all that stuff so yeah!

 

[Ross]

My personal opinion, because of your age, mechanical and ACT for life. I'm for anything that will keep you from repeating surgery if at all possible. No guarantees regardless of what you choose, but it's the best shot at never doing this again.

I see your reading up on Coumadin/ACT. Good job! Most people don't. They just say, I don't want to.........

 

[Eva]

Welcome Aboard, Ajay,

I wish you good luck in making a decision...it is tough to advise anyone which valve to choose, and mostly you because of your young age. I ask myself if you were my son, I would be in pain trying to advise you

May I ask you if your cardio or surgeon made any recommendations knowing your health better than we do... And if so, on what basis they recommended either valve?!

One surgeon I consulted about mechanical valves before my surgery told me: "you are too young to start on coumadin"!!! I was 57 you have 35 years ahead of you before reaching 57 !! Yet, it is heart breaking to see you needing another surgery, not knowing when, if you go tissue. Yet, heart surgeries are advancing rapidly and who know where it will be in 15 years?!

So, I think I am of not help, but I strongly feel with you and I shall pray that you make the decision that is right for you

 

[neil]

ajay.welcome aboard,you will have lots of opinions on here but the most important is yours,talk to your cardio and sugeon for there advice,there is a lot to take on board as far as choice of valves go,there is fors and against with mech and tissue,as am sure you will be told,but remember whatever you pick its gonna be better than your old one ok,

 

[Herb M]

It is amazing that a surgeon will say you are too young to start on coumadin.
People who have a long life ahead of them should opt for a mechanical valve and begin with coumadin.

 

[dick0236]

I was only 8 years older than you when I was told that my aortic valve needed to be replaced. Back then, only the mechanical valve was on the market, so I didn't have to worry about "my choice". In my case, the "mechanical valve" was THE best choice. The valve has not interfered with my life or activities. I have had to modify my life only slightly, if at all. In my opinion, having only one surgery has been the real "plus". Hopefully, my valve will "last a lifetime", as advertised....and, so far so good.

ACT can be a "pain in the A--" sometimes. However, IF warfarin is taken as prescribed and tested regularly, most people have few problems. Dealing with warfarin is kinda like flossing your teeth. You just have to get in the habit.

To be told as a young man that you need "heart surgery" is a bitch. What you will find is that many have gone through it and came out the other side very successfully. Regardless of your valve choice, the surgery will add to the quality of your life....as well as the length .

Welcome to this forum.

 

[ALCapshaw2]

In the Mechanical Valve Field, the St. Jude Master's Series Valves hold the record for durability at 30 years and counting. See www.sjm.com for more information.

If you would like the Latest in Technology with Reduced Risks of Clotting, Lower Damage to Blood Cells, and reduced (maybe permanent) freedom from Pannus Tissue Growth impingement, see www.heartvalvechoice.com and www.onxvalves.com On-X valves have been available since 1996 with over 70,000 now in service.

 

[ejonbry]

I'm 38, I personally chose the ON-X valve because I hope to never do surgery again. Another good reason is the hope of one day lowering or eliminating the dosage of coumadin. Although I will say coumadin is not so bad. Good luck with your choice and just remember, you have to be happy, so whatever works for you, that's the right choice.

 

[Megan]

hey welcome! i was 20 and had my bad bav reopened (valvuloplasty) then a bovine pericardial valve when i was 29. today im 38 and facing my 4th ohs! ugh. luckily i did well thru all of the surgeries but im still not happy to repeat. the on-x sounds pretty good to me but so does the st jude- i have to meet the surgeon and see what he says first! im new too so feel free to bounce ideas off me!

best
megan

 

[ajay_22_86]

Thanks to everyone who posted and for the welcomes!

This site is definitely reassuring in the build up to surgery.

The type of mechanical valve has not even been discussed with me. I suspect this might be differences within the British healthcare system and American, not sure though. I was contemplating having a homograft first and then when that degraded have a mechanical valve. This would allow for around 10 years of healthy lifestyle and not taking Warfarin.... But the idea of a second ohs does seem daunting. I was told that a second operation would be more complicated because of scars etc.

Hm so much to take in! The main issue I have with mechanical valves is the impact it will have on my life. I would be terrified of just slipping and getting a knock on the head!

 

[Joecb]

Welcome Ajay. I had the same problem at age 17. My cardiologist felt that mechanical was the only sensible way to go and I agreed. I have taken coumadin/warfarin for the last 20 years and it hasn't been that big of a deal. I have been on the same dosage for at least the last 15. Don't let all of the coumadin talk scare you or convince you to go with the tissue valve. In my opinion, a mechanical valve at your age makes more sense unless you are a professional football player or boxer. Good luck with the choice that makes the most sense to you.

Joe

 

[Karlynn]

Someone can correct me if I'm wrong, but I think at 22 if you want a tissue valve, your better chance for longevity (hoping for 10 years) would be with a bovine or porcine valve. But I may be wrong.

 

[briansmom]

Like others have said, your opinion is the most important, but I will relate my decision for my son.

My son was 16 and his docs all but demanded a mechanical valve. My son was an off-road motorcycle racer before his surgeries so we were/are worried about the anti-coagulants. We chose an On-X valve with hopes that the no or low anti-coagulant trial will become permanent. My son home tests which I highly recommend. Unfortunately, he has permanent heart issues that keep him from racing motorcycles, but he still drives an off-road car. He has been on ACT for 2 years and so far so good.

I'm sorry you have to go through this at such a young age, but your age will also help you recover and go on to lead a normal life.

 

[Ross]

Hm so much to take in! The main issue I have with mechanical valves is the impact it will have on my life. I would be terrified of just slipping and getting a knock on the head!

Your not the first person nor will you be the last, that's come in here with those exact same thoughts. Fact of the matter is, use common sense, wear protection at times you normally would anyway, and live your life. It hasn't stopped very many people that I know of. Robthatsme is still using his chainsaw, I'm still cutting myself all the time working on whatever around the house, people in the lifestyles forum are doing everything from snowboarding to Tae Kwondo. Well, I think you get the idea. It's truly a shame that so much myth and bloated stories are told to those not on the drug. I've heard enough of the garbage that I could write a book about the things we've heard in here since 2001.

 

[geebee]

Hm so much to take in! The main issue I have with mechanical valves is the impact it will have on my life. I would be terrified of just slipping and getting a knock on the head!

Just for the record, I have been on coumadin for over 28 years (half my life). I have changed nothing in my life. Over the years I have been an on and off road motorcycle rider, sailboat (27 foot) racer, scuba diver, etc. This has all been with an INR range of above 3.0 (once INR came into being - prior to that we used PTR which was of questionable accuracy). A couple of years ago I missed a chair and hit the back of my head on my desk with my full weight behind it (and I am not a small person ). I had a huge knot and a headache for a couple of days but never had any other issues. My INR at the time was 4.2. I am not saying people don't have problems sometimes but usually life is not altered by coumadin nor does it need to be.

No point in going through all this just to exist - the point is to live and have a great time relishing survival.

 

[Woodbutcher]

Hi Ajay,
I'm in the Uk too and had a new valve implanted a few months ago. You're right about probably not being given much choice with regards which mechanical valve to have here in the Uk. I chose the On-X after my own research and deciding it was the best option for me, I then found out which surgeon would likely be taking on the job and then emailed him directly asking if he'd consider using that type of valve ? It wasn't the one he had in mind for me and more to the point not on the shelf either ! Anyway after some wrangling he pushed for the hospital to buy me one in as a special case. So it can be done if you know what you want, just ask for it in advance.
With regards ACT, I've been using Warfarin now for 12 weeks or so and I'm getting used to it. It's not too much of a bit deal, I'd rather not use it of course, there again I'd rather not have had a dicky heart in the first place ! I've not allowed it to change any of my activeties though or what I eat or drink either. I'm just aware of it and take a little more care. So, when mountain biking which I do every day, I wear a bike helmet, mind you most people do these days I just never did before! When I start surfing again soon I'll wear a helmet then too.
Good luck with everything.

 

[jnskinn]

I came on this site yesterday and this is my first response. I am a 23 year old male living in North Carolina. I was diagnosed with Bicusp Valve in 2003, mine was regurgitation. I did multiple procedures, one was the David procedure (I believe), they attempted to repair my valve but was unsuccessfull. I opted for a Porcine valve(tissue valve/usually from a pig). I am exacly 4 years out of the surgury and my immune system has destroyed this valve. I will be undergoing another operation for a mechanical valve By this summer. I AM NOT SAYING THAT THIS WILL HAPPEN TO YOU. Thats just what happend to me. Being relatively young is s challenge to make the right decision because you do not want to change your lifestyle. I have come under the realization that you need to look at this situation as "what will be the best choice for me not only now but down the road" instead of "what is the option that is more convieniant for me and my lifestyle now". I am going to be on blood thinners for life and that was a hard fact to face with all of the limitations at my age and considering how athletic i like to be. The point that i want to make to you, as a person who has had several operations, is to talk with your doctors about the pro's and con's of each option. This is important to consider each before going into the procedure and not to make a decision without all of the facts. The more options the more difficult. I do hope that your operation goes well and wish the best to you. If you ever want to talk just email me, but i hope you make the decision that is the best for you.

 

[Ross]

I came on this site yesterday and this is my first response. I am a 23 year old male living in North Carolina. I was diagnosed with Bicusp Valve in 2003, mine was regurgitation. I did multiple procedures, one was the David procedure (I believe), they attempted to repair my valve but was unsuccessfull. I opted for a Porcine valve(tissue valve/usually from a pig). I am exacly 4 years out of the surgury and my immune system has destroyed this valve. I will be undergoing another operation for a mechanical valve By this summer. I AM NOT SAYING THAT THIS WILL HAPPEN TO YOU. Thats just what happend to me. Being relatively young is s challenge to make the right decision because you do not want to change your lifestyle. I have come under the realization that you need to look at this situation as "what will be the best choice for me not only now but down the road" instead of "what is the option that is more convieniant for me and my lifestyle now". I am going to be on blood thinners for life and that was a hard fact to face with all of the limitations at my age and considering how athletic i like to be. The point that i want to make to you, as a person who has had several operations, is to talk with your doctors about the pro's and con's of each option. This is important to consider each before going into the procedure and not to make a decision without all of the facts. The more options the more difficult. I do hope that your operation goes well and wish the best to you. If you ever want to talk just email me, but i hope you make the decision that is the best for you.

Now that sucks. One thing though, everyone has this huge misconception of anticoagulants. They've heard so much myth and bullcrap that they are scared to death of it and it's simply not that way. Very few people stop any part of their active lives. Go take a look in the Active Lifestyles forum. People on ACT are doing things as they always have. Just use common sense, wear protection when you normally would anyhow and live your life. Hank went skydiving(Just so you know, had the people running the skydiving school known, they would not have let him! The point being is, Coumadin didn't stop him from doing what he wanted even if the school would have) without a helmet I might add, some people snow ski, snow board, water ski, Tae Kwondo, Mountain bike, the list goes on and on, so don't fall for that so called, I'm going to be placed in a rocking chair and fragile as an eggshell crap that so many people try to tell you. It's just not true.

 

[sheridan07]

Now that sucks. One thing though, everyone has this huge misconception of anticoagulants. They've heard so much myth and bullcrap that they are scared to death of it and it's simply not that way. Very few people stop any part of their active lives. Go take a look in the Active Lifestyles forum. People on ACT are doing things as they always have. Just use common sense, wear protection when you normally would anyhow and live your life. Hank went skydiving (Just so you know, had the people running the skydiving school known, they would not have let him! The point being is, Coumadin didn't stop him from doing what he wanted even if the school would have), without a helmet I might add, some people snow ski, snow board, water ski, Tae Kwondo, Mountain bike, the list goes on and on, so don't fall for that so called, I'm going to be placed in a rocking chair and fragile as an eggshell crap that so many people try to tell you. It's just not true.

I agree with Ross. I am trying to be a state trooper while I am on anticoagulants. The doc said ok to it after I have rehab and and that. I am not ended my life because I am on them. Just be smart at what you do.

 

[Cooker]

I would vote mechanical for the hope of no other replacements .... ACT is not an issue for me one bit .... This is and always has been a hot topic but remember, it's your decision ... At 22 I don't think there is any doubt that you will need other surgeries if you go tissue and you do not not know the future or what your health will be like in years to come .... just my 1 1/2 cents .... Good luck and Godspeed.....