Choosing valve with active lifestyle and being 21

[Karlynn]

Someone mentioned a bruised penis after sex when being on coumadin and that almost makes me say "no freaking thanks" to mechanical. My wife is hot so no way can I cut that part out!! LOL!!!! Seriously.

This was a first for all of us. You can imagine the fun we had with that post. Not a laughing matter for the member who posted it, but caused most of us to wonder if hammers were involved. I would say if that is your concern, it doesn't need to be.

 

[Ross]

This was a first for all of us. You can imagine the fun we had with that post. Not a laughing matter for the member who posted it, but caused most of us to wonder if hammers were involved. I would say if that is your concern, it doesn't need to be.

Sounded like some BDSM stuff going on there to me! I know it was a first.

 

[dick0236]

That's really funney. "Been there, done that...no problems". I agree with Karylin, hammers must have been involved.

I'm not braggin'....... I still have menories

 

[sknydave]

I almost spit out my gatorade onto the screen when I read bruised penis

 

[Karlynn]

I almost spit out my gatorade onto the screen when I read bruised penis

I think someone actually did when they read the thread it was first mentioned on!

 

[Cooker]

Bruised penis?.Boy do I ever have a zinger??but no way?.I am LMAO and I just can?t bring myself to type it in.

 

[briansmom]

Luke,
My son was only 16 when he had his valve and ascending aorta replaced. He used to be a off-road motorcycle racer, snowboarder, etc. His dissection was not diagnosed until after he had a major heart attack so he still has health problems in spite of his valve being fixed. Our surgeons told us that a tissue valve would last anywhere from 1-7 years in someone his age. Because of his other heart problems they also did not recommend a ross. we chose the On-x for the possibility of low anti-coagulation. You can see from the picture that my son still enjoys off-roading, it just requires a level of maturity that most young people do not want to adhere to. IMHO, because of your age you are not a candidate for a tissue valve, but do the research on the ross procedure and also check out the On-X site. Also read through some of the posts on the active lifestyles forum, most anti-coagulated members still lead active lives. Again, IMHO you could still skydive because really if you get hurt sky diving is it going to matter if you are anti coagulated or not? I don't think that jet skiing (my son does it) would be a problem and I know that there are many members that still ski.
Anyway, there is my 2 cents and remember that whatever decision you make will be the right one for you.
Best wishes, please keep us posted.

 

[CHDDoug]

Something to consider...

Something to consider...

First, I'll echo what quite a few have said about tissue valves. At age 21, you'll be lucky to get 8-10 years out of a tissue valve before before re-op. I'm 33 years old and just had aortic valve replacement surgery 4 weeks ago. I was told that tissue shouldn't be an option at my age due to how soon it would wear out. They do have stentless porcine valves that have become popular and last a little longer, but would still be looking at re-op 10-15 years (from what I was told).

Quick bio on me...as I said, I'm 33 years old. I'm very active. I run, lift weights, hunt, ski (water and snow), do manual labor for a business that I own on the side, etc. You get the picture...very active. I'll give you the same 'advice' (if you want to call it that) that I gave Dave. If I wanted to maintain an active lifestyle and hope to not have re-op in 8-15 years, then you might consider the Ross procedure. I just had the Ross done 4 weeks ago for those very reasons. Theory is, if you get 10 years out of the Ross, then you should get 20-25 years (or even longer possibly) before re-op. This came from 3 top notch surgeons that perform alot of Ross procedures. I went with Dr. Ryan in Dallas, TX and I was very pleased with my choice. I'm not trying to sell you on the Ross procedure, but given your inquiry, I felt obligated to at least tell you about it so that you could consider it.

If you have any questions regarding anything, please feel free to pm me. I'd be happy to email you or talk with you anytime.

Take care and good luck with your choice!

 

[Bina]

Hmmmm, I may just be speechless....it doesn't happen often.

 

[WayneGM]

I don't have any advice on valve selection as I had a repair. However, I wanted to welcome you to the site. The many helpful people here. At the end of the day, I don't think there is a wrong valve choice if you make an informed choice you are comfortable with. Best wishes and good luck.

 

[thecoolkid17]

Decisions

Decisions

Yeah im still definitely on the fence now, i saw my cardiologist today and he is on the opposite spectrum and thinks the pig valve is the best option for me right now and will last a solid 10-15 years because of new improvments. Also to get the quality of life. I may be naieve to say this now not having gone through the surgery yet, but i would rather have another one done in 10 years, because I dont really want to have to think, will my heart allow me to do that? Is that contraindicated with the coumadin? What will happen if i do this?

I have a friend through my cousin who had this operation done 9 years ago while he was in high school, he wrestled played other sports and still has the pig valve and has had no complications and the valve is working just as well as when it was put in, so I believe its longevity is from person to person like any other transplant.

I understand what people say about quality of life and being smart with the blood thinners but, right now, Im too young to want to think about that, I would rather not have it on my mind, every morning when i get up and take the pill i would be reminded of my restrictions. And the pig valve i would have is not straight from the pig, from my understanding, and im seeing the surgeon on the 25th to clear up any concerns, it is one that has been altered for longevity purposes.

As far as the low invasive, he said that he would not have to break open my chest and would only need a 4-5 inch incision next to the sternum to operate. Im not sure if any other surgeons are doing this or what the new thing is, but it sounds alot better than breaking my chest open.

As right now, i still am not stuck on one or the other but more than appreciate hearing all of your stories and this forum is the best thing since sliced bread (quote from my dad). And appreciate more and more advice.

Ill keep you all updated.

P.S. if going in for a cardiac cath, make sure you have fat down in groin, im sore one week after because i didnt have enough, and i bruised and walk like I have a stick up my ass lol

 

[Blanche]

Briansmom made an excellent suggestion. Have you checked-out the Active Lifestyles and Cardiac Rehabilitation Forum on this board? There you will find people who have had surgeries and continue to enjoy their active participation in such things as biking, running in marations, marshal arts, and other sports.

I truly believe that some of the posts on "Active Lifestyles..." will give you many positive things to consider.

Regards,
Blanche

 

[sknydave]

The only guarantee is there are no guarantees. If things go perfectly the tissue valve *could* last 10+ years... But what if it's on it's way out in 5? Would you be ok with that?

 

[Karlynn]

The only guarantee is there are no guarantees. If things go perfectly the tissue valve *could* last 10+ years... But what if it's on it's way out in 5? Would you be ok with that?

This is an excellent way to look at it. If you can say that you would accept having to have a replacement again in 5 years (hope for the best, prepare for the worst scenario) than that will help you with your decision.

I dont really want to have to think, will my heart allow me to do that?

This is not a mechanical valve issue. A mechanical will perform and give you the same abilities as a tissue valve. You are right - there are some things you will have to pause and think if Coumadin contraindicates that activity - but the reality, that list isn't very long. (check out Mtkayak's posts) Binge drinking is one of them - and at 21, if you're a partier it's something you won't be able to continue to do on warfarin. But any valve replacement should instill a desire to eat and drink as healthy as possible to maximize the abilities of your valve.

I would not look to any valve replacement to allow you to live pedal to the metal and forget about being a person with a valve issue. Whether you want it to or not - this experience is going to cause you to think a little older than your years - and that's not a bad thing.

What valve did your friend's cousin have replaced? If it's not the aortic valve, then you really can't use his experience to judge what your future holds. The aortic valve is the work horse of the 4 heart valves. A tissue valve in the aortic position will not last nearly as long as a tissue valve in the pulmonary or tricuspid position. (In the Ross they put a tissue valve in the pulmonary position because it may not wear out.)

There's lots for you to think about. Your doctor seems confident with the porcine as a choice for you. I'm not sure I buy the 10-15 year projection - but follow Dave's suggestion and that will help you make a choice.

 

[South Sound Sailor]

Interesting thread! Oh to be 21 again... but I guess that's NOT what this discussion is supposed to be about!

OK, so the politically correct thing to do on vr.com is to NOT try to encourage anyone on valve choice. It has to be a decision made between the patient, surgeon and cardiologist. But more and more it appears to me that patients are becoming very pro-active and empowered to make the valve choice decision and ultimately, for many of us when making that BIG decision, we're going to listen to what others have to say.

That was 100% my case. I picked the On-X valve for several reasons, most of which have already been stated in above posts. And then I picked the surgeon in my area who has the best experience (IMHO) at implanting the On-X. I was a marathon runner prior to surgery and fully plan on returning to that lifestyle (and with an OK from my surgeon, I started running again this week at the 5 week post-surgery mark). I'm fully convinced that I have both a high-performing valve that will allow me to return to high mileage training and a valve that will last me many, many years (of course I'm quietly hoping it's the ONLY valve surgery I'll ever need!).

Final icing on the cake, I'm participating in the On-X clinical trial and I'm very hopeful I'll be selected for the Plavix/Aspirin study group which means no more Coumadin and blood tests (selection is made 3 months post-surgery). If not selected, I'll still get some benefit from the home-testing equipment that I'll receive.

My very humble 2 cents worth of opinion... good luck with your decisions!!

Steve C.

 

[thecoolkid17]

This is an excellent way to look at it. If you can say that you would accept having to have a replacement again in 5 years (hope for the best, prepare for the worst scenario) than that will help you with your decision.



What valve did your friend's cousin have replaced? .

Yeah it was his aortic valve that was replaced with the aorta as well. Different surgeon but same procedure. It seems i have heard from almost everyone suggesting the on-x valve but have not heard from anyone who has the pig or bovine valve and was wondering on how long they have lasted in their cases?

And for having the surgery in another 5 years worst case scenario? Thats more than the million dollar question, but yeah I could. I just ask everyone to look back to when they were 21? Where were you at in life? How much was gas a gallon? Now breath again lol

Again I know its naive to look at life this way, but I want to live in the now, I care about life 30-40 years down the road, but Im not even that old yet so its kind of hard to look at life that far down the road. New and newer technology is coming out and my surgeon is very confident my next surgery would be my last and be very low invasive. Already he is not having to break my sternum, so thats a huge plus.

All in all, Im still deciding and MORE than appreciate everyones views and stories because they more than help with my ultimate decision and I know on the 25th im going to have a load of questions to ask my surgeon.

Luke

 

[Susan BAV]

...It seems i have heard from almost everyone suggesting the on-x valve but have not heard from anyone who has the pig or bovine valve and was wondering on how long they have lasted in their cases?...

Luke, I received a porcine valve nearly five years ago. I'm happy with it. But I don't know how long it will last. Reportedly, it wouldn't last as long for you as it would for me; and reportedly it won't last as long for me as it would for a 65 year old patient. So tell your surgeon how you're feeling. Tell your surgeon your thoughts about each aspect of valve surgery. Then you could ask your surgeon what he would want if he were in your shoes. And you could ask him what he would recommend his son get. And don't be afraid to keep asking your questions, of other valve patients, and of cardios, and even of more than one surgeon.

 

[Ross]

To be perfectly honest, I don't know of anyone your age where they went with tissue. It's either been Ross procedure or Mechanical. I'm for anything that is going to keep you out of surgery again or at least minimize that chance.

The thing with heart surgery is, everyone is different and has different outcomes. Most outcomes are great, but there are also those that are not so great. No one knows what yours will be like until it's done. If you have a great outcome, then your not likely to think to much of anything further, but if you have a poor outcome, You might not like what you have selected. I just want you to think of the big picture overall, not just the valve, but what this surgery is going to do to your entire life.

 

[Karlynn]

That's great that your friend's cousin has an aortic replacement and it's doing well. But did you have to get all nasty and bring up the cost of gas back when I was 21???? I think it was about $1.25/gal.

 

[thecoolkid17]

Luke, I received a porcine valve nearly five years ago. I'm happy with it. But I don't know how long it will last. Reportedly, it wouldn't last as long for you as it would for me; and reportedly it won't last as long for me as it would for a 65 year old patient. So tell your surgeon how you're feeling. Tell your surgeon your thoughts about each aspect of valve surgery. Then you could ask your surgeon what he would want if he were in your shoes. And you could ask him what he would recommend his son get. And don't be afraid to keep asking your questions, of other valve patients, and of cardios, and even of more than one surgeon.

I did ask my surgeon and he said if it was his daughter who is four years younger than me and plays soccer, my surgeon is from the same school district so i know his daughter, he would put the porcine valve in her. He said this without blinking, he showed me the mechanical valve but he never really considered it an option, nor did my mom, and honestly either did I until I came onto this forum and heard all of your testimonials, which have been more than helpful in deciding. But time will tell.

And sorry karlynn for bringing up the gas but it shows how much time has changed, hell it was $1.30 when I started driving lol you did save laughter is the best medicine