Choosing valve with active lifestyle and being 21

[Elcarim]

I had a stentless porcine aortic valve put in to replace my own valve when I was 22yo. This decision was made to allow me to have trouble-free pregnancies. I expected that I would have 12-15 years with my tissue valve. I had my two kids at 3 and 5 years post-op, and when my youngest was 8wo I was told that the valve was badly worn out and needed replaced again...

I felt very ripped off. I expected to be closer to 40yo than 30yo when the next surgery came along. But within a few weeks I had a mechanical valve put in. There were a few complications after the surgery, mainly that a nerve was damaged and I ended up with a pacemaker as well. It was all incredibly traumatic.

Had I been male I am sure they would have suggested that I go with a mechanical valve from the start. Every time they go in you risk complications. After you have that first op you don't ever want to go there again.

I ride horses, and I have a fairly physical occupation. I am very guarded about my pacemaker and I run for the ice packs if I get a knock that will probably bruise, but I haven't really made any lifestyle changes. I am not into contact sports, but horse riding is considered to be up there with mountain climbing and skydiving in the dangerous stakes. I own a stallion and handle young stock. I showjump and trim hooves. And there is a chance that I will never need another OHS.

That is my experience. Obviously there is no clear winner in the tissue/mechanical debate. If there was it would be easy. But I was of the understanding that anyone under the age of about 50 going for a first AVR was recommended to get a mechanical valve in the hope of avoiding re-dos.

 

[Bridgette]

I'm glad I went mechanical because I would NOT want to have to go through OHS again - going mechanical maximises my chances of avoiding a re-op.
I'm 44 now, and was 43 at the time of my operation. Prior to surgery, my surgeon said he would not put a tissue in me because of my relatively young age and because it would not last more than 12 years max...
I know that some members here found the surgery to be a "breeze" and are confident about doing it again when the time comes but that was not the way it was for me. I had post op complications with pericardial effusion and cardiac tamponade - the whole thing was a bit of a nightmare really, and I remember saying to my mother, as I was waiting to go into surgery to get the fluid drained, that I wished I had never had the valve replacement to start with - that was how sick I felt

However , this is only MY personal opinion and experience, and I would never give anyone an ear bashing about what type of valve to get - you have to do what you feel is right for you, and I totally respect everyone's personal valve choice/decision.

Bridgette

 

[Lisa in Katy]

When I was 14 and was told that I would need a valve within 4 years, my pediatric cardiologist explained that the valve would come from a pig. It wasn't a choice of mechanical vs. biological, it's just that mechanical valves were still "new" in 1976, and the ball and cage design had drawbacks for a young person. He did mention that the more active you are, the quicker the valve will wear out, as the increased heart rate puts more stress on it.

My brother had his BAV and root replaced when he was 28. He went with a mechanical. That is actually the only thing that his surgeon would agree to because of the aneurysm. He was and is quite active - skiing, biking, scuba diving, etc.

 

[thecoolkid17]

Bad Mad,

yes he has every intention of fixing the aorta and putting in a new one, there was not much discussion on it because that is the whole reason for surgery at this point. My valve itself is not bad, its not stenotic or acting up or limting my activities by any means. The whole purpose of the surgery was to replace the aorta but he didnt want to wait, nor I, to whenever the valve decides to kick the bucket. Since he was going in already, it seemed the best option to go ahead and replace the valve in one shot while im healthy and have no other complications. So we will see in another week whatelse he has to say when i meet next tuesday. And first thing up is what type of surgery it will be and how he does it.

Thanks again for all the stories and please continue to give more information it truely makes the world of difference

Luke

 

[Karlynn]

I think we have a few members who had the aorta fixed without replacing the valve. Anyone remember the member names? I'm not sure I would personally be comfortable with that choice without knowing that my surgeon was one of the foremost BAV surgeons in the country. You want someone who really, really, really (did I say really enough?) knows their BAV's in order to accurately assess that.

I also am confused with the surgeon's support of tissue valves for young people if he's wanting to replace your valve along with the aorta in order to avoid surgery again. But this is also like the telephone game. You hear what the doctor says and then turn around and report it to others. I'm sure things get lost in translation.

If he hasn't assessed this for you already, I would ask him how long he sees your native valve lasting. If he believes you have more than 5 years of active living with it, it would seem that a logical choice would be to leave it and then face the valve choice decision when you are older and your life style and view of life have gone through the changes that come with the 20's. He's already recommended a choice that will require more surgery for you.

The 20's are most people's biggest time of change (They certainly were for my son, 21-single and care-free, 22 father, 23 husband, currently 24 and house-hunting, and probably another child before he's 28.) His view of life and how it affects his decision making has changed significantly in 3 short years.

 

[sknydave]

Didn't the aneurysm form due to the valve insufficiency in the first place? Leaving the valve makes no sense to me?

 

[Karlynn]

I'm thinking that we had a member just recently who's surgeon left in a "perfectly good functioning BAV" when doing the aortic aneurysm surgery. But maybe it wasn't as recently as I thought. Time flies when you're having fun.

If the valve is showing signs of insufficiency, then you probably should replace it, regardless of whether you're having symptoms (The body can do a pretty good job of masking symptoms - particularly the younger you are.)

Has your doctor reported issues with the valve itself - or is the major concern only the aorta?

 

[thecoolkid17]

The major concern was the aorta, according to my med surge text book and wikipedia.org, when there is the BAV, the tissue in the aorta is also faulty and more prone to dilating, its all wrapped in one nice package. Therefore my valve right now is "leaking" back into my left ventricle, my cardiologist didnt say anything to me about it, but I read on the ECG when he left the room, because im a nursing student and curious, that my LV was slightly enlarged due to that. So with the leaky valve and aorta dilating, its a good time for surgery for both.

I completely understand your post about leaving the valve in, it does make sense from some stand points. Im just not completely sold on the mechanical valve for a variety of reasons.

About the valve sparing and repairing, my cardiologist explained it to me and made complete sense. If you take your old valve and go in and start making incisions and repairing it, you are cutting the tissue, creating room for inflammation and infection inside the valve. The more you cut and repair, no matter if its the best job in the world but the A list guy, it still wont last as long as a "virgin" valve. The donor tissue valve has no cuts inside it, which is where the calcification and stenosis occurs. So one is better off with a valve that has NO cuts or tears on the inside.

Again this is just one medical professions stand points, personally i agree with it and think that a virgin valve would be better off than repairing one.

 

[ruth]

Hey Luke,

Just wanted to drop in and welcome you to the forum. Quite an entertaining and informative thread you've got going here. Are you SURE you are only 21? You sound a bit more mature than that!

I had one of the various forms of "minimally invasive" called a right thorocotomy. It is a between the ribs incision on my right chest just below the breast. Now, my surgeon said that the right side is the best way to get to the MITRAL valve so for all I know, it's different for Aortic. There are different approaches that surgeons call "minimally invasive" so it's good to get a grip on what exactly they mean by it. The downside of my incision was that they had to cut through the chest muscle but the upside was they didn't cut the sternum. Now, I'm not a big strapping guy or anything (actually I'm a 40 something mother of 2 big strapping teen boys - lol) so any potential loss of chest muscle strength wasn't a biggie for me. All I really cared about was getting back enough strength to change gears on my manual shift car. Oh, first car, 8K for a Honda Accord -1981, one year out of college for me - also a stick shift - no way I'd pay the extra 600 bucks for automatic.

I wish you all the best in your decision and surgery.

Peace,
Ruth

 

[Guest]

...a virgin valve would be better off than repairing one.

*chuckles*

Holy crap ... a virgin valve and being one ... dangumit ... double jeopardy for me!

*pauses*

I'm kinda shocked with this group nobody raised an eyebrow on this before. he he.

Reminds me of one of the last trips we took as a family (Mom, Dad, sis and I) ... we were on our way to Nashville and stopped in a restaurant along I-65 in southern Indiana (or Kentucky, perhaps). Anyway, during the conversation, Mom and my sis were talking about studs (ya know, those things that go in ears in place of earrings) ... AND my sis was talking about virgin drinks. We had a good laugh at the weird "Studs and Virgins" conversation ... he he.

All I really cared about was getting back enough strength to change gears on my manual shift car. Oh, first car, 8K for a Honda Accord -1981, one year out of college for me - also a stick shift - no way I'd pay the extra 600 bucks for automatic.

LOL! But, Ruth, do you still HAVE your first car? I do .

*pauses*

But it ain't a manual.....he he.



Cort:34swm."Mr Monte Carlo.Mr Road Trip".pig valve&pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Your friends have shown a kink in the single life" ... The Raconteurs ... 'Steady As She Goes'

 

[Karlynn]

A thread mentioning cars and words related to sex (or lack of).....I figured Cort would show up sometime!

Yes - if your valve is leaking - might as well.

Luke - if some of your apprehension with mechanical has to do with Coumadin, can I recommend that, as a nursing student, that you do a lot of research on the drug, particularly here with those of us that have used it for years. Not to convince you to choose a mechanical, but to educate yourself as someone who will be in the medical field. There is so very much misinformation and old myth and falsehoods that are still held as current knowledge by so many in the medical field. We often say here that the worst part of having to take Coumadin is dealing with a medical community where many of it's members don't care to bring themselves into the 21st century in it's protocol. We read a lot of bad information daily - and some given by people who should know better such as doctors, surgeons and lab techs. You would not believe the bad information that med students are still getting about the drug.

Please spend some time on the Anticoagulation forum reading the stickies and viewing the links to videos. If not for you, but for US! We need every person we can get in the medical community to have correct working knowledge of the drug.

 

[lieb2101]

I'm sorry to the crowd if I mention something that has already been discussed or argued but I didn't take time to read through the 4 pages of this thread.

I did want to contribute my story about my selection process however.

I'm 29, and I was born with a uni-cuspid aortic valve. I'm a bigger guy and very active on top of it (snowboard, mountain bike, etc...)
I ended up going with the freestyle full root pig valve.
The doc drew out a timeline of re-ops along with risk percentages involving lifestyle and operations.
Just by looking at the numbers, I had a significant mathematical advantage to choosing a tissue valve. This is due largely to my activity level and the fact that I am accident prone, usually in remote locations (mountain tops?).
I'm happy with my choice and at 7 weeks post surgery, I can see the light at the end of the tunnel.
Hopefully, by spring time next year, I'll be dragging my wife across mountain ranges and not the other way around like before

PM me if you want any details on my valve or selection process.
Whatever you choose will be right for you.

Best wishes,
Brian

 

[thecoolkid17]

Oak tree,

both my cardiologist and surgeon have both predicted the porcine valve would last 10-15+ years, I know there is a lot of skepticism about that number especially given my age and everything, but I do know the advancments have vastly increased in the past couple years so someone who had a tissue valve put in ten years ago and it went bad in eight had a much different experience than im hoping to have.

If my surgeon repaired the valve, he gave it 8 years top, because the inflammation would settle in and be a culture for calcification to start immmediately. I just can't see myself getting a mechanical at this stage and setting my limitations for the rest of my life just yet. I feel like im planning the rest of my life at age 21, and honestly Im too young for that, I recognize this and still want to be like the rest of the herd and do what 20 something year olds do.

And i more than appreciate everyones imput and still will take any advice and stories because the most informed decision is always the easiest.

Another question, best vacation spot? a place that you have been to

 

[briansmom]

Best Vacation Spots - maybe this should be on a new thread.

Ok, my list is long, but if I had to narrow it down to just a few:

1 Northern Spain - Probably the most beautiful place I've ever been, great food, great hiking, road that are really fun to drive.
2 Dirt bike riding in the mountains of Nevada/Utah and Idaho. You can ride for hundreds of miles and never see another person. You do however get to see herds of wild mustang, antelope etc. and some of the most beautiful scenery in the US.

 

[andrewg]

I'm sixty, and had an on-x installed last June 21st, and was taken off coumadin & put on Plavix & a baby aspirin this past September (I'm in the FDA study).

I've had no problems so far, & feel great.

For you younger guys, I'd consider this approach.

 

[MikeHeim]

andrewg-
Great to hear from you and it's good to hear that things are going so well! Can I ask how often you are monitored (echo, etc.) an how your results have looked?

all-
Is there someplace we could have Andrew give periodic updates on his progress in the study? His inclusion in the Coumadin-free ON-X study is perhaps one of the most interesting things going on for this site, and of course has enormous ramifications for virtually all of us.

 

[Susan BAV]

Ditto...

Ditto...

all-
Is there someplace we could have Andrew give periodic updates on his progress in the study? His inclusion in the Coumadin-free ON-X study is perhaps one of the most interesting things going on for this site, and of course has enormous ramifications for virtually all of us.

Mike, can I echo your good idea? Oh, I just did ...

 

[Karlynn]

Mike, can I echo your good idea? Oh, I just did ...

Me three - you are a true brave pioneer Andrew! It's because of people like you, willing to step forward, that all of us are alive because of valve replacements.

 

[Superbob]

andrewg-
Great to hear from you and it's good to hear that things are going so well! Can I ask how often you are monitored (echo, etc.) an how your results have looked?

all-
Is there someplace we could have Andrew give periodic updates on his progress in the study? His inclusion in the Coumadin-free ON-X study is perhaps one of the most interesting things going on for this site, and of course has enormous ramifications for virtually all of us.

If Andrew were agreeable to this, I certainly second (or third or fourth) the idea. I think the FDA study is indeed of interest to virtually all of us....

 

[andrewg]

Yes,

I'd be willing to keep you informed.

I get an echo every six months, and should have one coming up next month.

Then it's the usual tests that go with taking a statin, kidney function, cholesterol, etc.

I did have a scare earlier this month when I noticed numbness in my right arm and fingers.

After consulting all the players and being examined by my primary care doctor, it turned out to be a bit of tendinitis and some carpel tunnel, nothing cardiac related. I had been splitting fire wood with an axe the weekend before and that's when it flared up.

As for background on my condition, I first had a triple bypass in 2004, right after I had lost approx 50 lbs on the South Beech Diet. I developed angina pains, which triggered all the tests and diagnosis.

Before that, I violated all the rules and had every risk factor, i.e. ate wrong, smoked from 21up till 38, high stress job, overweight, etc.

After the bypass, I stayed with the diet, and read Agaston's book (South Beach Diet author) on heart care, and have been following that regimen since.

I did have a bicuspid aortic valve which was functioning properly when I had the bypass, so they left it alone.

Three years later, I developed stenosis on the valve, and was told the valve needed to be replaced.

The first step was another catheter procedure, which confirmed the valve's condition, as they could not get the catheter to pass through the valve.

A week later I met with my surgeon, selected the on-x, had the surgery, and got a nice 8 week summer vacation.

So that's how I got to where I am now.