choices of biological valves

[Enudely]

Hi all
My surgery is inching closer and has been tentativally set for February!!! (So close.... but SO FAR AWAY!!!)
I am 24 years old and getting married this summer. I very much want to have kids, so my valve selection is a "no brainer". I will have to go with the biological valve and have another surgery in 8 or so years! (these things calcify faster when you are young )
What I am wondering is what are my choices for the biological valve? I know there is pig, bovine, homograft, ect.. but I don't know the differences. Of course, I know I will have to talk to my surgeon (who I have not met yet) but I want your expert advice as well!
Also... I keep thinking that maybe in 8-10 years, when I need my other surgery, technology will be so advanced that they will only have to point a laser at my chest or something!! (o.k, I'm exageratting, but you know what I mean!) Also, I'm hoping some alternative to the "Coumadin Nightmare" (that you all emrace so lovingly!!) will have been developed! Do you think I'm crazy to think (hope for) these things!!

 

[JimL]

I have a mechanical valve, and that's the only one that's ever made sense for me.

But your post makes a strong case for the biological. You would have the surgery, have kids, and then face the decision again.

I look forward to seeing the baby pictures posted on this site!

 

[RCB]

"No Brainer"

"No Brainer"

Removed for janie- good bye

 

[Enudely]

Well, the truth is, I've wanted to have kids my entire life! I would be completely heartbroken if I was told that I could not go through a pregnancy!!!! I know that I will need another surgery in 8 or so years but to my that's worth it to have time to have some kids. I know the pregnancy(s) will still be "High risk" but I'm willing to take it. I was told that you can have children easilly with a biological valve and that it's "no problem"
I was also told that with a mechanical valve, you have to GO to the hospital TWICE a DAY for NINE MONTHS to get an INJECTION of some anti-coagulant that does not go through the placenta.
To tell you the truth, even without the pregnancy thing, I'm just not ready for the mechanical valve. I'm only 24 years old and don't want to take coumadin yet!! I know that I will have to come to terms with it sooner or later... but I would rather go through another surgery than face the idea of taking toxic poison every night/monitoring my Vit. K/ bleeding/bruising ect. I just don't think I could handle that right now!!! (I know you're all going to say that coumadin isn't THAT bad.... but I still don't want to find out!!!) Does this make sense?
-elena

 

[ShezaGirlie]

Oh yes Elena, you make perfect sense!

 

[Kevin M]

It is your right to choose whether or not you decide to have a baby through natural means or not.

Personally, I think a biological valve makes perfect sense for you given your preference regarding children.

Here is a very brief run down of the more common biological valves that are out there:

-Homograft: This is a freeze-dried human valve that replaces yours. I had one when I was your age. It burned out in 10 years and I needed another surgery 11 years in. They generally do not last all that long in younger people, but this option could serve you well. You should be able to get 10 years out of it. They are one of the more hemodynamically sound valves out there. This means blood flows quite naturally through them with few little nooks and cranny's where it could create unnatural pressures.

-Stented Porcine (Pig) Valves: These are pig valves that have a stent on them. The stent is really just a ring that is used to sew it to your body. They are most commonly used in older people because they do not tend to calcify valves as rapidly as young people. These do not last very long in young patients. I've heard 5-8 years or so. They are not quite as hemodynamically sound as Homografts.

-Stentless Porcine Valves: This is a newer type. They found a way to sew them in without use of the stent. Doctors figure they will last a lot longer than Stented valves, but who knows. I'll let you know in 10 years since I opted for this one.

-Ross Procedure: The Ross is what is called an Allograft. What they do is take your pulmonary valve and replace your aortic valve with it (sorry, I'm not sure if you are having the aortic or mitral valve replaced. I'm not sure if they do this with Mitrals). It is often used in children because the valve continues to grow with the rest of your body. The pulmonary valve position does not take as much of a beating (sorry about the pun) as the aortic one, therefore, they will usually replace it with a homograft or other biological. Some doctors have problems with this because it entails taking a healthy valve. After the procedure you have two valves that have stitches.

-Bovine (cow) Pericardial: These are fashions from bovine parts and there have been some excellent results. They are supposedly quite versatile and have good duration potential. They too are relatively new, but they appear very promising. I've seen a lot of research on them. Not as much on the stentless. I'm not sure if it's because the bovine valves have been around longer or what.

There are other ones out there. Cryo-valves and stuff. Most are variations on the ones shown above.
Kev

 

[Enudely]

kev,
Thanks for all the info, that was exactly what I was looking for! sounds like the Homograft would be the best option for me. Of course, I'll have to wait to talk to the surgeon. He's out of town for another week (seems like Forever!!!)
So, you had a homograft and then a pig valve but in? How old are you? Are you planning on having another surgery to replace the pig when It wears out? I just assumed that I would have to put in a mechanical one in ten years, but maybe I don't ???? I really don't like the sound of coumadin!!!
elena

 

[Ross]

Elena look at the big picture here, you can only go through so many surgeries. It's prefered you only go through one, but with each successive operation, things are going to be harder and your body may not take the punishment that this type of surgery dishes out, in the future. After you've been through one, you may not even want to think about another, but certainly thinking of 3 and 4......Well that's a bit extreme and too far down the road.

Coumadin is not the evil monster that it's made out to be. I know when they started me on it, I wasn't at all happy about it, but bottom line, If this is what I have to do to remain alive and avoid a 3 surgery, so be it. I myself would never make it through a 3rd. My body is done. It will take no more. I nearly bought the farm on the 2nd, so for me, this hits home hard enough to warn you.

 

[Nancy]

Hi Elena-

I have to echo what Ross has said regarding too many additional surgeries. I surely do understand your wanting a tissue valve for the first time, given your age and probably wanting a family. And you have a long ways to go (hopefully 10 years or so) until the second time comes around. But the body really does not recover in the same way for successive surgeries, even though they might be done perfectly by the surgeon. There's not much that can be done to predict just what effect lots of major surgeries have on your particular body systems.

So when the second time comes around, be sure to get a lot of opinions from all of your doctors about whether your own system would do well with a third surgery.

 

[Granbonny]

Elena

Elena

Hi..I'm Granbonny the Mother-Hen of the group. First, I would like to ask..have you been to a Gynecologist?..to make sure you are capable about getting pregnant the Old Fashion way..No problems with your female organs? The reason I ask..my daughter cannot..She tried many drugs and spent many $$$$ trying too...Now, thinking about adoption...I would hate for you to go through Valve replacement..only to find out..it may be hard for you and your huband...to get Pregnant. but I do agree..at your age..take a tissue...Do the fun things for next 10 years..Traveling, ect. I do take coumadin and never had any problems with it..18 months..but, I am age 63..Don't plan to do anymore skiing.. my worry, is getting hit in head from Grandson's Little League ball games. or getting hit in head from a flying skateboard. You should feel fine at 6 months..for your wedding. Are we invited? Granbonny

 

[Susan Allen]

Hi Elena,
I just went through the Ross Procedure but I am 42. You will have to talk to a surgeon of course but this procedure is becoming more and more popular. Only so many surgeons do it but I 'm sure glad I did.
Please really research - I am no means an expert but a homograft was my last choice. Please look into the Ross Procedure as a possibility but maybe even more so the Carpentier Edwards Bovine Valve. My surgeon had told me this was one of my possibilities but is used more so for women of child bearing years. I have read some really good info on the bovine valve where they are getting people past 18 years with it.
There is a big heart center in Ohio (sorry I know people on this site will know the name) that is really a big promoter of this.
Not trying to sway you or scare you just passing on info so you get the most time. Like you if I have to do this again - I want as much time as possible so technology is more advanced.

Good luck and take care
Susan Allen

 

[Kevin M]

Elena, to answer your question, I have pretty much resided to go with a mechanical valve for my third go around.

Ross and Nancy are right. The risks increase significantly each time they go in and the choice should be very carefully considered.

I was 23 when I had my first surgery. Homografts were fairly new back then and they told me they thought I would get 25 years out of it. At the time, they didn't have the research they do now. I do not regret this decision.

For my second go around, my left ventricle had enlarged a bit and my aorta was dialated. They didn't want to go with another homograft. I still wanted to go biological, so my doctor suggested the stentless porcine valve. I've been happy with it, but it is also relatively new, so no one knows how long it will last. They told me 20 years. I laughed because I had heard such rhetoric before. I had my second surgery 2 years ago at 35 years old.

This choice was difficult. I didn't want to go on coumadin. I have my reasons; it's a personal choice. On the other hand, I have taken on more risk by forcing a definite third replacement surgery eventually. Sometimes I wonder if I should have gone with a mechanical this time. I think it's a really tough choice when you are through half your life (hopefully less than half) and have to face the choice a second time.

I have no desire to push my luck and face a fourth surgery. That could happen anyway, but I'm not about to force the issue by going with another biological valve. I have my reasons for choosing biological - just as others here prefer mechanical. It's a matter of understanding the risks and judging what is best for your lifestyle at that time and what you predict for yourself for the future.

If you decide to go biological because of your wish to have children - well, that really is all you should be worried about right now. Your second surgery will happen later and you don't need the added pressure of making such a decision right now. Things change. In the last decade, there have been advances with new valve types, they are testing new anticoagulants. No one knows what they'll have as an alternative by the time you go for your second operation. Some say, it doesn't move that fast, but they forget that technology and research are escalating exponentially.

Should you decide to go biological, as long as you choose a valve type that leaves your options open for your second surgery, you will likely be happy. Talk to your caridiologist. Ask a lot of questions here and elsewhere. The important thing is that you are comfortable with your decision - not what we all tell you. Whatever information you get from us will always be biased. The mechanicals people seem to be pro-mechanical. The biological people tend to be pro-biological. It's your body and your future that are important.

Keep asking the questions Elena. The more information you arm yourself with, the easier it will be to arrive at your decision.
Kev

 

[sylviayasgur]

hi elena!
kevin has pretty much summed this all up very well.
i think all the input here is very beneficial. it's a personal choice and yours.
this is probably the hardest part of it all_ choosing the valve.
about having kids, you might want to ask about that and be sure that it will be ok. also, which valves are more conducing to it.
wishing you all the best in your decision.
be well, sylvia

 

[Enudely]

Thanks for all the advice!
I did go to a gynecologist and as far as I know, there were no problems. Also, I've been pregnant before (miscarraige) and know that both me and my fiance are fertile!
Anyway, you are all right in that I do not have to worry about what will happen in ten years.
I still haven't talked to the surgeon yet so I don't really know much about the different choices of biological valves. My cardiologist called me today and said that he wants to "triple check" himself.... he wants to go over the echo with the surgeon and do some more tests (whatever that means) before giving the go ahead to set the date for December. He said "It's not every day that someone your age walks into my office with a valve like that!!!" I somehow got the feeling that he'd NEVER seen someone my age with a valve like this! so, anyway, here I am waiting ...waiting... waiting!!!

 

[Christian]

E:

My wife (the valver, 31 years old) and I are essentially in your shoes, though we've been told by our Cleveland Clinic team that we can have a baby now (pre-surgery) with only a slightly increased risk.

That said, we've spent dozens of hours talking with the doctors at the Cleveland Clinic and talking with two local high-risk obstetricians, one who specializes in valve disorders. I don't want to bore you with all the details -- just the conclusion:

If my wife had valve surgery today, and a repair of her mitral valve proved to be impossible, we would have the Cleveland Clinic surgeon put in a Carpentier Edwards Perimount Mitral Valve (made from a cow's heart tissue). Our doctors unanimously agreed that that would be the best choice for us given our desire to have a family. Moreover, we were told that even if we didn't want kids, the choice between a CEPMV and a mechanical valve was really one that had to be made based on personal preference. For a young woman, neither has a distinct advantage over the other -- it's a choice between coumadin and a likely repeat surgery in 20-25 years or no coumadin and an inevitable repeat surgery in 10-15 years.

I'd do a little research on that valve and ask your doctors about it. See what they think.

 

[bvdr]

Hi Christian,

Just curious, why did they say a "likely repeat surgery" for a mechanical valve in 20-25 years?

I'm glad you have pretty much made your decision on valve choice. I also hope you have your family and all goes well for you.

 

[Nancy]

I have the same question as Betty.

 

[Granbonny]

Hi Christian

Hi Christian

I did a run-down on your user profile and see that you have just come back on VR...after a year. How is your wife doing? Do you think she will need VR..anytime in the future? Can you post again..once you did..a site that said 38% of all mech valvers will have a stroke in their lifetime. I clicked on it and computer got stopped. Had to re-boot.....We, Mechanical valvers have been told that they will last a lifetime. Sure hope so for our younger valvers who have the Mechanical valve..me, too, don't want another surgery at age 81 Did your research come from the Cleveland Clinic? Thanks, Bonnie

 

[Christian]

Yes, I'm back after about a year's hiatus. I like to drop in from tiem to time and read about everyone's progress. You guys are an inspiring bunch.

I honestly don't know for sure why they're saying a mechanical valve will likely have to be replaced after 20-25 years. I didn't bother to ask, since I had a zillion other questions, and I don't want to venture a guess that turns out to be way off. I am sure, however, that it has nothing at all to do with the potential for structural valve deterioration.

I think that article I posted to a year or so ago claimed that the odds of having an embolism over one's lifetime was as high as 34% on a mechanical valve *without* anticoagulation treatment. It was a Cleveland Clinic article. I would guess that number would vary based on your age. The article is an Adobe .pdf file. I'm not sure why it locked up your machine.

My wife is fine, thanks for asking. We just got back from another Cleveland visit, and she's totally stable -- the regurgitation is still a serious problem (although she dropped to 3+ this year) and will need to be fixed sooner or later. But her other numbers are all terrific (and totally stable over the last 8 years) and the doctors have no problem with us waiting. We could elect the surgery now if we wanted to do so, but we'd be acting very aggressively -- particularly since we've decided to shoot for a baby in 2004. I think we'll opt for surgery at the first sign that her numbers may be shifting. She has enough of a cushion in her numbers that a significant shift towards the worse won't push her over any of the "indicators" for surgery. Our goal is to have the surgery before we hit any of the "indicators."

Another point for waiting -- it seems that every year her odds of a successful repair go up. We were quoted a 70-80% chance in 1999, then an 80% chance in 2000, a 80-90% chance in 2001, and now we're "over 90%." Heck, I'm starting to become convinced that Cosgrove and his squad will be able to repair her valve with an errant sneeze by 2006.

 

[Christian]

You know, as a follow up to my most-recent post, I went back and looked over my old posts and messages and realized that I had asked someone here (via a private message) the same question you guys asked me about mechanical valves, and was told the potential for a redo has something to do with the sutures.