25 years old and confused

[cuoricino]

Hi all, I've been reading up on the different types of valves and their pros and cons. Even though it is somewhat discouraged in patients my age because of the short life expectancy of the valve, I'm leaning towards a tissue valve and considering the Ross procedure (granted I can get my hands on a good surgeon here in Italy).

Am I crazy to want a tissue valve when it most certainly means a do-over surgery (or maybe even 2 do-overs) in the future? I want to avoid coumadin because I want to have children. And I was thinking that I could do tissue valve, and when that one poops out, put a mechanical one in there and hopefully never have to re-operate. That still means 45 years of coumadin if the tissue valve gets replaced when I'm 35, if I live until the age of 80. That seems like a LONG time to be tied to medication. I know the Ross procedure has much higher success rates as far as valve longevitiy, but I'm terrified of completely ripping up my heart for a lousy aortic valve.

I have an aneurysm in my ascending aorta at 4.9cm (measured May 6, 2009)and that's why they want to operate. Until now, the cardios and surgeons I have met with have taken for granted replacing the valve and repairing the aneurysm altogether. But wouldn't it make more sense to save my valve (especially since I'm so young) until it's absolutely necessary?

I've read the sticky's in this part of the forum and they've been helpful, but talk mainly about middle-aged patients. What about a 25 year old?

Thanks for any help!!

 

[bahlvarun]

Hi,

Having kids is one of the conditions where in the doc would suggest to go in for a tissue valve.

talk to your doc about your pregnancy and he'll be on your side.. ;-)

Ross procedure is ruled out coz for ross your pulmonary valve will be put in aortic position but your pulmonary will be replaced with a mechanical valve.

Best is to go for tissue valve, this may take you through your initial years without any worries. then later on you can get it replaced with a mechanical one.

hope this helps,best of luck for your married life...

 

[Ross]

Unless you adopt or go surrogacy, no your not crazy. You don't want to be on Coumadin and pregnant. It can be done, but it is very high risk and would require a really special team of Doctors to work you through it.

Just so you know, RCB's been on Coumadin since the beginning of heart surgeries, nearly 49 years now. So being on anticoagulants for life is not a big deal.

If you need the valve replaced, it's best to get both things taken care of at one time. You do not want to keep repeating this surgery.

 

[netmiff]

first of all, welcome to this crazy place !

at the top, there is a search function - try putting in "pregnan" (not a typo, that will catch pregnant, pregnancy etc) and you should get a few relevant threads.

Coumadin is not the ed of the world, what if you were diabetic?

All of the following is my version of what I have heard here. The preferred way to go is tissue valve, pregnancies, then mechanical. Don't bet on getting 15-20 years out of the tissue valve, though, as pregnancy seems hard on them. 2 pregnancies is a reasonable bet, some a bit more or a bit less.

You don't say what is wrong with the valve, or what condition it is in at the moment, or how long it might last without replacement at this point. However, open heart surgery is hard on the body, and as much as possile to be avoided, especially multiple re-dos. Don't want to frighten you, but if your aortic is bicuspid, it could be hereditary. Just something else to think about, sorry!

I was 52 years old, so child-bearing was never an issue for me. You can also PM or e-mail some of the members who have gone through this.

Hope this helps, and doesn't just confuse you more! if you have any more questions, post away!

 

[kfay]

If you want to have surgery, I think your plan is perfect. Going tissue now will allow you the best chance at carrying your own children. When that wears out, go mechanical and hopefully you will be done.

Good luck with your surgery.

Kim

 

[Lynlw]

Hi,

Having kids is one of the conditions where in the doc would suggest to go in for a tissue valve.

talk to your doc about your pregnancy and he'll be on your side.. ;-)

Ross procedure is ruled out coz for ross your pulmonary valve will be put in aortic position but your pulmonary will be replaced with a mechanical valve.

Best is to go for tissue valve, this may take you through your initial years without any worries. then later on you can get it replaced with a mechanical one.

hope this helps,best of luck for your married life...

You are wrong about the Ross. Pulm valves are almost never replaced with a mechanical, in the Ross or by themself. The pulm valve would be replaced with some kind of tissue valve, either a homograft (human donor ) or porcine, or bovine.

As for cuoricino's questions, it is hard to give answers (well personal opinions) without knowing a little more, why doi they want to replace your valve? IS something wrong with it since they want to replace everything and not just repair the annuerysm? BUT yes for the most part Tissue valves are usually advised for women who want to have children, to avoid coumadin. I have no idea how long it will last, it probably will have alot to do with when you have your children and how many ect. Then when it is time to have that valve replaced who knows what your options will be.

 

[john79t]

Have you talked about Ross with your surgeon. This proceedure takes the PV and places it in the aortic position and a tissue valve put back in the PV position. We ahve one member that the tissue valve lasted 38 years and it was an infection that cause it to fail then. The tissue valve can last much longer in this proceedure. If you go this way you need a surgeon that has done hundreds of these with great results. From what I have read the surgeon is the most important part of success in a ross.

 

[geebee]

It sounds like your thinking is well founded. If you want to get pregnant, a tissue valve is the best option and, as you mentioned, you can get a mechanical once the tissue needs replacing and you have your family.

As far as long-term coumadin, I have been on it for almost 29 years and have had no issues.

Best wishes for a good outcome.

 

[ALCapshaw2]

If you decide on a Ross Procedure, be SURE to find a Surgeon who has Extensive Experience doing the Ross Procedure and ask about his outcomes (i.e. how long his RP's last in his patients.)

In the USA only a few of the TOP RP Surgeons seem to get good results. Even the Cleveland Clinic (#1 Rated Heart Hospital by U.S. News & World Report) has stopped endorsing the RP because of early failures.

Getting a Tissue Valve in the Aortic Position is a Good Choice for women who wish to have future children.

BTW, it is my understanding that Mechanical Valves are NOT put in the Pulmonary Position as part of a Ross Procedure. The usual Pulmonary replacement is some sort of Tissue Valve, often from a human cadaver.

Since you have an Aortic Aneurism, you may want to ask your Cardiologist (and Surgeon) if you have a Bicuspid Aortic Valve which is often associated with Connective Tissue Disease and Aortic Aneurisms.

See the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of information on these disorders.

'AL Capshaw'

 

[bahlvarun]

Hey,

fine ...!!
I was wrong, so what we are not docs... ;-). Sure you can put in tissue valve instead of mechanical valve.

 

[Tom F.]

Please find out the condition of your aortic valve, is it normal or bicuspid? If it is normal there is a procedure that can be done to replace the diseased portion of your aorta, but you keep you aortic valve. This procedure is called a "david type" valve sparing procedure. I had it done in 2002 with excellent results, others here have had it as well. You should consider this as a possibility.

 

[briansmom]

I read in your previous post that you do have a BAV. Is that repairable and/or can you leave it alone and fix the aneurysm? If so, then that seems like it would be about the same risk of a tissue valve because many people with BAV don't need them replaced until they are older. Otherwise, I think you have to go tissue in order to have kids. I also don't think that you should worry about the coumadin. It is only mildly annoying to most people that are on it.

 

[cuoricino]

Thanks for all your replies. Yes, I do have a BAV, diagnosed at age 5. At my last surgical consult I was about 80% convinced that I wanted a tissue valve with standard AVR surgery. Just as I was going to ask how to go about booking an OR, my surgeon said he wanted me to get more informed on the Ross procedure because he thought it was a great option considering my circumstances. While he has had experience with it, his current hospital (and most of the hospitals in Tuscany I might add) is not authorized to perform such a surgery.

I'm meeting with a different surgeon tomorrow (can never have too many consults, right?) and will ask about surgeons who perform the Ross procedure here in Italy.

Another question: If I replace my BAV with a tissue valve now with standard AVR surgery, would it be possible (or smart) to then go with the Ross procedure once the new valve wears out? My logic being this - it doesn't seem like many surgeons perform this type of surgery here and I don't feel like I have the time nor the money to galavant around Italy to find a good one before my aneurysm starts to mean serious problems for me. I have no American health insurance now, but years down the line, who knows where I'll be? I could very well be in America with a job and great health coverage that would permit me to find a great surgeon experienced with the Ross procedure.

Is this kind of thing heard of? Or is the Ross procedure usually the first OHS, not the second...?

One last thing on coumadin - I totally understand that once I have to deal with it, I'll be fine. It's the whole shock of going from no medication to medication-dependent that freaks me out a bit. My uncle just recently had to start on it for a different heart problem and he seems to be just fine. Don't know how you guys do it!! You're amazing!!

 

[Lotti]

Hi there. I think your thoughts are spot on.
Please speak to your cardiologist and surgeon about wanting a family. I went tissue cause I wanted a little brother/sister for my son. Ended up on regular medication anyway and then at my 3 month check up was told that it would be too risky to have any more kiddies. Now I have to wait for another surgery anyway. If I'd been told that pregnancy would be too risky for me before hand, then i would have gone mechanical in the first place.
My advice is talk to your surgeon, cardiologist and even whoever might be looking after you during a pregnancy. Obstetrician or gynaecologist?? Get as much advice as possible. You will then make the right decision for you.

All the best, and remeber your decision is the right decision.

Lotti

 

[cuoricino]

Thanks Lotti, good call.

In fact, my boyfriend and I discussed how "ironic" (read: horrifying) it would be if the only reason I opted for a tissue valve would be to have kids and then find out that both or either one of us is physically unable to have them. I admit that it is one of the primary reasons (and most important) that I'd like to go tissue. But I've also decided that I would like to buy myself (and the wonderful world of science) at least a few more years' time before having to be tied to anti-coagulants. I know that, like in your case, sometimes they are necessary anyway... but I've got my fingers crossed that in my case they won't be. So I've opted not to go with my boyfriend's suggestion of fertility testing pre-surgery because even if it weren't for the kids, at this point I'm 90% sure I'd go with a tissue.... still in decision mode!!

 

[Ross]

Hey,

fine ...!!
I was wrong, so what we are not docs... ;-). Sure you can put in tissue valve instead of mechanical valve.

Don't take it as a violent correction. Lyn means well and is only trying to correct the error. Happens to me all the time.

 

[Lynlw]

Don't take it as a violent correction. Lyn means well and is only trying to correct the error. Happens to me all the time.

Thank you, I'll try to word things better next time

 

[ctyguy]

Seems your getting lots of good feedback to your questions so I don't have anything really to add, just hello and best of luck !

 

[laurad37]

I would recommend a tissue valve if you are going to have children. I am 37 and am done having children and still opted for a tissue to prevent being on anticoagulants for the rest of my life. Anticoagulants for the rest of my long life could cause many problems down the road plus by the time we have to have ours redone it will most likely not be open heart surgery anymore. So many advances are coming when it comes to this type of thing. Good luck with your surgery and decision.

 

[Ross]

I would recommend a tissue valve if you are going to have children. I am 37 and am done having children and still opted for a tissue to prevent being on anticoagulants for the rest of my life. Anticoagulants for the rest of my long life could cause many problems down the road plus by the time we have to have ours redone it will most likely not be open heart surgery anymore. So many advances are coming when it comes to this type of thing. Good luck with your surgery and decision.

It's not that anticoagulants can cause many problems down the road. It's that the medical profession has to get their act together and get on the same page. When they do that, all will be well. It's hard to believe that a drug that is so widely prescribed by physicians, has little understanding by those writing those prescriptions.