Why is this choice so difficult?

[Naomi]

Hi everyone! I'm a 30 year old woman in need of Aortic valve replacement due to regurgitation. I've known I would need this done for the past 4 years so I have read a LOT about the options. Until a few weeks ago I would have said I was 100% going mechanical. A month ago I met with a surgeon to discuss my "options" because my symptoms are getting ridiculous and the TEE showed my valve was prolapsing (why does this happen?). That surgeon pushed hard for tissue for 2 main reasons 1) I'm of childbearing age (which I am done with as far as I know. I have 2 ACTIVE wonderful little boys) 2) the "real" possibility that by the time I need it replaced, I could get it done percutaneously. I thought he was full of it and went to go see another surgeon still thinking mechanical was the way to go. When I met with the second surgeon (who I trusted MUCH more) he didn't push one way or the other. He did stress that coumadin was NOT a non-issue, that is WAS a big deal and I should be ready for all that it entails. He also was honest and said there is not enough evidence about the percutaneous valve replacement to put too much hope into that. For example he said it can only be replaced that way once, so if I got tissue now it lasted say 15 years (which I really only expect 10) I would be 45 and if I got the percutaneous valve by the time that fails (which he said they have "no idea" how long that would last) I would still need another big surgery. Every option I have is like that. Round and round my thought process goes. If I go tissue now with the thought to go mechanical later I could still end up on coumadin if I get Afib (any other reasons out there?) and I have to worry about feeling like I do now (crappy) until I can get it fixed and then have to go through another surgery and recovery! If I go mechanical I'm on coumadin for (say I live to 80, my grandma is 89) 50 years! Yikes! Can someone really escape a major problem for 50 years! I'm 30 I can't even imagine what 50 years is! :smile2: Plus there's still the chance I have to have another surgery in the future for tissue ingrowth, valve failure, or other reasons. I know that the choice I make with save my life and whatever it is will be right for me but I can't help but be frustrated that there is not a "perfect" option.

So my questions are...
1) What would you do if you were a 30 year old woman?
2) Would 10-15 years without having to take coumadin be worth the risks associated with a second surgery? ( I'm thinking about periods, migraines, ovarian cysts, remote possibility that something happens to my husband and I end up with someone who wants babies, rollercoasters, canoe trips in the wilderness, hiking, rockclimbing, etc...)
3)If I happen to have an aortic aneurysm is it just better to go mechanical so there is less "messing around" in there? or is tissue better in that instance? (I have a CT angiogram scheduled in a week)

I'm not looking to start a debate about which is better, just to see if I can pick your brains on which is better for ME. This forum is such a valuable resource, Thank you all who participate!

 

[Ross]

If you plan on having any more children, go tissue hands down. If not, some Doctor is pumping you full of the usual nonsense about Coumadin being a big deal. It can be if you have a poor manager, poor doctor, are noncompliant etc, but for the most part, it's a nonissue. It can be a pain if you have other procedures down the road, but it's all very much managable. I can tell you this, most doctors don't understand how to manage Coumadin. It's only been around for 50 years and not one of them are on the same page concerning it's dosing. That is the largest single drawback to Mechanical valves. There is no reason to change your lifestyle, no reason to change your diet or any of the other complete garbage they tell you. Can I ask exactly what the BIG DEAL was that he cited?

Others will disagree on #2. I do not think the risk of another surgery is worth it just to avoid Coumadin. I have yet to see someone die in here from Coumadin, but I have seen several die from heart surgery and complications. You can look at all the other threads this week for all the heated debates about the why's of it all. I am of the feeling that no one should do this surgery more then once if they don't have too. There are no guarantees either way, but Mechanical gives you the best chance of never doing this again.

On number 3, you can go either way. If your aorta is bad, it will be replaced with a dacron graft that will out last your lifetime. It doesn't mean, however, that another aneurysm won't pop up somewhere else. I had a ruptured thoracic aortic aneurysm. I thought I was done with this crap, but now I have another one in my abdomen that we are watching. If you don't think that hasn't got me petrified after what I've been through, you'd be mistaken.

No one can make this choice for you. Sorry. We can only tell you our experiences and you can take it from there.

 

[dick0236]

So my questions are...
1) What would you do if you were a 30 year old woman?
2) Would 10-15 years without having to take coumadin be worth the risks associated with a second surgery? ( I'm thinking about periods, migraines, ovarian cysts, remote possibility that something happens to my husband and I end up with someone who wants babies, rollercoasters, canoe trips in the wilderness, hiking, rockclimbing, etc...)
3)If I happen to have an aortic aneurysm is it just better to go mechanical so there is less "messing around" in there? or is tissue better in that instance? (I have a CT angiogram scheduled in a week)

!

1) I had no choice when I had mine at age 31. But if I knew then what I know now and had to choose, I would still have chosen the mechanical valve. Young women still in the child bearing years have pregnancy to consider.
2) Not to me.
3) I have never thought about that. I was fortunate in that I had only a defective valve. I still have no evidence of an aneurysm, at least that was true in Sept 2009.

As you are doing, learn all of the FACTS but try to disregard the myths, superstition, and inaccurate statements concerning the right or wrong valve. The BEST of good fortune to you:thumbup:

 

[malibu82]

i am 28 years old. had 2 babies already and my choice 8 weeks ago was a tissue valve. i am very happy with my decision and would do it again. if you need more information or want to hear my reasons why feel free to PM me!

jackie

 

[Julieaka]

If it is related to children - and you need to - go tissue

Otherwise, I am 43 and was going to go tissue 5 years ago - but did not get replaced.....then just got my mechanical valve 3 weeks ago

Largely due to Ross's point - I want to go through OHS as few times as possible - I am hopeful this was my one and only we fixed the small anuerysm at the same time - purposely to avoide #2

Iam only a few weeks on warfarin - I am scared. I am always hearing conflicting information - but again I agree with Ross - it's been around for 50 years and i can surely get a handle on this.......so far so good

 

[Luana]

1) If I were a 30-year-old woman, I would select a tissue valve, unless it were impossible (and I do mean impossible, not birth control) for me to conceive again, then I would select mechanical.
2) A second surgery probably would not be more risky if my health stays pretty much the same; however, none of us know what the future holds. The activities you listed and living an active life need not be compromised by taking Coumadin.
3) I don't think tissue or mechanical would make a difference with this.

 

[Gail in Ca]

When you choose a tissue for the 1st surgery, as I did, you assume you will only need one more surgery, and at that time you would get mechanical. So, I was happy with my choice for 11 yrs, then got the mechanical.
But, oops, I was so sick going into the 2nd surgery, the surgeon could not repair/replace my very leaky mitral. (The cath nurse gave me a fluid overload and I ended up with bad CHF before my surgery.)
So, I knew I would have a 3rd surgery, but thought it would be minimally invasive for the MV. But, oops again, I got bacterial endocarditis, which makes one really sick, and even though the antibiotics got rid of the staph, I then had severe anemia, and leakage in the AV as well as my continuing severely leaking MV. So a full blown 3rd surgery for me 20 yrs after my initial surgery. To answer your ? : 1) mechanical 2)not worth it, those few yrs go by really fast! 3) I would think it doesn't make a difference. I had a graft the 1st time, for the 2nd surgery, they just cut thru it and replaced the valve, then just stitched it up. The aorta repairs around and thru the graft. For 3rd surgery, it had to be replaced totally, a type of Bentall procedure. For what it's worth, my top surgeon was very concerned going into this 3rd surgery. It's not a piece of cake by any means.

 

[ALCapshaw2]

We've had 2 young women who chose Bovine Pericardial Tissue Valves to carry children.
They got TEN Years before the valves needed replacing.
Porcine Tissue Valves typically fail even faster.
We've seen posts from Porcine recipients noting failures after 1 to 7 years.

Former member Gina (screen name Geebee) has had a St. Jude mechanical valve for around 30 years
while on Coumadin all that time.

Dick0236 still has his Old (no longer manufactured) Mechanical Valve which was implanted in 1967 giving him 43 years on Coumadin and counting. He has written about his experiences in other posts.

Nancy's husband was told he probably wouldn't live past age 50.
He died of multiple organ failure at 75 with his mechanical valves still working just fine
(after 3 Heart Surgeries and 2 Lung Surgeries, taking Coumadin ever since the first Vave Replacement).

Have you checked out the Latest and Greatest in Mechanical Valve Designs on the On-X websites?
They are in trials for NO and LOW Anti-Coagulation Studies with low risk patients.
See www.heartvalvechoice.com and www.onxvalves.com for more information.

Currently, percutaneous valve replacements are ONLY being performed on high risk patients who probably would not survive Open Heart Surgery. No one knows how long those valves will last or how effective they are (i.e. how much blood flow can they get through a valve sewn inside another valve? I've not seen any answers to that question).

'AL C'

 

[Naomi]

Thank you all for your replies! My thoughts for the last week or so have been to go mechanical if I have an aneurysm and tissue if not. When I think about NOT having to deal with coumadin yet (I know once you get used to it it's not that big of a deal...but I am scared to commit to taking a drug for the rest of my life that could have devastating effects if managed poorly), I get a huge feeling of relief. But then the worry comes back because who knows what the next surgery will be like... heck who knows what the first surgery will be like! So then mechanical sounds good but then I think "50 years on this drug! How can I do that?" I should note that my Mom, brother, and sister are all nurses and extremely nervous about me being on coumadin. So I feel the pressure from them to do anything possible to avoid the "terrible" coumadin. Although as my best friend pointed out, they only see the people who have problems with it, who manage it poorly and need to be hospitalized. I can see a scenario where I might want and be able to have more babies. However that is not with my husband so something bad would have to happen to him and there would have to be a quick replacement... that is probably not very likely. So I would hate to even put that into the equation. I guess my point is that I don't know what to do. I just want to live the healthiest most "normal" life I can. I want my kids and husband to not have to worry about my health and I want to feel better! Maybe I'll go ask more coumadin related questions in the ACT section... Thank you for allowing me to vent. I'm looking forward to this decision/surgery/recovery being over!

 

[Naomi]

I can tell you this, most doctors don't understand how to manage Coumadin. It's only been around for 50 years and not one of them are on the same page concerning it's dosing. That is the largest single drawback to Mechanical valves. There is no reason to change your lifestyle, no reason to change your diet or any of the other complete garbage they tell you. Can I ask exactly what the BIG DEAL was that he cited?

That is EXACTLY why I'm hesitant to commit to coumadin. In 50 years I could run into a LOT of crappy stupid doctors. Although if I go tissue I WILL go mechanical next so I'm only saving myself 10-15 years. My surgeon was just saying it isn't NOTHING to be on coumadin. It is a daily medication with required regular testing, with other drawbacks if other surgery is needed or if not managed properly. He didn't scare me just wanted me to know it is a commitment, like marriage it's not easy or fun to get out of once you enter in.

 

[Cherie']

Naomi,
My surgery is two weeks from today and I am facing the same choices, although I am 15 years older, I have an ascending aortic aneurysm, and have an aneurized root. I have been back and forth over and over again - for all the same reasons - except I do not plan to have any more kids. I am pretty sure I have decided to get the On-X valve because I cannot imagine facing the surgery again. In addition, I dont know what the future holds - I do not know if I will be in good health, I do not know if something could happen that I dont have insurance, I do not know the future of our health care here in the US, and I do know that within the next 10 years the number of cardiothoracic surgeons is eexpected to drop in half. Only 50% of the cardiothoracic slots are being filled. Many of the great surgeons most likely will be retired by then. There are no guarantees with the mechanical valves - but chances are much higher that I wont need a repeat surgery if I go mechanical. Also I have already been told that my arteries are not large enough to have a valve replaced percutaneously. Anyways - it is your decision, a very personal one - I am just sharing with you some of my thoughts.

Cherie'

 

[dick0236]

That is EXACTLY why I'm hesitant to commit to coumadin. In 50 years I could run into a LOT of crappy stupid doctors. Although if I go tissue I WILL go mechanical next so I'm only saving myself 10-15 years. My surgeon was just saying it isn't NOTHING to be on coumadin. It is a daily medication with required regular testing, with other drawbacks if other surgery is needed or if not managed properly. He didn't scare me just wanted me to know it is a commitment, like marriage it's not easy or fun to get out of once you enter in.

The younger docs seem to have a much better handle on warfarin/coumadin so hopefully the number of "crappy stupid doctors" will become less of a problem. Also remember...some of these "crappy stupid doctors" will go on to be "crappy stupid surgeons" and you might get one of those for your next surgery???? If my own experience is any gauge, the advent of "self-testin" will further minimize the problems with maintaining stable INRs. I've run the full gamut of testing over the years and the testing protocols and results have improved dramatacally.

Your surgeons advice that "it is a commitment" is true. The second part of his statement that "it"s not easy or fun to get out of" is, in my opinion, a strange statement. If you get a partner you can live with and is dependable, why would you want "to get out of once you enter in"....I have been married 53 years to the same woman. Sounds like he had a bad experience.

 

[Naomi]

Your surgeons advice that "it is a commitment" is true. The second part of his statement that "it"s not easy or fun to get out of" is, in my opinion, a strange statement. If you get a partner you can live with and is dependable, why would you want "to get out of once you enter in"....I have been married 53 years to the same woman. Sounds like he had a bad experience.

LOL! The marriage statement was my own. I just meant if you wanted to get out of having to take coumadin it would not be an easy thing to do. Kind of like most divorces. I wouldn't know from personal experience I have been happily married to a wonderful man for the last 10 years and have no intentions on bailing on him if times get tough!

 

[ALCapshaw2]

Naomi -

FYI, the Best Control of INR is found in patients who Home Test and Self Dose.
Home Testers (Coaguchek XS and HemoSense are the 'latest and greatest') run around $2000 List Price.
Some insurance companies will cover most to all of the cost. Sometimes you can negotiate a lower price for an "out of pocket" purchase. Many Home Testers test every 2 weeks. Some test every week.

The next best Control of INR is typically found at dedicated AntiCoagulation Clinics with well trained Nurses.
Testing is typically scheduled for every 4 weeks IF your INR is stable, more frequently if it is a 'moving target'.

Ross and others on the Anti-Coagulation Forum do a very good job of helping 'newbies' understand and control their INR.

'AL Capshaw'

 

[Philip B]

Choices, Choices, Choices...

Choices, Choices, Choices...

We hear from lots of folks who are extremely happy with the valve choices they've made. These comments come from people who've chosen mechanical and tissue. Of course, on occasion we hear from people who've made choices that they're unhappy with due to problems they've encountered.

Sure, it's a difficult choice. It would be nice if everyone could agree on topics related to coumadin and valve choice, but that's not going to happen because we're a diverse, very opinionated group with different perspectives.

Mechanical was a good choice for me and coumadin has not been a big issue at all, but that's simply me and my experience. Either way you go, you will probably win.

-Philip

 

[Bill B]

You've got a pretty good grasp of the controversies and uncertainties that make this a complicated, uneasy and imperfect choice. If only one of the choices were undeniably superior. I made a study of the issues and ultimately made a choice that I felt was clear and correct, but I shouldn't be so cocky as to think I figured it out. I just came to a conclusion. I had to - it was the night before surgery!

Anyway, keep puzzling over it for a while and a choice will become clear for you, but don't get too exasperated. If you weren't somewhat confused at this point I would be worried that you didn't appreciate the problem!



Bill

 

[Ross]

That is EXACTLY why I'm hesitant to commit to coumadin. In 50 years I could run into a LOT of crappy stupid doctors. Although if I go tissue I WILL go mechanical next so I'm only saving myself 10-15 years. My surgeon was just saying it isn't NOTHING to be on coumadin. It is a daily medication with required regular testing, with other drawbacks if other surgery is needed or if not managed properly. He didn't scare me just wanted me to know it is a commitment, like marriage it's not easy or fun to get out of once you enter in.

We would gladly help you where the pros ignorance doesn't. One thing that troubles me are people planning their second and third surgeries, when they haven't even had their first. I can't stress this enough, this is serious business and should be thought through very very carefully.

Lets put it this way, if you had cancer and had to take a drug everyday, is it still a hassle?

 

[dick0236]

One thing that troubles me are people planning their second and third surgeries, when they haven't even had their first.
?

This is what puzzles me as well. :confused2:

 

[pikacat]

i think everyone's said this already -- but. i'm 30 years old and i'm going with the mechanical. i don't have kids, and i guess it's a little sad. but if i had wanted kids, i probably would have had kids by now knowing this was going to happen. if you think you'll want another kid, go for the tissue. if not, go for the mechanical. personally, i find it troubling that a doctor would push any personal decision on someone. both my cardio and surgeon have been very hands off on this decision.

ps, i'm still going to go hiking in the wilderness with my rugged dog and off on foreign adventures. it's what i do! and my surgeon and cardio knows it! adventure doesn't stop bc of coumadin! and i'm still going to be the most tattooed lawyer in portland oregon! (i recently learned you can still do this with heparin shots -- thanks cardiologist!)

 

[neil]

no easy choice,as someone as already said, if one was so much better than the other we wouldnt be having this debate,so unfort it will continue to rage,just remember one thing all doctors are not clowns idiots morons when it comes to giving advice