which valve would you choose? second AVR

[gadoty1]

I had the Ross procedure 8 years ago when i was 19 and my AV has been leaking since then. Now it's time for a second AVR and I am very indecisive as to which valve to choose. I am really scared to be on warfarin forever and have questions about the long term effects on the body (liver or kidneys?). Also can it cause very heavy menstruation? I already have problems with that and don't really want it to be worse.
I have never been one for taking medications and maybe it's all in my head but a lot of drugs tend to have adverse side effects with me. I am done having kids. I have a 2 year old and a 4 year old, which makes this pending surgery even more scary.
So if I go with a tissue valve I won't have to worry about warfarin for 10-15 years hopefully but then will be dealing with a third surgery.
If I go with the mechanical I have to deal with warfarin and bruising and risk of stroke, but won't have to worry about another AVR.
My surgeon has said that my pulmonary valve will possibly need replacing in another 20 years or so but can never be sure. Just one of the things you have to worry about with the Ross procedure.
I would love to just get another tissue valve and hope for medical technology to really improve and maybe there will be a better option next time. I know how fast 10-15 years goes by though and i know how hard the surgeries are. Maybe there will be more minimally invasive AVR's done in the future.
I just feel like I have a long life ahead of me and I want to live it to the fullest without having to really think about my heart.
How bad is warfarin really? Is it more or less likely to be a pain to me because I am younger and not on any other meds.
If i get a mechanical valve i will definitely go with the on-X with hopes of not having to take warfarin in the future, but is plavix that much better?
I'm 27 now so 10-15 years would be potentially 40ish. Still young enough to fight through another surgery. Sorry so long, this is really weighing on me.

 

[Karlynn]

Welcome - glad you found us.

I would recommend that you go to the Anticoagulation Forum here and read the Stickies at the top (and view the videos provided in one of the stickies). http://valvereplacement.com/forums/forumdisplay.php?f=5 There is a lot of myth that is pervasive in the medical community regarding warfarin - it really is one of the worst things about being on it.

If you go with a tissue valve - you will be young when you get another surgery, but it would be your 3rd. I would also suggest that you consider the ages that your children will be during the time another surgery would be approaching. The older they get - the busier they get. If I had gone with a tissue valve I would have been facing another surgery around the time my children were in high school. It was, by far, the busiest time of my life. I personally am glad I did not need to fit it in to that life. Now that I'm a grandma - with both of my children grown and out of the house - I could fit the time in (just hope I don't have to!!).

Best wishes!

 

[Leah]

Hello gadoty1. This is an agonizing decision (or can be), and is harder the younger you are. I am facing this decision in the next several weeks at 57, and since I'm very healthy and appear to have great longevity genes I'm also counting on another surgery if I go with a tissue valve. I will probably go with a tissue valve nonetheless, but it's far from a trivial choice. You will hear many strongly-felt opinions in response to your post. Both choices are life-saving and both have very real personal costs. I suggest that the best resource on this website is this "valve selection" forum, which plays out many of the pros and cons, especially a long "sticky" at the beginning of that forum. I also strongly suggest spending some time reading through the posts in the anticoagulation and "home monitoring" forums. You can learn from what people say about whether they consider coumadin a big deal. You also can learn from the actual experiences they relate.

Good luck! This is a very personal choice that no one can make for you - and no one's judgment about this is more valuable than your own. But this is a wonderful place to gather insight about what it's like for other people who are making or have made similar choices.

All the best,
Leah

 

[Leah]

Karlynn's post and mine overlapped somewhat - we were posting at the same time.

Also, I didn't realize, when I posted, that there are now several "stickies." I was referring to the "famous...tobagotwo" sticky and see that the Al Lodwick sticky also has information about the evolution of the guidelines of mechanical versus tissue.

 

[dick0236]

Welcome to a forum where you will be able to get a lot of info.

I have been on warfarin for 41 years. There have been no long term effects of the drug on my organs such as, liver, kidneys etc.


Until I was in my mid-60s, warfarin was the only drug I took. Now I also have to contend with cholesterol and BP meds.

Warfarin has never affected my lifestyle or activities. However, if you go on a warfarin regimen you do have to dose daily and monitor your INR routinely. Its like "flossing your teeth", you just have to get into the routine. Many on this forum refer to the On-x valve and the likelihood that warfarin may be reduced in the future.

 

[MNmom]

hello and welcome!
I had a tissue valve at the tender age of 20, which gave me plenty of time to have my family, since I started young according to todays standards... this summer I just had my second and presumably last surgery to replace the tissue valve with a mechanical valve. Its funny, I never even considered getting another tissue valve when I discovered it was time to replace my first tissue valve.
My kids are young too- 3 and 6- but my husband and I knew we were done having kids, so the last thing I wanted was to have to go through yet ANOTHER surgery in 10 more years.
It was definitely a switch to go from tissue to mechanical and needing to take coumadin. I admit, it was a pain in the beginning to get it regulated, but looking back two months later, I really dont think it is going to be a big deal now that I have my dose figured out.
Every time you have surgery you increase your risk with additional scar tissue, etc. The difference for me from the first to second surgery is that I had a total heart block, due to the stripping of some electrical circuits in my heart, and now also have a pacemaker. This I was not prepared for, but am learning to accept. (after all, it is keeping me alive, so I should accept it).

My point...it was a none issue for me, and if I had to make the decision again knowing what I know after going through it all- I would still go with a mechanical valve- and be finished with surgery.
All ten years of my tissue valve I knew it wasnt over, that it would eventually need to be replaced. It is a wonderful feeling to have that weight off my chest!!!
Another thing to consider, the younger you are when you get the tissue valve, the shorter it will last- if the range is up to 10-15 years, you will likely be more on the 10 side.
Ultimately, of course the decision is up to you, please feel free to ask if you have anymore questions, and best of luck in your decision!!
Ingrid

 

[KAJ]

gadoty1,

I am just down the road from you in Jacksonville. I wanted to go with the tissue valve because of the coumadin. I had visions of looking like a black and blue punching bag due to brusing.

However, to be honest, I did not do my homework on it. In my case, the surgeon recommended against the tissue valve. I later discovered my fears of coumadin were unfounded. I get bruises from time to time but no big deal. I get tested about every three or four weeks. For me, it is a small price to pay.

Karl

 

[ALCapshaw2]

For the Latest in Mechanical Valves, check out www.onxvalves.com and www.heartvalvechoice.com

For backup, I like the St. Jude Masters Series which have been around for 30 years, 'just in case' the on-x is not viable in your case (or with your surgeon).

 

[Bridgette]

Perhaps, if you have finished having kids, you could consider getting a hysterectomy or uterine ablation, then you could go on Warfarin and not worry about it affecting your periods?
That was what I did and I am so glad.....I had a hysterectomy about 6 mths before my OHS. Now I don't have to worry anymore about periods etc.
I only take one prescription drug (Warfarin) along with natural supplements like Iron and vitamins and honestly, once you get the hang of taking Warfarin it is no big deal. That's just MY personal experience though.

There have been LOTS of heated discussions here in the past about mechanical vs tissue, so just to make it very clear, I am NOT trying to persuade you in one particular direction, I'm just offering one possible scenario....there could be lots of very good reasons for you to choose tissue. Whatever you decide, it will be right for you - you need to choose the valve that YOU are most comfortable with, no matter what anyone else says.
Good luck with everything - let us know how you get on.

Bridgette

 

[gadoty1]

my doctor has suggested the on-x valve but also says it is totally up to me whether i want tissue or mechanical. I really wonder if the Ross procedure is as successful as the statistics say. I guess if i wasn't one of the 2% that needed reoperation after only 8 years i would be all for it. The shock that i got when my valve didn't last 25 years! Guess i'm a little bitter still and still trying to accept that this is happening. I am going to do some more research on warfarin and try and settle my nerves about it. I know a mechanical valve would be the smarter, safer way to go. I just need to suck it up and quit trying to find a way out. I think i will talk to my obgyn about ablation before i have my OHS. That way i will have one less worry afterwards. Thank you guys so much for all of your advice. I like to hear either way what you have to say.

 

[Ross]

As far as Coumadin goes, for most of us, it's not a big deal. People still make it sound like if your on it, your going to hemorrhage everywhere with the tiniest of cuts and it's just not true. Way too many myths are still being circulated and our own medical professionals have failed to stay current with it. They are just as guilty as another person when it comes to perpetuating the myths.

 

[cday]

First, I am not the heart patient my husband is.

My personal questions to ponder as a mother of young children would be:

1) Re-op --- You have said that you already know that you will have to have the MV replaced in the future. So, you are going to have a 3rd OHS unless they would/could replace both valves with mechanical now. Now, what are the risks of 2 per valve vs. 3 on aortic and 2 on mitral? But still OHS 3 times.

2) Coumadin -- Are you in an area with a good coumadin manager? Are you adverse to taking it until absolutely necessary? (That sounds like what you are saying) You will have to dig and find someone with a similar story to yours (like Bridgette for one aspect) and maybe another with a propensity toward drug adverse reactions.

3) Age of children -- Preschoolers AND teenagers take all your attention, but teenagers can feed themselves and wash their own clothes (start early with training -- it is a lifetime skill everyone needs to know!) All that to say, I don't think I would make a decision based on that.

Unless powerful evidence to the contrary I always vote for less drugs -- but your case is very complicated and thought provoking. I know you are NOT basing your choice on a poll of our answers, so I will speculate as to what I think I would do if it were me (which it is not): IF they could/would replace BOTH valves mechanical now -- coumadin would look really good. Otherwise, I would really weight the 3 AVRs issue with my surgeon -- cause that is not sounding too great.

Cindy (the non-heart patient)

 

[gadoty1]

1) Re-op --- You have said that you already know that you will have to have the MV replaced in the future. So, you are going to have a 3rd OHS unless they would/could replace both valves with mechanical now. Now, what are the risks of 2 per valve vs. 3 on aortic and 2 on mitral? But still OHS 3 times.

Actually it's my pulmonary valve that my doc says could potentially need replacing in the future. he says it is fine right now but because it was replaced during my ross procedure with a homograft it has a potential to deteriorate in time (maybe 20 years?). My surgeon is Dr.Tom Martin at Shands in Gainesville, FL. He is suppose to be world renowned and Shands is pretty good about being up to date on technologies since they are a teaching hospital. He doesn't put mechanical valves in the pulmonary spot because they have a high tendancy to throw clots. He says if i end up needing my pulmonary valve replaced it will be a tissue valve. I am not too worried about the prospect of pulmonary valve replacement because who knows what can happen in the next 20 years. I could be hit by a car or something and may not even have to worry about it. Also could PVR be a minimally invasive procedure? Right now i'm just thinking about the AV and what will be best. I agree though that teenagers will be easier to take care of then 2 and 4 year olds, but doesn't really matter cause whether its mechanical or tissue, i will have to get something done soon. I am really on the fence with the two but now that i'm hearing from some of you guys i am tilting more towards mechanical again. I am just remembering how bad OHS really is and if i get tissue and the surgery is even worse the second time around, i will just be laying in the hospital thinking "i will have to go through this again in 10 years?". I think i blocked out a lot of my experience from the first time around.

 

[Ross]

It's not my choice, but I'm for anything that might keep you off of the table in the future and mechanical would be the best bet there. Still, no guarantees, but most likely would never need replacing.

 

[catwoman]

gadoty1:

This will be your 2nd OHS. If you go with a tissue, you most likely will require a 3rd OHS in 15-20 years. (Roughly age 58.)
If your PV does require replacement, that would be a 4th OHS, unless done at the same time as the 3rd AVR.
At 58, you might find a tissue valve that would last the rest of your lifespan. And again, maybe not.

Costs of surgery will escalate. Your co-pays/deductibles will probably increase.

Re-ops become more difficult with the additional scar tissue. You will need a surgeon well-versed in AV re-ops.

Not trying to sway you one way over another (tissue vs. mechanical), but these are things to consider.

 

[Karlynn]

There is no crystal ball. The doctors are guessing your pulmonary will need to be replaced in 20 years. I'm guessing my mechanical mitral will need to be replaced at some time - but maybe it won't (I keep hoping for Dick's experience!). Your experience with the Ross has already taught you that, unfortunately, predictions are only good guesses. There's no choice that takes away the guessing and gives us certainty.

I've had preschoolers and I've had teenagers - and my teenagers kept my life much more busy - physically and mentally. I felt like an 18 hour, non-paid chauffeur for about 8 years (Jr. High and HS, 2 kids) Swimming, football, basketball, choir, debate, study groups, class projects, games, meets, concerts etc etc. My preschoolers were up at 7, to bed at 8. My teenagers were up at 6:30 (school started at 7:35) and to bed anywhere from 11 to 1 a.m. depending on the amount of homework. And my teenagers did do their own laundry. Before they went to college life was a 100 mph road race. Our life was a logistical puzzle. They went to college and slammed the brakes on. Life is now about 40 mph. (and my kids grew up much too quickly!!!) If I'd needed surgery during that time, we would have figured it out. I have a very supportive family. I'm just glad I didn't have to find out.

You'll figure this out too. It's scary. You know what to expect because you've already done it. You have a doctor and facility that you feel good about. Just keep asking questions.

 

[Gail K]

I'm guessing my mechanical mitral will need to be replaced at some time - but maybe it won't (I keep hoping for Dick's experience!).

Hi Karlynn - I know this is a little off topic and I hope you don't mind my butting in here, but I'm curious about your comment that your mechanical mitral may need to be replaced at some time. I thought mechanical valves usually last a lifetime - is that not true if it's a mitral valve replacement?

 

[Karlynn]

I guess the question would be "Who's lifetime?" I had mine put in when I was 32. If you're 55 and your doctor told you it will last your lifetime - he will most likely be right. If you're 21 and he told you it would last a lifetime - that's most likely being unrealistic. The unknown is tissue encroachment on the valve that would cause it to decrease in function. A mechanical valve will not wear out, but tissue may grow into it in such a way that would make it function in a way that it would need to be replaced. And there are rare times when a clot forms on the valve requiring it to be replace.

Each person is different. I hope I never have to have my valve replaced again. But I was young when I had it put in, so I'm not certain it will. But I'll cross that bridge when I come to it.

 

[Gail K]

I guess the question would be "Who's lifetime?" I had mine put in when I was 32. If you're 55 and your doctor told you it will last your lifetime - he will most likely be right. If you're 21 and he told you it would last a lifetime - that's most likely being unrealistic. The unknown is tissue encroachment on the valve that would cause it to decrease in function. A mechanical valve will not wear out, but tissue may grow into it in such a way that would make it function in a way that it would need to be replaced. And there are rare times when a clot forms on the valve requiring it to be replace.

Each person is different. I hope I never have to have my valve replaced again. But I was young when I had it put in, so I'm not certain it will. But I'll cross that bridge when I come to it.

Thanks Karlynn. I didn't realize that. I hope your mechanical valve does last your entire lifetime.

 

[gadoty1]

I just wanted to tell you guys that i decided on the on-x valve and all of your comments helped me to feel reassured about everything. The biggest hump for me to get over was just being ok with the fact that i need another surgery. After reading thru the site and asking a couple questions i am secure that i am making the right decision and i am not all that scared of coumadin anymore. Thanks!