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[mixduptransistor]

I've been reading this site for several days now and figured it's time to post. In September I will be having an aortic valve repair/replacement and aortic root replacement. I've got a great surgeon and cardiologist here at the University of Alabama at Birmingham Hospital, and I'm really not worried about the surgery itself. I don't have any other complications, the valve is actually in pretty decent shape but my aorta has an approximately 5.7CM aneurysm that is overdue for repair.

Anyway, my reason for posting is to hear from people who have had valve replacement to try to figure out which valve to get. First the surgeon is going to attempt to repair my valve, obviously, but his other options were a homograph or a mechanical valve if that is not an option.

At first glance I jumped almost immediately to the homograph. The doctor gave me a fairly unbiased rundown of the pros and cons of each option. Mechanical requires coumadin. Homograph will require a reoperation, which he is very good at, he will be retired by the time I need a reoperation.

I am 25 years old. I don't run or bike, but I have a motorcycle (not a dirt bike or a sport bike). I've read that coumadin doesn't really affect that kind of lifestyle. However, there are a few things that I enjoy that I think would be counter to coumadin. I play paintball several times a year, and while I am not an alcoholic, and I don't drink like a frat boy, I do enjoy alcoholic beverages from time to time. I know you can have "a few" when you're on coumadin, but if taking coumadin prevents me from having say a 6 pack, then I might have trouble. Also, I'm wondering if anyone plays something like paintball while on coumadin. I get some pretty nasty bruises now from hits, I can't imagine what they'd look like if I were on an anti-coagulant.

Anyway, I hope to soak up all the information I can. I've already let the surgeon know ahead of time I wanted the homograph so that he could have some ready, but they did say that if I wanted a mechanical valve they always have those ready if I change my mind.

 

[Ross]

Hello and welcome to the forum.

Being your age is hard. My personal opinion is to choose what is going to hopefully keep you from further surgery down the road, which would mean mechanical. There are no guarantees though that it wouldn't need replaced sometime in the future, but the likelihood is small. Some people can go through ops with no problems and come out text book perfect. Others find themselves in a fight for their lives. Problem is, no one knows what yours is going to be like, so you have to way the pros and cons of each and decide what's best for you. I would encourage you to read tobagotwos stickies at the top and to visit the anticoag forum to see what Coumadin is all about. You should do this even if you choose a pig or cow valve because should you end up with chronic afib afterwards, you'll be on Coumadin anyhow.

Others will be along to give you the 411 on others. Welcome again!

 

[Karlynn]

Well - first you pull out your crystal ball...

It sounds like you have a pretty good understanding of how Coumadin works, and that's a good start. Most people seem to come here thinking that taking Coumadin is going to put big limits on their lives and we have to spend time letting them know that's not true. So I applaud you or whomever gave you your information (maybe it was here!).

I'll be honest - my son is 25. I'd be very hesitant to encourage a tissue valve with him. But you know your life - if not being able to drink a lot with friends is going to really change your life - then you will resent having to take Coumadin.

BTW - My son's whole perspective of life changed greatly just as he was graduating from college. He was ready to start his carreer and live the carefree, wild single life in Chicago that he dreamed about. Instead - he found himself preparing to be a father, and then a husband. (And I have my beautiful 22 mo. old Avatar!) Life is what happens when you make other plans and he loves the life that he didn't plan. So make your choice for what you think is right for your life and then expect to have lots of things enter in that you hadn't planned for. Go with the flow.

 

[Bina]

Hello and welcome!
Hmmmm, tough call on this one.....at age 25 it would be nice to get a tissue valve and have it last 10 (?) yrs, and then at re-op time choose a mechanical for the rest of your life. Only you know what you can live with.
Absorb all info and remember that we never really know what our lives will be like even 5 yrs down the road.

 

[mixduptransistor]

Hello and welcome!
Hmmmm, tough call on this one.....at age 25 it would be nice to get a tissue valve and have it last 10 (?) yrs, and then at re-op time choose a mechanical for the rest of your life. Only you know what you can live with.
Absorb all info and remember that we never really know what our lives will be like even 5 yrs down the road.

From what I'm reading, I am very close to this option. I know in 10 years time I will be much more subdued in terms of the two or three "risky" activities (paintball, mainly), plus in 10 years there will obviously be advances in surgical procedures, medications, and valves. Thanks for the information so far, I am reading every word I can. I of course put this stuff past my doctors and nurses, but it's nice to be able to talk to people who are experiencing it.

 

[Ross]

You may get more then 10 years out of a newer tissue valve, but in younger folks, they don't last as long as they do in older folks. Just more food for thought.

 

[Susan BAV]

Welcome to the site; I had noticed your member name here for a few days and found it interesting.

Do you have a malformed aortic valve, such as a bicuspid? Or why do your doctors think the aneurysm has developed? Have they checked your entire aorta and are there any other aneurysms developing or what have they said in regard to that?

Whoops - I just checked your profile after I posted this and see that you do have a bicuspid. Do you know if your surgeon has had experience and good results with repairing a bicuspid valve?

I have a 25 year old son and I know what I would recommend for him. But I wouldn't want to go beyond a recommendation, even for him, and would want him to educate himself and have his surgeon's recommendations in mind also.

But I wouldn't feel right actually "recommending" a particular kind of valve for you or for anyone I didn't know extremely well; there are so very many variables to consider with such a choice. From the posts so far, I have seen several helpful things for you to consider though.

You are evidently researching things well. I'm glad you have found a surgeon you are happy with. That's half the battle I think. Best wishes as you make your decision. You will have other questions; feel free to ask them also.

 

[Cooker]

Welcome to the zoo ? This is a call for you and your doctor ? but I go with choosing the valve that gives you the best chance on not having to have another surgery ? coumadin is not the boogieman ? and you lifestyle seems fine for a mechanical valve, IMHO ? and as someone else said no crystal balls here either ? there is no way to predict the future or the what advances research will bring or what your overall health will be if you choose tissue and need a re-op in ten to fifteen years?..I wish you the best.

 

[Bonzo Dog]

Hello mixedupsucessortovalve,

I have a foot in both camps in the tissue v mechanical debate. I've had both. Mechanical went in at 38, endocarditis meant its emergency removal and replacement at 43 with a homograft, ten years on the homograft is now failing, so I face a very tricky 3rd surgery.

Firstly warfarin is not a monkey on your back. Many of us carried on pretty much as before when taking it. You do not become an invalid overnight when starting blood thinners. With a liking for real ale, I managed to drink quite well while taking it. TBH I wouldn't get worried about the occasional six pack binge. A six pack followed by spirits would be pretty foolish though. At risk of sounding very paternal, you will find as the years pass, your fondness for and tolerance to alcohol will change. To base a long term valve selection around your social habits now is not too wise.

The knowledgeable and sense talking Al Capshaw who posts on here, is a big advocate of the relatively new Onyx mech valve. As I understand his posts, one of it's selling points is less propensity to clot meaning a smaller warfarin dose required. (I'm sure I will be corrected if wrong). So it could be a consideration.

That said, in fairness I've found the tissue valve easier to get on with, less alien and more natural than the mech. Hardly surprising as it is tissue, not metal and plastic. Its relatively short lifespan is a drawback though.

Your tissue in now, replace in ten years with mechanical, or maybe some other new procedure, sounds good in theory. My mechanical in at 38, possibly for life, sounded good in theory. Things don't always go to plan though.

A first re-do valve operations carries a marginally higher risk than original surgery. Should misfortune strike and a third op becomes needed, then risks can spiral upwards. It has happened to me through bad luck. TBH I'm concerned your deliberate strategy leaves that possibility open. Where you wanting to get pregnant, then there would be a case for your strategy. If it's all for the sake of a few beers and a bit of paintballing I'd have a rethink.

So that's my two penny worth. In conclusion, at your age I'd go mechanical and leave future events in the lap of the gods.

 

[Bina]

Bonzo has made some good points.
Minor correction: in the future with On-X valves there would be no lower DOSE of warfarin, only a lower INR RANGE.
For example I take a VERY low dose of warfarin and have a higher INR of 3.0 it's just the way my body metabolises the med.

 

[ponygirlmom]

I am 25 years old. I don't run or bike, but I have a motorcycle (not a dirt bike or a sport bike)... I play paintball several times a year... if taking coumadin prevents me from having say a 6 pack, then I might have trouble.

People who know me on this forum will faint to hear me say this, but mechanical might be right for you. See if you can find technical information about the force at which the paintballs hit your body, then submit them to the appropriate expert for advice.

(I say the "appropriate expert" because from reading this forum, I gather that many doctors don't have the latest information about the effects of coumadin.)

Lots of people give up alcohol for various medical reasons (like me and my husband) and I promise you that you won't miss it. A motorcycle accident on the freeway is scary, but SO scary that I'm not sure if a blood-thinner would make that bad an accident much worse.

If you are considering tissue valves (I have a bovine valve) do you know the reason your doctor wants a homograph rather than an animal one? If I remember correctly, homographs don't last quite as long as bovine or porcine. At least, my doctor was worried that a homograph wouldn't last as long on me. Maybe it has to do with the specific heart in question.

 

[Leah]

Good luck in your decision. No one else can tell you which trade-offs are worth it, or aren't. However, here are a couple of thoughts. (I don't have a bias that one or the other is "better" for you and in fact haven't made up my mind about what I'll choose for myself when I have AVR surgery this fall, though I'm leaning toward tissue.)

1. Re. six-packs and paintball, I think it's worth asking yourself whether you value those activities more than you value not having to have another surgery (assuming these activities are a primary driver of your decision). If you get joy from those activities, I'd strongly argue you can equal get joy from others. (I'm not making an assumption about whether you can or can't do these things on coumadin - I don't know enough about coumadin to opine on this - but to the extent that these activities are an issue, this is my response.)

2. I strongly recommend a serious read-through of the anticoagulation forum and self-monitoring forums. People have expressed themselves with quite a bit of passion about what it's like to be on warfarin/coumadin. Many people are emphatic that coumadin is at worst a minor inconvenience. On the other hand, when I read many of the accounts in these threads, it strikes me that -for me - some of the experiences people describe seem like considerably more than "inconvenience." I don't think there's a right or wrong answer to this - tissue valves and mechanical valves are both life-saving and are both "right." If only one were available we wouldn't be complaining. But the issue is how you would embrace the ongoing experience of coumadin or the certainty of a second operation.

3. In a consult last week, a surgeon said to me that homografts may last longer than animal tissue valves but that the reoperation is more difficult. I did not follow up on this and therefore can't elaborate or cite scientific sources for this. I'm not necessarily saying this is correct but the surgeon who said it (and was not opposed to doing a homograft) has a great rep and great credentials, so I'm offering this as something to ask your surgeon about.

4. Surgeons and consumers have very strong opinions, pro and con, about the Ross procedure, which replaces your aortic valve with your own pulmonary valve and replaces your pulmonary valve with a homograft. The "best case" with a Ross is a very long term, maybe permanent, fix without the need for coumadin. Worst case, you now have two valves that can go bad. Again, worth exploring. Ross is done more on younger people than on people in mid-life.

5. I just stumbled on this link re valve replacement in younger people. It may be usefule. (I haven't followed it out but in general the Cleveland Clinic website has great info.)

my.clevelandclinic.org/heart/disorders/valve/youngvalve.aspx

All the best, and remember that you can't make a "bad" choice.

Leah

 

[mixduptransistor]

I don't want to leave the impression that the ability to drink is the only consideration here, it's just one of a few. My motorcycle riding isn't really a concern, as anything that might cause a bleeding incident on a bike is frankly going to be life-threatening regardless of coumadin.

Two things I like to do now that would be impacted would be playing paintball and drinking. Like I said, I'm not a frat boy and basically enjoy hanging out with friends for a BBQ once a month or so. As for paintball, we usually play in the cooler months so I could double up on clothing, but I know there will still be some nasty bruises. I think I'll work up a better post sometime today or tomorrow and post it over in the ACT forum with a more comprehensive list of questions and concerns.

When it comes to specifically which kind of valve in each category (what type of mechanical or what type of biological), I haven't really looked into that. My doctor has done a lot of these, and is fairly well known. I'm friends with his son and feel comfortable with whatever specific valve he suggests, within the category that I end up selecting.

 

[Ross]

My motorcycle riding isn't really a concern, as anything that might cause a bleeding incident on a bike is frankly going to be life-threatening regardless of coumadin.

I'm so happy you understand this! Most people don't and use it as a tool to avoid the mechanical choice. I won't sit and agree with drinking large amounts of alcohol, though we do have one member who does, Moo. Haven't seen him around at all lately, but he goes at the beer pretty heavily and reports no problems with his INR. The thing is, if your prone to ulcers, alcohol will cause problems with your stomach lining and if you get a bleed going in there while on Coumadin, it quickly becomes life threatening. It's not that you can't do it, but it's certainly not encouraged.

 

[Karlynn]

My hubby and I were out on our Harley yesterday. I always wear a helmet, I feel funny without it. Kind of like I always wear my seatbelt - just feels strange without it. The friends we went out with asked me "So do you wear a helmet because of your "blood thinner"?" I told them "No - I wear a helmet because I don't trust Glenn!" But then went on to explain that if we go down, a bad accident will still be a bad accident and the Coumadin won't make a bad situation that much worse - particularly if I have a helmet on.

Don't worry- I don't think we felt that paintball and beer were your only reasons. Like I said - I have a son your age and a 22 yr-old daughter and if I think really hard - I remember a tiny bit of what it was like to be 25

 

[njean]

And then I come along ........

Well, I was just one year younger than you when I found out I needed not one valve but two! In my case however, the surgeon didn't give me a choice on what valve(s) I wanted, he just implanted Cooley-Cutter mechanical valves (obsolete valves now BTW) & I'm glad he made that choice for me!

I've been on coumadin for 33 years & I too have vague memories of what it was like to be young & wanting to do everything I felt like doing without too many restraints. And you know what, coumadin never stopped me.

I rode ATV's (nearly killed myself on one once but survived w/a torn knee ligament); rode pedal bikes in stupid, perilous places, did tournament 3D archery for many years which involved a lot of climbing & traversing grueling terrain to get to your target & then suffered tumbles & scrapes when falling over rocks, brush, etc. Exciting, oh yeah --- did it kill me?

Yes, I've needed to have 3 OHS in my lifetime but my circumstances are not like yours & hopefully you will only need the ONE!!! So think hard my friend, & then do what you gotta do & take it from there!

Glad you found us & keep on reading & learning.

My prayers & best wishes to you!

 

[ALCapshaw2]

Greetings Mixdup -

I'm curious about which of the UAB Surgeons you are considering. (I'm familiar with 4 of them). Have you asked him about his experience with replacement / repair Surgery of the Aorta?

Whatever valve you select, I encourage you to also come up with a Plan B, "just in case" your first choice is NOT viable 'once he gets in there' (as happened to ME at UAB).

When it comes to Mechanical Valves, I'm very impressed with the advancements offered by the On-X Valve. See www.onxvalves.com and www.heartvalvechoice.com for more details. I know at least 2 of the UAB surgeons have used On-X valves. Last I heard, the 'senior' guy was still favoring St. Jude (www.sjm.com) for mechanicals.

'AL Capshaw'

 

[mixduptransistor]

My surgeon is Dr. McGiffin, he's the assistant director of cardiothoracic surgery. This is one of his specialties, the other being double lung & heart transplants, so I'm fairly confident in his abilities. Repair is first on the list, but I will discuss the other options in my order of preference. When it comes to exactly which one to pick, I will probably depend heavily on the doctor's suggestion, as he does a LOT of these and I want him to use what he's comfortable with.

He did warn me that he was very experienced with reoperations, but that if I picked a tissue valve, by the time I would likely need the reoperation he would definitely be retired.

 

[Superbob]

You've gotten some great replies here. If we all had a crystal ball, these decisions would be a lot simpler.

I will chime in with one point: Not to be a moralistic old fuddy-duddy (which I may well be ) I wouldn't make the freedom to drink a six-pack-plus a high priority in the bigger scheme of things. Most likely, you will be able to enjoy a beer or two no matter what kind of valve device you get. Moderation is a good principle to practice in any event. (And I speak as one who, in college, practiced hardly any moderation at all. )

 

[mixduptransistor]

Thousands? Your doctor has done thousands of aortic valve replacments?

I would venture to say he has probably done close to that many. I might have exaggerated a little bit Suffice it to say, though, that he is experienced enough to put my mind at ease.