Anyone ever regret the type of valve they chose?

[Allan Mack]

I have an artificial valve, and I'm beginning to think I should have chosen a pig's valve. I hate Coumadin and having to get my INR done all the time. Plus I'm more susceptible to colds and flus, like I'm suffering from now.

I wish I had chosen the pig's valve because I'd be Coumadin-free now and not sick all the time...

 

[Simon Gee]

No regrets

No regrets

Hi Allan,

really sorry to hear that you're feeling down about your selection of valve. It's a really diificult decision for anyone to make but for those of us post-surgery, and for whatever reason, we have made that decision. It would be easy to say that you made the choice, so live with it, but that would be much too harsh and doesn't take into account the difficulty we've all faced in making that choice.

I too chose a mechanical valve and am on warfarin. However, I have found no reason to regret my choice at all. Yes, I have to have my blood tested every 6-8 weeks and, yes, I can't indulge in some of the activities I would like to, or drink as much as before, but I am happy that my long-term health prospects are very good and that the chances of my needing further surgery are much less than if I had had a tissue valve fitted (I'm 41 and would almost certainly have needed at least one further surgery to replace a tissue valve). As for colds, this has been my second winter with my new valve and I've had a flu *** before each. I'm sure I've had fewer colds and have been generally healthier than before, despite three sons bringing home all manner of germs from school! Maybe I'm just looking after myself better, but I certainly don't feel that warfarin is anything other than a minor imposition on my life and certainly a small price worth paying.

I don't know if this reply will make you feel better or worse. I hope the former, as I'm disappointed for you that this issue is bugging you and distracting you from enjoying your new life to the full.

Best regards,

Simon

 

[Perrster]

I'm fine with mine

I'm fine with mine

As Simon so very eloquently said, our mechanical valves are no longer an issue, but the improvement of and maintaining our new lifestyles are our main priorities.

I read somewhere about a competition bicyclist who had a mechanical valve re-done because he couldn't stand the clicks and blood testing (he reverted to a bovine). He'll be looking at a 3rd surgery someday!!

I'm taking my Cardiologist's opinion for all it's worth...my mechanicals will probably outlive me.

Ask your doc about taking some supplements (Vit C, E, Magnesium, Selenium, Centrum). I haven't had a cold or the flu in a long while...knock on wood!

Best regards,

 

[JimL]

Tomorrow will be six months with my mechanical valve, and I'm still feeling better each day. Coumadin is no trouble at all, although I would not like to be still filling a test tube for the regular blood test. I get a finger prick every couple of weeks.
I went through a period after surgery when I regretted the whole thing; I knew I couldn't go back and undo it, but I wished I had known earlier about the problems I was facing and could have pursued any other avenue than surgery. It certainly is a given that I never want to go through that surgery again.

 

[DickV]

I have a mechanical and do not regret it at all. I damn sure don't want to go through that surgery again and with any tissue valve, I would dread that prospect each and every day of my life.

Coumadin is no big deal with me. I just finished adding on to my house so it is not slowing me down. I self test my coumadin. I have cut myself several times and amazingly did not bleed to death.

I've said it before and I will say it again. Most of the horror stories you read on this board about Coumadin are not posted by Coumadin users.

 

[LUVMyBirman]

I will have to agree with the others on the mechanical being the valve of choice for me. At first when I was on that INR roller costar.....questioned my choice. Soon I started thinking about all of the redos I could potentially face in the future. 30 at the time of my surgery 3+ years ago.

Some individuals have a tough time acclimating to the Coumadin at first. Consistency is the key. Finally figured out that fixed dosing, i.e. same dose every day leveled me off. Occasionally I fluctuate a 1/2mg a day up or down for the week. Home testing is the way to go! I can't tell you how much it has changed my life. Freedom from the lab and appointments mainly.

As for the colds, etc. If you are within your first post op year, your immune system still may be down. I was so sick the first post op winter. After you get over that first year hump, things seem to level out. Adjustment takes time.

I am very comfortable with my decision, and would not change a thing.

 

[RobThatsMe]

Hi,

I also have a St. Judes mechanical aortic valve, take Coumadin, and have not had any issues, or on-going problems.

As far as colds go, I have not had as many as I used to get prior to the surgery. In fact, I didn't even get the flu over the last 2 years, and did not have flu shots. I take vitimins, Coumadin and Atenolol.

I am very active, although some of my activites are not as daring as before, there is no activity that I have eliminated from my lifestyle. As for drinking, Well, I drink just as I did prior to surgery, and have no problems. I home test and regulate my coumadin if required. I test weekly, and rarely is my INR out of range. If you are only testing every 6 to 8 weeks,

I agree with Dick V, Most of the complaining about Coumadin is done out of fear by non-coumadin people. It seems that the majority of folks on Coumadin manage it very well. However, there are some exceptions.

Perhaps looking into a home testing unit may help remove some of your concerns.

Wishing you good health,

Rob

 

[mainframe]

And now for the other side of the coin.....

I had a tissue valve (bovine) implanted 3/15. I would like to say I"m coumadin free, but I had some a-fib problems and am taking coumadin for a couple of months. Getting tested every 2 - 3 weeks. I also wanted to be coumadin free, but after taking it for a few weeks now, I don't feel any different than if I didn't take it, and don't feel it's a big deal.

I also will be faced with another surgery, although I realize that hopefully advances in both surgical technique and longevity of valves will improve. But it's another surgery none the less. And while I found the surgery much easier than I thought (back to work in 3 weeks), it still was major surgery and facing another in 12-15 years at age 60 isn't a thrilling prospect.

I'm not sorry I got a tissue valve, but I don't think I'd be sorry having gotten a mechanical valve either. The idea of being surgery free (I would hope) for long term would be nice. But me and my tissue valve are looking at a second date on the calendar down the road that members of the clicker club are not.

Chris.

 

[Mara]

Allan-
I'll weigh in here. I had the Ross procedure and don't regret it. There are others on here who have had "trouble" with their Rosses. I deliberately chose no to get a mechanical valve because I did not want to go on coumadin, (plus my cardio recommended the Ross) and because I am female, my gynecologist advised me not to go on coumadin. Women in my family have a history of bleeding problems during menopause.

I am sorry to hear the coumadin is making you feel ill. Mostly, I have heard people say that it takes a while to get used to. I hope you get it resolved. I guess, if it were me, and this is just my personal opinion, I'd try to work out the kinks in the coumadin rather than scrap a perfectly good valve. All the Coumadiners who have posted are not looking at another operation. I am, barring a miracle. What a drag that is. Never having been on coumadin except briefly in the hospital, I have not had to deal with the day-to-day effects. I sure hope you can get things worked out. Maybe you really need to jump on you doc to get things straighted out.
Perhaps Al Lodwick has some tips for you, he is the Comadin expert. Allan, there must be away to resolve your trouble with Coumadin. Please don't give up.

If it helps, I had a wing-dinger of a cold this winter, my first pos-op winter, plus I had the flu shot and am taking vitamins and stuff, so the bad cold thing is not exclusive to Coumadiners.

Try to think positively. You "muscled" the surgery. You can "muscle" the coumadin, too.
Best of luck to you
Mara

 

[Ross]

Well, look at the flip side here-Me with a non functioning valve.
I want the mechanical valve and this is what we are shooting for, but I may end up with a tissue valve due to my previous surgery, which appears to be a Ross gone awry.

I'm on Coumadin for DVT and the blood clot in the apex of my heart. I don't like the needle jabs every 2 to 3 weeks, but I surely don't want to have to go through this surgery a 3rd time. I don't even want to go through it a 2nd time, but I have no choice in the matter.

I'm certainly going to bug the heck out of my Cardiologist to allow home testing of my INR just as soon as possible after surgery. All this being said, it's a minor inconvenience compared to a 3rd surgery for me.

I do hope you get to feeling better soon. We are all different and have those crazed chemical make ups that make us or break us.

 

[LUVMyBirman]

Hi Ross,

Nice picture

Will agree with you about your choice. It appears you would have to take Coumadin regardless of your valve choice? So, why not the mechanical.

This is something I have thrown around in my mind for future surgery. I already have the mechanical, and at times an irregular sinus rhythm. It is a possibility I may be in a-fib as I progress in age, thus the need for a blood thinner regardless. Hopefully by the time I am in my 50's and looking at surgery again.....there will be a better blood thinning medication. Maybe this Exantra we are hearing about?

Pester your cardiologist until he agrees to give you a script for the home test unit. You will love it!

 

[srwieland]

Hi Allan,

Thanks for your courage in bringing up this topic and sharing your vulnerabilities with us.

I think whether you regret your valve or not depends on how you're doing with it at a given time. I'm sure most of those with no problems are not having any regrets whatsoever, as some of the previous comments here attest.

I had no problems, indeed superb results, for 8 months post-op, and certainly did not regret my choice in the least, even if it was a less time-tested valve than most. Then, they found out it was leaking, but I still had no symptoms and no regrets. Then, they put me on meds that were making me faint and limiting my physical exertion, and then I did begin to have regrets. Then, they told me I would need to replace it again in the not to distant future, and then I had a lot of regrets! Then, they got the meds straightened out and I was relatively back to 'normal'. My regrets decreased. Now, about 1 year post-op, they say that my heart size is again decreasing and heart function improving, and that I may not need surgery again for some years. My regrets have decreased even further, though I still have some for sure. Although many VR veterans have few problems post-op, it's not that unusual for some to take a while to adjust or even need to undergo further surgery. In my case, I've experienced both.

So, I think it is wrong to consider this as primarily a valve choice issue. There are plenty of examples of all kinds of valves going wrong. If we make an informed choice of what valve suits us best, if it works as it is supposed to, then we have made the right choice. If it turns out not to work as it is supposed to, then that's a different matter.

I actually have no regrets whatsoever for my valve choice and might very well choose it again if and when I need to. The problem is not that this kind of valve never works as it is supposed to, but that, in some few cases, it hasn't. Plenty of mechanical valves have had to be replaced for leaks or infection or even structural failure; that doesn't mean they are a bad choice unless the incidence of problems was truly more than it is.

Even with something as new as the SynerGraft, most recipients have not had problems in the short-term. Of course, the long-term problem rate is not yet known but the short-term rate is, and it seems to be a very good one at that (at least in the US). My leak is evidently one of very few short-term problems at this point, and so I don't think I'm warranted to blame it upon the kind of valve, but rather upon the particular valve (or surgical treatment) I received. Similarly, if I were to have chosen a mechanical valve and have been one of the few to have problems with it, I would not regret my choice but rather the unfortunate but less common outcome that the particular valve or surgical treatment I received did not turn out the way it usually does.

In any case, we should consider the outcomes of others, both statistical and anecdotal, before making our valve choices but always remember that every choice involves a relative amount of risk. I chose a bit more risk than most but not all that much more. It's not like there was no track record to go on. CryoValve's in general have an excellent and long-term track record and the SynerGraft treated valves have had impressive short-term results, though, of course, not in all cases.

I believe that this discussion is particularly relevant for those who have had some problems with their valves and would like to hear more from more of them in this thread. It's not that it's not also valuable to hear from those who haven't had problems, but I think the tendency there will naturally be to say that their choice was perfectly fine, even though that is not a whole lot of solace to those of us, such as Allan and I, who are having problems.

Allan, I hope things get better for you. We have made our choices and have to live with them. I don't think we should change our valves if we don't absolutely have to, but, if and when we do have to, we certainly have to reconsider our previous valve choice very seriously.

All the best and God bless!

 

[Allan Mack]

Thanks for the responses, everybody.

I've been on Coumadin for over five years now (surgery was done in '97). The first four years were okay, other than the 1 or 2 bad colds/flus I would experience each year (before my surgery, I'd rarely get a bad cold/flu). My INR was also pretty stable for the first four years.

Then, last year I experienced my first major setback--a hematoma that put me out of commission for about three months. The hematoma was made worse by the Coumadin I was taking. (You can read about this on my website.)

Now, I am again experiencing headaches, but I think it's more to do with my cold/flu. But the headaches brought back memories of the terrible headaches I suffered last year as a result of my hematoma.

Anyway, reading all your posts here has convinced me that, despite the Coumadin, despite all the INR tests, a mechanical valve is still probably the better choice. I'd never want to go through heart surgery again. But those headaches last year were definitely bad enough that I actually had second thoughts--another surgery didn't seem so bad at the time because all the pain I experienced during my post-op surgery in '97 were nothing, yes, nothing, compared to the headaches I felt last year.

Thanks again for all your responses, everybody.

 

[sylviayasgur]

hi allan!
i don't have much to add to this discussion; everyone seems to have covered all bases.
my husband, joey , had a ross procedure. he was very anti- coumadin and although his cardio recommended a mechanical valve (joey is turning 50 this july), joey refused.
after his surgery he went into afib and had to take coumadin for awhile. he was very discouraged and felt that he should have jsut gone with the mechanical valve if he had to be on coumadin anyway. after a month he was taken off the coumadin and became more comfortable with his choice (rp).
about a month ago, at his 6 month echo, they found that his valve had a moderate to severe leak.
joey and i could not believe it. at that point he was so upset and said that if it had to be done over, he hwould like a mechanical put in, because he never wanted to have to do this again! fortunately, the tee showed that the valve was fine and that it is not a severe leak (his valve has a mild leak and there is an additional mild leak coming from a fistula).
the emotional roller coaster associated with this kind of surgery_only when problems arise_ is tremendous and draining.
i thank God every day for making it okay and just pray that we can buy as much time as possible before he has to do this again.
i'm so happy to have him alive and well and active, living life to its fullest. if it meant having a mechanical in order to do this, i'm sure he would never object. in fact, i think he is envious of those who have mechanicals in the sense that they never have to undergo this surgery again.
my opinion is that if it works, it's the right valve. everything else is manageable, no?
hope this helps some too. please let us know how you're doing.
be well and God bless,
sylvia

 

[Christina]

Allan,

Sorry to hear you are having problems with Coumadin. I don't believe Coumadin has anything to do with catching colds and flu's. You are catching that from people and places you go.
Yes, it is a drag to go to the lab all the time, that's why I got my Protime machine and do it myself. It is in one word "WONDERFUL". Would never want to go without my Protime anymore. I haven't gone to the lab in close to a year now and used to go up to three times a week because my doctor at the time just couldn't get me stable. Protime is the way to go. What a life, what freedom!!

Hope your problems will subside.

Smile,

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

 

[Allan Mack]

Hi Christina,

My doctor told me that I'd be more susceptible to flus/viruses because of the mechanical valve. I was wondering if having a pig's valve would reduce this tendancy to come down with bad cases of the cold/flu every year...

 

[Zipper]

'Da Flu..

'Da Flu..

Hi all,

As has been stated here...flu's / virus/ colds are in the air...Our immune system and contact have a major role in who gets what.

I have been on Coumadin for 4 yrs now..I work in a hospital, ER admitting + all walk in for Lab...Xray. We also house 116 patients for skilled nursing, and 6 acute care beds.

I am exposed to every imaginable 'virus'. For the most part, I do not get the things I'm exposed to, before and after Coumadin. Soooo..I have to say..in my experience....and maybe Good luck...The addition of coumadin to my life has had no effect in my ability to ward off these contagious virus'.

Zipper

 

[Perrster]

Hey Zip!

Hey Zip!

Zipper,

I got your check yesterday-thank you.

I didn't realize that you are one of those wonderful people who put up with SO much in the hospital environment. Are you coming to Vegas?

Your message realtive to your work made me wonder about our fellow in Australia(?) who was having trouble getting his pilot's license back because he is on Coumadin. I wonder if he ever succeeded?

Cheers!

 

[Zipper]

Hi Perry,

Thanks for letting me know the check arrived safely. Las Vegas is still in question for me as it depends on staffing needs at my hospital..if the timing works out, I would really love t be there and meet everyone. I'll give it my best shot!!!

Hmmm...yes..I wonder if that fellow did get his pilots license back. That certainly was unfair..I hope he was able to get it. I have many pilot friends..small planes...A small airport is just down the road from me about one mile. They would go NUTS if they couldn't fly..lol!!!

Take care and maybe see ya in Vegas???

Zip *~*

 

[McCln]

To Allen and Ross

To Allen and Ross

To Allen,

I do not regeret have the St jude's valve. I am not ready to have surgery again in five or ten years from now. You do what you feel is necessary for you, do what feels right. You know best.

To Ross,

Perhaps you can have mechanical despite have a Ross. Ask the Cardio about it. Get some insite on possibilites. You hang in there. You will be alright.


Caroline
09-13-01
Aortic valve replacement
St judes valve