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]

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 jab 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]

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]

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]

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,

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

[ddarsch]

Allan:

I had a porcine valve put in in Nov 1991. I have had the 11 most wonderful years of my life. I am now faced with making the decision again, as the valve is beginning to show some deterioration. I am leaning towards another biological, but will have to make the decision concretely within the next month.

So, no regrets what so ever - although I am scared to go through the surgery again

[Beverly]

Allan,

I have been trying to post a response to your question but have been having a problem doing so. In 1990 at the age of 39 I faced the question of what type of valve to select and I asked my surgeon what valve he would recommend if I were his sister. He recommendd the human valve but also advised me that if at the time of surgery the valve was not a perfect fit he would implant a St. Jude's mechanical valve. I recall when I regained consciousness while still on the ventilator I heard the clicking and I knew that I had gotten the mechanical valve. I was disappointed. Since that time I must say that I can not complain. I had what I guess is the usual time of adjustment getting my coumadin dose right and usually I go about once a month to have it checked now. I don't mind. As for my health I can not say that I have suffered any unusual amount of illnesses. As a matter of fact, this year I didn't even have one cold. This is a record for me even before I had my aortic valve replaced. The clicking while a little bit of a concern to me at first is no longer noticed unless I am in a very quite room and particularly trying to pay attention to it. I hope this response is helpful to you.

Bev

[Peachy]

Hi Allan

I got my aortic valve replaced on 7th January this year. I went for the pig valve. Choosing which type of valve to go for wasn't an easy decision to make. I decided on the pig valve as I didn't want to have to take coumadin for the rest of my life and I felt that my active lifestyle would be affected by the fear of falling and injuring myself. The surgeon recommended the mechanical valve but when I said I wanted to go for the pig one he was quite happy as long as I knew it would only last 10 to 15 years. I'm hoping that by the time I need a replacement there will be something new on the market which will last a lifetime and not require medication. Anyway I feel great now and have so much more energy. I have had the flu jab for the past couple of years and find that this has stopped me from even getting bad colds. I'm sorry that you have regrets with your choice and hope that you can resolve your problems and enjoy life.

[Bob Gleason]

Since I had my valve replaced (aortic) Nov, 1999, I have struggled with how loud and how strong it is. Every day, I know it is present, but everyday I also know that without it I probably would not be here. I had a St Jude valve implanted, and my cardio says its the loudest and strongest he has ever heard. People near me can hear it and sometimes it is actually painful for me.

But, I believe this is because of my physiology and nothing else. Others have mechanical valves and do not hear or feel it as I do.

Deciding which valve or procedure is difficult, for sure, but I have no regrets for the choice that I made.

And I don't mind the coumadin.............or the blood testing. Its LIFE we are deciding upon here and there are choices one can make.

[Rain]

Allan,

Do you really think it’s the coumadin causing you to be sick all the time?

I don’t think I’m !"more susceptible to flu/viruses because of the mechanical vavle". [

COLOR=blue]Cool!! I found color! lol[/COLOR]

Since my heart surgery 4-6-00 I’ve only been sick one time... strep throat. Wait... I did also have a cold. I’ve never had a flu shot in my life, but I don’t even remember the last time I had the flu... well, I was constantly sick with colds, etc. the last couple of years before the heart surgery. But that don't count... I now know that was because I was in chronic heart failure. I’ve always had a great immune system, I’ve always been healthy... well except for cervical cancer and heart failure. :confused: LOL

Do you mechanical people out there think you are more susceptible to flu/viruses?? THAT would make consider a different valve way more than coumadin. I just don’t believe it’s true. If it is, I wanna know before Ryan has to make this decision.

I've probably been one of the biggest complainers about coumadin, I have to say..... It's not all that bad! You know, it can be as simple as eating three meals a day?! Hilarious! I’ve made eating a little more of a priority. I still do all the stuff I did before taking coumadin. I’m even thinking I would rather Ry have a mechanical valve. Although he’s thinking tissue. It’s nearly impossible to convince a young, strong 18 year old that he will one day be an older, weaker man.

Rain
P.S. I think it should be standard procedure to issue a pro-time machine with every mechanical valve

[Zipper]

Hi Rain,

In my experience with the mechanical valve and taking coumadin...4 yrs today!..I have not had any additonal illnesses. I do have the 'flu shot' each year as it is recommended for those wit heart disease and also because I work in ER admitting and am exposed to EVERYTHING! This last year I have not had a cold even!

I agree about the Protime unit....I've only had mine a short time and my insurance refused to pay...but I would advise anyone to get one. As even going to the dentist requires antibiotic.. like to be able to test before and after. Protime allows this and makes me feel more secure knowing my level.

I know valve choice is difficult..it seems especially for a young person..Best of luck to Ry in making the best decision for him !

Zipper

[RobThatsMe]

Hi Rain,

I have had a very similar experience since I received my mechanical heart valve. I do not seem to catch as many colds as I used to prior to my surgery. In fact, it is rare that I catch cold, and have not had the flu since my surgery over 2 years ago.

Coumadin hasn't been a problem, and yes it wuld be nice if everyone was able to get a home testing unit when they receive a mechanical heart valve, or for any reason that requires having to take blood thinners.

Good to see you posting!

Rob

[ILoVeNY25]

Dear Allan,

I must say I understand and sympathize with you greatly, I am almost 6 weeks post op from AVR/MVR with St. Judes, and question myself everyday if I made the right desicion going with the mechanicals. My INR has been hard to control and I've been running to the lab, sometimes 3 times a week. Being only 19, I had the decision to make if I wanted to go through this surgery again. I don't want to but I don't even know if the valves will last, I hear the span of the valve is 30+ years but I'll still only be in my fifties. I also made this decision knowing I may never be able to carry a child, Even though I have some regrets, I think I would probably make the same choice again if I had to and just thank God everyday that I'm alive because of these St. Jude valves. I hope you find peace with your decision.

[Rain]

Nicole,

Choosing a heart valve is a very tough decision, especially when you’re so young. Try not to second guess yourself.

I wanted to tell you... I had the hardest time getting my INR stable. It seemed EVERYTHING caused it to swing one way or the other. I finally started keeping a diary of everything I put in my mouth and the time of day. I also kept track of when I missed my exercise class and anything else I could think of that was unusual to my daily activities. It was very helpful! Amazing how missing a meal or an exercise class can mess with your body!! I got to where I felt like wringing my cardios neck when he said the word ‘consistent’ to me!!

I don’t eat meat.. But I DO eat a lot of vegetables, rice and beans. I found that what I was eating didn’t make as much difference to my body as simply making sure I did eat.. consistently. lol Even with eating all the salads and whatever else I eat.. I still only take 3 ½ mgs a day.

Each of our bodies are unique. But never the less, a diary can be very beneficial. You’ll be okay. :)

Rain

[Dan O'Brien]

I am now 15 months post AVR surgery and I went with a homograph. I am 38 years old with two young children. I have been quite fortunate so far to have had no difficulties following my surgery. I have felt pretty good for the last year. I take a baby aspirin and a multivitamin a day, and that's it. Otherwise, I feel back to normal or better.

I know there will be another surgery for me. I found the initial surgery to be less traumatic than I expected, although still no picnic. I am not worried about doing it again right now. I am happy with my decision so far. Just my two cents worth.

[MarkU]

I'm almost 18 months post AVR and have absolutely no regrets about my decision to have a St. Jude valve.
I was 47 at the time of my surgery and didn't want to face the prospect of additional multiple surgeries in the future. Even though surgical techniques will surely improve dramatically in the next twenty to thirty years, I worried about the accumulation of scar tissue and the prolonged recovery time as I age.
I would also worry about the accumulated effects of by-pass time. A good friend of mine is a perfusionist and we have had many long discussions about this. While the procedure is as safe as they can make it, there is still a lot they just don't now about long-term effects. Definitely more in-depth study is needed in this area. I have seen where they are doing beating heart coronary by-pass surgeries now, but I don't see how they're going to manage that when doing a valve job.
The Coumadin has been no big deal at all. I lead a pretty active lifestyle, but haven't experienced any bleeding problems with minor cuts and scrapes. A head injury would be my biggest worry, but I'm not really into any high-risk activities like riding motorcycles, etc.
All-in-all, I'm happy and content with my decision.

[joy]

Hi Allan, I had my MVR on 8/27/01, and I had a Bovine put in. I also get not just headaches, but migraines. My cardiologist put me on metoprolol which controls my PVC's as well. He also told me to take 2 aspirins a day, instead of 1. I also unlike a lot of you have to take 2 penicillin pills every day. They are NASTY! But I am allergic to eggs and can't have to Bicillin shot. That also means that I cannot have the flu shot. I have fewer colds, and I get over them sooner. It used to take me about 3 months to get over a cold, but now it takes me like 2 days and I feel better. I know i have a least 2 more surgeries in my life, and yes, the next one will be a mechanical, but I was willing to take the risk because I am sure that medical science will come up with something new that will out live our bodies. Myself, I am forgetfull, and have a habit of forgeting to take my meds on time without my husband's reminder. I couldn't do that with coumadin. That was the main reason I chose the tissue valve.

Nicole, I know it sucks not being able to carry a child, but like you I had rhuematic fever when I was very young. After my first child i got something called sydenham's chorea. The rhuematic fever went into my central nervous system. I couldn't control muscles at all. I couldn't talk, eat, sleep, I would have seizure like things where I would black out and run into things. With the risks like that out there, I wouldn't want to get pregnant. I went into a coma during my second pregnancy, and had to drive to Seattle(a two hour drive from where i live) every week. I am glad your surgery went well, try not to second guess yourself, you are obviously very level headed for someone your age. You're more mature that I am! Take care of yourself, alright?

[gary]

I didn't have time right now to read all the responses, so if this is a repeat, my apology.

Eliminating the Coumadin concern by choosing a tissue valve will not necessarily work out that way.

After two years post-op with my bovine valve, I am now on Coumadin due to a bout with A-fib three weeks ago tomorrow.

This may be temporary, one hopes, but it may also be permanent.

In the event that you did not know that coumadin might still be necessary depending on your age, overall c-v condition, and other maladies (or absence of them).

[ALCapshaw]

Gary,

Why did your cardiologist decide to treat your A-fib with Coumadin?

I take a low dose of TOPROL XL (Beta Blocker) which works fine for me. Seems like a better solution than Coumadin !

'AL'

[Johnny Stephens]

A-fib can cause reduced blood flow or pooling in the atrium, resulting in formation of clots. The coumadin is frequently prescribed to prevent these clots from forming.

[gary]

seems to answer questions with curt or incomplete responses. I usually have to guess or interpolate the rationale.

.

Since an A-fib incident would have me headed for the hospital in about an hour at most, and I'd be on a Heparin drip a few minutes after that, AND it takes at least 20 hours for clots to even think about forming, the coumadin seems to me like a complete waste.

Since this was my first (and hopefully last) incident, and he does yet not know for sure if I'm A-fibbing WITHOUT being aware of it during the day or particularly while sleeping, he is being cautious since more than 20 hours might go by and a clot might get loose or form.

That's the only reason I can think of.

He's going to put me on Holter for 48 hours on July 19 and if there are no recorded A-fibs during that time and none since a month ago, he will likely stop the coumadin.

Conveniently I have run out of my non-refillable scrip last night and I will have an opportunity to 'test' whether a cessation of it will relieve these rashes.

The only other thing I 've done differently is switching to de-caf coffee and possibly the process or chemicals they use, my have casued an allergic reaction.

I'm checking that now for any information on the 'net.

[gary]

reduced flow. My resting heart rate has been in the low 50s and sometimes hits the high 40s so he may be considering that instead of the A-fib problem.

I'll talk to him Monday to relate the rash incident and get the scrip filled if he orders it.

Though I don't expect my heart rate to change between now and the 19th of July when he may cease my Coumadin altogether.....this heart thing is as close to an art form and at least as mysterious as calligraphy or haiku.

[Nancy]

HI Gary-

One thing we've discovered throughout all the years that Joe has been jousting with his heart problems is that the farther down the road he goes, the more complicated the situation becomes. There are sub-conditions such as afib, CHF and pulmonary hypertension, now cardiac cirrhosis, which ebb and flow. His meds sometimes have to be adjusted accordingly, and he is always getting bloodwork. To get a complete answer from his cardiologist as to just what is going on at that particular moment, we would have to schedule an all day appointment, and his cardiologist would have to assume the roll of professor, complete with charts. Then the next week, it could all be different.

We understand an awful lot about what is going on with him, at least enough to keep him relatively safe for long periods of time, but the balancing act is what we're going to the doctors for and they do it very well. It's a tough job. But we trust their judgement. If we have questions, we usually get a fairly short answer. It's too complicated. And sometimes it's like a house of cards.

You're right, cardiology and internal medicine with heart valve patients is truly an art.

[Stevo]

This is as wide as it is long. Pyro valves have thromboembolic prob's, porcines (such as the Wessex medical) are gluteraldehyde fixed non- allografts, hence will be avascular and require excision and re-implantation.

Depends which you would rather have- anticoag. therapy or reintervention. Porcines don't always mean no Coumadin, anyhow

[sylviayasgur]

hey gary!
what did the holter results show? are you in afib? is it constant? intermittent?
what did the cardio say? joey is on amiodarone for his afib, but he was successfully cardioverted several years back, after which he was put into the hospital to regulate meds to prevent the afib (again, successfully). 4 days after his surgery he went into afib and his old meds did not work, so they opted for the amio, which has been a wonderful drug for him (i know others have frightening stories to tell, but it is working well for joey).
take care and please let us know how you're doing.
be well, sylvia

[gary]

my Cardiologist won't read my Holter results this week as he is on a vacation and does not want an associate to read and relay the news.

He will get to it maybe next week, but I won't hold my breath, just keep taking the coumadin till advised otherwise.

Coumadin truly is a pain in the neck and I admire those who take it with a positive attitude. Even once you're regulated, if you step out of line just once, bingo! The juicy sweet peppers are looking cheap right now, so I like to sliver them and cook 'em for an hour till the nearly melt. 6 huge peppers can then fit into a coffee cup, in essence binging on sweet peppers. Uh-uh. Can't to that. Go to the beach for a week, eat shellfish and seafood, well---there the INR goes again right out the window.

Thank heaven this is only a protective measure for the 5% chance I might get A-fib and I might not be on Heperin within 24 hours. When I fall to 1.3 like I am now I don't get all discombobulated that I'm gonna have a stroke. At least of the thromoboembolytic kind.

72381433

[SHerrin Hutt]

Hi Mack,
I too, have a artifical valve. I have had so much trouble with my inr and the clicking is driving me crazy. Mine is so loud my whole family can hear it. I have so many brusies that I look like I have been abused. Plus this valve is messing up the blood just as bad as the bad valve did. Sherrin Hutt

[ALCapshaw]

Thanks for 'Sherrin' your story Sherrin.

What kind of valve did you receive? What manufacturer?

My St. Jude Mechanical can only be heard if my heart is really pounding (after exertion) in a very quiet room.

I'm curious about your bruising. I've bumped into a doorway and other objects but show no signs of bruising. What is your INR?
Does it remain steady? You may want to consider a home INR testing unit if your levels fluctuate.

'AL'

[SHerrin Hutt]

Hi AL,
My INR goes up and down. The high has been 6.4-to a low of 1.1 this as been going on since by valve surgery of 4/21/02. I have a st.Jude valve. It is really lound. My youngest daughter, who is 19 wants to know if they could use some kind of oil to quite it down. I told her I didn't there was anything they could do about it. I guess I will have to live with it. I guess I really should worry if I can't hear it. I had my inr check last wed. it was 2.2. I am going to an oral surgeon this afternoon for an abess tooth. My cardiologist wants him to put in the hospital to take out the tooth because of my history with strokes and blood clots. I will feel better if they do it this way. Not that I want to see a hosptial. But I want to live thrrough this without having a stroke or bleeding to death. Thanks for writing me back.

SHerrin Hutt
Mitri valve repair-4/99 cleveland clinic
Mitri valve replacement-3/21/02 norton's louisville

[Johnny Stephens]

Hi Sherrin

According to my surgeon, the loudness of the valves is effected greatly by individual anatomy. Since we're all put together differently, we're likely to have different "loudnesses" of these things.

[McCln]

The only thing I regret is the fact that I won't have children in the physcial way, but I can adopt children. Otherwise, no real regrets. I do not like surgery and want to put off anymore for as long as I can. I am glad to be alive and will live longer because of the choice I made. In taking the coumadin, it is not bad. You only take it once a day with ecotrin. I have to take other meds because I am retaining water. Otherwise, I am feeling great. Please be happy about being alive. I love walking now. Before, walking as an effort everyday. Feel blessed that you are more able to do more now than before surgery. Take care.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

[sscholz]

http://www.awesome-art.org/images/manny2.jpg

I Don't regret my choice of valve, St. Judes Mechanical, this being my 3rd Valve the first 2 were Porcine, in 76, and 85, the last one was installed in 2000. The Coumidan is a drag, but so is the surgery. Beer consumption has been curtailed a bit. But at my age beer consumption starts to stick. Age 41. Still fairly active, walk and ride bike to work. Can still hang in there on the Curving Whiffle ball.

Sam

[DaveCv67]

I hear a lot about beer and how you need to cut back. Why is that? I thought consistancy was the thing.

[sscholz]

:D

As far as I can tell, alchohol makes you thinner which is good, to thin is not good if you fall down, crack the melon, ooze all over the place. Consistancy is good, put 4-5 beers consistantly does not make for squeezing into the speedo.

But the days of vast alcholic consumption are over for me. I look at life between the valve replacements (15 - 20 years) the last being in 2.02, as being on the newer end of getting things or something done. I guess it's like that in life but these surgeries give one time to gauge the process, the yardsticks along the way. Hopefully this "life time" valve, still running in a test sheep someplace, will make me find a better measuring system. But any way less beer doesn't make me appreciate beer less but more, I just fall asleep if I have to many more.

Sam

[tnboomer1013]

I also had a mech. valve or should I say a bass drum inserted into me. It was last July so it has been just over a year now. I can't speak for everyone here but I have some very mixed feelings about it. I have a carbomedics valve and it can be so loud sometimes I can't fall asleep.

I am glad that I don't have to go through another surgery. But with the clicking and the it seems like the every week visit to the lab, watching what I do at work because I am in heavy industrial constuction. injuries are a part of everyday life for us. I sometimes wish I had a tissue one. Going into surgery I had wanted a Ross Pro. done. because of the blood thinner therapy and what I do. But That was not possible because of complications. I often think what it would be like to not have to worry about coumidin and hear this thing banging away in my chest. Who knows what might happen in the future. As the good book says - no man is guarnteed tomarrow. And there is another thought, because this was brought about because of birth defects and not knowing about the danger of what was going on with me. I unknowingly lived with a time bomb for 44 years. I shouldn't have been afraid of resurgery years down the road.

But I do have a valve they say that should last my lifetime and because the two bypasses I also had done were done with mamory arteries I shouldn't need resurgery on those either. It is a love hate thing with this. At least it is for me.

I guess what I am trying to say is that we have been given a second chance. Though with a few changes and maybe a few more hassles. But I can live with that. I want to get old and grey and be able to aggrivate my wife for a long time and spoil my grandkids. I will be able to do that. God willing.

I hope things work out for you. You have alot of good advice here along with people who have been through what you have for some real great support. I know I used some of that support last year.

[Christina]

Hey Boomer,

I was of the same opinion about the Sultzer Carbomedics valve beating like a bass drum in my chest. It was thumping in my throat and I could see the thumping of the valve through my eyes as I was watching TV.
During that first week I complained to my husband how it felt to have a mechanical valve thumping in my chest (he of course had no clue) and that I had no idea how I ever would get used to this. I didn't want to gripe too much, because I didn't want to sound ungrateful because it did keep me alive.
As you can tell I said "was" because I no longer have that Sultzer Carbomedics valve in me.
Because of a screw-up at the cardiologist office, 11 days after the Carbiomedics was implanted my surgery needed to be redone, and my surgeon implanted a St. Jude's Mechanical.
This one I cannot hear unless everything is quiet in the bedroom and I am on my left side trying to fall asleep.
So I always have to tell the story that something good came out of my second AVR surgery.

Boomer, you should think about getting your own Protime machine and do your own testing. This already should be a huge load of your shoulders when you can do your own protimes. This is "freedom" man.
I've been doing my own protimes for more than 18 months and it is great. No more labs to go to. I test weekly but call my doctor every other week with the results and he is fine with this plan.
I am going to Europe this winter and am taking my protime, so no worries about finding a lab for protimes.
QAS will help to get your insurance to pay for the machine. Just call 1-800-298-4515 and ask for Lance or Brian.


Happy ticking!

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
Tucson, AZ.
Dr. Gulshan Sethi

[SHerrin Hutt]

I too. Don't know rather I made the right choice with the st. jude.
My surgery was in 3/02 and my pt is up and down like crazy. Trying to get the insurance co. to pay for a machine. Right now I am going every week. I was in the hospital for a week just to get an abess tooth pulled. THe ticking drives me crazy at times. The migraines are getting worse. I am going to ask a crazy question?
When your pt is real low can it effect your thought & memeory process? I am beginning to thinnk I have old timer. I just turned 50 my last b-day. Don't get me wrong but I am glad to be a live to see my two lovely girls grow up. Just got back from a visit to Boston with my girls. It wa so nice not to have drag around oxygen tanks everywhere I go. Not to mention what it did to my back for the three years I carried it around.
THanks evreyone for listening. I think my family has had enough.
It just nice to have a place to vent.
Sherrin Hutt

[SHerrin Hutt]

Originally posted by ddarsch
Allan:

I had a porcine valve put in in Nov 1991. I have had the 11 most wonderful years of my life. I am now faced with making the decision again, as the valve is beginning to show some deterioration. I am leaning towards another biological, but will have to make the decision concretely within the next month.

So, no regrets what so ever - although I am scared to go through the surgery again

[csutherland]

We don't discuss it much, but I think both Jerry & I have doubts about his choice of St Jude's mechanical valve.

The good points: Hopefully it'll never have to be replaced. In his case it isn't noisy at all. I've only heard it twice and had my ear on his chest then.

The disappointments: He has rarely been able to go more than 2 weeks between INR testing. And he bleeds so easily that we constantly have to be on guard about stains on clothes, upholstered furniture, etc. He's very active so gets lots of "boo-boos". But the main thing is that we didn't comprehend that he'll never be able to take an anti-inflammatory drug. He's had severe plantar faciaitis (foot pain) for 3 months or so, and anti-inflammatory drugs are the best thing for that. And when you think of another 30 yrs (he's 65) possibly with arthritis, etc. that's a long time to do without those drugs.

It just seems to me that the doctors sure push the mechanical valve. Do they get a kickback? Am I too cynical?

[DickV]

Seems to me if doctors got kickbacks on valves, they would put in tissue valves because they need to be replaced far more often.

My doc left it up to me and told me I didn't have to decide until the day of the surgery.

[wlaldridge]

My guy was equally willing for me to choose.

The St. Jude is done more, taught more, and is less technically challenging (fewer stepss) and offers shorter aortic cross clamp time. All in all they are less involved in the down the road effects than they are in a good outcome a the time of surgery.

I know my guy is more comfortable over all with the mechanical but understands the desire for tissue. Some times the anatomy dictates that the mechanical is more suitable, he will just have to check out the lie and play it as it lies-don't know if he golfs.

[tnboomer1013]

Don't know about resurgery ha. Alergic to pain!!!! But I have already tried to get the Pro Time and my Ins. Co won't pay for it. Calls it a convienence and not a nessessity. So it's off to lab every 2 weeks. Wish I had one though. Oh well.

[persianlady]

DEAR ALLAN MACK HELLO MY NAME IS CHRIS IM 48 I HAD AROTIC VALVE REPLACED TWO YRS AGO I CHOSE THE ONE I WANTED WHICH WAS A MECHANICAL ONE BUT I GET TIRED OF CHECKING THE LEVEL OF COUMIDIN I HAVENT DONE IT IN OVER A YR BUT MY COLD I HAVE A WORSE AND FLU IT GOES RIGHT TO MY LUNGS WHEN I GO OUTSIDE IT HURTS TO BREATHE IT FEELS LIKE COLD AIR GOING DOWN MY LUNGS AND BOY DOES IT HURT THE ONLY WAY TO STOP IT FROM HURTING IS NOT MOVE AND AFTER MY SURGERY MY LEFT ARM GETS NUMB NOT ALL THE TIME BUT AT TIMES ITS SCARES ME HOPE TO HEAR FROM YOU CHRIS

[Nancy]

Hi Persianlady

I read your post and it said that you haven't checked your Coumadin level in over a year. Did I understand that correctly?

If that's true, you need to get it checked ASAP and you have to continue to get it checked regularly. It's dangerous not to get your level checked and you also have to make the adjustments in your dosage that the doctor says.

[TSH]

Hello. I agree with most of the others that your colds are not related to the Coumadin. I'm on Coumadin, and I actually get less colds now than I did prior to the valve replacement.

I regretted my choice for the first few months because the clicking of my St. Judes Valve drove me nuts. I still hear it now, but not very often and I am quite used to it. I guess we humans can become accustomed to most anything.

The only time I regret the choice now is when I'm out with friends and can't drink alcohol with impunity like I used to. Unlike Rob, I'm still a little nervous about overdoing it with the alcohol. I guess I'm just paranoid that I'm going to overwhelm my liver with a Coumadin/Alcohol cocktail. So, I limit myself to 3 drinks. (That sucks!)

All in all, I think we mechanicals have it best not having to worry about another surgery in the foreseeable future. (Because I know I would worry about it if I had a tissue valve.)

Take care.