Valve statistics

[Zipper#5]

Hi! This is my first post to your site. I'm a 44 yr old adult with congenital heart defects and will be undergoing a reoperation for a leaky bovine valve put in one year ago. It's the Carpentier-Edwards valve and apparently is now leaking like a sieve from the inside and the perimeter. Naturally I am very upset over this. Do you have any statistics on reasons why this would fail so quicky? I was led to believe it would last at least 10 years. Can calcification occur this quicky? I know about endocarditis, already had, that's why I had the replacement.

I am very much opposed to a mechanical valve due to the need for coumidin but find I may have no choice now. Thanks.

[Nancy]

Nice to have you join the group. You're quite a veteran! I think you'll find a wealth of info. and support here.

My husband Joe has had 3 valve surgeries, 2 lung surgeries and has a pacemaker.

He has 2 mechanical valves and just had a repair on his mitral for a small leak.

He's been on Coumadin for 24 years. He's used to it, and has suffered no ill effects from it. The docs keep it quite well regulated. Don't let that worry you too much. I think it's much more scary to have to have another replacement valve.

[Cindy]

Hi Zipper5 (cute name)..... I am no expert here - my dad just had a C.E. Bovine due to severe A.S. on Sept. 5th. He had his first check-up today and is doing great....
What did your doctor state was the reason for this? I have read LOTS of articles - many linked from this site - about all the types of valves. I have not seen a break down of failure rates or a comprehensive discussion of reasons why this could happen. Where did you have your surgery and are you having the re-do at the same hospital/same surgeon?
I did meet a family at the Cleveland Clinic whose father had to have his porcine valve replaced after only 2 years. I think it was due to an infection he contracted.... He was doing really well after the surgery.
Glad you found this forum. There are some awesome people here....
Cindy

[Zipper#5]

Thanks for your post! I'm trying to find out the reasons behind failure rates on these valves. Noone seems to be able to answer why this is occurring. They won't know for sure until the remove it. I had the surgery at Yale and will go back there- not sure about using the same doctor though.

What I did find is that the failure rate is minimal until the five yr mark. Mainly infections can break it down prior to that. I haven't seen anything about structural deterioration, and was hoping to find something about that. Also, haven't seen any recent studies on these valves.

This will be my fifth zipper- I'm running out of skin! :(

[DickV]

Hey Zipper, it has been said many times on this board that most of the complaints about Coumadin come from non-coumadin users. Most of us on it just take it in stride.

If you are regular in your life activities including diet, booze, execrise (which you should be doing anyway), get your INR monitered regularily and take your meds on time most people do not have any real issues with Coumadin.

[Dave]

Hey Zipper
The warfarin has not been a problem for me, I am 13months post mvr, and a st judes valve was fitted.
I have a blood test once a month,and my INR has been stable.
Sure the clicking from the mechanical valve can be annoying at times, usually only at night when lying on my left side.
But if it keeps on clicking with out any problems, i will be very happy.
I didnt have any choice for the type of valve, I went in for a mitral valve repair, but it was beyond it, and i woke up with my new part. Given the choice and now that i know what the options are I would have selected the one i have got.
I know that the warfarin can be unstable in some people, but in many cases it is to do with diet.
Dave

[Mara]

Dear Zip
I am with you...that Coumadin thing is a whole different world. There are a few of us on here who have the CryoValve SG, a depopulated tissue valve. It's pretty new and supposed to be the wave of the future in tissue valves.

But, Dick is right, the Coumadin-ers on here seem perfectly happy with the drug and are doing great. I have heard very little in the way of grumpy comments. They have it down to a science.

Good luck with your decision

[Zipper#5]

Thanks for your note Mara. I see you are also a member of the congenital club. Are you in your 30's or 40's. I've been trying to connect with adults (ACHD's) for awhile now. 40's and up are a rare breed. I had most of my surgeries before age 12- when was your AS?
As far as the Coumidin, presently I am on nothing more than aspirin and iron, and would like to stay off medication as long as posssible. With menopause around the corner, there will be enough meds for that I'm sure along with any other heart issues.

[Mara]

Dear Zip
I found out about my AS/AI when I was 4, diagnosed by the ol' family doc.

I am 34. I had my surgery 7/12/01. I had the Ross Procedure. My one and only so far, except for a cardiac cath here and there.

I feel as you do about the whole menopause issue. My mom and my aunt both had some bleeding problems during that time and had hysterectomies. I am not too cool on that. Therefore, my gynecologist was pleased that I do not have to do the coumadin thing. (She is also a gynecologic oncologist, and she thinks coumading really messes woman up, especially woman who start the drug before menopause. A different story)

I was taking Lanoxin and Corgard before my surgery and am now taking the baby aspirin and Toprol, but both are due to end soon.

Good luck with your choice.
-

[ticktock]

Zip5
Wow!!! Is that 5 hearts?? You beat me!! Ack!! I thought I was the Queen of Zips..... i think my heart is broken. Oh yeah, IT IS!

I have two mechanical valves, St Jude and Bjork Shiley. I have been on Coumadin since 1978, and keep it well under control. I find home testing is great for me, as I have a busy schedule. I am 46 years young, and was born with AVS. Where is this congenital heart site? Would you email me with it, if you check in here? Would appreciate.

Would you mind going into your history a tad more? Where will your incision be? My 4th was not sternal, it was under the breast and around and up the back. They stated this was due to numerous surgeries through the sternum. Thanks for sharing.
mindy

[Marty]

Hi Zip5! You are a great courageous tough guy. I had my first mitral valve surgery at age 72 three years ago. My surgeon a very experienced guy, told me he'd do his damndest to do a repair. When I talked to him in the ICU the afternoon of the surgery he told me my valve was so screwed up that a repair would fail and I'd be back inside two years. I then said Why didn't you use that pig valve? He replied :they discussed me in a conference with the entire 10 surgeons and staff and after a long discussion decided to go mechanical. While many bio valves last 10 or more years, many do not. Here I was age 72, and not in all that great shape. They didn't want me back in two, five, or seven years. I've done fine since and I love my St.Jude bileaflet valve. I can only hear it in the middle of the night lying on my side. I like to listen to it and it puts me to sleep. Coumadin? No big deal. Get a self tester and monitor your own dosage. I like to do it. Its fun.
Also I think coumadin is good for you in a lot of ways but thats another story. By the way, Medicare approved payment just this week for the little monitors for valve patients, so all the insurance companies will follow.You'll do great! Marty

[ticktock]

Marty
Excuse me for butting in here, but I read your note.
So, Medicare approved payment for a coag machine??
No kidding?? Wow..... That is marvelous news, long
in coming. Do you know which machine they approved?
I assume it was not coagucheck, since it isnt marketed
here. Or maybe this will bring them back? Thanks for
the information.
mindy

[Dave]

Hey MATXR
Just interested in the comment that Coumadin is good for you in many ways? Can you elaborate?
Dave

[Marty]

Hi Dave. How are things "down under" ?My golf instructor here in Arlington VA ,MJ Smith is from New Zealand. She goes home for Christmas every year. She was on the PGA Tour for 20 years before she came to my club and is now the Director of Instruction.
Now about your question. Coumadin good for you? In my work - I am a radiologist, I see a lot of thrombosis- Coronary thrombosis(heart attack), Cerebral thrombosis(stroke),Liver vein thrombosis,
Deep vein thrombosis( very common in the legs after a long flight), and many others. There are not many controlled studies showing Coumadin of benefit and they might show if they were done that every one should be anticoagulated. This is obviously
impractical. However I sort of like keeping my INR between 3.5 and 4.0. Best regards Marty

[Renee L]

Hi, Zipper. I had AVR in July 2000, with a Carpentier Edwards bovine valve. Within 5 months it was leaking!!! EEEEEKK! I was surprised to see that you have the same problem. I had mine done at Morristown Mem in NJ, but have since returned to Houston.

I am being followed right now. We are in the "wait and see" mode, just like I was before the surgery.

I really studied long and hard to decide which valve to go with. I just didn't like the idea of coumadin, as my husband had been on it and had problems with it.

I was 43 when I developed bac. endocarditis for no apparent reason. After that the AV was pretty leaky.

My doctor here in Houston told me that in his opinion my valve is defective. I'm not too happy about that. I was expecting at least 10 years, if not more.

Please keep us posted, and good luck.

[Zipper#5]

Renee, So glad to hear from you!! I have been out of my mind over this. I too was told this valve would last at least ten years and all the research I did indicated so. My valve was leaking right away and I was told that because the surgery was so complicated some leaking was not uncommon. However, it's leaking both from the center and the perimeter. I think the hemograph did not take fully. Anyway, I also had endocarditis, not a fun event as you know, and I doubt Iwill find a surgeon who will put anything other than a mechanical valve in now. I await the appointment with the surgeon now. I could wait a few months- but why? I need to get on with my life and start getting healthy again. I feel so helpless.

If the valve is defected do we as patients have any recourse?

Good luck with your decision too.
Maureen

[mimi314]

OK guys! Here I had decided to go with a tissue valve (bovine pericardium) instead of a mechanical because of the coumadin issues, and y'all tell me they can leak??? What are the symptoms to watch for if you suspect your valve is leaking? My surgery is scheduled for November 1. Would love to find out all the details before then. Thanks, Barbara (Sam's Mimi)

[Nancy]

Hi Mimi-

Of course every case is different, but when my husband's mechanical mitral valve sprung a leak, he developed severe Congestive Heart Failure (CHF) symptoms, including breathlessness, extreme fatigue, edema in his throat, lungs, stomach area, legs and feet. He ended up not being able to do anything but sit on the sofa and sleep. He also lost his appetite and lost 25 pounds.

In addition, his blood count got dangerously low and at one point he had to have an emergency transfusion.

Now that his valve is repaired (July 18, 2001), he is improving on a daily basis and can go a mile and a half on the treadmill and is also using the home gym.

By the way he's been on Coumadin for 24 years and has had no problems worth mentioning.

[mimi314]

Well...the 25 pound weight loss sounds good, but the rest is extremely scary...not to mention life threatening...I guess all we can do is hope for the best and pay attention to what our bodies are trying to tell us. I'm beginning to realize just how serious this situation really is. You know, you go through 50 plus years of your life just assuming everything's cool and then, "KABAM"! Your socks are knocked off! But, at least this is fixable...it could be worse.
Thanks for the info. Barbara (sam's mimi)

[Scottie]

Hi Zipper ..I noted that you are a CH patient ...so am I ...I'm 41 but shhhhhhhhhh ...say it quietly lol.....I was born with Fallot's Tretragoly(sp?)...had 4 heart operations when I was 13 and under ...all went quiet for many many yrs ...survived panics when preggers but on the whole did not reguard myself as a heart patient ...at the moment I'm waiting for a Cardiac cath to see if I need a new valve ....hate to think valve might fail ..anyway just thought I'd touch base with you ...take care and lots of luck
Scottie

[LUVMyBirman]

Hi MiMi

Noticed your from Jackson MS. Where are you having your surgery?

Making that decision on valve type can be difficult and is a very personal decision. There is not one perfect valve out there that I am aware of. We just have to make the best educated guess regarding the 'correct valve type' and hope we make the proper decision.

If I had to do it over again....would not change a thing. My decision to go mechanical fits my lifestyle just fine.:)
Sure there are things I have given up....but nothing that I can't live without. Was looking at the longevity of the valve so I would hopefully not go though multiple repeats.

[mimi314]

Hi, Gina.
I'm having my surgery at St. Dominic's here in Jackson. My surgeon is Stuart Horsley. What do you know good about them?...I don't want to hear anything bad...HA! I trust my cardiologist completely...he is my doctor's doctor and he recommended Dr. Horsley. My cardiologist Gene Hutcheson.
The coumadin just sounds so high maintenance to me...I'm afraid I'd forget to take it and really get messed up. We'll see. Barbara

[Toby]

I'm a 42 year old healthy male. I was born with bad connective tissue, and now my aortic insufficiency is becoming a problem. (Regurgitation, heart enlargement, ejection fraction, etc.).
The first couple of doctors thought a mechanical replacement was the best thing, for sure. Especially since I expect to live so long (don't we all?). Another doctor thinks a tissue valve is the way to go, and he says the cumulative issues of 15 years of Coumadin are riskier than a second operation when I'm 57. Obviously, he expects a tissue valve to last 15 years.
Now I'm trying to decide. Do some doctors like the mechanical valve because it is works so well, lasts so long, and it makes them look good? Does Coumadin really make your quality of Life stink? (I would like to play with my young children.) Do tissue valves last 15 years?

[Zipper#5]

Toby, tissue valves are suppossed to last 10, 15, or more years. It depends on the rate of calcification in your body. The majority show signs of deterioration after about 10. It is rare for it to be leaking so quickly like mine is.

Docs like the mechanical valves because they are hardy and rarely need to be replaced and are not affected by bacteria endocarditis. Heart surgery is traumatic enough without repeat performances!

The type is valve picked depends on the person, all factors are concidered but the more YOU know the better you can discuss the decision. Good luck!
Maureen

[Nancy]

Hi Toby-

Coumadin doesn't make your quality of life "stink". My husband has been on it for 24 years and has done all the things he's wanted to do, no problems. You will not be able to do dangerous things which can cause you to have accidents and bleed profusely, but if you have small children, you wouldn't be doing those anyway. Contact sports are not recommended, but those aren't a good idea with a heart problem either.

Having small bumps, bruises, and cuts hasn't been a problem. They might bleed just a little longer, but Joe has found that all of them have resolved in a normal fashion. As a matter of fact, he heals a lot faster than I do.

Aside from the blood tests which have to be done routinely, it isn't a bad deal.

I can tell you for sure that having another valve surgery again when you're older and possibly sicker really does "stink". Joe's been there and done that.

[DickV]

Toby, I have never heard a Dr. give the opinion of Coumadin that your's did. Never.

Ask that same question to a few more docs and check the spread of opinions. Nothing wrong with Tissue valves but Coumadin taken properly is not that big a deal.

Personally I'm on Coumadin because I do not want to go through that operation again.

[Christina]

This reply is for Zipper#5.
A mechanical valve needs to be replaced at times too. I had a replacement within eleven days after the first surgery, and the surgeon implanted a different brand of valve. This was all due to a blood clot that had lodged itself underneath the first valve.
I was told to be careful NOT to get Endocarditus, so I understood that we with mechanical valves can get the bacterial infection, and from what I have heard it is not something you wish for.

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's mechanical
Coumadin 20mg a day.

[Zipper#5]

Christina- thanks for your post! You're right, endocarditits is not a fun experience, many people are not lucky enough to live through it. It damages vital organs very quickly! A intensive IV therapy( 6 weeks) is the only way to stop further damage. You are lucky they found the clot so quickly.

I was surprised to hear that endocarditis can occur with a mechanical valve, it must attack the surrounding tissue. :( Not pleasant. I'll be sure to ask about it. Thanks.
Maureen

[RobThatsMe]

Hi Zip5,

I had surgery on 3/23/00 and now have a St. Judes mechanical Aortic Valve and graft. I have not had any problems with Coumadin. I am a 51 yr old male.

I have to agree with Dick and some of the others regarding their comments on Coumadin.

Good luck with your choice,
Rob

[Zipper#5]

Rob, Thanks for your Post! It's a hard decision esp. for an active person like me. I see the surgeon tomorrow- will know more then.
Maureen

[Srosier]

I understand your concern because I felt the same way. i have two small kids and was 40 when I had my VR. I worried about being on coumiden as well .. afraid to shave my legs and worried about being in some sort of accident ... eating the wrong thing and so on. I realize now that I was really a bit overreactive to these things. When I cut myself it may take an extra minute to clot but barely a problem. I swim exersize chase my kids just like all the other moms do that I know. It has noway handicapped my life style in any way. I take my pill like a normal responsible person takes ther meds. I go to the lab once a month where I have a new friend that draws my blood. I takes about 10 to 15 minutes out of my life a month to go but its on the way to the gym so no trouble.
I chose the St Judes valve because I had known so many people that had it and were doing wonderful. i was told that it normally lasts a life time or 20 plus yrs.
Thats for me because I think going through the surgery was far more trouble then taking that little pill each day. I don't want to do it any time soon again unless I have to thats for sure. 10 yrs is to soon for me. I hope when and if I have to do it again that there will be much more technology and ways to make it easier.
Good luck and relax about coumiden its not a big deal.

[Toby]

THanks for your message. I've lately come to the conclusion that it is far more important to have confidence in the surgeon. There are really quite a few good choices available, but a good surgeon doing the one he or she believes in is the key.

[joy]

Hey Zipper, I just had my CE bovine pericardial valve put in about two months ago, and mine doesn't seem to be having any problems. Some people just have problems with them. How long has yours lasted? Only a year? I was just wondering, since I think we have the same thing. What model was yours? Mine is a model 6900. Mine is a mitral valve. I went to the University of Washington, and had Dr. Edward Verrier do the surgery. He knew what he was talking about, and I trusted him right away. Well, I hope your new valve goes better than this one! I don't want to take coumadin, because I am 23, and I forget stuff too easily. :D

[Zipper#5]

Gee Sue, How nice of you to wriite! I see you are an adult congenital too, nice to meet others out there going through it.
Seems I have no decision, my body is rejecting the tissue valve and will have to have mechanical put in. Just wish I didn't have to be on meds for the next 40 yrs. Thanks again- Maureen

[ticktock]

Zipper #5
Hey, read all the posts here, and got up to date before shooting off my mouth. (As everyone here knows I do). I have been on Coumadin since 1978. What, 23 years?? It does not give you a stinky life. Ex husbands, stressful jobs, car repairs... they give you stinky lives. Coumadin is as good or as bad as you make it out to be. I eat a regular diet, do not restrict myself in that regard. My blood test results have been pretty darned regular considering 23 years!! Dont worry about the Coumadin. It has NO yucky feeling side effects. Just follow the Docs orders, and all will be fine. Hang in there!
mindy:)

[John & Joann]

Joann has been on coumadin since 1971. This is the least of her problems. Confidence in your surgeon is most important. Very few people have major problems with coumadin. It is a pain, but you can live a very normal life.

Good Luck.

[Peachy]

I am waiting on surgery to have my aortic valve replaced. I was born with a bicuspid aortic valve and now at 40 I need it replaced. I have chosen to have a pig valve put in because I do not want to have to take Coumadin. I am a very active person and I wouldn't be able to carry on ski-ing, ice skating or cycling etc for fear of having a bad fall if I was on Coumadin. I looked into my options very carefully and decided to have a pig valve which hopefully will last 10 to 15 years. I know that I will have to go through surgery again but at that time there may be something new which will last a lifetime and not require any medication. Good luck with your decision.

[joy]

Hey. that was why I decided to get a tissue valve also. I am very active and bruise easily. I still have to take aspirin, but that's it! I have two kids, like to ski, but I'm not too good at it. I ran over my thumb once! Don't ask!
take it easy!:D :D

[McCln]

I just had a replacement of the aortic valve and chose the Mechanical because I did not want another surgery in five to ten years. I have been fine so far with my St. Jude's. I have more energy and even though I take Coumadin, I do just fine. The fear of cut and bleeding is nothing. I work in an office and could get paper cuts, but I override the fear with being to be here everyday, healthier than I have been in a long time. I just could not see having surgery again too soon. I know for me, I made the right choice at 36. I could have another surgery in 20 or so years. But you have to make your own choices. I am proud of anyone have surgery anyway, to feel better.

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

[JBriau]

Hi Zipper

I had a mitral valve replaced in 1999 with a
St. Jude's mechanical valve due to endocarditis.
I was born with two bicuspid valves. I am now
have problems with my aortic valve. It will
probably be replaced in the spring. I take
coumadin. Just make sure you understand what
the drug can do to you. Women on coumadin should
not ovulate because of cysts which can form at
ovulation. these cysts can rupture and cause you
to bleed. I know it happened to me. Other than
that I have adjusted well to the drug. I am a
busy mother of 4 children and also work part time.
My lifestyle really hasn't changed.
:) Judy

[Mary Ellen]

Hi Zipper 5...

I had my mitral valve replaced on 12/4/98, nearly three years ago, and my St Judes is doing just fine. As for the Coumadin, for me it's been nothing to be concerned about. I bruise a lot easier, but that disappears again. The only thing that tends to lower my INR is too much green tea, but hey, I can live without that! I really don't concern myself about my diet except for trying to keep my cholesterol under control. I am still doing all the things I did before, even more because I feel so much better than before the surgery.

It's still an individual choice...so whatever you decide, good luck!

Mary Ellen :p

[tinkerbel71]

Hi, my name is Marybeth. I have the same valve you have. I have had no problems with it. I am on coumadin now and have been for over twelve years. I was first given a St. Jude valve twelve years ago. I got blood clots all over the heart. I had congestive heart failure because of it. St. Jude valves are known for blood clots. I had my surgery at The Cleaveland Clinic. They told me they had nothing but problems with the St.Jude.
I think maybe you might have torn or hit yourself in the chest. Sometimes even when you pick something up wrong. If I were you, I still would have the same type of valve replaced.. I think it is your best bet.
Good Luck
Marybeth

[RobThatsMe]

Hi Marybeth,

Welcome to the board!

I was wondering if you may have any detail information supporting your coments regarding the St Jude valves causing clotting and having nothing but problems. If so, could you please post them here. Also, was it any particular model of the St Judes Valves?

Thanks,

Rob

[Hughbd]

Hi Zipper. This is only my second post to this forum. I had a defective aortic valve replaced with a Medtronic Hall mechanical. This was in September 1994 and of course have been taking coumadin since. Once the dosage level is stable, I find no change to lifestyle. I rv, fish, bike, kayak, hike and find nothing hinders me doing any of those. My cardiolist is a bit unusual in that he goes for a lower INR than most. He had me at a 2.5 level for some time and a couple of years ago, he dropped me to about 2.0. I range between 1.8 and 2.1 and have it checked every 6 weeks. I have gone as long as 9 weeks and got heck for it.

I keep my food intake pretty steady, so the vitamin K is pretty constant. I also take 1200 units of vitamin E, 500 of vitamin C and 150 of selenium. My cardiolist is aware of my vitamin use and I believe he adjusted my coumadin dosage to suit. I take 2.5/day Monday through Saturday and 5 on Sunday.

Hugh

[Gail in Ca]

Do you suppose your valve is leaking due to faulty stitching during surgery, or is it the valve itself, tearing or hardening?
A cardiologist friend told me to ask some questions of my surgeon before my surgery, since it was a teaching hospital. He told me to ask WHO is stitching in the valve, the top notch surgeon or his resident assistant. Apparently, mistakes are made by surgeons,and he wanted me to get the best stitching job.
Gail