Valve statistics

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
Z

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.
 
Hi Zipper#5-Welcome

Hi Zipper#5-Welcome

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.
 
Welcome

Welcome

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
 
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! :(
 
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.
 
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
 
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
 
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.
 
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.
-
 
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
 
Valve statistics

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

Warfarin Coumadin Good for you?

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
 
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.
 
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
 
Leaky valves???

Leaky valves???

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)
 
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.
 
leaky valves

leaky valves

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)
 
Hey Zipper

Hey Zipper

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
 

Latest posts

Back
Top