32 yo wife needs new valve, 1st post

[Cleojoan]

Welcome to VR.com

Welcome to VR.com

Hi,
I had an AVR in 1998 with a St. Judes's mechanical valve as opposed to a tissue valve. In fact, it was one of the recalled valves with the silzone lining. I am one of the very fortunate ones. No problems since 1998. My surgeon said I was much too young to have a tissue valve (which can last approx. 10 years). I have had NO problems with coumadin use. I kind of know what I need to do as an informed patient. I think the secret is to take responsibilty for our own health care and issues. I have my INR checked once a month and go from there. I wish you the best in your decisions and health.

Hugs,
Joni

 

[Gail in Ca]

Got my first valve at age 34 and my daughter was 2 1/2 then.
Since I have had both porcine and mechanical, I would say I would go with tissue first, so many are to last much longer than the 11 yrs I got out of one placed in '89. However, when I got the porcine, my surgeon had consulted with the surgeons at Stanford and about half said they would give mechanical. My replacement valve is carbomedics mechanical, and I do miss the ease of the tissue valve. It seems the surgeons really want to avoid redos if at all possible.

Gail

 

[crystal]

same situation

same situation

Hey Cman,
I have read through all of the postings of this thread and find it interesting.
I am in the same situation as your wife...but a little older. I am 43 and was born with aortic stenosis (bicuspid). I had my first OHS when I was 6 to correct my valve. I then had valve replacement when I was 29(1991). I had a tissue valve then. I have two awesome kids age 11 and 13. It is now time to replace my valve again! This will be my 3rd OHS. My cardiologist and surgeon are both highly recommending the St. Jude. I am strongly leaning towards another tissue. I am very active and do not want my lifestyle changed in any way. My surgery will be in January 2005 so I have two months left to make this decision. All feedback from everyone is greatly appreciated. Has your wife made a decision yet?

Crystal in Houston

 

[thecman321]

leaning toward mechanical

leaning toward mechanical

My wife will likely take the advice of her surgeon and go with the mechanical valve so as to likely avoid future surgery.
We are still in a semi denial stage right now about the whole thing.
But reading about other people's positive experience really helps.

C

 

[Karlynn]

Keep us posted C. Wishing your wife and you the best. Making a valve choice is one of the big hurdles, so you have that done already. There are many of us clicking away here that don't regret that choice.

 

[crystal]

C man....I would love to talk to you and your wife. When is your wife gong to
have her next surgery? I will have my 3rd in January.

Crystal Northcutt 713-962-0910

 

[thecman321]

still deciding

still deciding

Hi crystal

The surgeon we have spoken with is the same surgeon that did the previous 2 surgeries, so my wife has alot of confidence in him and he uses the St. Jude's valve as his choice of mechanical. Maybe a little knowlegde is a bad thing, but i have done some research and on mechanical valves and a relatively new design valve,, developed circa 1996 , the ON-X valve , seems have better performance charectoristics. This puts us in a weird position,,, do we go with proven 25 years plus performance or put faith in something less tested? And if we lean toward less tested to we TELL the surgeon,,,the expert,,, what is best,,, without really knowing what the heck we are talking about ?????????

BTW she is currently scheduled for Jan 5, just 2 days after you


C

 

[tobagotwo]

There is nothing wrong with discussing valve options with your surgeon. Although I went for a biological valve, my surgeon and I spent a good twenty minutes of his busy schedule discussing the pros and cons of the CEPM and the Mosaic, like fellow collectors at a convention. He was delighted that I could hold up my end of the conversation, and was actually willing to implant either one. I went with his strong suit.

I know you've spent some time going over the valve sites. This is one of the best things that you can do for yourself, and one that your surgeon may well appreciate.

If you do go to discuss mechanical valves, know what you're talking about, at least about the essentials: blood flow, thrombosis rates, hemolysis levels, required INR levels. That's not nearly as complicated as it sounds, and is usually available on the product website, or through email with the manufacturer. Your surgeon will likely be much more open to discussion if he feels you have taken the time to understand what you're pitching to him.

It's courtesy, after all. He shouldn't be put in a position to have to explain that patients shouldn't pick a valve because it sounds good in an ad.

Heart surgeons will generally agree that at least the top four mechanical valves are all functionally acceptable for the task, with maybe a personal dislike or bent for one model or another. If you have a strong reason to push one model over another, make your case. He may have a reason for not using it, which he will tell you, or you may be surprised how easily he agrees. Either way, you're having a rational conversation about choices, not telling him he's wrong.

Good luck with this,

 

[McCln]

thecman

thecman

You have had a lot of great advice here, that is from personal experience. I was a child of bypass myself. Was born with congential heart defect, aortic heart murmur. Repair was at age eight, replacement was three years at age 36. Been doing great, no real lifestyle changes. recently given the red light from cardio to work out in a gym, no restrictions. He knows that I know my limitations. But it is healthy to keep being active. Your wife is lucky to have someone like you wanting to be so educated in this area. Keep searching and soul searching together, and talk with the surgeon. Communication and education is very important. And be sure to come in as often as you need. Have a great day.

 

[SHerrin Hutt]

Hi Weclome,
This is a great sight and they people are the greatest!!!!! I have a St. Jude and have my own protime machine that QAS help me get paid in full my insurance co. They did all the work. The ticking from the St. jude is what drives me the craziest. I am one of theses people that can't stand a clock ticking. My youngest is the same way. It has 2 1/2 yrs. since my surgery. Theeree is alot to think about but in the in you& your wife will be the one making a choice. You will be in our thoughts and prayers.

 

[heartyone]

Nearly two years ago my wife (age 50 at the time) survived a dissecting aortic aneursym. When it came time to make a decision about the valve type, she was intubated and sedated, and so the decision fell on my shoulders. She has always been an avid outdoorswoman, climbing, skiing, biking, rock climbing, and so this made the decision very difficult.

But, when I looked at her lying there in that bed, I knew that she would never, ever want to go through any open heart surgery again, and so in went the St. Jude's aortic valve and the Coumadin for life. She has done incredibly well with it and continues to ski and bike and enjoy life. She respects the decision I made on her behalf and is hoping that that one surgery will be her only OH experience. Of course, there are no guarantees in life.

Which brings me to something the doctors mentioned in our many meetings on this decision. They pointed out that at the time of that surgery I was plenty healthy to care for her and help her to rehabilitate, but there was no guarantee that would be true in 10-15 years when a tissue valve would need to be replaced. I didn't give that idea much thought... then, this summer I was diagnosed with Secondary Progressive Multiple Sclerosis and that discussion hit home.

There are so very many things to consider in this decision, and what ever you do will be right for your needs and situation. But, don't think that being on Coumadin is a terrible sentence for a person. It's tolerable and there's millions out there pumping along just fine with it in their veins.

Best wishes.

 

[JBR]

I am 33, and very active, and did not want to be limited in any fashion. I wanted to be able to go skiing actively, play rugby, etc.

Went CEP tissue bovine (4 weeks ago). Started back at work 2 weeks ago (IT stuff so no lifting).

For me tissue sounded right from square 1.

Bottoms up to technology improving too!

 

[MomOfThree]

Hi!

Hi!

Hi! I'm new to this site. I'm 43 and my cardiologist wants AVR surgery before Christmas. While I'm not in the same situation as your wife as this is my first surgery, I was wondering if you had your meeting with the surgeon and what he recommended? I'm leaning toward mechanical, I think. Best to you and your wife!

 

[thecman321]

the surgeon reccomended mechanical because he didnt want to have to "open her up again" in 10 years or so,, because she is so young, young bodies are togher on the valves. And that would be the average life span of a tissue valve. But he left the ultimate decision up to us.

C

 

[Karlynn]

It's a tough, tough decision. One that will be made much easier when they invent a reliable crystal ball.

At the age of, almost , 46 with 13 very good years logged on my mechanical mitral valve, I do not regret having the mechanical. It's worked well for my life and that's what counts.

Which ever valve is chosen, live life to the fullest. That's what makes your choice the ultimate success.

 

[MomOfThree]

Hi! Good luck with your decision! I, myself, was leaning towards a mechanical valve, originally. Both my cardiologist and surgeon suggested tissue, saying that it could last 15 - 20 years? I'm still debating...Please let us know what you decide. My surgery is scheduled for 12/17. BEST WISHES!!!

 

[geebee]

I have been on coumadin for 24 years and I live a perfectly normal life save for bruising and testing. I do not watch what I eat (not sure if that's right or wrong but it's not been an issue for me) and try to avoid sharp edges (not always successful). I have had a St. Jude mitral valve for almost 11 years and it is working perfectly. I have gotten used to the ticking and actually find it "fun" on the rare occasion that I (or others) hear it.
If I were faced with a decision on a valve today, I would go with the mechanical since it is usually the last valve you will need. That is not the case with the tissue valves.
However, as others have said, ultimately it is the patient's decision and one she will need to be comfortable with based on the pros and cons of her life. Hopefully all the bits and pieces of information gathered here will help her.
Best wishes and smiles,
Gina