Making a decision on a valve

[goffrey]

Funny I took Justin there a couple years ago when we were looking for a new Pc and surgeon (Norwood was Justin's origonlal surgeon). They were nice but... decided to go back to CHOP and go to Spray, which worked out even better since Boston was 5 hours away and CHOP 15 min (Plus it always botherred e before the Devon house parents had to sleep in their cars, all the money Boston made off heart families?)

I think Dr Lock was the one to push so hard and help fund the Devon Nicole House.....it is ridiculous that a hospital that treats so many children with congenital heart defects had no options for them .....Luckily when we go to Mayo the Ronald Mc Donald House in Rochester accepts any child being treated and there are some VERY cheap and clean hotels around there....My main issue we had with Boston was nursing was sub-par and the anesthesia did not listen to us and made mistakes...they have a turn and burn policy and it is not personalized.....

 

[BionicWoman]

Originally my surgeon thought he could repair my mitral valve, so we didn't discuss replacement options. When he was in there and realized repair was not possible, he but in a Carbomedics mechanical valve (I was 47). So the decision was made for me.

I'd been on Coumadin prior to the surgery and did not like it at all. So I was disappointed to wake up and be told I was now on it for the rest of my life.

Then, a funny thing happened. When I got better Coumadin management, and all my problems disappeared. I now eat what I want, drink alcohol once in a while...basically I don't worry about it. My INR fluctuates but not that much. I just decided to live my life. I also have Cardiomyopathy so my heart function continues to worsen.

I can't speak for others, but nothing in God's Green earth would get me to consent to another heart operation. I did what I had to do last year, but I would neve, everr want to go through it again. But you may be healthier overall than I am, and it's not the same. I'm just saying, you don't need to be that afraid of living with Coumadin, it's not all that bad.

 

[Gail in Ca]

I would still go with tissue the 1st time around

I would still go with tissue the 1st time around

I had my tissue valve done at age 34 and then, when it began to wear out, I went with a mechanical at age 46. Looking back, I would do this again, since not having to take coumadin for 11 yrs was good for me.
And, the tissue valves last much longer now then they did in '89.
But, it is yours and your doctors decision, really. My cardiologist and I were talking when I was in the hospital recently with endocarditis, and he said if and when I need my mitral valve done, years from now, I might want to consider having my mechanical aortic valve replaced with a tissue along with my mitral. That surprised me. But, I guess when older, our valves don't calcify fast at all, and the 2 tissue valves should last my lifetime. I hadn't even considered this possibility of changing my aortic valve. Hmmm.
But, that's for the distant future when I don't color my hair anymore, Ha ha!
Gail

 

[ALCapshaw2]

And please keep in mind, that sometimes the surgeons get inside you and make a decision for you based on what they see inside. I don't think this is happening as much anymore (just haven't been hearing it here) but it is possible. In that case, it might be good to have a second choice lined up with your surgeon.

Marguerite

It happened to ME!

My Surgeon agreed to implant a Bovine Pericardial Tissue Valve but I came home with a St. Jude (Master's Series) Mechanical Valve instead.

I was disappointed, but based on what he found inside, I agree that he made the right choice at the time. Today I would choose On-X.

Bottom Line: IMO, everyone should make a Plan B "just in case" their first choice isn't viable or preferable.

 

[AnnaHM]

It's a personal choice but since my first homograph lasted 36 years and would probably have gone on longer if I had not contracted endocarditis, I had no hesitation in agreeing to another homograph, I fully expect it to last more than long enough for me! My doctors are also amazed that my first replacement valve lasted so long but I firmly believe that lifestyle is a huge factor. I have always kept fit and slim (don't do junk food or cream cakes EVER), and also had my first child at age 41, also staying fit and slim thoughout my pregnancy. I have always exercised (played squash competitively for 12 years after my first op) and now I walk 4 miles a day at least since my second op in March this year. My advice is keep your heart strong by living a active life and never behaving like an invalid.

 

[Jkm7]

It happened to ME!

My Surgeon agreed to implant a Bovine Pericardial Tissue Valve but I came home with a St. Jude (Master's Series) Mechanical Valve instead.

I was disappointed, but based on what he found inside, I agree that he made the right choice at the time. Today I would choose On-X.

Bottom Line: IMO, everyone should make a Plan B "just in case" their first choice isn't viable or preferable.

My surgeon hoped for a mitral valve repair but we discussed in depth my absolute choice for tissue in the event he needed to replace. I would have had a royal fit if he substituted a mechanical. I was adamantly adverse to having a mechanical valve and thankfully he honored my wishes.

 

[lbecker]

I went through and read the different post since I first wrote. I have been researching
and speaking to different people who have experienced different valves. I have decided
that since I am already on Warfarin and very likely may have to stay on it post surgery
that I will go with a mechanical valve. The decision I'm making now is between
the St. Jude and the On-X. I am leaning very much toward the On-X. Spoke to Cathern
Burnett, at On-X she sent me the different tables of comparison between valves. Anyway will have to make my decision before to long, surgery is June 17. My surgeon
said he would put in the On-X if I want that even though he likes the St. Jude. Guess
St. Jude could be my B plan. Laura

 

[Eva]

I went through and read the different post since I first wrote. I have been researching
and speaking to different people who have experienced different valves. I have decided
that since I am already on Warfarin and very likely may have to stay on it post surgery
that I will go with a mechanical valve. The decision I'm making now is between
the St. Jude and the On-X. I am leaning very much toward the On-X. Spoke to Cathern
Burnett, at On-X she sent me the different tables of comparison between valves. Anyway will have to make my decision before to long, surgery is June 17. My surgeon
said he would put in the On-X if I want that even though he likes the St. Jude. Guess
St. Jude could be my B plan. Laura

Good luck, Laura, with any decision you make. Some people change their mind the morning of the surgery.!!

 

[lbecker]

Eva, I'll keep you posted and will be looking for your visit if you are able. Laura

 

[Eva]

Of course I will visit you Laura. We shall talk on the phone to make sure you want to see visitors that day.