Help me with my third surgery questions

[extraordinary]

To learn more about Valve Options, you may want to read the "stickys" at the top of the Valve Selection Forum.
The Big Decision is between Tissue Valves and Mechanical Valves. Young Women who have selected Bovine Pericardial Tissue Valves in order to bear children have gotten 10 good years from them before they needed replacement. Porcine Valves tend to wear out even faster.

There are a LOT of Myths and Horror Stories about living with Anti-Coagulation (a.k.a. Blood Thinners) which originated in the Old Days before improved methods of Measuring INR and Managing dosage. You can learn more about Coumadin management on the AntiCoagulation Forum. We have members who have been on anticoagulation therapy for 30 and 40 years.

'AL Capshaw'

Ok, i will read it later and thanks a lot

 

[extraordinary]

The first part of your post is true, mechanical valves will normally last a long time and maybe a lifetime.... I'll let you know:thumbup:......and I doubt that you can find ANY legimate information that supports your second part. If a simple and easy regimen is followed, "the risk of bleeding to death" is simply NOT TRUE:rolleyes2:.

Loool oook

 

[Jkm7]

You raise an excellent question, Extraordinary.

While there have been a few women here who carried babies while on coumadin, it is very, very risky and you would need care from very expert, knowledgable physicians to get you and baby safely through a pregnancy and delivery.

However, we have had young women who chose tissue valve (which does not require permanent coumadin except in rare cases for specific reasons), and they have had one, two, three babies before requiring a replacement of their tissue valve.

No one knows exact years durability of tissue valves as the newest of them have not been used that long. It does seem the younger the patient, the fewer years they last. But if you know you want babies in the foreseeable future, you need to discuss tissue valve with your doctors.

 

[extraordinary]

You raise an excellent question, Extraordinary.

While there have been a few women here who carried babies while on coumadin, it is very, very risky and you would need care from very expert, knowledgable physicians to get you and baby safely through a pregnancy and delivery.

However, we have had young women who chose tissue valve (which does not require permanent coumadin except in rare cases for specific reasons), and they have had one, two, three babies before requiring a replacement of their tissue valve.

No one knows exact years durability of tissue valves as the newest of them have not been used that long. It does seem the younger the patient, the fewer years they last. But if you know you want babies in the foreseeable future, you need to discuss tissue valve with your doctors.

So tissue valve is the only not risky choice for a women who wants childs ?
no other choice or other valve that last longer wih safe pregrancy ?

 

[Lynlw]

Thanks you, but you I'm not married yet and when I do, i wanna be able to have children so with this valve is it ok ? because i think I will need on medication for the rest of my life

IT is recomended IF you want to have your own children, to get a tissue valve, since coumadin can for dangerous for both the Mother and fetus.

 

[ALCapshaw2]

As I mentioned before, women who wanted to bear children have chosen the Bovine Pericardial Tissue Valve which appears to have the best durability of the Tissue Valves. The VR.org women who chose this valve got 10 years of service (and a few children) from the valve before it wore out. I believe they chose Mechanical Valves (with the requirement of lifetime anticoagulation) after they had their children. If you choose a Tissue Valve replacement, it would likely need another replacement in another 10 years or so (sometimes less). After age 60, the Bovine Tissue Valves tend to last longer before they wear out.

 

[ALCapshaw2]

Luana suggested UCLA medical center. Like you I had a complex congenital heart defect issue (several heart defects) involving my valves. I had my first surgery done at UCLA medical center. My surgeon was Dr. Laks, and it's my impression that he's one of the best surgeons if you'd want to look into him. Good luck!

Dr. Hillel Laks at UCLA is another interesting option. Before he became the head of Cardiothoracic Surgery at UCLA, I recall reading that he was head of Pediatric Surgery at some eastern University (Yale I think - I couldn't find the link in my quick search). You can find LOTS of information on Dr. Laks by doing a Search (Google) for "Dr. Hillel Laks". He lists infant and pediatric surgery as one of his interests.

'AL Capshaw'

 

[Greg a]

I just want to add to Jean's welcome and glad you are asking and getting a lot fromit on your first day

 

[Luana]

You raise an excellent question, Extraordinary.

While there have been a few women here who carried babies while on coumadin, it is very, very risky and you would need care from very expert, knowledgable physicians to get you and baby safely through a pregnancy and delivery.

However, we have had young women who chose tissue valve (which does not require permanent coumadin except in rare cases for specific reasons), and they have had one, two, three babies before requiring a replacement of their tissue valve.

No one knows exact years durability of tissue valves as the newest of them have not been used that long. It does seem the younger the patient, the fewer years they last. But if you know you want babies in the foreseeable future, you need to discuss tissue valve with your doctors.

Ok, would the "few women here who have carried babies on Coumadin," come forward and share their stories, or if someone could post the url for the archives? I asked one person here with a mechanical who had a child, and she had a surrogate.

Extraordinary, if you want to have children you should have a tissue valve, and this is something you'll need to discuss with your surgeon.

 

[pikacat]

Ok, would the "few women here who have carried babies on Coumadin," come forward and share their stories, or if someone could post the url for the archives? I asked one person here with a mechanical who had a child, and she had a surrogate.

Extraordinary, if you want to have children you should have a tissue valve, and this is something you'll need to discuss with your surgeon.

I googled this a bit ago in making my own valve decision.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC101073/

and actually one of the links had been from this forum: http://www.valvereplacement.org/forums/showthread.php?29907-Pregnancy-with-a-mechanical-valve-story

it's possible to have a child with a mechanical valve, however, it carries high risk to the mother and the fetus.
then i can't find it right now, but i had found one study that showed that warfarin use increased fetal problems, and decreased fatalities for the mother. however, heparin use had the inverse effect. i'm sorry that i can't find that study right now.

 

[Jkm7]

by Luana
Ok, would the "few women here who have carried babies on Coumadin," come forward and share their stories, or if someone could post the url for the archives? I asked one person here with a mechanical who had a child, and she had a surrogate.

Here is a link to one thread started by TXGal.

http://www.valvereplacement.org/for...-valve-story&highlight=pregnancy+and+coumadin

I also remember a Dad who posted about his wife carrying a pregnancy while on coumadin but it was years ago and cannot remember specifics or names. He posted through her pregnancy I believe and then upon successful delivery. Maybe Ross or someone who has been here longer than me remembers.



Here is another post I found:

Tgamble
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Registered User Join Date:Oct 2006
Location:Baltimore, md at john hopkins
Posts:9 pregnancy
Hi my name is Terressa, I went through a pregnancy 11 months ago. I had my mitral valve replacement in 2001. I had a healthly baby boy dec 05 2007. I had problems before I got pregnant with the shots, so I decided on my own and of course with my doctors to stay on coumadin the whole entire pregnancy. I heard so many story about women getting blood clots and having to get their valve replaces again I just couldn't go through that again. So I stayed on coumadin, went to the coumadin clinic to get check once a week, and also check by my obgyn doctor every 2 weeks starting from 5 weeks pregnant to the very end which my doctors decided to take him 3 weeks early and on top of that I had to go to the cardiologist every 2 weeks also. So my weeks consisted of me going to the doctors just about every week also due to fetal testing too. The nomal person gets about 2 to 3 ultrasounds I got 1 every month of my pregnancy except the last month I got a total of 3. You know if you decide to go through with a pregnancy with a heart problem please be prepare to give up alot, but if you want that baby to come out healthly you will do what every it takes. I went to John Hopkins and I had a team of doctors maybe about 10 different doctors but one special doctor stood by me through everything her name was Dr. Ruiz she was the best she really did her research along with me and we both made it happen. But yes it's very possible to have a successful pregnancy with a mechcanical valve, I did, and next month my son will be a year old.

 

[Lynlw]

Ok, would the "few women here who have carried babies on Coumadin," come forward and share their stories, or if someone could post the url for the archives? I asked one person here with a mechanical who had a child, and she had a surrogate.

Extraordinary, if you want to have children you should have a tissue valve, and this is something you'll need to discuss with your surgeon.

Willow went thru 2 the first before They were members Here is Anthonys first post telling about her 1st pregnancy and that she was pregnant again and what the plan was http://www.valvereplacement.org/for...-w-St.-Jude-Mechanical-Valve&highlight=willow
there were a few updates thru out her pregnancy but here is his post about what happened.

http://www.valvereplacement.org/for...Willow-s-Pregnancy-after-MVR&highlight=willow

 

[Jkm7]

Thanks, Lyn. That was the couple about whom I was thinking. Rereading that post brought it all back to my mind again.

 

[Duff Man]

is the bicuspid aortic valve not congenital?

 

[Lynlw]

is the bicuspid aortic valve not congenital?

Yes any defect your born with is congenital.
ps I'm curious are you asking because of the discussion about what kind of doctors to go to?

 

[Duff Man]

Yes any defect your born with is congenital.
ps I'm curious are you asking because of the discussion about what kind of doctors to go to?

Definitely... like, oh crap did I pick the wrong doc? Haha!

 

[Lynlw]

Definitely... like, oh crap did I pick the wrong doc? Haha!

I was thinking that was your thoughts after I reread the thread. You should be perfectly fine with a regular adult cardiologist/surgeon. I don't know if this link works or if you have to be a member/sign in at the acha org to see it http://www.achaheart.org/pdf/news/ACHABethesdaSummary.pdf That is a short descrption of the Bethesda Guidelines for care of Adults with CHD. They break CHDs down into 3 categories by which are the more "complex" and which CHDs should be treated by Doctors specialized in Adults w/ CHD (and how often they should see them) and which CHDs are considerred "simple" that can be treated w/ the general medical community. Isolated Aortic or Mitral valves are classified as Simple.

But the short/non technical (my words) guidelines are for the most part, people who have the more "complex" CHDs who usually have had 1 or more surgeries as babies or children (like "extraordinary" who started this thread) SHOULD only go to doctors that specialize in CHD or Adults with CHD, since for the most part regular heart doctors (cards and surgeons) don't have much experience taking care of people w/ complex CHDs. So many things are very different than patients with "aquired" heart diseases or valves that need replaced as an adult (who haven't already had heart surgery somewhere on their heart as a child). Also for the most part surgeons that have the most experience with REDOs and Multiple REDOS are the CHD Adults/ CHD surgeons who do several REDOS weekly, so know the safest ways of doing everything.

I saw you asked about Coarc somewhere, do you have Coarc also?