valve questions

[Gemma]

jx05

jx05

Sorry we got so off thread - I bet you're wishing you never posted this question! Here is the reply I probably should've posted first (hindsight is always 20/20).

I think there are several member who went from mechanical to tissue, and several who went from tissue to mechanical. All for very different reasons but I'm sure most of them were happy with their choices at each surgery. The important thing is to do what's right for you in your current circumstances.
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Choosing a tissue valve now and then planning to change to mechanical next time would be a particularly good option for children, if there's a risk they'd need another surgery anyway, or women of child-bearing age, for whom pregnancy is complicated by warfarin.

I'm personally a little surprised when I hear of 20-something/30-something men choosing that route, but it's all down to what you think is a bigger problem for you - a re-op in (?)10 years, or living with warfarin and making some small lifestyle changes - less beer, trying to stay ON your bike - hopefully forever.

Either choice is better than no choice and you'll be happy with your decision whichever way you choose to go.

Gemma.

 

[ZAHRA]

Hello. My Son Is 15 Years Old. He Was Born With Tof @ Abscence Of Pulminar Valve.He Was Sick Most Of The Time .
He Had His 1st Surgury When He Was 2 Years Old .They Closed The Whole With A Patch And Used A human Homograph(aged 22).He Was Just A Little Bit Better.But Still Getting Sick Very Often.
He Had His 2nd Surgury When He Was 7 Years Old.the VaLve Was Calcified And WaS Leaking. They Used A Carpentier Tissue Valve, Aortic ,Size 23.(calf). It Worked Very Nice On Him.He Could Have A Normal Activity.looking Very Healty. And Still Does.
3 Weeks Ego He Had His Yearly Checkup. The Tee. Showed High Pressure On His Heart.Apparently He Needs Another Valve Replacement. This Time They Are Suggesting A Hancock II From Medtronic Which Is Also A Bioprosthesis.size 25.
He Is Only 15 And My Concern Is That How Many Times This Valve Can Be Replaced? what Is The Best ,available For Him? Is Ther Any Statistics Available About The Durability Of Different Valves,brands,for His Age?I Am Hoping To Find One That Lasts Longer.

 

[cocoalab]

Zahra,
Hi my son was 6.5 when he got his first valve and we went mechanical, he had a St Judes 23. He just got it replaced a month ago at age 15 but this time we chose tissue. I have an on line friend with TOF who had her valve replaced when she was 12 with a st Judes and she still has hers today. She is in her thirties. Ask your surgeon why he is recomending the tissue and what kind of longevity do they think he will get from each.

Also consder the comments made about youngsters and how they deal with taking coumadin (or any medically necessary drugs) There are positives and negatives on both sides. If you aren't expecting him to need surgery for anything else consider when he will need to do it again. All tough decisions I know.

I am hoping (of course) that Andrew will get 10 years from his or more but know it might not happen. Talk to his surgeon and see what he thinks or his cardiologist. Chances are he will tell you what the best choices are why and then leave it up to you. I will pray that you get good direction and have peace with which ever way you decide to go.

Hello. My Son Is 15 Years Old. He Was Born With Tof @ Abscence Of Pulminar Valve.He Was Sick Most Of The Time .
He Had His 1st Surgury When He Was 2 Years Old .They Closed The Whole With A Patch And Used A human Homograph(aged 22).He Was Just A Little Bit Better.But Still Getting Sick Very Often.
He Had His 2nd Surgury When He Was 7 Years Old.the VaLve Was Calcified And WaS Leaking. They Used A Carpentier Tissue Valve, Aortic ,Size 23.(calf). It Worked Very Nice On Him.He Could Have A Normal Activity.looking Very Healty. And Still Does.
3 Weeks Ego He Had His Yearly Checkup. The Tee. Showed High Pressure On His Heart.Apparently He Needs Another Valve Replacement. This Time They Are Suggesting A Hancock II From Medtronic Which Is Also A Bioprosthesis.size 25.
He Is Only 15 And My Concern Is That How Many Times This Valve Can Be Replaced? what Is The Best ,available For Him? Is Ther Any Statistics Available About The Durability Of Different Valves,brands,for His Age?I Am Hoping To Find One That Lasts Longer.

 

[RCB]

My experience

My experience

Hello. My Son Is 15 Years Old.
He Is Only 15 And My Concern Is That How Many Times This Valve Can Be Replaced? what Is The Best ,available For Him? Is Ther Any Statistics Available About The Durability Of Different Valves,brands,for His Age?I Am Hoping To Find One That Lasts Longer.

Welcome to this VR.com!
Wow ZAHRA,
You son has been through alot for his age!

No one knows how many times a valve can be replaced, but there is no question that the more times a person has surgery the worse it is for the total
body system.

What is best is somewhat subjective, depending on what are your's and your doctors' greatest fears. It it warfarin therapy or more reoperation. Statistically it is about the same, except it is my opinion that that number is not adjusted for multiple surgeries.

Bob. H will be along to share his expertise on the range of durability for a given tissue valve in a given valve position for a given age.

As far as a mech. valve, it is extremely rare for the newest mech. valves to be replaced due to a defect or ware. Most have been stress tested to over
200 years of use without a failure. There one valve, ON-X that they are doing tests on right now that might show that it can be use with only an aspirin a day and one of our members has a child younger than your who has one. Something to think about.

I think I read in your profile that you are an engineer. If that is true you will
have no problem analysing the data available at the manufacturors website on valves. Lot of great stuff there.

I wish you and your child good luck and what ever your decision, I'm sure things will be fine.

 

[mmarshall]

just wondering...i think most of you know my story....at age 31...i was going in for the ross procedure and had the tissue valve as my back up. i saw three different surgeons and the first one advised the rp with a mechanical as a backup...second surgeon advised a mechanical only (which after research...found out he did not do ross procedures)...third one advised rp with the latest stentless tissue valve as a backup. the third surgeon told me that he can do the rp, mechanical, or tissue...but he recommends the rp..with a tissue as a backup. ended up that the rp could not be done and now have a tissue. all three surgeons gave me the same stats as far as coumadin/warafin goes and did not say anything bad about it. i already had in my mind that if i end up with a mechanical then i will just have to deal with coumadin and move on....everyone that is forced to deal with something to survive will just have to deal with it and adjust. but once my surgeon informed me that i am facing at least one more ohs in my lifetime...my thought process went to what will be best for me in 15-20 years from now...based on the surgeon's estimate...even though my valve may only last 10 years. i feel my health and risk of surgery will be better in my mid to late 40s...or hopefully mid to late 50s with a tissue valve....rather than 60s to 70s with a mechanical. but here is my question that i have. the surgeon i went with was the only one to tell me this and to me it made since. the two other surgeons told me that i can have a mechanical valve and it would last a lifetime...of course there are not guarantees but more than likely it would be the only ohs. the surgeon i went with gave me the stats and rundown of the st. judes and told me that the function of the valve will last 200 years....but just because the function of that valve will last a lifetime...that doesn't mean that it will be in my heart for my lifetime. forgot the specific words he threw out there basically the mechanical valve would need to be replaced in about 30 years...give or take. not because of the valve wearing out, but because the surounding stuff around the valve. he informed me that any surgeon that tells you that a mechanical will last a lifetime is not exactly correct...given my age. i know my situation is a little different given my age...but has anyone around my age been told the same thing?

 

[RCB]

To ZAHRA-Some data you might be interested in.

To ZAHRA-Some data you might be interested in.

Although, my doctors at th Cleveland Clinic told me my 23 year old valve should last me the rest of my life and didn't bother to replace it-Doctor's don't give guarantees- just their best advice.
I thought perhaps some real life data, could give you some understanding
of valve durability and Quality of Life issues with mech. valves, not just another opinion:

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=12958549&dopt=Abstract

Keep in mind this study was done on one of the very early designed valves,
in of period of relatively crude heart surgery procedures and before they had the understanding of warfarin therapy(ie., they hadn't even developed INR
testing when these people had their surgery). It is perfectly logical to expect even much better results with todays mech. valve technology!
Enjoy

Hello. My Son Is 15 Years Old. He Was Born With Tof @ Abscence Of Pulminar Valve.He Was Sick Most Of The Time .
He Had His 1st Surgury When He Was 2 Years Old .They Closed The Whole With A Patch And Used A human Homograph(aged 22).He Was Just A Little Bit Better.But Still Getting Sick Very Often.
He Had His 2nd Surgury When He Was 7 Years Old.the VaLve Was Calcified And WaS Leaking. They Used A Carpentier Tissue Valve, Aortic ,Size 23.(calf). It Worked Very Nice On Him.He Could Have A Normal Activity.looking Very Healty. And Still Does.
3 Weeks Ego He Had His Yearly Checkup. The Tee. Showed High Pressure On His Heart.Apparently He Needs Another Valve Replacement. This Time They Are Suggesting A Hancock II From Medtronic Which Is Also A Bioprosthesis.size 25.
He Is Only 15 And My Concern Is That How Many Times This Valve Can Be Replaced? what Is The Best ,available For Him? Is Ther Any Statistics Available About The Durability Of Different Valves,brands,for His Age?I Am Hoping To Find One That Lasts Longer.

 

[tobagotwo]

I actually responded to your post about this on your other thread, ZAHRA. http://www.valvereplacement.com/forums/showthread.php?t=12189

My post was based on the tissue premise that had been recommended by the surgeon. However, RCB is right: it would make sense to understand their reluctance for a mechanical valve before proceeding.

I can think of several possible reasons for it, but it would be best to hear their reasoning, and go from there.

Note that the pulmonary valve is usually considered a less dangerous surgery than the aortic or mitral valve, so they may not have as many concerns with redoing it later. However, any type of OHS is no joke for the participants.

Best wishes,

 

[Lynlw]

Hi My son Justin is 17 and was born w/ transposition of the great vessels, vsd, pulmonary stenosis/atresia. because of his PS he couldn't have the switch so had a bt shunt at 10 days so he could get big enough for the rastelli where his had his vsds patched and got a conduit from his right ventricle to pulmonary atery. his conduit also was a homograft using his own tissue in hopes it would grow. Justin didn't get a pulm valve then since he didn't really need one and would keep needing it replaced as he outgrew it, .His conduit was blocked w/ scarring and calcification so was cut and patched when he was 10 and in May he had it replaced w/ a dacron conduit and since he is close to full grown at 5'11 he got a pulm valve. Justin got a 27 bovine, if you are interested in the reasons for our choice they are in a previous post in this thread.
These are my thoughts,I have a few questions, that I would ask if i were you, I'm assuming since he got his last valve when he was 7 he probably out grew it and that is why it needs replaced. Do you/they think he is close to being full grown? If not they might be thinking if he will out grow this one, to give a tissue valve at least one more time to put off meds. I know they opened Justin's conduit in the cath lab the last few years for a couple of reasons, but one was to give him more years to grow so when he had it replaced and got a valve he would be as close to full grown as possible and he did grow quite a few inches since he was 15 and he probably still isn't done growing.
also I know alot of TOF repairs have conduits at the right ventricle outflow tract, does your son? if so how long do they think it would be before that would need replaced? Justin's should last 10-15 years, so since he will need that replaced and the valve is in it, it made sense to go with tissue.
my last questions would be about your son's activities, Justin does alot of snowboarding surfing skatebaording is a catcher in baseball and has already needed surgery for broken bones, so the fact we were able to keep him off coumadin for probably a decade, was part of our thought process.
I'm sorry if your weren't looking for these thoughts and just wanted to know which valves would last longer. If I can help you with anything or if your son would like to talk to Justin about anything feel free to email me, Good Luck, I know how stressfull this time is since we just went thru it. I'll keep your family in my prayers, Lyn www.caringbridge.org/nj/justinw

 

[Lynlw]

sorry part 2

sorry part 2

I'm sorry I should have finished it, that if your son is probably close to fully grown and doesn't have a conduit or other part that would have to be replaced then It would make sense to look into mechanical, Lyn www.caringbridge.org/nj/justinw

 

[LUVMyBirman]

I sure missed a hot debate.

My two cents.........falling under the same catagory as Karlynn. My childs well being prompted my choice for the mechanical. There is nobody that could take my place in rasing her the way we see fit. So far.........a good decision. And, a very personal one.

 

[MarkU]

No such thing as one valve for life, despite what the companies want you to think...

decide how you feel about reop, how you feel about burden of coumadin, which folks handle differently, runs the gamut from no biggie to sentenced to many bad issues..

mechanical valves usually best for folks age 40-50's
tissue over 60, 50's toughest call

smith

With all due respect, you're making some pretty strong statements here. I'd be interested in seeing references to any specific studies or statistics to back them up.
If they're just your opinions, then I'd appreciate you stating as such.

Mark

 

[ALCapshaw2]

No such thing as one valve for life, despite what the companies want you to think...

What EVIDENCE to you have to support this statement? If this is just an OPINION, is it yours or are you passing along someone else's (and whose)?

decide how you feel about reop, how you feel about burden of coumadin, which folks handle differently, runs the gamut from no biggie to sentenced to many bad issues..

Can you provide some EXAMPLES of the "many bad issues"? Are these recent or did they occur BEFORE INR was developed as the standard measurement for determining anticoagulation level. Note that prior to 1990, testing and monitoring was 'crude' at best with poor sensitivity and high variability in reagent sensitivity.

mechanical valves usually best for folks age 40-50's
tissue over 60, 50's toughest call

I agree that people in their 50's are in a gray area. Valve Choice is a VERY PERSONAL decision for EVERYONE. When given a choice, most people select the valve whose negative aspects they can best live with.

smith

AL Capshaw - comments inserted in text above.