Pulmonary valve replacement

[Sarah_Louise]

Hi everyone,
Hope your all well
Just looking for some information, i'm waiting for my 6th lot of heart surgery, this time to replace my pulmonary valve and stretch my conduit pipe, but it's not going to be via OHS, it will be done perecutaneously (sp) :eek2: (through my leg)
I've been told it's very very risky as it's number 6 cause if scar tissue, and cause i've already had a few strokes i'm at higher chance of having another, even though it's not OHS there's a high chance something can go "severly wrong" and if when stretching the pipe it bursts it will turn into emergancy OHS and "the odds of me making it are pretty none existant!" and there's only a 20% chance it'll work/i'll benefit from it,
I was meant to be having it next year but i'm not managing too well so looking at any time now, (my cardiologist whom i seen on a friday said if he had the equpiment there he would have done it the following monday!!! :eek2: )
My local hospital have also said i've now got Chronic pulmonary embolisms, so awaiting test results to see what happens with this now too, and i received a letter the other week, which said i've got severe calcification over my right ventricle outflow tract, aortic valve regurgation (only had the valve in 6 months!! ) and tricuspid valve regurgation,
Had an MRI scan, lung tests, stress tests and everything else last Thursday, so waiting for a phone call once i've been discussed in the surgical meeting, So playing this waiting game again now
So i was just wondering if anyone has ever had the op done this way before? how long where you in hospital? how long where you in theatre? Did it work? Have they said how long the valve will last? Any other information you could give me that might help?
Haven't seen my cardiologist yet to ask him any of this/discuss the procedure properly but just wanted a heads up
Thank you
Sarah xxxx

 

[Fundy]

Hi Sarah.

I don't have any experience with such a procedure. Just wanted to say how shocked I was to see you were just 17. From reading this post I was thinking 80 at least, appears I was very wrong.

I'm sorry to see you've been through quite a lot in the first 17 years and looks like you've got quite a bit more to go. Do you know why your aortic tissue valve is failing so soon? 20% success rate guess for this procedure for you; your definitely extremely high risk. I wish you the best of luck with this transcatheter procedure, its about time your luck changes.

Here's hoping it starts now.

 

[Lynlw]

Hi everyone,
Hope your all well
Just looking for some information, i'm waiting for my 6th lot of heart surgery, this time to replace my pulmonary valve and stretch my conduit pipe, but it's not going to be via OHS, it will be done perecutaneously (sp) :eek2: (through my leg)
I've been told it's very very risky as it's number 6 cause if scar tissue, and cause i've already had a few strokes i'm at higher chance of having another, even though it's not OHS there's a high chance something can go "severly wrong" and if when stretching the pipe it bursts it will turn into emergancy OHS and "the odds of me making it are pretty none existant!" and there's only a 20% chance it'll work/i'll benefit from it,
I was meant to be having it next year but i'm not managing too well so looking at any time now, (my cardiologist whom i seen on a friday said if he had the equpiment there he would have done it the following monday!!! :eek2: )
My local hospital have also said i've now got Chronic pulmonary embolisms, so awaiting test results to see what happens with this now too, and i received a letter the other week, which said i've got severe calcification over my right ventricle outflow tract, aortic valve regurgation (only had the valve in 6 months!! ) and tricuspid valve regurgation,
Had an MRI scan, lung tests, stress tests and everything else last Thursday, so waiting for a phone call once i've been discussed in the surgical meeting, So playing this waiting game again now
So i was just wondering if anyone has ever had the op done this way before? how long where you in hospital? how long where you in theatre? Did it work? Have they said how long the valve will last? Any other information you could give me that might help?
Haven't seen my cardiologist yet to ask him any of this/discuss the procedure properly but just wanted a heads up
Thank you
Sarah xxxx

Hi Sarah, its always good to see you. Justin doesn't the Melody valve, altho we did look into it when it was still in the trials, to hopfully avoid his 5th OHS, but it ended up his valve was fine so he didnt need it,he just needed a section of the conduit (pipe) replaced. BUT he has the same pulmonary conduit, right ventricle outflow tract repair you do and he DID have 2 stents placed in it and had the conduit balloon opend a few ( 4 or 5 i cant remeber) times with and with out the stents in it.
He never had any problems and IF it helps i dont know of anyone whose conduit burst while they were trying to make it larger.

Since it is done by cath and not OHS, I'm not really sure why the scarring from other OHS makes it riskier, but it did make opening his chest the 4th , 5,6th times a little riskier. I'm not sure why it would cause a stroke, since it is on the right side, I think it would send any clots to the lungs not the brain, but maybe I'm not understanding.
Why do they think it only has a 20 percent chance of working for you? Would they do OHS to replace the valve and conduit if it didnt work? hopefully it is very succesfull and you can Finlly start being able to enjoy being a young adult
As for your other questions, I dont think anyone knows how long it can last, the oldest ones have only been in about 12 years now, hopefully your ocotrs will know since they've been doing them in the UK alot longer than here.
you know you are ALWAYs in my thought and prayers. I really hope you have a good Christmas and 2012 is the best year you've had in a while, like you probably I can't wait for 2011 to be done.

 

[Duffey]

I can't help with any information, Sarah, but I do want you to know we all wish you the very best. I'll be looking for an update after you talk to your cardiologist.
Mary

 

[ottagal]

Hi Sarah Louise,
I am mustering up as many positive vibes as I can for you as you embark yet again down the heart surgery path. I wish I had some answers for you on some of your questions.

Stay strong and try and keep positive. We are always here for you.
Take care,

 

[Bina]

Hi SL, I can't offer any help with your questions, but am thinking of you and sending good vibes

 

[Sarah_Louise]

Thanks everyone
Fundy: No-one's said why but got a list of questions to ask my cardiologist, and thats on it,
Lyn: It's scaring round my leg where there going in and actual scaring on my heart that's making it so high risk, and i'm at high risk of stroke again because i've had them before,
Thanks again everyone xxxxx

 

[Lynlw]

Thanks everyone
Fundy: No-one's said why but got a list of questions to ask my cardiologist, and thats on it,
Lyn: It's scaring round my leg where there going in and actual scaring on my heart that's making it so high risk, and i'm at high risk of stroke again because i've had them before,
Thanks again everyone xxxxx

How have your legs been? I know you were having lots of problems with clots.. Hopefully this would go smoothly, I think it is about time you had good luck for a change

 

[Sarah_Louise]

How have your legs been? I know you were having lots of problems with clots.. Hopefully this would go smoothly, I think it is about time you had good luck for a change

Still having problems with them, i keep getting the symptoms of clots but they think it's because i've got intermittent vasospasms in the arteries, but the medication they use to treat it, i can't have because of my heart so just in this visious circle, but i'll get there.....eventually lol xxxx

 

[Lynlw]

Still having problems with them, i keep getting the symptoms of clots but they think it's because i've got intermittent vasospasms in the arteries, but the medication they use to treat it, i can't have because of my heart so just in this visious circle, but i'll get there.....eventually lol xxxx

Hey when you talk to your cardiologist or surgeon, you should ask for the name of the surgery you had when they "replumbed your heart". I keep thinking from your descriptions/CHD you might have had a "Rastelli procedure" or a modified one or one of the surgeries like that like Justin had as his main surgery when he was a toddler too, part of the Rastelli is when they have to put a conduit from your right ventricle. You should ask partly, because Its good to know what the name of the different surgeries were (IF they have names) when you go to new docotrs or end up in a different ER, but also cause i'm nosy and always wonderred