And here we go again...#6

[Sarah_Louise]

Hi everyone,
Hope your all well,
I got a letter through yesterday to say i have been granted funding for my pericutaneous pulmonary valve replacement
Will be my 6th lot of heart surgery, yesterday i was on cloud nine i'd got my funding etc but todays it's hit me i'm having heart surgery again and in the next few weeks only 14 months after my last OHS :eek2:
They wanted to know the date of my last exam so they don't clash (18th June) they are getting a team together, bringing in another surgeon (My heart hospital only has 2 specialist CHD surgeons and this op requires 3) and i'll have it done,
I've been told it's very risky as it's number 6 cause of 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 25% chance it'll work/i'll benefit from it,
So now i wait for a date, but at least i don't have to try and find about £80,000 to have it done!!!!
Does anyone have any information on the pericutaneous pulmonary valve replacement? or have an idea where i could find any?
Thanks everyone,
Love Sarah xx

 

[escargome]

I don't have any info to contribute to pericutaneous valve replacement (pulmonary). I only want to tell you that will keep you in my thoughts and prayers as you again walk down this heart mending road. You are so strong and show so much courage. I am praying for a truly successful outcome for you. You deserve only the very best.

 

[Lynlw]

I'm glad you finally got the funding a that you will be able to avoid having OHS or even min invasive and pretty much have the same recovery as a normal cath. I know your risk of things are higher since you have a history of strokes from clotting, but if it helps Justin has had some rare complications after a few of his caths (for a while Caths made me more nervous than his OHSs) and has terrible scarring from all his surgeries and his last 2 OHS were very high risk because his heart was fused to his sternum and he tends to have scarring inside his pulm conduit, BUT scarring never caused any problems or even has a big concern before his interventional caths, even when he had stents placed. so hopefully you (well your docs) do as well even tho you have scarring. What kind of docotr will be doing it an Interventional Cardiologist or surgeon? I am sorry and surprised to hear they think there is only 25% you'll benefit from it and will say prayers you are in that small percentge and can avoid OHS for at least another decade.

What kind of info are you looking for? I might have some but not quite sure what you are looking for.

 

[Sarah_Louise]

Thanks Chris
Lyn, from what i can make out im have 3 surgeons as there bringing one in from another hospital in the UK, yet my cardiologist referes to himself doing it so i'm not 100% sure there, i'll probably be over soon to sign concent forms etc, I'm after any information
Love Sarah xxx

 

[Lynlw]

Thanks Chris
Lyn, from what i can make out im have 3 surgeons as there bringing one in from another hospital in the UK, yet my cardiologist referes to himself doing it so i'm not 100% sure there, i'll probably be over soon to sign concent forms etc, I'm after any information
Love Sarah xxx

Does your Cardiologist do caths? If so its possible he's doing it and the surgeons are for back up, altho some places either do them or depending on where they need to access from etc.
If you want to read various articles about the melody Valve, which is the most common pulm percutaneous valve there are a few abstracts at pubmed.com put melody valve in the search there. Besides checking the forums at GUCH and adults with CHD org forums, you might be interested in hearing from (usually) parents of kids and i think some teens whove had them done in the past few years, if so You could check out the mail group pdheart at http://tchin.org/support/index.htm and if you introduce yourself and ask for others experience w/ the Melody valve (I think most people there have ha the Melody and not one of the other percutaneous pulm valves, I know there were a few in the past year or so there . They'd probaby love hearing from you

We looked into Justin taking part in the trials for them when he had his last OHS, but his valve ended up being fine, it was the conduit so he didnt qualify and needed OHS I cant offer any prsonal knowledge

 

[Roberta]

Sending you tons of positive vibes and lots or prayers SL re: your upcoming surgery. Sorry, I don't have any info on percutaneous pulmonary valve surgery.

We are here for you.

 

[Boston Tiger]

I don't have any information for you, but will send you my best wishes as you head to your next procedure.

 

[clfhangr]

Sarah,
You are in my thoughts and prayers.
Keith

 

[TheGymGuy]

Sarah, stay positive and everything will be ok. Sounds like you will have plenty of experts to look over things and make sure everything goes to plan. Best of luck and will keep you in my thoughts.

 

[Superbob]

Sorry I don't have any information to pass along, but I will certainly keep you in my thoughts and prayers, Sarah. All best to you -- keep us posted.

 

[Jkm7]

Sarah,
I've gained such respect for your positive attitude and fighting spirit. They will serve you well during this surgery.
What good news they have approved the funding and are making all plans to keep you safe.
You certainly will be in my thoughts.
You'll do fine; I just KNOW it.

Please let us know how it is going as you progress through this journey.

 

[neil]

hi sarah, how come you had to get funding? am sure all will go well, your a tough cookie

 

[Scott]

Sarah,
You are an inspiration. I just know you will be fine. You are in my thoughts and prayers.
Scott

 

[Sarah_Louise]

Thanks everyone
Have let them know the date of my last exam, but my cardiologist is on holiday all this weekm but they have emailed him it so he will get it next week...so the balls in motion now! eeeekkkk!!!!!

hi sarah, how come you had to get funding? am sure all will go well, your a tough cookie

Hi Neil, the op wasn't available on the NHS as it isn't the normal OHS, there doing it all through my leg, so its not standard procedure, and my cardiologist has had to apply to the goverment through my local PCT to see if they would fund the op (had to appeal twice, but got there in the end!)

Does your Cardiologist do caths? If so its possible he's doing it and the surgeons are for back up, altho some places either do them or depending on where they need to access from etc........

Hi Lynn,
Yeah my cardiologist does do caths, but so do all the cardiologist there so i'm assuming they need the surgeon as only a handful have been specially trained to do the procedure here in the UK? i'm not sure lol. Will have a look at them websites, & post on GUCH,

I will only be the 6th person in my hospital to have it done!!! Something lucky about number 6... 6th heart surgery, i've been waiting 6 months, and i'm the 6th person to have it done here....
Thanks again everyone,
Love Sarah xxx

 

[Lily]

Just sending my best wishes to you