Appointments...

[Sarah_Louise]

Hi everyone,
Had a cardiac and dental appointment today.
Dental hospital first: I've got a chronic infection, and lots of scare tissue in my tooth & gum, therefore no amount of anti-biotics will help & the only way to sort it out is to take the tooth out! which will happen in the next few weeks!!

Heart hospital next: My cardiologist was brilliant with me, explained everything of what he's going to do, in an ideal world he'd like me in next month, eek2 but cause i still dont have the funding he doubts its gonna happen, i'll know in the next month what is happening with RE to the funding it will either go one of three ways;
1. Yes i have funding, then he'd have me admitted and do the op,
2. I get completely refused then i'd need to got down OHS route,
3. I get turned down but have a chance to appeal, then i'd appeal the decision,
I should be in 3 nights, could get away with 2 and he's aiming for a date in June, as my heart needs it, but got a back-up appointment with my cardilogist in July, but should of heard something by then, if not already had it done,
I've got severe narrowing in my pulmonary artery, as well as severe narrowing in my arteries branching into my lungs, there's a chance when they get me on the table they wont be able to do the op in case my heart pressures to high or there's nothing to help support the valve when its in! then they'd come out and i'd be discussed for OHS,
A lot happier as my cardiologist explained everything and answered all my questions
So still playing the waiting game but a but happier as the ball is rolling,
Love Sarah xxx

 

[escargome]

God Bless you sweetie. I hope that funding does in fact come through for you and you are also able to get your tooth problem corrected. You definately need a break from that dark little dark cloud.

 

[Boston Tiger]

Hope everything works out well for you.

 

[Greg~]

Sarah,
You are truly an inspiration and I really hope you get everything you want from this. You're in my prayers for funding approval and a highly successful and short procedure and recovery

 

[Ovie]

Sarah, you appear to have been through alot at such a young age than most do in their lives. I hope every thing works out and things fall into place. You're one strong individual, I'll keep you in my thoughts.

 

[epstns]

Hang in there, Sarah! We're all cheering for you, and you're a tough one. Let's hope the funding comes through, too.

 

[Lynlw]

Thanks for the update. I'm glad you have alot more answers now. It sounds like a really good idea to get that tooth out beore it causes more problems. Will the dentist do it in his office or will they make you go to the hospital to have it removed? Justin had his wisdom teeth removed a year or so ago, one was impacted and pretty infected too, so i felt much better knowing it was out. his oral surgeon did it in her outpatient office, but I know lots of CHDers need to go to the hospital.

I hope they approve this funding soon, and that they are able to do it by cath, It would be nice for you to be able to enjoy the summer recoverring from a cath and not recoverring from another OHS. What is the plan for the narrowing of the branches?

 

[Roberta]

That's alot of info to take in Sarah, but I am glad you had all your questions answered and a bit of a game plan. I will say a prayer and keep fingers crossed that the funding goes through soon.

 

[Fundy]

Even reading about tooth extractions make me cringe. Why can't they make dental procedures as easy as OHS?

Hope your able to get both those items fixed up soon.

 

[Sarah_Louise]

Thanks for the update. I'm glad you have alot more answers now. It sounds like a really good idea to get that tooth out beore it causes more problems. Will the dentist do it in his office or will they make you go to the hospital to have it removed? Justin had his wisdom teeth removed a year or so ago, one was impacted and pretty infected too, so i felt much better knowing it was out. his oral surgeon did it in her outpatient office, but I know lots of CHDers need to go to the hospital.

I hope they approve this funding soon, and that they are able to do it by cath, It would be nice for you to be able to enjoy the summer recoverring from a cath and not recoverring from another OHS. What is the plan for the narrowing of the branches?

Thanks everyone,
Lyn, i've to go to th dental hospital to have it done, there hoping without sedation, but the filling i've got in is stuck to my gum so i'm imagining that it's going to be very painful when they pull it out, should hear end of this week when i'm having it out,
He's hoping he'll be able to stent them at the same time of the valve replacement, i think i had the blinkers on yesterday as it hit me that OMG i could need another OHS is the next 6 month!! But i'm thinking positive that i'll get funding,
Also was shocked to be told i don't need any more antibiotics by my cardiac dental nurse even tough i have a chronic infection & don't need cover when its getting pulled!
Thanks again everyone,
Love Sarah xxxx

 

[dhudson]

Hang in there Sarah, It will all come together for you. I will be praying as always, right along with everyone else!!

 

[Sarah_Louise]

Thanks Doug
xxx

 

[Lynlw]

Thanks everyone,
Lyn, i've to go to th dental hospital to have it done, there hoping without sedation, but the filling i've got in is stuck to my gum so i'm imagining that it's going to be very painful when they pull it out, should hear end of this week when i'm having it out,
He's hoping he'll be able to stent them at the same time of the valve replacement, i think i had the blinkers on yesterday as it hit me that OMG i could need another OHS is the next 6 month!! But i'm thinking positive that i'll get funding,
Also was shocked to be told i don't need any more antibiotics by my cardiac dental nurse even tough i have a chronic infection & don't need cover when its getting pulled!
Thanks again everyone,
Love Sarah xxxx

I'm surprised about the no antibiotics too. When justin had his 4 wisdom teeth removed, since 1 was infecteed, he was on antibiotics a week or 2 before the surgery, they stopped a couple days early because it was givng him alot of stomach problems, then during the surgery (he was sedated by IV) she ran Antibiotics thru another IV, then he was on a different antibiotic about a week after (they changed which one since he had the problems with the first one (i cant remeber which ones he took) Maybe he was on more because he has had BE before,( AND lives in the US not Uk and there are different guidelines) but Im really surprised they arent givng you any with the infection already in your mouth especially since it sounds like it might be bloody removing it.
Altho im confused what a Cardiac Dental nurse is, do they have a dental center just for heart patients? If so it sounds like they would be really on top of things

I was wonderring if they could snets the branch arteries, Justin had 2 stents in his conduit for a while, they worked out really well since he got them when he was 12 and they were able to balloon them open wider when he was growing. Of course you hve our prayeers everything works out the easiest way for you both with your teeth and heart. And the valve is in a place they can help you in the cath lab. I remeber being pretty bummed to put it mildly, when we were hoping they would be able to widen his conduit with ballons and stents (he didnt have a pulmonry valve at that time, but because of where the narrowing was there wasn't anywhere to support it, like you mentioned, so he needed OHS, now he has a section of conduit right off the right ventricle then the pulm valve and then another section of conduit.
Its pretty amazing how they can rebuild different parts of the heart.

 

[Sarah_Louise]

I'm surprised about the no antibiotics too. When justin had his 4 wisdom teeth removed, since 1 was infecteed, he was on antibiotics a week or 2 before the surgery, they stopped a couple days early because it was givng him alot of stomach problems, then during the surgery (he was sedated by IV) she ran Antibiotics thru another IV, then he was on a different antibiotic about a week after (they changed which one since he had the problems with the first one (i cant remeber which ones he took) Maybe he was on more because he has had BE before,( AND lives in the US not Uk and there are different guidelines) but Im really surprised they arent givng you any with the infection already in your mouth especially since it sounds like it might be bloody removing it.
Altho im confused what a Cardiac Dental nurse is, do they have a dental center just for heart patients? If so it sounds like they would be really on top of things

I was wonderring if they could snets the branch arteries, Justin had 2 stents in his conduit for a while, they worked out really well since he got them when he was 12 and they were able to balloon them open wider when he was growing. Of course you hve our prayeers everything works out the easiest way for you both with your teeth and heart. And the valve is in a place they can help you in the cath lab. I remeber being pretty bummed to put it mildly, when we were hoping they would be able to widen his conduit with ballons and stents (he didnt have a pulmonry valve at that time, but because of where the narrowing was there wasn't anywhere to support it, like you mentioned, so he needed OHS, now he has a section of conduit right off the right ventricle then the pulm valve and then another section of conduit.
Its pretty amazing how they can rebuild different parts of the heart.

She is a trained dental nurse but works closely along side cardiac patients, especially CHD'ers, i've been seen by her since i ws about 6, whn i had to be sedated to ave 7 teeth removed, so she knows me and my case, she's brilliant
Was Justin's conduit kinked? It's amazing that they are so advanced to be able to do it
Love Sarah xxx

 

[Lynlw]

She is a trained dental nurse but works closely along side cardiac patients, especially CHD'ers, i've been seen by her since i ws about 6, whn i had to be sedated to ave 7 teeth removed, so she knows me and my case, she's brilliant
Was Justin's conduit kinked? It's amazing that they are so advanced to be able to do it
Love Sarah xxx

YES, but that was the next surgery 2 years later (in 07 when he was 19), they thought it might be the valve that time, and we were hoping to be abe to do the melody valve trials. But it ended up being the fist section of conduit, it was a combo of kinked, scar tissue and his sternum pressing on it (since his conduit/pulm valve is on top of his heart) all combined that made it almost closed. He ended up needing surgery. The valve and 2nd section of conduit were like brand new so they just replaced the first section

Wow needing 7 teeth removed so young relly stinks. just always remember what a strong person you are and can handle anything thrown your way

 

[Sarah_Louise]

YES, but that was the next surgery 2 years later (in 07 when he was 19), they thought it might be the valve that time, and we were hoping to be abe to do the melody valve trials. But it ended up being the fist section of conduit, it was a combo of kinked, scar tissue and his sternum pressing on it (since his conduit/pulm valve is on top of his heart) all combined that made it almost closed. He ended up needing surgery. The valve and 2nd section of conduit were like brand new so they just replaced the first section

Wow needing 7 teeth removed so young relly stinks. just always remember what a strong person you are and can handle anything thrown your way

Did the docs no the conduit was kinked before they put him up for the PPVR?
Sorry for all the questions, just my mam ws told mine was kinked and i was talking to a lady a few months back who's conduitwas kinked, was put forward for a PPVR, but they couldn't do it, ended up in ITU, she's unfortunatly passed away now as she never got a different op done in time ,
Love Sarah x

 

[Lynlw]

Did the docs no the conduit was kinked before they put him up for the PPVR?
Sorry for all the questions, just my mam ws told mine was kinked and i was talking to a lady a few months back who's conduitwas kinked, was put forward for a PPVR, but they couldn't do it, ended up in ITU, she's unfortunatly passed away now as she never got a different op done in time ,
Love Sarah x

When they found out what and where the stenosis was, and that his valve was fine, he wasnt't a candidate for the trials, so we didnt go to the center that was doing the trials, since he would need it replaced by OHS. They couldnt stent it open either since it was right on the seam where the conduit was sewn to the right ventricle, so there was no place to hold the stent in.. I'm not sure what ITU is sorry. I'm sorry to hear the lady passed before she could have her surgery

 

[Sarah_Louise]

When they found out what and where the stenosis was, and that his valve was fine, he wasnt't a candidate for the trials, so we didnt go to the center that was doing the trials, since he would need it replaced by OHS. They couldnt stent it open either since it was right on the seam where the conduit was sewn to the right ventricle, so there was no place to hold the stent in.. I'm not sure what ITU is sorry. I'm sorry to hear the lady passed before she could have her surgery

Ahh right, i get you now, ITU is intensive care unit xx