Ready to Get it Over With

[ToFMom]

Debbrn,

He's having the surgery at Mpls. Children's Hospital (by Abbott NW). It was a cardiologist that referred us back. Guess we didn't realize the expertise of the ones dealing with CHD to search for one. I remember it was hard for him to be in the waiting room with the ailing eldery patients when he was only 18 and feeling great...playing High School baseball and Legion baseball. He doesn't remember his first surgery (and I will never forget it!). So this is new territory for him. The pediatric cardiologist treats him like the adult he is & he really likes him. So for now we'll stay with him. Gosh, you're 41 and had ToF...how much they've learned since then. Hoping they will have perfected the procedure of inserting a new valve by way of a vein (not sure of procedure name) by the time this new valve will wear out!

 

[Lynlw]

Debbrn,

He's having the surgery at Mpls. Children's Hospital (by Abbott NW). It was a cardiologist that referred us back. Guess we didn't realize the expertise of the ones dealing with CHD to search for one. I remember it was hard for him to be in the waiting room with the ailing eldery patients when he was only 18 and feeling great...playing High School baseball and Legion baseball. He doesn't remember his first surgery (and I will never forget it!). So this is new territory for him. The pediatric cardiologist treats him like the adult he is & he really likes him. So for now we'll stay with him. Gosh, you're 41 and had ToF...how much they've learned since then. Hoping they will have perfected the procedure of inserting a new valve by way of a vein (not sure of procedure name) by the time this new valve will wear out!

It's funny you mention the valve by Cath. When we found out Justin needed another surgery for his conduit/valve, I called Boston Children's to see how far they are on their research for tissue engineered conduits, where they will grow conduits /valve from the kis own heart cells, but they are still a few years off for that, but they told me to send his records (he saw them in 04 for a 2nd, well technically 4th opinion) because they have a few trials going on now and would see if he was a candidate for any of them, since this will be his 5th OHS, they probably can't help him in the cath lab, but they started trials for replacing valves by cath, since he needs a conduit too that couldn't help Justin.
I understand the whole being with ailing elderly, IF Justin goes back to his last surgeon, which most likely he will, he had a choice of having surgery at Children's or the regular hospital (Uof Penn) right next door, he decided he rather be at the childrens hospial since they are brighter and cheerful then be one of the really young patients (19) at the adult hosp, Lyn

 

[Atlanta Sweetheart]

My son too was born with TOF

My son too was born with TOF

He had surgery and as an adult at 28 years of age. His Pulmonary valve was destroyed in the first surgery due to having to enlarge the pulmonary artery. He had absolutely no problems with recovery, he came home to have the surgery. He was in the hospital only 4 days and I took off the first 3 days he was home in that he's single. He really didn't need me to do that, he was just fine and although sore from the surgery his valve, a porcine one has worked well. We hope by the time he needs another surgery that they will be able to do with a catheter rather than more OHS. He skis, mountain bikes and has no restrictions on his activities. We always knew he may face more surgery so it wasn't a surprise. He does take lisinopril, but I think this is his only med. He feels great, try not to worry.

 

[Atlanta Sweetheart]

Oh by the way

Oh by the way

His surgery was done at an adult hospital but by a pediatric congential heart surgeon.