Any tetralogy of fallot survivors out there?

Any tetralogy of fallot survivors out there? i’ve had 3 open heart surgeries 1965,1967 and 2006, 2 defib/pacemakers installed lol just want to connect with anyone that has this heart defect.

Hi @ricke62
Welcome to Connect. I moved your thread to join @4n6champ‘s message. Hopefully he/she will join in the discussion even though it’s been awhile.

Rick, I assume the first 2 surgeries were done when you were a child? Tell a bit more about how you’re doing now – kind of like the “day in the life of a tetralogy of fallot survivor” from your perspective. (Sounds like that should be the name of a book, eh?)

Colleen
Connect Community Director

Rick, I also meant to tag @pfsinger on this thread. She, too, has tetralogy of fallot. She had a pulmonary valve replaced with a porcine valve in July of 2006 and wonders what advancements have been made with respect to minimally-invasive valve replacement. I bet you can relate.

Yes, my 1st surgery was done when i was 3 and the second was done when i was 5, and they have come along way with that kind of surgery, i know both of those 2 surgeries at that time they didnt have the heart and lung machine, they packed my heart with ice to slow the heart down while working on it. i’m going thru issues now but have a awesome cardiologist.

Yes i can relate to her, i also had my pulmonary valve replaced in may of 2006 and a defib/pacemaker in march of 2006.the valve i had was also a porcine valve, a cow valve which is good for 8-10 yrs so i’m on my 10th yr has we speak and will have my 3rd pacemaker in june or july of 2016. the meds i’m on for all of this does have side effects, blurred vision and tiredness and weakness, going to my disability hearing tomorrow cause i cant do the job i was doing in the past.