r/AdultCHD

Hey everyone, I’m Dave from Louisiana. I was born in December of 1984. I received the Norwood procedure in early 1985. It was still very new, and was known as the “banding of the pulmonary artery”. Few years later, I had the Fontan procedure, followed by my first pacemaker (which I lovingly called Joey) the next year.

Throughout the 90’s, I had a series of scar tissue cleanups (open heart) and another pacemaker change in either 97 or 98, can’t remember which one. As an adult, I’ve had an additional 2 pacer swaps and am about to receive another within the next year.

I am 41 years and 8 months old. I’m eager to know if there are any other HLHS champs out there that are my age or older?

Hi! I'm a 26 year old male with TGA and pulmonary stenosis. My TGA was corrected by the Rastelli procedure.

Today I went to my yearly checkup and when the topic of physical exercise came up I told the doctor I go to the gym and run. The doctor that I get each year seems to be different since I've come to the adults ward of the hospital, so he wasn't the one I had last year.

I told him I was doing strength training in the gym and he said it's good for my quality of life to train but only with very low weights, not strong like it's popular nowadays. I asked him what he meant by low weights and he said around 20kg max per side and higher reps.

This has gotten me very worried and confused, worried because I lift way more than 20kg per side to the point that if I just squat 40kg I won't feel much even if I do 20-25 reps (I currently squat 110kg for 10 reps in 3 sets).

I'm worried by doing this my trainings will last super long and I will also loose muscle and strength, which is something that has helped me a lot in my daily life as I used to get tired super easy and nowadays I'm able to play sports and actually enjoy them.

I'm also confused because 20kg seems like an arbitrary weight, and I had already told the doctor of last year that I did strength training, HIIT, hiking and some climbing and he said nothing about it. He did say he didn't recommend HIIT and instead recommended cardio that was less harsh such as running or cycling, but that he'd rather have me do HIIT than do nothing. When I asked if weight lifting or climbing (which involves lifting your body weight) were a problem he said they weren't.

They did tell me I have my right side of the Rastelli (which is a conduit) with moderate damage, but they also said this is fine and it's actually progressing slower than what would be expected.

Does anyone here train or have been told something similar? I'm quite worried I'll loose quality of life by training with very low weights.

Thank you in advance!

I was born with a coarctation and BAV. CoArc repaired as a baby. Valve repair at age 7. Balloon valvoplasty at age 12. AVR with tissue valve and root enlargement at age 25. Now, 16 years later the tissue valve is ready to come out. I’ve toggled between Ross and Mechanical. Besides the sheer crippling anxiety of OHS again, I’m nervous about making the wrong decision. I’m not afraid of Coumadin. I’m more afraid of the ticking. Im terrified of complications of a Ross. But my good friend had it and wouldn’t change his Ross for anything. Getting a CT soon and meeting two diff congenital surgeons. I’m also a CV surgical technologist so I know WAY TOO MUCH about OHS. I just want to go to sleep and wake up and have it be over.