[tofnurse]

Hello everyone. If you don't mind me asking, what kind of experience have you had working with tetralogy patients, if any?

Shawn

[janfrn]

Our unit sees about a dozen TOFs a year. What specifically are you interested in?

[tofnurse]

Just how well they usually do and if they are a handful to take care of. I realize every patient and case of tetralogy is different, but in general. Does your unit see any teenage tofers?

[janfrn]

Most of them do very well. That so much depends on what effects their TOF has had on their other organ systems, especially the lungs. We usually do a complete repair in infancy although we've had some kids who were missed initially and come in as toddlers or pre-schoolers. The most common post-op complications we see are bleeding, heart block and aortic regurgitation. They can be fairly sick in the first couple of days, and they often are "spoiled" by loving parents who wish to avoid the hypercyanotic spells that may accompany crying or anger.

A few years ago we admitted a refugee from Afghanistan who'd been seen at a Canadian military camp; she was 4 and very ill. The Canadian Army had her flown to our city on a commercial flight. When the family arrived at the hotel the aid agency had procured for them, the desk clerk took one look at her and called an ambulance. She ended up on ECMO for a few days, then went on to successful repair. She's about 8 now.

The teenagers we see are usually the ones who require reoperation for recurrent pulmonary stenosis. They may need an RV to PA conduit or sometimes RV muscle bundle resection. They usually are the ones who arrive extubated and go out to the cardiology floor the next day.

[WarEagle4Life]

Hi! I live with a TOF'er with PA. She wasn't repaired until she was 6-7 years of age (she's 18 now). Back in the day, treatment was considered palliative for her and optional. There was really no true pulmonary artery (think smaller than a spaghetti strand) and only 2, possible a third collateral artery.

Each of her 6 operations have been different. She "flew" through 3, had very tough times with the other 3. She had her homograft replaced in 2004 with a pig valve - she's very proud of that!

In talking with other moms and other health care professionals, everything is dependent on the child's particular anatomy and any other co-morbidities. My daughter's cardiologist told us there is rarely a "textbook" heart condition and my limited experience with other TOF'ers bears this out.

Her problems now stem from decreased oxygenation for 6-7 years (low 60s-low 70's) and blood that looked like sludge. Fortunately for children now, most (hoperfully) encounter any neurological difficulties.

The dad of one of our RTs' is a 59 year TOF who was one of the first repaired after the work of Drs Blalock & Taussig. He enjoys a very full life!

[mom23RN]

I only have "civillian" dealings with tetrology but all have been very favorable. My friend's son has tetrology and had open heart at about 4 monhts and then another one to have his failing valve replaced. He will have to have another due to the valve in his 20s or so.

One of the guys that works for my hubby has a little guy with tetrology who has done INCREDIBLY well. He had surgery at about 4 days old and hasn't looked back.

As for adults/teens did you know that Shaun White (the snowboarder known as the Flying Tomato - Won gold in the olympics) had TOF. He had two surgeries before age 5. Man, is he amazing!!! I think that is a story that needs to be told and publicized more than it is (though I'm sure he gets tired of hearing about it).

[HRM672]

I just had a very pleasant 18yo male with Tet that was repaired in 1989. He's doing great, just back for a valve replacement. Probably went home today.

[MarieFutureRN]

My twin sister has TOF she has had 2 pulmonary valve replacements. She has done well and had a normal life.