TGA?

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TGA?

Postby naenaesmom » Tue Aug 08, 2006 7:43 pm

Hi, I'm not a teenager (maybe i can be re-directed to a more appropriate site), but i was curios as to if there are any tga persons in this forum and wanted to know what were the experiences growing up into the teenage years as it relates to this particular defect? My daughter who is now 1 had her heart repaired for tga last year, so far she is doing well but wanted some foresight as to what may or can occur in the future.
Mom to Branae, my heart child born July 8, 2005. tga, arterial switch at 10days old.
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Postby elizabeth » Tue Aug 08, 2006 8:57 pm

Hi, naenaesmom

(living in the Bahamas? Lovely!! :) )

I have TGA but had a different operation from your daughter (times change - the switch she had is thought to be better long term :D). I'm not a teenager either, having just turned 30(!). When I was born they had only been operating for TGA for about 12 years so there weren't too many people even as old as their teens to look at as a guide to the future. Things are much better now - there are plenty of us around . :lol:

I've always been very well, after a repair job on my first op, so my heart condition wasn't a huge issue. In fact I'm struggling to think of any times it made a big difference as I grew up.

Obviously my parents worried about me but I guess I just took it for granted as I have always had the operation scars and got breathless quicker than everyone else. :? Those are the only effects I've ever had, really.

I don't know quite what else to add, except that the outlook is mostly very good but if you've got something particular you want to know then do ask. 8)

Also, if you want to chat to other mums (and dads!) about the parent's viewpoint, look at Heartline here: http://heartline.org.uk/
TGA - 1976, Mustard 1977 & baffle repair 1984.
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Postby Mike_H » Tue Aug 08, 2006 9:42 pm

Hi, naenaesmom

Like Elizabeth I am also not a teenager as I'm now 38.

I have had a different operation to your daughter so my experiences may not be relevant. I can do some physical activites, but usually have to stop before most people as I get out of breath, and I take longer to recover.

I had no problems or extra operations till I was 35. I then became more breathless than I normally did so I was started on medication. This appears to have sorted me out for now.

If you want to chat about anything then let me know

Take Care

Mike
TGA 68 - Mustard 70
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Postby naenaesmom » Wed Aug 09, 2006 6:28 pm

Thanks Elizabth and Mike for your responses. Seems like you guys are doin very well. :D its very assuring that you both lead normal lives despite your heart conditions. So far so good with her, she has alot of energy and doesn't tire quicky at all, so she's the typical one year old heading for the terrible two's. What has it been like recieving insurance, i was told not until she's about four they will consider her. How often do you guys see your cardiologist? Whats it been like for your careers, were their limitations as to what kind of jobs could be done and what about sports and activities, were their limitations. Liz, what about pregnancies? were u given the go ahead for a pregnancy and if so did you have increased complications due to your heart condition.
Mom to Branae, my heart child born July 8, 2005. tga, arterial switch at 10days old.
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Postby Mike_H » Wed Aug 09, 2006 8:40 pm

Hi

What insurance do you mean? I have had problems with life insurance & Car insurance, although the car insurance is better than it used to be.
I am a mechanical design engineer and started this career as an apprentice fitter. I was told that I should not do any work that involved heavy lifting or other strenuose (sp?) activities. I actually worked in heavy engineering, but they had all the specialist lifting equipment.

I was banned from doing sports at school, but this was more to do with nobody knowing about heart problems in kids and not wanting to take any risks. I cannot run very far without getting breathless.

Mike
TGA 68 - Mustard 70
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Postby elizabeth » Wed Aug 09, 2006 9:16 pm

Hi, naeneasmom

I've not had a problem getting insurance, but I've never tried to get life insurance (though I imagine it'll be some time before your daughter needs this!). Travel insurance can be a bit more expensive but shopping around helps.

I was seeing the cardiologist every 2 years, now back to every year.

I am not supposed to do strenuous exercise or competitive sports; at school I tended to do the same as everyone else but come last and get more tired than them. Also, as Mike says, taking longer to recover. Also remembered that rollercoasters and pirate ships make me go totally white and scare the sibling who dragged me on them : :shock: something about the freefall effect doesn't agree with my circulation. :)

There are a couple of TGA people on the board with children (I don't have any): do a search and look out their posts.

Hope this helps. Your daughter sounds like she's doing well , which is excellent. :)
TGA - 1976, Mustard 1977 & baffle repair 1984.
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Postby naenaesmom » Fri Aug 11, 2006 12:22 pm

Me again,

Mike i was referring to life insurance and medical. You answered my question tho. The life insurance i can do without for now, but the medical is what i need for her,but can't get right now. Quality Healthcare in the Bahamas is expensive(i guess everywhere right), but for example her echo's are repeated every 3-6months, everytime she has an echo its $500, ecg and chest x-rays all have to be paid in cash, so its very taxing for me right now. Other than that she's doing fine and we're just taking it one day at a time. Thanks again for your replies. I'll keep in touch, share experiences and look forward to your remarks.
Mom to Branae, my heart child born July 8, 2005. tga, arterial switch at 10days old.
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Postby Mike_H » Fri Aug 11, 2006 12:37 pm

Hi

We are lucky to have the national health system in the UK so don't have to have medical insurance.

Mike
TGA 68 - Mustard 70
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Postby naenaesmom » Sat Aug 12, 2006 2:38 pm

Yes, you guys are very lucky. Hopefully we will get to that point here in the Bahamas. There are talks about a National Health Insurance Plan for all, but it hasn't materialized yet. Under this plan is everything free, or just affordable whereas you make co-payments as such or, you pay a monthly fee deducted from your salary? How does it work?
Mom to Branae, my heart child born July 8, 2005. tga, arterial switch at 10days old.
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Postby Colette » Sat Nov 18, 2006 5:32 pm

Hiya

My Son is now 12 and had TGA and had the Arterial Switch operation at 3 days old. He has other defects too, but as far as I can tell his TGA reapair has not given him any problems at all. Most of his Breathing troubles etc are to do with his other defects.

Colette xx
Colette- Mum to Simon aged 12. TGA, VSD, COA and hypoplastic arch, MVP, Aortic incompetence. Abby aged 4 and Rachel aged 2.
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Postby debware87 » Thu Nov 23, 2006 8:21 pm

HI there

is Debbie here, Charlie's mum,

As far as I can tell the arterial switch seems to be pretty good for us, Charlie was 5 weeks old when he has his done and is now 11 years old, 12 in Feb, ok he has trouble at school leaning wise. and PE (physical Education) he finds a challange but heart wise appart from a leaky aortic valve and a heart murmur still he is doing fine,,
Love Debbie
Mum to Charlie 14 years old TGA with VSD corrected at 6.5 weeks of age.at GOSH, also mum to Josh soon to be 3 years and healthy
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Postby Lucy GOSH » Fri Jan 05, 2007 10:58 am

Hiya, I'm now 19 and had the switch operation at eight days old. I'm very lucky in that I have generally very good health, although I do get palpitations sometimes and I have a mild murmur and a slightly leaky valve (neither of which in themselves ever bother me day to day).

Personally, my condition affects me most emotionally rather than physically, as sometimes I'm a bit self conscious of my (quite spectacular) scar. But normally it doesn't really bother me and I lead a very normal life. The only other irritations are the annual checkups and the need for antibiotic cover, but I'd rather that than not be here at all!

I've been told that as far they're aware, there are very few known side-effects of the switch operation, although of course they haven't been doing it all that long. My murmur is caused by a slight narrowing of the artery (pulmonary stenosis) when they 'sewed' the arteries back together, but other than the operation seems pretty great all round.
Transposition of the Great Arteries
Switch Operation 1987 Great Ormond Street
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Postby julianmartin » Thu Feb 01, 2007 12:19 am

Heya, thought I'd put a word in,

I'm 19, had TGA but had one of the last senning operations rather than the switch. Generally I've not had any massive problems. Have the typical shortness of breath under strenuous activity. Although saying that i've worked in a few physical jobs, laboured at a garden centre, lifting plenty of heavy things, and got on as well as anyone really. Only problem i've had is serious palpitations due to faulty sino-atrial node, that was due to scar tissue from my operation, and the result is i've had a pacemaker put in, but I guess that won't happen in your childs situation. Now i'm on a capillary opener called enapril maleate just as a precaution...apart from that i'd say i've been pretty trouble free...so i guess you certainly shouldn't have anymore trouble than i have!!

good luck for the future.

edit: sorry forgot to mention about insurance.

well my family has private medical insurance, they always excluded heart problems for me up until i was about 12 years old, when the renewal letter came in and my heart issue just disappeared off the list, either someone made an error at the insurance company or because i've been problem free for so long they no long worry i don't know...but for sure, initially, all insurance companys had a problem with covering my heart problems.

car insurance hasn't been a problem, admitadly i haven't declared it to any of my insurers so far, but i think by law, there is no reason why they should change anything because of it.
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Postby rowbo88 » Thu Nov 01, 2007 1:57 pm

Just as what Julian said above me. I am 21 with TGA living in Australia (so bloody hot). However I never had the switch operation done I had the Mustard procedure for some reason.

The only problem I experienced is travel insurance. They just won't give it to me because I am classed as a high risk. I can drive a car fine as well.

However, my shortness of breathe is really bad. Esspecially in the heat. My doctor said it is heat related not really the heart. It is so hot here where I live (well it is not really the heat it is the humidity) that sport is out of the question for me. For example last week on Thursday, went out with mates. Outside it was 30 degrees celsius with 90% humidity. I couldn't even make it down the stairs. The humidity really takes its toll on the heart that is already struggling with the extra pressure.

But other than that life is pretty good in winter time.

Rowbo88
Heartkids QLD
TGA, 20mg lisinopril, 9.25mg carvidilol, lasix, 3rd pacemaker, stent, mild CHF, Mustards procedure 1987.
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Postby Tiny Tim » Thu Nov 01, 2007 7:59 pm

Hello there,

Ooo where to start... I underwent a mustard for TGA at the age of 18 months - im now 26, happily married and have a healthy 8 week old son, so as far as 'quality of life' goes, I certainly cannot complain!

Growing up with a heart condition was weird for me... my personality is quite stubborn, and I think my parents had a hard time with me wanting to be a 'normal' boy. Mind you, It sunk in at an early age that I couldnt do most of what my friends did sport-wise etc.

These days I work as a test analyst (computer software tester) so sit at a desk day-in, day-out and dont have to worry about over doing it.


The only advice I would give is for your daughter to realise that she IS the same as her friends, but that she just has limits... as everyone does. She needs to know these limits and be aware of them.

In the same way, as her mother, you need to realise that she just wants to be just like her frineds and give her that freedom as difficult as it wll be - something I think my parents found hard to do.


Either way, its life... enjoy it.
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