Alcapa

[Rebecca45]

My son has a heart defect and heart faliure (alcapa) he had open heart surgery in march . He is 18 years old

[gal4God]

He needs ur support especially at 18.

[Rebecca45 in reply to gal4God]

I keep crying but not in front of him . I hear him cry in the bathroom . We do talk about it . His consultan has been fantastic but our doctor have not been supportive

[gal4God in reply to Rebecca45]

He will stuggle wiv it.

[Rebecca45 in reply to gal4God]

He wanted a tattoo but told he should not because of the risk to his heart . Hes scar worries him . You can see him looking at himself with watery eyes

[gal4God in reply to Rebecca45]

I hate my scar and use makeup.

[Rebecca45 in reply to gal4God]

They say it will fade but it could take yrs

[gal4God in reply to Rebecca45]

Even wen it fades Ppl still notice it but I find it a good reminder sometimes and have a time in my room looking at it alone but everyone is different.

[Rebecca45 in reply to gal4God]

I see him doing the same when he is in the garden .

[Midgeymoo17]

Rebecca it is not easy....

I had my second Open Heart Surgery in 2017 age only 20. A year later scar is visible and people do notice but rarely. Truthfully though I live with a colostomy bag so for me embarrassment scar appearance was relatively slim by comparison. If he is really worried about covering up his scar I recommend this:

changingfaces.org.uk/skin-c...

The make-up is expensive and often not available on prescription but it is very good and you are shown exactly how to apply it.

This may sound an odd suggestion, but if he is ready at any point and finances allow- take a trip to a German Speaking Country and visit an FKK- Bereich. This was a very challenging experience for me but it was eye opening to the way we as a society influence each other. Germany by contrast to the Uk has a much more liberal and accepting approach to body image. A former Au-Pair of mine took me- and in these areas one must be totally nude. From a British Standpoint with a colostomy bag, I was horrified but I tried it. I did not see one person point at my bag the whole four hours we were at the beach. Nobody gave a damm. This would never happen in the UK but it did show me how much my view was altered by the society I live in.

I am assuming that by the age of your son that his final year at school was likely disrupted.again, I have some experience of this as I had complications of a heart medication in my final school year and had to repeat. The greatest challenges that came for me was watching all my friends move on to Uni, get on with the next chapter and feeling a little left behind as I repeated. Unfortunately, this does not go away. A number of my friends graduated this summer and I have two more years to go.

Try and move on from this quickly but with care. 8 weeks after surgery I returned to Uni and in hindsight it was too early and has just created a great pile of stress now one year on. If there is something your son wishes to do now- maybe let him do it. In hindsight both I and my parents wish I had taken this year out of Uni and travelled through Europe. Took time to chase my dream of being bilingual. Rather than go back as it just ended with PTSD and failing most the year. This mostly happened due to confidence crisis after my surgery- hence why we wish we had taken time out to explore my other interests before returning.

It is important to remind him at this time he lives with a heart condition, he is not his heart condition and that the his world revolves around him as a whole. Irrespective of limitations there are many things he can do and try- that h has not tried before. Before my surgery I swam competitively, this was taken away by my defect. Post- Surgery, I tried language learning. Weird substitution but I have not looked back. I love it, its healed the whole left by swimming. I still miss swimming- but I am happy and take great enjoyment from what I do now.

How long have you known about his defect? Or was the defect found after he went into heart failure?

[Rebecca45 in reply to Midgeymoo17]

We found out the day they were going to discharge him from hospital . Which was 2 weeks after they found he had heart failure xx