Alcapa

[Rebecca45]

I have open heart surgery for Alcapa . Im 18yrs old and found out i had this in february 27th 2018 and had open heart surgery on the 1st of march 2018

[MichaelJH Heart Star]

Welcome to the forum! I know very little about this but thought it was usually treated in the first five years. How's your recovery going as OHS is definitely heavy duty.

[Rebecca45 in reply to MichaelJH]

Have had a icd fitted as i have alcapa and heart failure .

[Alice_Ro]

I hope you are recovering well Rebecca and that you have lots of love and support around you xx

[Alice_Ro]

Hi MiniMe. I hope your recovery is going well too. Are you by any chance the same person I connected with on the SCA facebook page about a CPR petition?

I'm very happy that you have found someone in a such a similar situation to you and hope you can support each other through shared experiences.

I am 29 and am still undergoing investigation for the cause of my cardiac arrests. I also have the ICD fitted, which has already fired to save my life once. Such amazing inventions!

The BHF has tailored support for young people with Congenital Heart Diseases that you may want to look into.

Good luck to you both xx

[Alice_Ro]

Glad you know what I meant about feeling like a baby- thought that might come off wrong! X

[Rebecca45]

Hi its happened so fast and people keep saying we have to keep everything normal . But how can we . He was going to join the army , get a tattoo .he cant be a normal 18 yr x my heart is breaking for him . To see what hes been and going through x

[Melanie76]

Hi my daughter Kelly is having Open heart surgery In three weeks She has hole in the heart She is 17 and special-needs I am scared how much pain she will be in I’m her mum

[Rebecca45]

My son was in icu for a week and he cant remeber much . Then he was given morphine and other pain relieve . We are from northampton and his op was in Newcastle so we had no family to support us . We did complain several times when he was in a normal ward that he was in pain and he was given pain relieve .

[Rebecca45]

He was in alot if pain to start of with or when he laughed or caughed . Each person is different . I am thinking of you and your family . No matter how old your children are they are still your baby . And it breaks your heart seeing them in pain