Learning to deal with my condition

[Amyxlouiseex]

I’m struggling to deal with my condition I’ve had since birth😢 anyone up for a chat let me know!

[sturon]

Happy to offer any support I can.

Regards Ron.

[Midgeymoo17]

Been in your position done that. TOF repair 1997 and Valve replacement 2017. Trust me it settles down. I would’ve happy to chat about it a bit more once my uni exams are over.

[Amyxlouiseex in reply to Midgeymoo17]

How old was you when you had your valve repair? they told me in 2016 that I’ll be having the OP in April then sent me a letter saying that they’re not going to do it yet. I’m 18 now, haven’t seen a cardiologist for 3 years because they keep transferring me to different hospitals. My chest pains are worse, GP says it’s because I’m unhealthy but I’ve had the pains for years and I know there’s something more to them. I’ve started having frequent palpitations over the past year. Nobody seems to be getting me in anywhere for a check up. Things could be worse than before I could have needed my OP years ago🤷🏼‍♀️

[Midgeymoo17 in reply to Amyxlouiseex]

I am going to PM you.

[mikeydt]

happy to chat here wasn't born really with any problems but as years progressed things changed.

i have catheter in and that was a steep learning curve now been using them for 10 years. like any medical condition they do come with problems and it is a case of battling through it.

now rolling on i have been in hospital for nearly a month and due to complications it is a case of learning all over again, not sure if age is making it harder but am a fighter.

i have had very little help but that is now coming in to place the only trouble is they cannot be with me 24 hours and it is sods law that things go wrong when they are not here, most of the time i can smile then other times i just feel like going to bed and hoping it will go away, then i awake and ready for the new battles.

in hospital i suffered from cardio problems and i also have mild cad along with heart disease still i won't let it control me.

let us all know what is wrong then we can some how offer advice and support even though we are not there in person.

hugs,

mike