18 - A year later - Still no Answers..

[cheskalane]

Hey everyone ,

So , i turned 18 ten days ago now , his means that its been over a year since i found out about my open heat surgery being needed - I was told that while not urgent , considering the rareity of my condition they do want to do it in the next year or two. This , on it's own was a huge shock but being told the rarity of my condition made it worse . I was sent away with little to no information and no follow up appointments booked , feeling very much in the dark about everything . living with an anxiety disorder as well - this , of course , didn't help. Taking everything into consideration - a few months later i decided i wanted to postpone my surgery for a year so that i could do a one year uni course. i contatcted my cardiologist who in essence said that while she thinks this would be fine she would have to contact my professor. so after 3 attempts of contacting and no answer from him.. im having to carry on as this is fine to leave it . however , he could , at any point , turn back - and tell me that i do need it this year, thus causing me to cancel plans ive made aswell . I'm also not sure what they actually want to operate on - and or what the risks are due to my condition being rare , But i will keep fighting for information and in the meanwhile educate myself as best i can.

Love , Cheska xx

[Happiness29]

My child has a rare heart condition as well. Think it’s frustrating as like you say it is very much a feeling of being in the dark about everything.

Fingers crossed you hear back soon and can continue studies. Good luck with that and you surgery.

I would also keep pushing for an answer to timescales and more information on your condition.

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