Hi! I dont quite know why it has took mw so long considering i love writing but better late than never.
I have created this blog for Parents of or girls, guys living with HLHS (hypo plastic left heart syndrome). As it stands i think as far i know i am one of the oldest with HLHS. i would love to help with advice or support.
A little but about me i think that would probably help. haha.
Im from England. North East originally but recently moved to Windsor after graduating from university studying Fashion Product and Promotion. I start my new job Monday! I am SO excited. I will be working in PR for Exposure 360. Hopefully i will be the new Juinior account exectutive for beauty food and well being. :) ) (so thats right now and very short and sweet)
I was born with HLHS. I turn 24 in March. Here are the procedures i have had for those parents or HLHS Friends.
My full diagnosis is HLHS.
* Mitral atresia
* Transpositon of the great arteries
* Aquired pulmonary atresia
Procedures.
* Blalock Hanlon septectomy and central shunt 07.89 (4 months old)
* Left modified Blalock taussig shunt. 09.90 (18 month)
* Bi0directional glen shunt 09.92 (3 years old)
* Total cavoplmonary connection 07.96 ( 7 years old)
* Trans - catheter occlusion of fenestration 06.97 (8 years old)
* Resection of sub- aortic stenosis 07.00 (11 years old)
So my last open heart surgery i was 11. Since then i have been fine. In my particular case my SATS are 82 - 86 currently and i have a slight murmur. To me thats normal. I feel fine. I cant run for long but i can still run i exercise regularly i think thats very imprortant. Even if its yoga! which i also love! I have done everything from Thai boxing to ice- skating as i child i was your typical Tom boy. I soon grew out of that i began to be obsessed with Fashion! OOOOBBBSEEESSSED. Still am. I cant keep out of Zara and i constantly have a Fashion magazine in my hand. I was pretty poorly growing up my lips were always blue and although it didnt stop me from doing whatever i wanted to do and i had a very very happ childhood. At times i did struggle to keep up some HLHS do some dont each case is very unique. The only thing that did was made me more eager. I have lived and continue to live my life as any other 23 year old. Some people would probably say that i have been through alot and it must of been so hard. For me i dont remember so much just hospital in general, gettiing better each time. It was hard for my Mam and family ! i have a very special Mother and am more than blessed to have her.
The way i look at it is i look a life in a totally different light to your "normal person" I feel very lucky to be here and to be still here after my mam being told the worst when i stopped breathing at 18 month. I am sat here now writing this to Parents of children and HLHS patients themselves and i am healthy, happy and very blessed.
Please if anyone has any questions at all i would be more than happy to help. i will be bringing updates on me my little ticker and living life WITH HLHS.
Lots of love!
Sophia
