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
Hi Sophia Lauren,
ReplyDeleteI hope you've been well and just to let you know on Facebook, there are many HLHS/HRHS and CHD communities of people who are in their 30's and 40's.
I, for example, am a 34 year old HLHS female living in Boston, Massachusetts.
My question to you is, have your medical team talked to you about future issues with your liver?
Take care,
Annie