For a class project, I've started a blog titled "Medical Inheritance." The intention is to share my experiences as I learn to navigate the adult medical system, stories from day to day experiences, and tip & tricks for dealing (for lack of a better word) with my conditions.

I also hope to connect with other young adults in the same boat as I who would like to contribute to the blog. Share their stories, their tips & tricks, and create a bit of an information archive for people to look through.

I want this thing to last far longer than this semester or school year.

My reply on Looking for Others. I thought it was a good explination of what I've gone through so I figured why not repost it here?

----------------------------------------------------

My hernia was repaired when I was an hour or so old. I have a gortex patch, and part of my stomach was used to create the non-existent sphincter. Because of the CDH, I was born with severe scoliosis and 1.5 lungs. In eleventh grade I had reconstructive back surgery in NYC, but not after the scoliosis has wreaked havoc on my "good" lung (the upper curve was pressing into my lung, and my spinning rib cage was twisting it around). All my life I've suffered with shortness of breath. In 8th grade I was put on 24/7 oxygen (it went away after my surgery in 11th grade). In 9th grade I was diagnosed with Carbon Dioxide Retention, (the doctor estimated it had been going on for almost 7 years) - apparently I breath so shallow when I sleep that I hold in the carbon dioxide that my body produces. Now I sleep on a non-invasive ventilator. Though I am able to go about my life without oxygen, I do know that part of it is because of my light weight (my body refuses to gain weight over 84 lbs), and as it is I know I push myself.

I'm a survivor!

I'm a 21 (soon to be 22) year old survivor of Congenital Diaphragmatic Hernia. I've had my health issues that have stemmed from it, but with the help of my family and friends, and of course my amazing doctors, I've gotten through it all. I have a bit of a morbid sense of humor, but its a sense of humor that had helped me cope with everything.

In high school I was active on a Patient Advisory Board at my local Children's Hospital, and through that board positive changes have been made to help with the stay of both patients and loved ones.

Right now I'm in college for web design, and manage many media-related things at my church. I have an amazing boyfriend of almost two years and its in part because of him that I am here. I'm trying to connect with other womon survivors who have children of their own, and ask them questions, such as "What were the risks involved?"

I really enjoy meeting new people :D