The medical condition that I have; is a life-threatening one and it is also super rare. There are only approximately 1200 cases reported worldwide. Since there are so few of us, the ones that are older and are lucky enough to still be alive, and have access to facebook know each other. We don’t all know each other super well, but we all know of each other and care. As a result of our condition being so deadly, we are always waiting for the moment that we get the news that one of our friends, our close friend, is dead or dying. Today I got that phone call.

People with CCHS sort of play jump rope with the line between life and death. We quit breathing in our sleep and won’t wake up when we stop, with the right intervention we can be kept breathing when we fail to send the signal to breathe ourselves. In the past year, we lost so many, 4 all in one month. One was a 28-year-old single mom, another a 25-year-old nurse, one was a two-year-old baby, another was a teenage girl. I know they say that death is a part of life, but it still sucks. I doubt that I will ever get used to having people I care about dying. Even though my closest friends and myself live so close to the line between life and death.

My friend had surgery three days ago to improve her quality of life by inserting a pacemaker to zap her nerve that controls her diaphragm, so she would breathe without the use of a big machine such as a ventilator to breathe for her. She texted me around 11 pm to tell me that she hadn’t been feeling well since the surgery and she now had a fever. Once she told me how high the fever was I told her to get her butt to the ER as fast as she could.

She had a post op infection that was spreading, but we didn’t know how bad it was for another hour. She went to the ER luckily, because when she got there her heart stopped, luckily they got her back, but her heart now has more damage than it already had. People who have CCHS often have heart problems as well.

Her aunt sent me a text from my friends phone around midnight saying who she was and her name. I knew she was at the hospital so I knew something was up, she told me that her heart had stopped and the infection had spread. Due to the distance between us, we were talking via facebook messenger, so there was a slight delay when I was trying to get information.

She is still alive, but she is in critical condition, but luckily the antibiotics have started working. So now it’s a waiting game.

It’s hard to get used to thinking that your friend is going to die at any moment. I don’t think I’ll ever get used to it.