About Me

Tuesday, February 28, 2012

CDH: My Story

As much as I will be writing about my journey through the process of writing and publishing, I thought I would let everyone in on who I am--the author--and some of the non-writing struggles I contend with everyday.

I was born with CDH.

"What's CDH?" you ask? Well, it's Congenital Diaphragmatic Hernia. Doesn't sound too scary, does it? If you check out the CHERUBS website, you will see it is scary. I'll give you the run down of my story.

When I was born, it was quickly discovered that my diaphragm did not form properly and my intestines, spleen, and stomach moved into my chest, preventing my heart and lungs from forming properly. Sadly, being born in the late 80s meant there was no prenatal testing (actually, my mom has an article about the brand new testing for my condition that had recently came out...six months after I was born) so no one knew just how sick I was.

CDH is found 1 in 2,500 births and has a mortality rate hovering around 50%--somewhere between 40-60%. When I was born, I was given a less than 40% of living. I was tiny and born in a hospital that had been open for two weeks. Thankfully, I was born in California and was quickly taken to one of the best children's hospitals in the state.

Miraculously, I survived the five hours between my birth and my surgery. I'm fairly certain I shouldn't have.

Over the next fourteen years, nothing too interesting happened. I had severe asthma all my life because of my CDH and problems with my stomach. I was bullied--by teachers!--about my asthma. I do not have the curable form. The one kids grow out of. My asthma has made me critically disabled, to the point I can't even hold down a normal desk job because it is so unpredictable. One laughing fit, a waft of perfume, even an acid reflex attack can, and will, send me to the hospital. There have been more times than I can count where I have gone to the hospital for as asthma attack and nearly died. Twenty children and five hundred adults will die this year from asthma in Canada, 5,000 in the US, and 180,000 worldwide. Too many people for a very preventable disease.

When I was fourteen, I suddenly had trouble swallowing food. Food would get stuck in my esphogus (not near my trachea, so I wasn't choking, I could still breath) and I would be forced to throw it up. Many people, including family members, believed I was bulimic. Why else would a teenage girl throw up? Even though my mom insisted something was wrong with me, no one believed us, until that day.

I was nineteen and it was several days before Christmas. My mom had brought home some fast food for dinner and I started eating. Then, my food got stuck. By now, this was a normal occurrence for me, so I simply walked to my bathroom, leaned over the sink, and tried to dislodge the food matter. I put so much force into it, I threw up. Only, it wasn't vomit--it was bright red blood.

My mom rushed me to the hospital. Thankfully, we lived close by. I was in incredible pain. It was like someone stabbing you with a hot, sharpe knife over and over in your back. Sometimes dragging it, some times not. I had an endoscopy the next day (that's where they stick a tube down your throat) and my gastroenterologist (RIP) said I was lucky to be alive. My esophagus has ulcers that were dangerously close to perforating, which more than likely would have killed me.

...This does explain why I grew up with cats.

I digress. I was put on the fast track for surgery until my gastroenterologist tragically passed away. Afterwards, my recovery stalled for a year to year-and-a-half. It wasn't until I was referred to Dr. Findley at VGH my hope for a normal life finally started to grow.

After a CAT scan, I discovered my stomach had herniated into my diaphragm again, which was the root cause for my life long acid reflex. Also, my left kidney was badly damaged, my stomach was turned the wrong way, my intestines were looped the wrong way, and my pancreas is underdeveloped. My mom's theory of my surgeon being drunk was starting to hold water (if you even get to see my scar, you would know where that joke came from). Did I also mention my surgeon didn't understand how I was able to live a relatively normal life?

A year of doctor visits, hospital visits, deteriorating health, bouts of anemia, and being forced to drop school, I finally got it: my surgery date.

It happened about ten days before my 22nd birthday. I drove with my mother and sister to VGH at a stupid hour for my surgery. I got stabbed repeatedly with needles and got my first epidural. I can see why pregnant women love them. I can't even remember it and I didn't even have labor pains!

I was out for nearly twenty-four hours after my surgery. I don't remember anything. I vaguely remember my doctor coming in to explain the surgery, but I can't even tell you what he said. Morphine rocks.

It wasn't until the next day I got the awful news. From my loving boyfriend of seven years.

My surgery was a utter failure. Three of my organs, my stomach, liver, and spleen, were all completely fused together. The scar tissue from my childhood surgery had fused them, and because no one one went back to clean it up, they had grown arteries and veins in between them, making them impossible to separate. They tried, but I started to bleed out and they shut down the entire operation.

My dreams were crushed. My hope for a normal life was gone. My surgeon said I was only one of three patients he couldn't fix in his career. Which is no small feat. He is one of the top thoracic surgeons in the province. Head of the Throatic Surgery department at UBC. He has done a lot of surgeries.

As far as surgery, I am unoperatable.

Now, it's been six months since my surgery. The only thing that has changed is that now I know just how sick I truly am. I have applied for disability--twice--and was denied. Yeah, I'll win that one, even if I have to chop off my left arm to do it.

Now, I have been formally diagnosised with the most severe and deadly form of asthma, GERD (Gastro-Esophagial Reflex Disease), hiatal hernia, anemia, anxiety, and depression.

The reason I managed to survive the last twenty-two years was because of my winning personality, my awesome snarly humor, the love of my family, and because I have been a fighter since the day I was born. Also know who else helped? My novel.

If anyone ever wonders why I am so attached to it, this is why. While my life was crumbling around me, I still had my book and my characters. It was my one shining accomplishment in my life when everything else failed. Even if I failed at everything else, at least I could say I wrote a god damn novel. Not book. NOVEL.

So, that's my story. Krysten Hill's story. One of my dreams (other than getting freaking published) is to meet up with teachers, nay, PHYSICAL EDUCATION teachers and coaches and tell them my story. Remember when I said I was bullied by teachers? It was P.E teachers who didn't understand asthma. One teacher nearly killed me twice. I'm not exaggerating.

Not every kid with asthma has it under control. Not every one need a quick puff of their medicine before they are okay. Some are like me, where no amount exercise will help them get better but even a little amount will kill them. Take every case individually. Never generalize asthma. I was generalized and I almost cost me my life. You wouldn't generalize someone with epilepsy, now would you?

Now, one of my other dreams is to meet a family who has a newborn or a young child who was born with CDH and survived. CDH leads to numerous complications. What I wish to tell them is this:

"I was born with CDH and I incurred every single complication a survivor could imagine getting. I am possibly the worst situation that could happen, short of dying at birth. I have lived with not one, but two severely misunderstood diseases and every imaginable medical and social consequence to that. Yet, on August 28, I will be turning twenty three years old. I probably shouldn't be here, but I am. I am a fighter. I always have been and I always will be."

Now, this might not be the most coherent post (it's 4:30am) but I feel it is important that I tell my personal story. It not only shapes my reasonings behind trying to get published, but also why I am such a stubborn ass on how I'm going to do it. I have always expected the best for myself. If I didn't, I wouldn't be here. I also hope I inspire even one person with my little tale. I could probably die happy knowing that.

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