Jamie’s JourneyMy story begins on December 30th, 1986. That’s the day I was born. But shortly after that day, my mother noticed something was wrong with me. I was having trouble gaining weight and I had a bad cough. After a while of worrying, my mom finally decided to take me to the hospital. After long days of testing, we met Dr. Vaze who told my mother I had a life threatening illness called Cystic Fibrosis. My mother panicked as there was little to know about CF back then other than the fact that children born with it do not usually see their first day of kindergarten. However, determined to make sure I had the best quality of life with this disease she listened as doctors told her what would be needed and required if I was to get the most out of life.
Cystic Fibrosis is a disease that affects the lungs and digestive system, but does impact the entire body. Our lungs lack the ability to rid itself of thick mucus that develops at a much rapid rate than a normal person, which of course leads to make infections and respiratory complications. And we are pancreas insufficient, meaning we need to take up words of 50 pills a day to make sure our food is properly digested in our bodies. We also need to do daily physio therapy to clear our lungs of the thick flem that haunts us and could one day rob us of our life. A very good exercise program is also essential and making sure we get adequate nutrients is so important, as our digestive system, even with help, only absorbs a fraction of what a normal person would obtain from eating. The life expectancy when I was born for someone living with CF was only 12 years old. I am happy to tell you that today the average has increased, with much scientific research and support from the CF community to 47!
Over the years, my mother did most of the caregiving needed to take care of my illness. Never alone, she was by my side through some pretty dark days. And dark days there were. I was generally healthy for most of my childhood. The earliest recollection of being in the hospital was about 7 or 8 years old. However, as time passed more hospitalizations were needed to clear my lungs of that thick mucus that made it quite difficult to breathe.
In my teens, I went through a faze where I didn’t take care of myself. I was very angry at God, whoever he may be, and at the world. I wondered why I had to be the one to suffer and not someone else. What was the plan for me and how was this ever going to be a good thing? I spent a lot of time angry and unfortunately took it out on the ones I love. But mostly myself, because I did not do what was required to keep my body in tip top shape. I wonder to this day how much damage was done during that time, something I can’t change now, though somehow I wish I could.
Cystic Fibrosis is a progressive disease that gets worse the longer you live. One 1 out of every 2 people living with CF will survive to see their 25th birthday. I reached that milestone this past December. I still have to pinch myself some days and I am filled with such gratitude and a fresh perspective, which I’ll discuss a little later. But I almost lost my battle this past spring.
I was admitted to hospital on February 6th, 2012. My lungs were failing, I had lost a lot of weight and I just wasn’t feeling like myself. It took over a month as my body got increasingly weak to figure out just what was wrong with me. I was growing a strange bug in my lungs called a Non-Tuberculant Micro Bacteria (NTM) which ironically has nothing to do with Cystic Fibrosis, but for someone with CF to get an NTM, it’s very serious. I was so sick that a lot of my family from across Canada and the U.S., were preparing to come home to be with each other for support. The Doctors were getting frustrated as my condition was getting critical and nothing seemed to be working- until the unexpected happened.
They switched a drug and the fevers I was having almost immediately stopped. Slowly, I regained my appetite. It took time but I was able to walk again without the use of oxygen. And through all this, my attitude and outlook on life was changing.
I was finally released over two months later on April 16th. However, I am not out of the clear yet. The type of bug that is growing in my lungs is very stubborn and requires a lot of medication to keep under control. I will be on oral anti-biotics for the next year and they have a long list of side effects that I am just oh so thrilled about! Preparation has begun for me to receive a double lung transplant in the near future in Toronto, as my lungs will soon give out from all the damage over the years caused by infections and of course this latest bug that is causing havoc on my body.
People ask me all the time, “How do you do it? How do you have such a positive attitude and outlook on life when you can’t even work? Where do you get your strength?” I tell them, I do it because I have to do it. I have to fight for everyone else who had CF that didn’t get the chance to fight. I do it because I love life and I don’t intend to give up until the doctors tell me that giving up is the only option I have. I do it because despite my everyday struggle with this disease, I am a blessed person and I am filled with so much gratitude for what I DO have and don’t worry about what I DON’T.
I have a positive attitude because no man has ever survived with a negative one. And life is too short to spend my days wallowing in self-pity and despair. I believe that when you have gotten so close to death as often as I have you truly get a sense of what’s important in life. What really matters.
And I get my strength from writing. I have an online blog that I write on often and share my story with the world. I get my strength from knowing that while my suffering may cause me some anguish, my story is giving someone out there hope. And I realize throughout my days that someone always has it worse than I do. I also draw strength from my partner and my loving friends and family with whom I surround myself with. I do not give heed to any negative people or influences in my life.
My message that I try to send people is one of hope. Maintaining a positive attitude is not always easy, but I personally believe that it has saved my life. When I was in the hospital, and things were looking pretty grim, I never once felt defeated. I always knew and believed deep down in my gut that I was going to be ok. And I know now that as this journey of mine continues, I will survive and when I get my new lungs I will honor my donor and their families by making each day count and do something really special with the second chance at life I have been given.
Life is a gift and I do not intend on wasting it. So please, make each day count, for you never know when it will be your last.
PLEASE BE AN ORGAN DONOR
YOU CAN FOLLOW MY JOURNEY AT www.jamiesjourneycanada.blogspot.ca
