When I was almost eight years old, I was diagnosed with diabetes. Not much was known about the disease back then, but my father was a rule follower and believed in making the best of any situation! You see, five months before my diagnosis, my mother had died of cancer. My disease was controllable. There was no hope back then for a cancer patient. People thought I was just acting out due to our loss. Blurry vision, extreme thirst and excessive urination were not known indicators for diabetes. Eventually, I went into a coma and became insulin dependent. We used glass syringes! We tested urine sugars. We weighed and measured every bit of food I consumed. If I was hungry. I was not allowed more. If I wasn't hungry, I wasn't allowed less. My fathers discipline is still within me and probably saved my life.
Through trial and error, I learned what my body needed. When you're eight years old, you really don't want to stop riding your bike or playing kickball to have a snack at a certain time. After too many trips to the hospital, I figured out I needed those snacks! When I would awaken from those low blood sugars, my fathers concerned and relieved look made me cry. I felt as thought I'd disappointed him! That was the last thing I wanted to do to him.
So, I made it through grammar school. I did okay through high school, still labeled as different. Small miracles in modern medicine were improving my life, so college was great. It was easy to manage with the maturity and responsibility the disease had given me.
I am a workaholic and enjoy being depended upon. But my health comes first. In my mid thirties, I was not feeling well. It seemed like a gradual decline where I couldn't keep up with my own expectations. When I explained this to various doctors, I showed them a journal that I have always kept with my blood sugar levels, amount of insulin dosages, other meds and more information. A simple exam did not show anything. When I explained how exhausted I felt, it was suggested that I not work so much. I'd been working like that forever. Why was it affecting me this way?
I'm a short night sleeper. Five and six hours is typically enough. One of my major complaints was that I was still tired after sleeping more than ten hours. I would get up, shower......convinced that each day had to be better than the day before......get dressed. When I sat down to put my socks and shoes on, I'd fall back to sleep......for 2-3 more hours! After several different tests, it was determined that my kidneys were failing, a prognosis I'd probably never heard from so many years ago.
Dialysis started with a port in my chest. A fistula was put in place in my left wrist, but needed to mature. Dialysis was three days a week, four hours each session. It was like a part time job! At the same time I started dialysis, I was listed as needing a kidney. My brothers, other family members and several friends tried to be living donors, but ideal matches are difficult. It's a terrible thing to wait for someone to die. And I had accepted that my time remaining was precious.
Almost two years of dialysis passed. I received a telephone call from Hartford Hospital....."get here now"! After hundreds of questions, tests, iv's and a long wait, the surgeon came to my hospital room and said he was sorry to report that the kidney had not been healthy enough to transplant. Bummer!!
A few weeks later, the transplant unit called to ask if I'd be interested in meeting a pancreas transplant specialist. First, I didn't know a pancreas could be transplanted. Second, I was feeling pretty low. My Dad was no longer here to encourage me. He had remarried and my (step) mother, another gift in my life, supported my decision to meet with the doctor. A few weeks later, the hospital called again. Oh boy! Same routine.....questions, iv's, anticipation! Several hours later, I became a kidney/pancreas transplant recipient through the generosity of a young man who had registered as an organ donor! Not a day goes by that I don't thank him for the gift of life. I enjoy the aches and pains involved with shoveling snow and working in my vegetable garden because I am healthier than ever imagined! So many years ago, the idea of living past fifty was questionable for me. I am more than fifty now and have never felt healthier in my life!
Why am I still here is a question I deal with as I suffer with survivor guilt. Most of my time is spent dispelling myths about organ, eye and tissue donation. Much of what I discuss is information I had no knowledge of before this experience. Apparently my gift of gab has found a partner through the gift of life.
My father was my rock! He was honest, hardworking and the walking definition of love. He didn't preach "love one another". He lived it! He was loved and respected. I remember when he said that there's always someone worse off than us. That stuck with me! And he was right! I've seen it, up close and personal. Any time I've ever been sick, something happens to remind me how fortunate I've been. Three parents :) and three brothers who love me. Extra chances to be alive. I've been sick. Others have been sicker. Some actually died. Maybe they didn't follow the rules I was taught. That teaching was evidence of love from my Dad.
So many people that I've met through my diseases have the strong attitude like me. This won't beat me. I'm not scared. When it's time, we have no control. But while we're here, we are going to make difference!