We ran into a friend in the Bay yesterday who is here for the week. He used to live here full-time, but his wife died young 7 years ago and he is now remarried and living in the States. He misses it and said with all the money and choices of places to live there has been no where as great as this island. He was so happy for us and our move and congratulated us on the decision. We have known him 25 years and he was a good friend of Papa. He has followed along on E’s illness from the beginning and has always been interested and supportive as E has progressed back to good health.
Twelve years ago we were visiting Papa and E was working hard putting the new stairs in at the front of the property.
He had played winter hockey in a beer league and had just signed up to play in a summer league. He was the picture of health, 43 years old. He never smoked, was a social drinker who took the stairs instead of the elevator at work and walked for an hour at lunch every day.
Then on July 7th 1999, he called me from work. He had to turn back from his walk at lunch as he was out of breath. He came home and went to bed. I got out the medical dictionary trying to figure out what it was and the only thing I could come up with was what my Mom would always say.. “You just need a BM and then you will be fine”
The next morning, he said he wasnt up to going to work and thought he should stop in to see Ron (our Doctor).. no rush though, let’s have our coffee first. As we had been at the island the week previous our lawn needed cutting.. we tossed around if he should cut the lawn before the Doctor too… Ron suggested he go to the ER and have a x-ray. We tossed around if he should cut the lawn before the x-ray or just go and get it over with.. Emerg is always so busy.. it is going to waste our whole day sitting there..
I tell you all the mundane details because it is important for you to realize what frame of mind we were in as E drove around town from Doctor to Hospital, deciding on how were going to spend the rest of the day… to put it mildly… we were not concerned that E was short of breath.. He looked fine.
At the hospital they took him for a x-ray… Almost immediately there was chaos.. The nurse came and put her arm around me.. She was crying and told me not to worry.. ( I was very confused).. They said it looks like he is having a heart attack and they had called an ambulance to take him to the big hospital downtown. My girlfriend drove me down separately and we walked into him laying in CCU intensive care.. attached to all the bells and whistles normally seen on tv.
Two days, and hundreds of tests later a team of Doctors diagnosed him with a rare heart disease normally diagnosed at autopsy. At that time there were only 63 cases on record. Giant Cell Myocarditis is an auto immune disease where the body rejects its own heart as a foreign body and destroys it. http://en.wikipedia.org/wiki/Idiopathic_giant-cell_myocarditis
They had never seen one in western Canada and really had no definitive treatment except they did know he was going to have to have a heart transplant…. When they told me this, I asked how long I should tell his boss he is going to be off work… (I really was clueless about what was going on) .. Shock I guess or just a pragmatic way of coping by dealing with the details ….
The treatment his Doctors decided on saved his life, he made it til a heart was available in March. Their treatment is now the standard protocol for this disease and there have been papers written about the “otherwise healthy 43-year-old male”.
I will write later about the organ donation and the gift of life he received and which we are truly grateful but not today.
When he was transplanted the Doctors told me that the half-life of heart transplants is 10 years… so 50% make it ten years…. but E’s whole attitude from the very beginning was that he was going to make it to transplant and outlive us all. He is a positive person who never did worry about life and that didn’t change when his heart was failing.. In the back of my mind I had this ten-year frame of reference for everything we did.. but at ten years he was doing better than ever. At the eleven year anniversary meeting with his Doctors they told us that there is no reason to expect E to have any less than a normal life expectancy. His heart is excellent and any problems now would be as a result of the long-term medications.. Diabetes, kidney disease and skin cancer are the risks.. He has to stay out of the sun, eat properly and have regular blood work taken to monitor those risks.. I uploaded my journal for the kids and family to read on his 11th anniversary if you would like to read it look under Gift of Life at the top.
And so we are and its through the anonymous gift of life that twelve years later we are living in paradise.
This morning I woke up to E in the kitchen making coffee singing
Don’t worry, be happy….