Thursday, April 29, 2010

Things I will miss or look forward to

Well I never thought this time will come in my life where I would have such a major health/life decision. But it has come as my cystic fibrosis has completely taken over and ate away at my lungs life. At first I was terrified and thought hell no I don't wanna go thru lung transplant it was an awful ordeal and for what at least an extra year to 5 of life. But as I researched and have talked to a few that have gone down the road it is common to live past their 5 year expectation. So I decided hell lets just go for it. I have a loving support of family and friends that will help me thru the tough times which I hope are as little as possible, but like they say you have to expect bumps in the road for the first year.
I tell you it will be nice to get back to life the way it was before being tethered to an o2 hose. it makes planning of events and such a pain in the ass cause you can only go or do for what ever long your tank will last you. And forget about crashing somewhere overnight. So far this year I had to cancel my week up north at the cottage where we had spread my dads ashes. That has to be the most disappointment so far. There is the little things I miss too for summer fun like riding the coasters at Canada's wonderland (local theme park for those that are reading that are not from Ontario). I wanted to get some camping in as well.
So after transplant I am gonna try and take sometime to myself and enjoy the new freedom before getting back into the workforce. Also depending on finances hopefully do a little traveling. Might even try to get back into skiing as I've already been asked by a friend that he wants me to come when I get my new lungs lol.
I'm sure there will be more that I will add to the list as it comes to me.

Well there we go blog #3 down. Boy I'm on such a roll lmao.

Sunday, April 25, 2010


Well its a lazy Sunday and wow blog #2. I am on such a roll lmao.
As I sit here going thru old pictures of friends and family I always pause of the ones of my dad. Like I had mentioned in my first blog that the passing of my dad was on of the hardest things I had to deal with in life.
My Dad was a great man. He would do anything he could to help you out even if he didn't know you all that well. Some people had looked at him as disabled cause of this left arm. Here is a bit of history.
When he was 15 years old he was big into playing football with his friends. He ran out the door of his house one morning across the road to play with his friends (with his mom yelling at him to get back into the house). As he ran into the park he caught the football and in return was tackled by a group of teens. he ended up on the bottom of the pile. When he got up he felt he had a stick poking out the elbow of his shirt only it was his arm bone (sorry for being so graphic lol). Well he was taken to the hospital to be taken care of which wasn't much back in those days. He had got gan green in the muscle in his upper arm so they had it bandaged up and had to go back once a week to have the infection pulled out. It had cause his hand to clench I guess you could say and that is the way it stayed.
Although growing up like that he could do more with just one hand then what some people could do with both. Who else could hold a nail and a hammer with the same hand!
I was always close to my dad. We did everything together. I learned just about all I know to this day from him. Alot of times I would rather hang out with him then with my friends. I worked with him when he had started his own wire business ( we made wire bird feeders and hangers,automotive paint line racks etc). We did woodworking together in the basement where we made bird feeders,toys and furniture and sold it at the local farmers market.
Even my friends all loved him. They loved listening to his stories of when he was a kid and such.
Then the day came when he was taken from us. Some of it was miss judgment from doctors and miss care at the local hospital here. The worst feeling was going to the hospital with a father and coming home without one :(
He was also a man that didn't want a funeral or people crying over his body. Words from his mouth was "just throw me out on the hwy when I die and let all the trucks run me over till I'm nothing and just blow away in the wind" he was always a man of words. Even when we seen him before he went into the operating room he said "if they wanna fix me give me a smoke and a cup of coffee"
So we followed his wishes. There was just a very small private showing at the funeral home. Which I could not go in to see him, I just did not want the last image ever of him laying there in a coffin. I was a little upset with the funeral director trying to get me to go in.
We had him cremated and as he wanted his ashes spread on the lake the family goes up to every summer fishing. We later had a celebration of life in the backyard. It was very nice.

Rip George R Edwards 1934-2000 you are sadly missed!

Friday, April 23, 2010

My first attempt

Well hello folks! This is my first attempt at writing a blog. I have been reading alot of my fellow cfers blogs and thought maybe I should get into the groove. I guess I will start with a little bit of info about myself and what I mainly blogging about.
Well my name is Sean, im 34 and live in Ont Canada. I live in a small town and would never give it up. Its so great that everyone knows everyone. My mom lives a couple towns over. I have one brother,2 half sisters and 1 half brother(all from my dads first marriage) I also have a large extended family. My dad passed away back in 2000 and was one of the hardest things to deal with in my life.
I was born with Cystic Fibrosis. It never really affected my life to a great deal growing up. I lived a pretty much normal life. I was hospitalized once when I was 16 for phenomena and made a recovery after a 3 week stay. I continued living my life and working. I was always pretty slack with my physio therapy and doing me inhaled meds. The last couple of years I decided it was time to take charge and start looking after myself more proper.
But sadly the last year my health has taken a downward spiral :( It has now come to the point that I am on o2 24/7 and being assessed for lung transplant.
It scared the crap out of me thinking wow there is no way I could have gotten this bad, I had not really educated myself that much towards cf. So let me say within the last 5 months I have learned more about cf then I've known all my life. I have also had the pleasure of meeting alot of other fellow cfers.
I will try to keep this blog updated through out my journey towards transplant and fill you in on some stories of my life.