Listed Finally!

Well this last week hasn't been too bad,maybe cause the weather has been a little more friendlier. This weekend was nice. Saturday didn't do too much for excitement, grocery shopping,coffee down at the town dock. Sunday some friends and I headed out on the Georgian Queen. Its a local tourist boat that takes people out into Georgian Bay around some of the 30,000 islands. It was a hot sunny day. I cant believe I sat up on the top deck the whole trip in the sun. I kind of enjoyed it cause it was hot yet not humid, hell I didn't even have to turn up my oxygen at all which was a good sign. The cruise left at 2 and was back close to 6. I headed home for a quick bite to eat then was gonna head over to the local museum (Centennial Museum) where a friend was playing. They have live music there every Sunday night. She played 7-9 although I didn't get there till after 8 cause I fell asleep after I had something to eat lol. But nonetheless I made it. She did a great job.

Earlier on in the week I got another call from Michelle,the transplant coordinator from Toronto General. She set an appointment up for my Sept 2nd to meet with the surgeons and was arranging to mail out my pager. She said that they had decided to list me. I was surprised and happy. I guess my cf doctor laid it on the line with them and seen I have been working with my blood sugar control.

So that's all I have for new right now, Ill write and let ya know how it goes the Wednesday.

Trying to stay postive

Well this last few weeks I've been kinda down in a funk. Dont really know why much. maybe cause I sit and watch the summer pass. Not being able to get away anywhere and just basically having put my life on hold. Cause of that I really haven't had much ambition to push myself or to go out and do things. Maybe the news that they say I'm still too healthy for transplant. I had everything set up and was keeping my fingers crossed that by this time next year I would be able to get back to somewhat normal life and hopefully get back to work. But that hit a road block. This past clinic though they said that they are gonna talk to the transplant team about listing me cause I don't have much health to be playing around with. My pft's were down to 20% from 23% last month. Although they said its not enough to warrant antibiotic use. To just keep an eye on things and if I feel I'm getting worse to call other then that go back in another month.
I have had a little issues with my blood sugar as well. I did have them under control and then all of a sudden not. Damn cf. But with the wonderful diabetic nurse at clinic we have got my sugars almost under control and managed to get my HAV1 levels down from 9.2 to 8.1. The transplant team would like to see them at 7 or less which I'm sure will be there by next clinic.
It sure has been a road of hell since December when I got the initial chest infection that dropped my lung function into the basement and left me stranded on o2.
I'm trying to stay positive. I went and seen about a YMCA membership this week and have to go in next week with the application. I'm just hoping I can keep up with it, even if at first I only spend 10 minutes and work up from there. I think like my mom and I see other transplanters I will concentrate on my leg strength.
I never thought I would mutter the words ill be glad when fall is here. It has been a really hot and crazy humid weather here. And who can go out and concentrate on things outside when if feels like a 200 lb person sitting on your chest...not fun. Its also not good for energy level. When its hot like this and I'm hot I don't feel like eating big meals either which isn't good. I thought for sure my weight would be down again this clinic but apparently I gained 1.6kilos go figure. Maybe its from having my blood sugar under a little better control?
Well that's about all I got right now, as I sit out on my back deck on the beautiful evening.

Not much new

Just another hot humid day out today. I did go out earlier just to get out of the house. Checked the mail and got an Ice Cap from Tim Hortons. All I can say is thank god my ac works in my truck now cause there is no way I could handle it out there. I use to really love the hot summer weather...that is when my lungs were alot better. I suppose to be on 2lt of 02 at rest but with this weather I don't feel comfortable without it being at 3-4lts when outside. And I have been noticing now the SOB (shortness of breath) Not fun or nice. I am hoping it is just the weather and not my crappy lungs getting crappier.
Ive haven't been up to too much. Still in search for a treadmill to try and get some exercise in. I tried an exercise but my knees just get to sore using it. I have also been doing work with the cf diabetic nurse to get my blood sugar #'s better. Right now we are concentrating on my night and morning blood sugar. It is still a bit high but slowly getting lower.
Lately my days haven't consisted of much, get up at 8 do meds and eat. Then sit around watch my morning tv shows. usually by after lunch I got the motivation to get up and go out if needed. I think the worse is not having the need to be up at 6am and work for the morning. Cause of that I feel like ive fallen in a pit of laziness lmao. Its not really a good thing for someone with cf, especially me seeing as im use to being on the go.
I'm just curious on what my pft's will be like for clinic next week and my weight. Guess I gotta just keep my fingers crossed and hope for the best. Id imagine my pft wont be that bad but have a feeling my weight still might be down :( Damn cf!
Anyhoo thats all I gots right now....will keep you updated.

Kempenfest

Well I had a nice day out with my brother. We went down to Kempenfest in Barrie. There was tons of craft booths and such. There was tons of people there. It was a nice day out but I had a hard time enjoying it. There was lots and lots of walking. I did take a few breaks and had to take two 02 tanks with me.
I only wish I was better cause I couldn't really concentrate and check alot of things out cause I was worried about my breathing and running out of o2. My chest was sore from coughing. Its hard to cough discretely when there is so many people crowded around. I did do alot of walking which I guess was some good exercise. But there was no way I was gonna be able to walk all the way back to the car so I had to wait to be picked up lol.....TAXI! lol
I only wish I could of enjoyed it more :(

Emotions of CF

Well let me write this again, it erased my whole blog :(

I had a event happen to me that made me think of the tough emotion/mental feet us cfers deal with. Besides the tons of meds and physio we have to deal with everyday come love. I have been single and on the dating scene for two plus years. I have only had a couple of dates during that time. The most recent date I had was last week. I thought things had went well. We had coffee and talked about a few things, one of the topics was my cf and such. A few days later we chatted and she just seemed to be distant, then next day I got a message that she had found someone else to date, which was fair no worries but then the next thing she said was that it was someone she was more comfortable with. Maybe I just took it the wrong way? But it sounded like cf was something she couldn't deal with. I mean cf isn't just me, ya so I have an o2 hose on my face. But I'm me, I m a person inside.
I think its tough for people to adapt to date someone with cf, it must take a strong person to see past that and see you for who you are on the inside. Which leaves me sitting at home alone at night.
Which in turn gets me thinking about other things. 2-3 years ago I didn't really thing much about my cf, I just went out and did things but now it seems its the only thing that's on my mind. Worrying about coughing, am I coughing more, am I getting sick. What will happen next? Do I need more o2.
Then you have the other thing of the financial end,something that bugs the hell out of me. Seeing as I had to give up my job I've had to go on disability. Well lets say the government is very unfair. They are still basically giving the same amount they did 12-15 years ago when my dad was on it. Have they not noticed that things have gone up since and the cost of living has? It just makes me very sick to my stomach how they expect us to live on a little over $1000 a month? Its basically just added stress to our illness, having to pay each month for our oxygen therapy cause they don't fully cover it....and that's just to breath!
All I can say is I sure hope the lottery pays off soon.

Alright that's all the ranting of the night! just had to get that off me chest hehehehe

Too Healthy?

Its been 5 weeks since I finished my testing and Toronto General for lung transplant. The way the doctors talked I would be listed and be on my way to getting new lungs. Like my previous blog it was a big decision to go thru this whole deal. At first I was just forget it im not interested and ive lived a good life. But after talking to post transplanters and reading articles there is a good chance of living past their 5 year expectancy. So after alot of thinking and talking with family I had decided to go thru with it.
Well finally today the Transplant Cordinator got back to me. Not news I would think I really would want to hear. She said I was too healthy at this time, I would have to wait till my health deteriated more and my quality of life got worse. It was abit depressing. I had gone a long way to get to where I am now, numerois government forums, letting my job I love go so I could get onto disability (which barely gives you enough to live on and actually have a life) It wouldnt be so bad if I was more stable financially and I didnt have to worry about my protable o2 tanks running out when out with friends.
So I guess I have to turn a new leaf and deal with what comes, they also told me that a good exercise program can actually improve my lung funciton. I do not know exactly how this can works because I figured there was no getting back your scared and fibrosed lung. So I think I will track down a good treadmill and start running a bit everyday. I would rather do it in my house as I can just be on my o2 concentrator and have it turned up and not worry about running out of o2. The portable tanks just do not last when they are turned up to 8 lol and I dont wanna get stranded o2 less lmao.
So we will see what happens, who know maybe it will work? I would love to hear suggestions.

Ohh the heat has finally left

I use to love summer and the hot weather. But now being in the situation that im in now I can barely handle it and with the high humidity we had it nearly broke me :( I spent 2 days just sitting on the couch in front of a fan. The humidity makes your chest feel heavy and is hard to breath. I found I had to turn up the o2 a little higher too to be comfortable. and sitting around isnt really good for us cfers, its a bad combination doing nothing all day long, it gives bacteria a chance to start growing in the lungs from the muchas that were not moving cause were just sitting.
Ontop of that with the heat I loose all my appetite. So I had to make sure to drink lots of my scandishakes to keep the calories up.
Well now the humidity has broke and its manageable now thank god. Lets hope its a nice cool weekend :)


Sorry for the short blog, I will write more when I have more lol.

Happy Canada Day!

Well it was a nice Canada day. there were lots of festivities around. I came to realize when heading to the local park with my brother to meet some friends that I cant keep up with people now :(

It started off at home in the morning with the usual routine, get out of bed,come downstairs and do my meds. Then eat some breakfast. We then sat around and watched some tv deciding on what to do for the day. The night before we had been out at a friends backyard party, where again I found the limitations on what I can do and what I miss the most....sitting around a bonfire. It becomes a little dangerous when you are tethered to an o2 machine. Anyways back to the story. We decided to meet my roommate,his mom and son down in the Park in Midland (next town over) There would also be a couple of other friends there too with their children. We got to the park to find it chaos, nowhere to park. As we circled the parking lot we finally found a spot. Only it was located way at the back of the rec center. Which entailed a walk to get into the park, not a big deal. Although what killed me was the 2 huge hills I had to climb. When we finally made it down to where they were sitting after 3-4 rests on the way I made it. Where I just sat and collected myself...not looking forward to the walk back to the truck. We hung out for awhile, enjoyed the live band and took in the sun. We left for some dinner and plus my o2 tank would not last to the fireworks. Then I would surely have to be carried back to the truck lol. So there was no way I was gonna endure all the SOB (shortness of breath) coming back for the fireworks. We did however found a spot on one of the side streets where we could see some of them.

I have also come to realize that maybe it is time to apply for a handicap permit. It would make my life a little easier I think.

CF SUCKS

Well I have only met one other cfer that had passed away and that was back in the 90's. It was back when the internet was not a popular thing so I never really kept in touch. I would only see her the couple of times when I was in clinic and once when I was admitted. We did go out trick or treating once when I was admitted. It was when they didn't really know about cross contamination. Hell they even had cf camps.
Well now I had the joy of meeting (well online) a fellow cfer named Hattie. We bonded much like all my other cfer friends. She just recently got put on the list for transplant and have gone down hill rather quick. She is now in the scary end of cf. We are all praying that a donor comes along sooner then later. I cant imagine what she is going thru right now. I am sure hoping that I don't hit the bottom like she has. Just the emotional stress is terrible.
I had a hard time sleeping last night just thinking of all the outcomes. And it just plain SUCKS!
All I can do is offer my support and keep my fingers crossed that there is a call this weekend from someone that wasn't wise in their decision and comes to the decision of having to donate their precious organs.

Hang in there fellow cfer the call will come!

Im a country boy!

Well as I sit here in the middle of China Town in downtown Toronto I came to realize I cant stand it here. Besides having to drive in circles out of your way to actually get to the place you have to get to. Why that is? Well you see someone came up with the brilliant idea of having only thru traffic at certain hours...meaning no left or right turns at certain times of the day. Not a swift move it gets us country folk all confused,stressed and pissed off!
Ok my second pet peeve is wtf is with parking? I do see why everyone rides bikes. It costs your a fortune to park anywhere...that is if you can actually find a lot that your truck will fit into. Lets just say I parked in some pretty cramped spots these last few days. Not a place for a candidate for Canada's worst driver. There would for sure be sparks and paint missing off of cars lol.
The parking garage at TGH was full it would only spit ticket out to enter after someone had left. So I wait, I get in the only thing is they didn't account for the three handicap spots. They were empty so of course the computer would say "yes" there is spots available. Well after driving around in circles for 10 mins and no one leaving I left. Had to park three blocks away...which again I had to squeeze into a spot..maybe they figure everyone just drives minis and smart cars?

So my tests today weren't that bad simple just lots of waiting..that's my pet peeve lol. I have a couple more people to see tomorrow morning then I am gonna get the hell outta dodge and get back north. Where there is less traffic,less people and smells a hell of alot better!

See you all my country people tomorrow night! You city people can keep your stinky,no parking cement everywhere city!
Im outta here!

Well the time has come.

Well as I pack my bag for tomorrow, I realize thats its almost done to get onto the transplant list. I head down to Toronto and stay in a hotel for 3 days to do the final little tests for double lung TX. Then apparently have to wait 2 weeks to hear from the transplant team to recieve my pager and see how they are gonna list me (as critical or non critcal....meaning I am stable enough to survive another year) Sounds pretty depressing when you say it that way.
I have been warned by other cfers that have gone thru the assesment process and the meetings I have where they dwell on all the negative outcomes and bad things that can happen during and post transplant. I seriously think all that negative puts people in a stumper and makes it harder for them to recover. I am just gonna hear what they say and think of how GREAT the outcome is gonna be. How life will change and be able to do things with out worrying about how long I have left in my portable o2 tank and not having to lug the damn thing around. How it will be nice and peaceful at bedtime without the o2 concentrater running away.....and running up my hydro bill!

I havent wrote much new stuff cause I just havent had the insperation or just plane ol writers block. Ive been trying to keep myself busy and such.
I have taken up reading which is odd for me seeing as I have only read 2-3 books in my whole life lol. but Im quiet impressed almost done my second book in less then a month. Wonder if it will keep up?

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.

Memories

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!

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.