Monday, August 30, 2010

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.

Wednesday, August 18, 2010

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.

Tuesday, August 10, 2010

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.

Sunday, August 1, 2010


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 :(