Tuesday, October 26, 2010

Clinic today

Had my monthly CF clinic today and St Mikes. I was surprised at how well it went. Got there about 10:30 and figured as per usual clinic days and just sitting and waiting for hours on end I would just sit downstairs at Tim Hortons and have a coffee instead of getting my coffee and rushing up and being a 1/2 hour early. I got upstairs at 11 and sat in the waiting room till they came and got me to take my weight. Which I may mention was up 8.14 lbs since last month! I believe its cause I have got my blood sugars right in line. It took alot or work but I did it!
I then got showed to my room and there is where I sat for 1/2 an hour before they came and got me to go to the pft lab to do my lung function test. To me I didn't feel like I blew that great but according to the readings my fev1 was up to 1.16 lts which is up from last months .86 lts..whoo hoo another bonus that now puts me up to a whooping 29% lung function from 23%.
Back to the room I went and I sat, played around on the computer a bit then sat around some more. I waited for hour and a half and finally the doctor came in to see me. Wasn't much to say he was happy my numbers were all up, then asked what do I do with my days and spare time seeing as im not working. I laughed and said what spare time. All I ever do is go to doctors appt's. He told me to continue my treatments and such, and don't just give up cause I am gonna be getting new lungs lol. Something I couldn't believe he would say seeing as all the work ive done this past month to get better #'s.
Oh well Ill just continue what I'm doing and see if there more increase next months clinic.

Sunday, October 24, 2010

My bucket list

Well this is my bucket list.....or what I would love to do or dreamnt of doing. They are in no specific order. It is just a running list, I may add more later.

-travel to a different unique country

-go on a cruise

-ride the train out to the west coast

-road trip to the east coast

-drive the trails in moab or the rubicon


-fish for sharks

-shake hands with a famous person

-travel route 66 and hit all the little diners like Diners,Drive ins and dives

-own a classic muscle car

-get my motorcycle license and a bike


Wednesday, October 20, 2010

Winter will soon be here

Not much new around here, Heard on the radio this morning that there is a chance of flurries on Friday YUCK! Other then that it is just the same ol same ol. Come Nov 2nd it will be 2 months ive been on the waiting list. Things are going pretty good. I am now going to Toronto General once a week on Mondays and then to Orillia Tuesday and Thursday. Its so nice having only a half hour drive instead of a 2 hour and fighting all the traffic.....yes im a country boy! Which ive stated many times before.
I signed up for a study at TGH. They are doing a study on the effects of exercise pre and post transplant. There is not much to it. On Monday I had to do a 6 min walk test (no big deal cause I was due for my next one for physio) and then had to go over to University of Toronto to do a couple of muscle strength tests. Next I have to wear I thing similar to a pedometer for a week pre transplant and a week post transplant. They also meet with me right after surgery,day of discharge and 3 months after.
My walk test went good, I walked alot farther then a month ago and my o2 sat only dropped to 90 instead of 81 a month ago. They also weighed me and im up to 52.8 kg which is up from 49.8 my last clinic a month ago.
I have my CF clinic again next Tuesday so we will see what my PFT's are and if they are up more.

Wednesday, October 13, 2010

Hoo Humm

Its a cool October day, it is really starting to feel like fall now and the impending winter not too far away. Something im not looking forward to :( Having to clean the snow off my truck everytime I wanna go somewhere, having to bundle up in layers of clothing to stay warm.
I think I must just have the fall blues. Not nice enough to do anything outside, being broke, wishing I was back at work. I stopped in at work today for a visit with the guys at lunch and I dunno it just got me a little depressed not being there or knowing what was going on. Also not having the financial freedom I had. It seems every month im worrying about money and how to get all my bills paid. Odsp does not help things, I still have not received my first mileage cheque for traveling back and forth to the city, really I have submitted 2 and will be submitting my third at the end of the week. When I was traveling it was almost $350 a week out of my pocket, where do they think I can get the money and still live. The government system really sucks! I hope one day I can get back to work or win a lottery. I already have the stress of having to deal with for pre transplant, I really don't need this. I am not one for having to ask for things I have always been self sufficient so it makes it really hard for me. I am 34 years old and shouldn't have to have my family buy me groceries and help out with my monthly bills. I guess it all boils down to the government system needs a total revamp and deal with the cost of living these days its nowhere like it was 20 years ago! Things have changed dramatically and prices have risen like crazy! Yet their benefits don't, if I didn't have to be on it I wouldn't. Im not like some people and just screw the system, buy beer and go to bingo every night. Im just trying to survive and have somewhat of a normal life. I don't want to sit at home and not be able to get out and enjoy things cause I cant afford them. Seems the only thing I can afford these days is a cup of coffee lol.

So cheers I raise my cup lol!

Tuesday, October 5, 2010

I need a holiday

Today was my first day of exercise in Orillia. It all went well and lets say I like the 30 min drive instead of the 2 hour and traffic fight. I get to drive with my own northern people not the maniacs of the city.
I got the the exercise room...that is once I found it along with a place to park. I ended up parking in handicap with a parking meter. I had a whole mess of dimes in my truck so I just fed a pile to the hungry meter and it gave me over an hour and a half. Alot better then the feeding of $20 bills into the parking machine in the city lol. The only thing is you cant get a receipt from a parking meter but I think I can digest the cost of parking!
Back on track now. I got into the exercise room. They hooked me up to this behemoth o2 tank cause this part of the hospital isn't equipped with hospital o2. I guess they deal with alot of post transplant and surgery people and not people needing o2. They also do not have a large liquid tank to refill my portable. They set me up with all my weighs at one end of the room and let me do my thing. There was 4 other people there all men and I would have to say the age group was mid 60's to 70's and here I am a whole 34 years old. Felt kinda out of place. But non the less they were all very nice and struck up a conversation. After they were all done their things and was just me left in the room pedaling my life away on the bike and the physio dr sitting at his desk. We started talking and he was saying they have had a few lung transplant people from tgh attend their program. He didn't say how many were cf related. Then his next question for me was what all this negative and positive talk was in the cf community. So I had to explain the whole cepacia. This kinda made me question and wonder, I didn't see any latex gloves to wear when on the equipment like at TGH or alcohol wipes to wipe down weights and equipment. Unless they do it after I leave which I am hoping they do.
So anyways it went good and I was on the road home with a timmes in hand. I got home and had to call some RRAP program that ODSP told me to call about getting a furnace for my house. I talked to a guy there that said all their funds were depleted for this year that I would have to wait till next year and asked for my address so he could fill out an application, I told him wasn't that kinda pointless and asked what kind of a waiting time was there. He said well we wouldn't be able to do anything this year for you...so I said again so this is completely pointless cause I need a furnace this year or its gonna be one cold winter. But this guy still insisted on mailing me an application so I said fine and hung up. Maybe he gets paid depending on how many applications he mails out to people? So I called ODSP back cause they said if they couldn't do anything to get back in touch with them and they would do something. So now I have to get 2 written estimates on a new furnace plus one more letter stating my furnace can not be repaired. So now on my other 2 days off I got to arrange for people to come over and give me estimates.
I just don't ever seem to get a break or time to myself there is always something. It seems I am busier now then when I was working its crazy....I need a holiday!

Saturday, October 2, 2010

One Month

Well today marks one month of being on the waiting list. Where does the time go? Its funny how the older you get the faster time seems to slip by, does anyone else notice this. I mean look at summer it seems we just started and now its over, the leaves are already changing and falling off the trees. Every time I see a leaf fall off the tree I think on Monty Python and the Meaning of life of the leaves falling off the tree and screaming hahaha.

There is not much new to report. Exercise is going good, this coming Tuesday will be my first one in Orillia so we will see how that goes. Money is starting to get tight care of ODSP and all the traveling back and forth to the city. I still have not received my first mileage cheque, they seem to like to take their time. Its crazy the amount of gas I go thru and the parking fees are crazy. One week cost me almost $160 its crazy (btw that not just parking its parking and fuel)
Well on a better note it seems I have my blood sugars right under control, I think it was a combination of finding a new amount for my long term insulin and exercise. Ive been able to get back to my sugary snacks hehehe as long as everything is labeled so I know exactly what to take for insulin and not guessing.
So I think that's about all for now folks.