Saturday, September 25, 2010

Yet another update

I had my C.F clinic at St Mikes on Tuesday and it was all good news! My lung function is back up to where it was in June, I didn't get the exact numbers but as I recall it was somewhere around .92 litres. I think this is the combination of the cooler non humid weather so I get out moving more and the exercise at TGH. We will see if its up more in a month. I am still waiting to hear back from the YMCA on my subsided membership, its been over a month since I submitted it. Guess I will go in and see on Tuesday (my only day off). I only have one more week of traveling to the city 3 days a week, let me tell you the km's on the ol dodge really rack up. I just mailed my mileage and parking fees this morning. I put close to 2000kms on since sept 16th and $134 in parking. Its terrible they have to charge you so much to park. But its the city what else can you do. Which brings me to my next adventure that happened this Friday.
I got down to Tgh, grabbed all my stuff and headed upstairs. As I was standing out in front of the physio lab waiting for them to open I reached in my pocket and noticed no car keys! Ohhh crap I'm screwed. I have my spare key in my wallet which is sitting on my coffee table at home (I have only been carrying a few cards and traveling light seeing as they invented most work out pants with no back pocket. So I texted my buddy and he said he would get CAA to open my truck. (he has a plan through this cell company) the only thing is he has to be I had to pretend to be him lol. So I get going in physio and he texts me back saying they will be there in 45 mins I said no good I cant get out till 2:30 which was almost an hour and a half away so he says fine he will call when I am done. So after physio I send him a message and tell him I'm done. He tells me to wait out by the emrg where the underground parking is. So I do and I wait wait wait and still no one. I'm keeping my eyes open for a tow truck to come down either end of the road. I wait for an hour and call him and say no one has showed. He calls me back and says the guy has all ready been and left cause he couldn't find no one. So they send him again and say its gonna be at least a 45 min. wait. So by 5:45 I find him....hes not driving a tow truck just a plane jane white ford ranger with little lettering saying CAA. well I wasn't looking for a Ranger if I knew that I could have probably flagged him down. He got into my truck in 5 min. and I was on my way home...not before paying the $25 parking fee ugh!
Traffic was terrible and of course its 6:00 on a Friday night. The road north was bumper to bumper of all the tourists heading north. I finally reached my driveway close to 8:30.
But on a brighter note, while I was standing outside TGH I was talking to a guy who mentioned his brother had a double lung transplant for cf 20 years ago. He says hes doing awesome and he is stronger then him now. So that was a pretty positive thing to hear. He said when his brother had it done they were just getting around to doing them so his outcome wasn't expected to be the greatest. Makes you think of now when they have gotten 20 years under their belt.

Saturday, September 18, 2010

Not much to say today

Another week down and so far so good. Been doing pretty good and some reason my o2 levels have stayed right up. My chest feels pretty clear too. I am curious to see what my lung function is at clinic on Tuesday. I bet its probably up but who knows by how much. They also gave me the word yesterday that they have been talking to Orillia Soldiers Memorial Hospital and got things set up for me to go there 2 days a week instead of Toronto. That should start Oct 4th they said.
I cant believe how much it has cooled off from the hot summer weather we had. Today its a overcast day and looks like rain.
Tonight is a little birthday get together for my mom, my brother is bringing dinner so it should be good times.

So cheers and hopes everyone has a great weekend!

Sunday, September 12, 2010

First update

Its a overcast cool Sunday afternoon. Not much happening around here. Sitting here sipping on a Timmies coffee which I have had to change due to managing my blood sugars. I use to be a large triple triple, I am now drinking a large 3 cream 2 sweetener. Changing a mans coffee is like making him wear a different type of shirt lol.
Anyhoo back on track here, I have now been listed for just over a week. I have done my first week of exercise physio down at Toronto General. It went good. I actually feel alot better too and my o2 sats are staying right up. When I first started they said they like to keep me 85% or higher. I told them that I was told to stay above 90% so I don't know who is right but I find myself I feel more comfortable above 90. I am really curious now if my PFT's have gone up, I guess I will find out in a couple of weeks when I have clinic at St Mikes.
There sure is alot of people there in the time slot that I'm there. I'm still trying to get into a routine on what to do as in time management. I was doing all my stretches and then weights. Then I would get on the treadmill and then the bike. The nurse on Friday told me to try and break it up seeing as I'm only there for an hour and not to do my 2 big workouts back to back. So see how it goes tomorrow. I only have three weeks left then I can move my 2 days closer to me. If it wasn't for gas and the wear and tear on my truck I don't mind the drive. Its actually a little relaxing and gives me time to think.
They had asked me to call around up here to see if there was physio offered in Penetang or Midland. The response I got from PGH almost had me hit the floor with her honest words "will you be hospitalized for transplant" I knew I wouldn't get anywhere with that. So I talked to TGH on Friday and they are gonna get me into Orillia Soldiers Memorial. They said they are the only ones accepting people and Barrie's Royal Victoria hospital is too booked up. I'm just hoping they have the parking sorted out in Orillia now according to my mom.
I got around last night to packing a bag for transplant, which included some pajamas, shirt,socks,slippers,cell phone charger,disposable camera and a bag of all my meds I take(thanks god I had some extra of all them so it makes easier) So that is now in my back seat of my truck.

So here's to hoping the cell rings or pager goes off! Cheers all!

Saturday, September 4, 2010

Day 2

Well lets rewind a couple days to catch you folks up. Last week I got a call from Michelle the transplant coordinator that they set an appt up for me to meet with the transplant surgeon for Sept 2nd. She said that means Sept 2nd I am officially listed for transplant. To some that would seem scary but to me it was some of the best news ive heard. Ive done alot of work and such to get myself prepared kinda like getting all my ducks in a row as the old saying goes. She said also they had contacted Bell for them to mail out my pager.

I received my pager on Monday August 30. It was already activated, I tried the # but it didn't work for me. I wasn't worrying cause they said to just bring it with me on the 2nd.

So the 2nd came and I headed down to Toronto General with my mom and my good friend/roommate/support person. Traffic was good except for the tiny traffic jam getting off the 400 to the 401 east bound. We thought we were running a little late but even with the traffic we made it there in 2 hours.

We met with Cathy because Michelle was off for the day. She tried my pager and yes it didn't work so she called Bell and apparently the pager is defective so they are mailing me out another one. No biggie cause if I get the call they try my phone first which I always have on me if not my moms number and my roommates cell.

She went thru some more things with me and more stuff I have to look after before transplant which includes a hepatitis shot seeing as I will have to have blood transfusion during the operation. She also asked when was the last time Ive been to the dentist...I was like ummm I think 2 or so years ago to have a tooth pulled. Since then I haven't had any dental coverage so I haven't been, but seeing now as im on ODSP they cover basic dental so she said I had to arrange to have a check up and cleaning. Who knew they would need that for transplant lol. But hey its just another thing on the "to do list" I also have to talk to ODSP on coverage for my micro spyrometer to keep track of my lung capacity before and after transplant. The social worker at TGH says that sometimes ODSP covers it if not its $750 out of my pocket. So fingers crossed that they will cover which I'm pretty sure they will. I cant talk to my worker till next week.

After meeting with cathy we had to meet with the surgeon. We met with him to sign some papers, some for consent for the surgery and if need blood, one for tests and such on my old lungs and to take a bone marrow sample and the final one was for the new ex vivo lung machine they can actually test the lungs before transplanting them into you. I will post a link to the you tube video of it. Toronto general is the first to do it. As for the bone marrow they take is to do research and try growing lungs which they have had some pretty good success at. So one day they would be able to grow you lungs instead of finding a donor and the plus side is to cause its your own marrow there is no rejection at all so I believe you would not have to take all the rejection drugs.

The surgeon explained the procedure and then reassured me that according to all my tests I only had a 1% chance of not making it thru the procedure and hospital stay afterwards which was very reassuring.

After the surgeon had to go make an appt with the physio for my 3 days of pre transplant exercise. I am required to do it three times a week pre transplant. For the first month I have to do it all down at TGH then after that I can do 2 days up here and 1 day down at TGH. After transplant I have to do the first 3 months 3 times a week down at TGH which is gonna be alot of driving which I wont be able to do...hope Dans up for it lmao.

So next week I start Tuesday, Thursday and Friday all in the afternoon that way I don't have to get up halfway in the night to get ready for an am appt.

Well that's all for now, I will keep you posted!