Keeping my fingers crossed

Monday was a rough day for me. My alarm went off at 6:30 in the morning and I didn't wanna crawl out of bed. I manged to pull myself together and get up. Went downstairs and started my normal morning routine. Every Monday morning I have to take this pill called Fosomax. Its a bone building pill. Just another part of CF and the pancreas not supplying the body with all the necessary vitamins and such. The only drag is you have to take it with plenty of water. Stay standing and sitting up at least 30 mins (cause it lays in your digestive track it can burn) and not eat for 30 mins....its such great stuff lol. So I take it then do my nebulizer and stuff by the time that's done then I can eat. I leave the house at 9, stop and the local Tim Horton's and grab a coffee for the road. Then stop at the gas station and fill the ol dodge up. Which is always painful with the price of gas these days. Then head my way to Toronto General Hospital. I usually leave around 10, it give me time to get there and relax and have another coffee before physio. But this week I left earlier cause I was scheduled for my quarterly antibody blood sample for transplant. They take a sample of your blood every 3 months. It helps with coming up with the anti rejection drug combo for after transplant. Anyways I find the lab I got to go to and get that done. Perfect still time for coffee...I'm a happy man lol. I wanted to do this before rather then after cause I wanted to get to the 401 before rush hour at 3:30. Driving down there so much I have learned all the times and traffic flows lol its sad.

I went to physio and plugged thru it. Usually when im on the treadmill and bike my o2 is set to 8lts and when done I check my o2 saturation and its usually 97% or so. But it didn't go past 93%

On the way home I had this stupid cough that wasn't really productive just really annoying and made my chest sore. Lets just say I was grumpy when I got home lol. I just wanted to sleep and had no ambition to even cook dinner. I just had a sandwich and a scandishake and some sweets for desert. Took my insulin like usual. Just laid around and watched tv. I always check my blood sugar 2 hours after and it was 8.8 which is good anything 10 or lower is fine 2 hours after.

I finished watching my Monday light line up of shows and was getting close to bedtime. So I checked my blood sugar before having my night snack and bedtime insulin and it was 18.8 I was think what the hell, I didn't eat anything all night how the hell? So I had to adjust with my regular insulin and also take my night time insulin. I was fully expecting it to be high again this morning but it was ok was down to 6.9

With the having blood in my phlegm, coughing and having a sore chest, spike in blood sugar and not having any get up and go all made me scared that a infection was setting in and would mean I would have to check in at club Bond at st mikes lol. This morning I went to physio and plugged thru that, I did alot of coughing and my o2 sats were still low on the treadmill but after the bile they were up. My chest isn't achy anymore. Makes me wonder if I just had some mucus plugged up and I finally moved it. My blood sugars have been fine so far. I will see how I do the next few days and hopefully I wont have to call clinic.....not that they call right back anyways lol.

As I was laying in bed Monday night I was thinking how cool it would be if all of a sudden my phone rang saying Mr Edwards, this is TGH we have some lungs for you. I still dont know what my reaction will be when the call does come.

So keeping my fingers crossed :)

Hemoptysis

Today was my first experience with hemoptysis. To most people it would scare the hell out of them to cough up phlegm that is all red. But with all my searching the net and reading others blogs that have experienced it I felt ok. I did have to ask other cfers on what the outcome of it would be and was assured that it is a normal occurrence with cfers and not to really worry if it is less then a cup full (which it was) but to juet mention it at the next clinic appt. They always do ask me at clinic if ive coughed any phlegm up that was blood so now I guess I can tell them yes.
To those not familiar here is a little write up on my Toronto CF Clinics website: http://torontoadultcf.com/cf-information/hemoptysis

It happened this morning after I got out of the shower. It was not very much maybe three big globs of phlegm....ya ya who knew you could easly talk about what you spit up lol. I think it may have been due to being so productive last night before I took my nebulizer. I am gonna hold off on my inhaled tobramycin till tomorrow night cause sometimes that can irritate it and just stick with my ventolin.
My mom had me call the Tele Health this morning. Now that was fun, first they said it was an hour wait so they could take my number and call me back so that is what I did. The nurse called me back so I explained I had CF and that my phlegm was bloody this morning, she asked if I felt weak or shortness of breath, I told her no I feel fine and that my o2 sats were sitting at 94 and that was good considering I was on oxygen therapy. Then I said it is almost back to green and her reaction was ohhhhh! its green? all worried, I said no that is fine its part of cf then she asked how long I had it. So then I ended up sitting on the phone educating "the nurse" on Cystic Fibrosis. So ya that was fun.
I think I will just stick to fellow cfers and ask them what they experienced.

Peoples reaction

I was in Walmart today getting a few things. Because of where I work or should I say worked, I know alot of people in town. Mostly just customers of the shop. I try just to avoid them to stop with having to go thru all the talk and such. It gets tiring going thru the same speech all the time. So anyways I was heading to the check out and ran right into a customer which at this time could not avoid. So I said hi how are you doing? His reply was hello....what the hell happened to you? So I had to explain the whole being listed for double lung transplant. Then after that comes the discussion of CF. Or they will point at their nose and say whats up with that?
You see I never felt the need to explain to all the customers that I had CF. Quiet frank I figured it really wasn't much of their business. Sure they would come into the office and hear me coughing the odd time and say "ohh thats a bad cough you have do you have a cold" All I would reply with would be no I have this all the time and leave it there. I didn't see the need for them to know my whole life and what I go thru with.
Little kids are the funniest when they see me wearing the o2 they point and say why is that man wearing that? lol so cute :)
I don't mind educating people on CF but some days I just get tired of it.

A nothing to do Wednesday

Today was my day off from all my traveling. It always seems like a long week when I have my CF clinic plus physio at TGH. Clinic on Tuesday went as per normal. My Fev1 was down a very tiny bit nothing to even worry about. My weight was up some more, a whole 117.3 lbs. I'm gonna try and break 120 lbs lol. That will be the first time ever if I do!
Today I didn't do much of anything, slept in till 8:30. Usually I'm up 7:30-8:00. Do my meds then eat breakfast. Then I just crashed on the couch all day. Tomorrow I'm back off to Orillia for physio.
On a different note I'm still messing around with my blog page. I added the AD gadget. Apparently Google will place 2 advertisements on your page and when ever someone clicks on it you get paid. They mail you a cheque, so ya feel free to click away lmao. Although they never did mention what they pay so we will see.

Well the count still goes on, I've now been on the transplant list for 90 days. I'm wondering if I will get a beautiful Christmas gift :)

Just not feeling it.

Its now almost mid November. The infamous Christmas season is approaching,well if you go into the stores they are telling us its already here. I use to love Christmas and looked forward to it. But now getting older and not having my dad around anymore I just don't seem to get the feel of it. Maybe is all the commercialization they try to push onto us all the buy buy buy. I think the true feeling has been lost.I use to like the family gatherings which are now hard to come by cause everyone is spread apart and have their other sides of the families too. So it is so hard if not impossible to get everyone together.
The last few days I just haven't been feeling myself. Things running thru my mind. Another couple of months it will be my birthday, I will be 35...mid thirties. I did not see myself at the position in my life I am in now. I figured by my mid thirties I would be settled down and have a family started. Be working at a job I love. Instead I'm single on disability hoping all goes well and I will get to return back to work. But that feeling that I have replaced, having to find something new to do does upset me. Its just been a sad week for me, just had to get it off my shoulders.
On a brighter note I did get to have coffee with a beautiful lady that ive been chatting with for the last few weeks. Hopefully get to see where things go and what happens. Guess there is always hope!

Let it snow

Its now been 2 months listed. I haven't let it bother me or play on my mind. Just keep myself busy and pluggin away. Im sure when the call does come it will catch me off hand. I'm not really looking forward to the driving to the city in the snow. The 400 hwy can get kinda crazy with white outs and such....should be an adventure. Don't really have much new to talk about. So far managed to stay healthy, well as healthy as I can be for a guy wearing O2 lol.

I changed up my blog background, I like it alot better now. I'm sure I will change it again when I get bored with it.

Anyhoo seeing as I don't have much new to talk or rant about I'm gonna end it here.

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.

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

-skydive

-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

-

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.

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!

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!

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.

http://www.youtube.com/watch?v=RYNnF3TjSEw

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.

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 there....so 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.

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!

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!

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. http://www.youtube.com/watch?v=gXqMsraSb84

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!

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 :(