Friday, December 31, 2010

Last day of 2010 HURRAY!

I think the iv meds did the trick. Last couple of days I have had alot more energy. I ventured down to Ikea with my brother to buy a new bed/frame as the box spring I had was creaky as all hell and really annoying and the base was just the old angle iron with wheels so it was forever rolling away from the wall which meant you really couldn't sit up in bed and read. The old bed frame was knocked to pieces and is in the back of my truck. Will have to dump it off at the transfer station if it doesn't get buried in snow. The angle iron frame will become metal to make things for the the ol jeep. I have also been a little less short of breath. Especially today, went to the grocery store, when I came out with the groceries and put them in the truck I walked the empty cart to the cart carell, usually I just abandon it cause by the time I get stuff in the truck im worn out. I think its also a combination of the weather too as its +6C out today so no cold air to mess with the ol crappy lungs.
Its now almost New Years Eve, still really don't have plans. Might see if a buddy of mine is having people over and head over there later tonight. I am still waiting for my delivery from the pharmacy that the homecare deals with. They were suppose to get me more iv line to run my one med cause I told them I only had 1 left for Thursday Am's med and apparently the nurse requested it for Friday to be delivered. After a phone call Wednesday and being transferred to 5 different people and having to repeat myself all 5 times the said they would switch the delivery and get it to me by 7pm Thursday night for my evening med. That didn't fly, no one showed. Its now Friday and I have not gotten any call that they are delivering. So I had to miss Thursday pm's med and today's AM med. I'm not worried about it seeing as im done tomorrow anyways. But come one they need a way better system then what they have now. I shouldn't have to worry about this stuff its the nurses job and Homecare....thats what they freakin get paid for. I did complain to them the other day about them sending a different nurse every time and each nurse not knowing whats going on. They said they were gonna look into it. Ill believe it when I see it.
So anyways back on track lol. Im glad 2010 is finally over. There was nothing good that came of it this year for me. Really nothing to say hurray to. My health went to the shitter, got listed for transplant and had to give up my job which I enjoyed. Then the spending the whole year single again.
So I sit here wondering what 2011 will bring? Im pretty sure it will be lungs at one point but when? I surely don't want this year to be a complete right off again and would love to get my life back on track.
So on this lovely note.......Happy New Years to all my friends and fellow Bloggers!

Tuesday, December 28, 2010

Finally feeling better

Today is the first day in a few weeks that I have felt ambitious and do things. Want to get out of the house and such. Usually I'm up at 7:30 to do my med then eat breakfast,do my nebulizer then pass out on the couch and not get dressed till lunch or just after. Today I was up did my morning routine. Got dressed and was out the door to do things by 10:30. Get gas,go to the drug store and pick up some more blood sugar test strips and get a coffee. Got home, did dishes,gathered all the recycling up and cleaned the rabbit cage. Then sat for a bit before heading back out to a friends to see if he was home (apparently he was he had his truck pulled inside the garage lol) then headed over to Home Depot to get some weather stripping for the back door and another coffee lol. Ill probably head back over to my friends tonight after 8 for a visit.
Tomorrow is already planned with a trip to Ikea with my brother.
Now to just figure out what to do for New Years. Hmmmm

Monday, December 27, 2010

Christmas jibber jabber is over

Christmas is finally over. I just didn't feel it at all this year. I cant say exactly why, all this commecrialization of making people go out and buy things for people and people asking for stuff. What ever happened to just spending time with family, traveling to see family you haven't seen in a long time and having a nice dinner. I was just tired of the whole "deal" this year. Maybe cause I have so much other stuff going on in my life. Lately I just haven't been much into the socializing mood either. Id rather just sit in the comfort of my house, stay out of the cold and not having to lug an o2 tank around and also my iv bag. I sure hope my numbers are up by the 4th so I can get rid of this bag. Ive already tried getting up and walking away from the couch without the bag...yah its like a leash lol.
The home care nurses have no way of keeping schedules and they never send the same nurse twice so each one is lost as to whats going on. I suppose to be the patient and not worry about this stuff.
I'm not even sure what I will be doing for New Years, probably just sitting at home watching TV.

Thursday, December 23, 2010

Still no change

Had PFT's today at Huronia District hospital today because I refused to go to the cf clinic on their cepacia day. My fev1 has not moved it is still sitting at .87lt. So clinic called me today and want me to continue another 7 days of the iv meds. Then see what my pft's are on Jan 4th when I go back to clinic. If still nothing they will prescribe some different iv meds. Although I do feel a bit better and a little more energy so seems weird that my numbers arent up. I guess just wait and see.

Saturday, December 18, 2010

Fully Plumbed

I had my picc line installed. It now the second one I've ever had. This one seems more sore then the other one. After I had it put in I had to go up to clinic so they can start the meds, that is one rule of homecare that the doctor has to give the first dose before they will touch a patient. They both went well and were some I had once last year. Dr T prescribed Coliston every 12 hours and Ceftazidime every 8 hours. At least for today I have to give all the doses but once homecare and the rest of the meds get here they will have the Ceftazidime on an infusion pump so I wont have to be sitting around every 8 hours waiting for a med to run. I will just have to disconnect and run the colostin in the morning and evening which isn't a big deal really.

I have to go back to clinic next Thursday and have blood work and pfts done to see if there is a change, if there is then I will stay on this combo till the new year,if not they will change it on Thursday.

The last couple of days I haven't felt that bad, I have my moments. Especially when I get a coughing spell and it leaves my chest and back sore.

So hopefully the ivs clean it all up and I get my lung function back up. Gonna hit up physio this Monday at TGH. I didn't go last week cause I was not feeling good and was toying with the admit issue. Monday will be the last one till the New Year. It will be nice to have a little break.

I can't believe only another week till Christmas, two more weeks will the end of 2010. Hell where does the time go? I'm not doing anything for Christmas this year. Its not that I'm being a Grinch about it, first I've really hate how they have commercialized it all and force people to go out and spend all their money on gifts and such, I would rather just have all the family together or hit the road to visit family. I did enjoy the cards I got, they were very nice and funny thing the only cards I have gotten are from my fellow cfers lol. I'm not saying its a bad thing at all!

My mom isn't feeling up to making a Christmas dinner, my brother and his partner are going to his partners moms and then they had invited me to my half brothers on the 27th. But its just too much of a hassle with the o2 and staying over night somewhere so I'm just gonna stay home. Hope Christmas next year will be better and be with new lungs! I also haven't really gotten any New Years plans yet either. Man I suck. I just really haven't been thinking about it, I have enough on my mind lol.

So to all that are celebrating Merry Christmas!!!

Wednesday, December 15, 2010

My clinic vist

Yesterday was a very long day. The drive down was not too bad but the drive home was hell, actually if there was something worse then hell I would say that. I left St Mikes at 4:00 and did not get home till 9:00. It took me a whole 2.5 hours to get from St Mikes to the 401. Damn you in experienced Toronto drivers! There was about 1/4 inch of snow on the ground and they were driving like there was 2 feet. Maybe they should come up here and drive the winter, on roads that you basically don't see the asphalt till the spring.
SO back on track. I did my pft's and they were down which I suspected. They went from 1.04 from last month to .87 so down to 21% lung function again :( So Dr T said it probably means admit, but she said whats with me and Christmas cause its exactly a year since I was last admitted. She said it is a full house and people waiting, said I could go thru emrg but thats a 24 hour wait and she didn't want to do that to me and its really icky down there. Then she said I got have a Picc line put in as outpatient and do homecare. So that is what we decided to do as I have done homecare before and had no problems with it and I still get to sleep in my own bed :) so before she made her final decision she wanted to get some blood work and a chest xray so I was off to do that. When I got back up to clinic Dr T had gotten my chest xray and said there was a little congestion up in the left upper of my lung she said probably from my sore muscles and not being able to clear it. So Friday I have to go down to St Mikes to have a picc line put in and do one dose of iv's up at clinic. Then I can go home.
Another thing she was excited to tell me when she came in was they got paper work from McMaster clinic from a study I had done years and years ago when they were collecting sputum to cuture the different bacterias. They identified the Psuedomonias straighn I have as the Liverpool strain which is the "old" one from back in the 80's She said alot of it was passed around in the cf camps they use to have. She said they have only seen 7 of those strains in patients today so she is happy they have controlled it with all their infection control.
So that is it in a nut shell, I will post again and let people know how things go in Friday.

Monday, December 13, 2010

An update of things

Its still snowing like crazy here in the north country. They still have a snow squall warning up for today and calling for another 20-30 cms of snow ick! I still have pain in my chest and now in my back, almost feels like someone jamming something under my shoulder blade and twisting. I think I have an infection but still not sure, haven't been coughing up much phlegm and when I do its still my light green color. I haven't had much energy, and been getting short of breath. Maybe its just inflammation and irritation in my lungs and pulled muscles causing all my pain and aches. Sometimes I can find that one position to lay where I have no aches or anything and can actually get some sleep.
I called the clinic today to ask for advice, if I should hold off and just come to my regular clinic appt tomorrow or to venture down and go in thru emrg. They said they would like it better if I could just come into clinic. They said that it would be very unlikely that I would see a cf doctor or someone educated in cf in the emrg at St Mikes. So I guess that gives me another day of laying around in my pj's. Not that I really have anything else to do, its cold and snowy out. Ill just watch tv maybe indulge in a big cup of hot chocolate.
Well some of you that read this and are friends of FB seen a post to my status by my ex, it wasn't very nice and I had deleted it. It did have me pretty unhappy that she really doesn't know whats going on lately in my life and figured I was just doing things for sympathy and all the people that commented were only "online" friends and not real friends that I see.
This morning she had emailed me and apologized and I explained to her exactly what I was going thru and that the online friends are my fellow cf friends which in fact I have met in clinic and cause if cf aren't really suppose to "hang out"
I accepted and told her that I don't want to loose her friendship, we did spend almost 9 years of your lives together. So we will see how things go.
I will post tomorrow and let you know how things went in clinic.

Tuesday, December 7, 2010

Time to Vent somemore

Got my mileage cheque today, Was half of what it should of been wtf? I am so tired of calling and bitching at these government workers. Do they not double check their work. The sheet I fill out and send in every time is pretty much the same people! I can't stand living on this social assistance. No wonder why people go crazy and shoot up government offices. I have enough stress already with things going on. On top of that I get a message to turn in my work shirts. That really put a pit in my stomach thinking now defiantly I have no job left. Also comes the stress of Christmas. I'm trying just not to even think about it. I haven't even put up a tree or decorated the house at all, I'm just not into it. The last few nights I have just laid in bed, not being able to sleep, thinking about anything and everything. Its the feeling you get when you just cant shut your brain down. I lay there wondering will my phone ring? I wish it would ring! At first I didn't think all this waiting would bother me. I just try to keep busy and not think about it. Well now each day I think more about it. Worried now the winter time is here and it never agrees with me, will I end up sick and in the hospital. Don't really feel like going out and doing anything cause it means trying to breath in the cold weather and just resulting in coughing my brains out, what fun is there in that? I have worked hard to get where I am today. I truly do not wanna give it up and throw it away but some days I feel like just saying screw it. I try and stay strong and outgoing and high spirited but its slowly running out. I guess in reality only rich and well off people are allowed to get sick and have to take time out of their lives. Us working class just get screwed.

Saturday, December 4, 2010

Winter is here BLAH!

I'm not much of a winter person at all. Maybe if I had some winter sports I took part in. Its just cold and ick, nostrils freezing together. I'm skinny so don't have much insulation for warmth lol. I have lived up in this area now for almost 19 years now (wow where does the time go?) and I have never ridden or been a passenger on a snowmobile. Actually many of my friends don't have one so maybe that's the reason. But I have never had the ambition or wanting to even ride one. Ill stay and drive in my nice warm truck thank you!

There isn't much new, its been 2 days now that I've been on cipro. I'm not coughing up anymore then normal which I guess is a good thing but now I have this pain in the top left of my chest. Not too sure what it is, maybe I just pulled a muscle? So when I do get coughing it starts to hurt. I haven't been getting as SOB (short of breath) but haven't had alot of energy. Hopefully that will pass.

I made fudge the other day but then when I went to cut it up to serving sizes I realized that the nutritional info was all wrong and there was no actual size to go along with the carbs so it was a no go for me....Dan I hope your enjoying my fudge....and no I didn't pack it for you!

I did however buy a digital kitchen scale at walmart for a whole $10 so now when I'm on my candy Bing and doing carb counting I know what the amount is. Most candies give you per piece or pieces but a few I find give you it in grams (40g of mike ikes has 36 grams of carbs) so you cant really count them out but have to weigh them. The one thing im gonna miss the most this holiday season is all the home baking :( unless I have nutritional info I'm not putting it in my mouth! Sure it seems kinda picky but I have had to work hard to get my blood sugar numbers perfect and I'm not gonna throw it out the window, hell Ive even given up beer and liquor :(

Hmm what else is new.... I did go on that coffee date awhile back and enjoyed it. We have been trying to get together again but between my appts,her work schedule and kids its been hard but we will manage. We will see where things go. Well I hope lol.

Which brings me to my next thing, laying in bed and night thinking about anything and everything. I wonder if it is fair to date in the position I'm in now. Like a fellow cfer was telling me I have alot of things going on right now. So wonder if sometimes I'm being fair to the other person, to have to bring them into all this madness and if its fair to them. When dating you suppose to go out and enjoy and explore the world together, go on adventures which as right now down have all the energy or breath for that so usually its something simple and easy going. But as it is she knows all I got thru as she had a best friend in the same position. Which does make things easier, having to educate someone and everything that knows nothing about cf or transplant can get very frustrating and feel kinda uncomfortable doing things in front of. So like I said we will see where things go.

Christmas season is upon us now. I am hoping to find out the physio schedule on Monday for TGH. Orillias last physio is Tuesday Dec 21st and don't reopen till January. Which means for the week and a half I may end up going to tgh for all the physio. Or maybe they are closed too which I'm hoping. I would love to be able to take a few days off and enjoy family. I have been invited down to my brothers in Kitchener on the 27th so would love to go. Which also means possibly arranging medigas to drop a o2 concentrator off and maybe just drag three o2 tanks with me. So we will see how it works out.

I think that's all I gots to talk about right now, time to finish my Timmies coffee before it goes cold hehe.

Thursday, December 2, 2010

Lung infection..I dont need no stinking infection!

Its December 2nd, what does that mean to me? It means now I have been on the waiting list for 3 whole months. My phone can ring anytime now lol.
Ive come down with another chest infection, I don't think December likes me. Come December 14th it would of been one year since I was last admitted to 6 Bond at St Mikes. I am truly hoping I don't have to be admitted. And as I read from my other fellow cfers that are getting sick that its a full house with no free beds. They truly do need a bigger ward. It only makes sense seeing as they are the largest CF center in Canada and I do believe I read somewhere the biggest in North America. Yet so few beds. That almost gets me into another rant....but I will share that later and get back on topic. So at the starting of the week I finally broke down and called clinic, left a message and funny enough they called back within an hour...I was amazed. So I described all my symptoms and the doctor put me on 2 weeks of Cipro (ciprofloxacin) which is an antibiotic. I didn't actually get it till Wednesday afternoon after they finally got the script all sorted out and paper work on billing it to the government. I am hoping it clears it up. Tuesday I didn't go to physio, I barely slept and when I did go to sleep and woke up I had a pounding headache. I just couldn't drag my self to Orillia. I did go today. It wasn't too bad, I had to do a slower speed and not as long on the treadmill. My o2 sats are still staying around 94 with exercise and 8 lts of o2. Everything I've been coughing up is still my light green color so that's one good sign that the infection hasn't gotten in bad yet and changed the color (usually gets darker)
So im just taking things easy, trying to stay out of the cold weather cause that just triggers coughing and then my chest and back get all sore. So basically I have prescribed my self a couch and slippers hahaha.
I have to call clinic back on Monday to let them know how im doing, I do already have clinic booked for the 14th but said they may move it to the 7th. So we will see.

Friday, November 26, 2010

Its kinda creepy

I redid my blog page, added some gadgets to spruce it up. One gadget I added was the adsense by google. They post 2 ads on my page and whenever someone clicks on them I get paid. So far im at a whole $1.35 the last time I checked lol. Anyways whats creepy is the ads, one is for pulmonary tests in T.O. The other is for congestion and coughing. Also seen one for debt management and for the new Jeep grand Cherokee lol. Does google actually read my blog and put ad appropriate ads on?
If so...Hey Google whats up?

Wednesday, November 24, 2010

Kinda off topic but not I guess

Today I had me second Credit Counsel appt. I need to attend 2 of these after I had to go thru a consumer proposal to deal with all my debt. Debt that I could not look after now I am out of work and on a fixed income. So anyways it ended up 2 minutes of talking about that and the rest of the meeting talking about transplant and such lol. The lady was scared cause her partner has COPD (chronic obstructive pulmonary disease) which she didn't know what it stand for so I had to tell her lol. Anyways she was saying how hes gonna have to give up his job as well and get on ODSP. He is gonna require O2 therapy as well. I told her it will probably end up with transplant. Then she said oh hes old they wont give it to him they only give transplants to young people like me. I had to assure her that as long as hes healthy enough and passes the assessment he can be put on the list. That there is alot of older people that come to the pre TX exercise physio.
Then she laughed and told me they don't know what they are gonna do cause they have no benefits or she also mentioned "doesn't that sound good considering im a debt counsellor" Then she was asking me how long it takes to get onto ODSP which she was amazed took so long. So anyways I think she felt a little more positive after I left. I told her if she had any questions regarding transplant and stuff that she can call me lol.
Its weird how things happen and people you run into.

Tuesday, November 23, 2010

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 :)

Saturday, November 20, 2010


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:

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.

Friday, November 19, 2010

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.

Wednesday, November 17, 2010

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 :)

Thursday, November 11, 2010

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!

Friday, November 5, 2010

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.

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 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.

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!

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 :(

Thursday, July 29, 2010

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

Tuesday, July 20, 2010

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.

Friday, July 9, 2010

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.

Friday, July 2, 2010

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.

Wednesday, June 30, 2010


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!

Wednesday, June 9, 2010

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!

Sunday, June 6, 2010

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?

Thursday, April 29, 2010

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.

Sunday, April 25, 2010


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!

Friday, April 23, 2010

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.