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.