COLD

oh also...how cold is it today? Way to cold, right? Fall and Winter are coming, and I am dreading it. I went to the thrift store today and bought a wool coat today in preparation. brr.

I hope I get to jet off to Barbados in November. I was talking to a woman at CF clinic yesterday who does triathlons for a living! Crazy eh. Turns out she lives right near me and even bikes past our house. She even swam at the same pool as me, when I used to be on the swim team. Crazy small world eh. She and her husband go to Florida every year she says, simply because the cold air is just so much worse on her airways, so she needs the warm air for three months of the year. It's just a life style choice they have chosen. She also thrives off of the heat and the salt air, which is what we have found with Barbados. I just seem to do so much better down there. I guess it's just less harsh, the warm air on my lungs, then the cold, and the salt air helps me cough up all the junk.
I hope it warms up again...we barely had a summer, and now fall is upon us, and my little body is freezing already...as my boyfriend says though...at least the leaves are lovely! haha

"oh my gosh...she's healthy...relativly speaking of course"

well i did it gang! I was at clinic on Tuesday and FINALLY got the a okay to come back in three weeks, instead of my weekly visits! YAY go me. My white blood cell count is down from 15 last week to 13 this week! meaning the guys who fight infection are going away, meaning the oral antibiotics are working, because i don't need as many little men out fighting in my body. GREAT NEWS. Also My liters went up to .81 my weight is stable at 53.7 kilos, and the best news of all I get to drop from 12 mg of prednisone to 11.5 mg of prednisone. Sooo hopefully soon my chipmunk face (due to the meds) will disperse! haha

Also this saturday will be my three month anniversary of working out three - four times a week for 40 minutes on the treadmill! My dad said he would get me an eliptical trainer for the monumentous day! haha

I really think working out has helped so much. Today for the first time I was able to decrease the amount of oxygen I normally use from 6 - 8 units to 4-7 units of oxygen. Woo. In the last three months I've been able to increase my lung function by 4 percent, from 19% to 23%. My goal is to have .87 -.90 litres by christmas!

So all in all a great day...oh except for getting a letter in the mail about my colonoscopy. That was a major bummer. Since CF's already have digestive problems, and are more prone to colon cancer then most, and since I have a huge family history of colon cancer, My papa died from it at 60, and my mom's first cousin died from it at 48, the clinic thinks it's a good idea, especially since I'm pre tx (transplant) that we get one done.
Anyways a colonscopy sounds awful, you have to drink 8 liters of fluid to clean yourself out and two days before the test stop eating, clear fluids only...excuse em moi??? I don't think so! There must be an easier way...
On another note, My mom went out for dinner with some university friends, and I made my brother and myself a GREAT pasta dish, zuchini, red peppers,sausages i even put spices in it, okay he directed the spices, but still, i cooked it all and it was yum yum yummy. Isn't it funny how into food I am lately? Prednison drug is so weird.

So the orals, septra and levoquin seem to have worked. Even my blood sugars are soo much better, as I am dipping low with my normal amount of insulin so I am now requiring less of it. My cystic sista told me that orals antibiotics work for her, if she catches the infection before her lung function drops, which is what I was able to do. My lung function had not dropped yet, and I went on orals, and it seems I was able to kick it! Still have the picc line in though, but maybe in three weeks times I'll get it pulled. I'll post more about the eliptical trainer. Does anyone have any advice on which one to get? There is one on sale at canadian tire. Any tips??

Update

my back hurts, my belts to tight, my hips shake from left to right!
no...but seriously I have little back aches, where mucus plugs are rubbing up against my tender lung walls, and going ouch ouch ouch all over!

I started oral antibiotics yesterday to try to kick this infection in the butt before it turns bad.
Luckily clinic went kind of well...i am completely stable again this week with my lung function, despite having an infection, it did not decrease! Also my weight was up again another pounds! thankfully i guess all that walking on the treadmill, the weight has now evenly distributed throughout my body, and it no longer resides around my mid section looking at if I have an unborn child of 6 months! 17 pounds in 6 months I guess takes awhile to distribute itself evenly! haha
so hopefully the orals will kick this infection in the butt, and I won't have to go back on IV, which is good because i'm just too busy to be going on IV...I went to a networking meeting put on by some fellow university students who did the same entrepreneurship program that I took this summer. They did a really good job. My mom being the social butterfly really got a kick out of the whole evening and as she says "hasn't lost her touch for networking". haha

I'm also going to a clothing store for three days doing a trunk show at Body Graphics this weekend. So i'll be busy with that! Farmers market is tomorrow with my jewellery. There is no rest for the sick! I had been staying up till 2 in the morning, prednisone seems to take effect at 3 in the afternoon and 11 at night giving me a false high energy so I stay up late. Anyways the boyfriend has been insisting I go to bed earlier, which is a good idea, since I do have an infection....it's just hard when all this energy is pumping through you right when your suppose to be going to bed!
The last few nights I've been able to be in bed by 11:30, asleep by midnight, although the dog and cat both woke me up last night around midnight to tell me they wanted to sleep in the apartment with me.
oh also i went to the a vintage store today, fantastic. Scored a great little floor lamp. It is still dark by my dinner table, so this will lighten it up!
Also good news, I have already worked out twice since Monday, and i still have four days left in the week. I really think exercise plus this extra weight on me has helped me able to maintain my lung function and hopefully soon it will start creeping up!

definitly sick...

ugh. I woke up this morning, and my blood sugars were 8mmol...they have never ever been that high fasting before. Sign of an infection. Plus I am coughing so much today, and way more mucus. other signs of infection...I guess on Tuesday the IV drugs will start...bummer.
Good news, I got on the treadmill this morning and was still able to work out for 45 minutes...it was a lot harder then most days, but I still did it! Three days this week achieved. woo
Bad news.. I just don't really feel like socializing, you know when you get an infection and your just tired...and don't want to socialize, because socializing does take effort sometimes...well I had a wedding shower to go to today, but I just couldn't do it. I'm just too tired right now... These lungs sure know when to pick a good time to have an infection...although when is ever a good time to have one? I guess it's better to get it over with now, so hopefully I can scoot off to Barbados when the drugs are done. I wish I had never caught that summer cold! Maybe then I wouldn't have this infection. what bad luck eh?
I hope it won't be another ten weeks on antibiotics...oh gosh. oh well, this time we'll clean me out good. I have extra weight on, I'm working out. This time will be good.

showers....who would have thought

soo before you turn on your shower the next time fellow CFers....check out this article that a friend sent me last week. Click here for link to story. or copy and paste this into your browser. http://www.cbc.ca/health/story/2009/09/15/showerheads-bacteria.html

It's a whole article about how there is a bacteria that can grow in most shower heads, so we definitely don't want that in our lungs. moral of the story, let the shower head run a few minutes before you get into it, and also replace plastic shower heads with metal ones, as it's harder for the bacteria to grow and multiple on metal shower heads.
We are just re doing my bathroom in my apartment now, so I am definitely going to get a metal shower head.

I also think that I may be getting another chest infection. Sigh....just in time for my New York City trip...these bacteria of mine in these good ol' lungs sure know when a good trip is coming up, cause they don't want to miss out, so of course they decide to go bonkers and start acting up...
My blood sugars have been 7.4 -7.7 in the mornings, usually they're 5.8mmol. My white blood cell count was also up at clinic on Tuesday....all indicators of an infection. At least I still have the picc line in, so it'll be easy to re-start IV antibiotics if I need them. One point me...We go down to clinic again on Tuesday so we'll see what they have to say then.
I didn't get on the treadmill today, I wallpapered in my kitchen and did laundry and went to a garage sale and started working on my apartment bathroom with my dad instead....I know, I know, slap on the wrist.
My bathroom needs a lot of work.We were able to get the new taps working, and the new sink dropped into the cabinet. My dad is super man...seriously...no joke. He is an electrical engineer, so he knows everything there is to know about computers and yet he still is mr. handy man and is re doing my bathroom for me, hooking up all the plumbing, etc. I hope my dad has passed the handy man (or woman) gene on to one of us kids, so either I or my brothers are able to fix everything when we're older.
I had to turn on the apartment gas fire place today...it was just tooooo cold.
Anyways I have to wake up at 8 tomorrow to fit my work out exercise in! I'd better get off this computer and go do a mask! send out positive thoughts, that I don't have an infection...it would really be a bummer if I had to lug my IV pole and drugs across the US border...maybe it would be quite comical though...a bunch of kids in their 20's crossing the border with a pharmacy in the trunk...sigh...the life of a CFer. haha

where do all those lungs go??

Warning this post is a bit morbid...so read with caution.

so me and my cystic sister were talking tonight via msn and she asked "where do our lungs go" (after the surgery before they put the new ones in...where do our olds ones go?)
She wants hers donated to science...I definitely would want that too...but I wonder if they just compost them? I wonder how old and decrepit they are after they take them out...I picture the lungs being taken out of my chest and them being disintegrating in the surgeons hands, like powder, falling apart...is this too morbid to read? maybe they just compost them with all the cafeteria waste or something for the hospital gardens? ick. haha but seriously...what do they do with all of those old lungs?

Anyways I had clinic today, I am now down to 12 mg of prednisone, and I am getting burned by the sun so badly, which I just found out today is from the steriod...they did not warn me to be careful in the sun, and I was out for five minutes this weekend and presto burnt up like a crisp. My skin is also really sensative...it's super thin from the prednisone, and I keep getting all these cuts where my skin just peels away and almost has boils, yet not...one of them looks like someone took a cigarette and burned me on my leg. ouch...is this too much information?

My FEV1% is stable at .80 liters and 23%. I have upped my pulmicort to 4 puffs twice a day and 2 puffs once in the afternoon...to try to combat my shortness of breath from dropping the pred. I wish there was some sort of natural anti - inflammatory that I could start taking...or eating...or doing, because inflammation seems to be my biggest problem.
Also I gained another 2 pounds in three weeks. I am not even trying anymore, and the weight just keeps on coming! I am now up to 118. Back in February I was 103...such a little waif. My goal weight is 120 at 5'4...unheard of, for me having CF! I think this extra weight is really helping me fight infections and colds though.

I went to the health food store and stocked up on vitamin C yesterday. I head up to my university town tomorrow evening for a concert at a local pub. I am so excited. I miss living there. It will be great to see everyone who is still there. I tell ya though, I am not missing going to school. I am loving working on my business, and apartment, and doing more 'me' things. I don't know how I ever had the time to go to school! I seem so busy! haha

Up Next...New York City baby...16 days and counting.

How to: React to a coughing Spasm

This is a post by my cystic sista 'Laby'. Check out her blog, click here, but here is a snid bit, which I thought was really great...because it's all wonderfully and fantastically true.

Posted by Laby:
If you know someone with CF you are guaranteed to experience the potentially awkward situation of being rudely interrupted by a coughing spasm. AKA a string of coughing that does not seem to come to an end, effectively turning one’s face a shade of colours ranging from red to purple, robbing them of air and the ability to speak. Sometimes they last a few seconds, usually they are a few minutes, sometimes they happen rarely and other times they are a common reoccurrence. In any case, they are sometimes scary to an outsider, but usually the person having a coughing spasm is simply annoyed—especially when they occur mid-conversation (don’t they always seem to come on right when you are dying to say something?) or after laughing at something extremely amusing. So to our spasm-less friends, here is some advice on how to react to a coughing spasm:

Do Not:

Ask if I am ok while I am having a coughing spasm…
Although you mean well, quite frankly you will most likely (a- not even get a response because I am too busy coughing or (b- get a nod of ‘yes’ anyway because that is the only thing I am able to do. In fact, it is best to avoid any sort of questioning during this time period.
Side note:If you feel compelled, ask me how I am after. My answer will be “fine” 99.9% of the time though, so you might get bored with my cut and paste answers.

Pat me on the back
Contrary to popular belief, patting me on the back will—if anything—irritate things more. Not only that but it makes me feel infantile—the only thing missing is the burp blanket. Keep in mind I am not choking on a chicken bone or anything (beside my own phlegm… TMI?) and the coughing is already helping me out enough. Save the extra physio for later!

Shove and/or offer me water
One of the first questions I seem to be asked when I have a coughing spasm is “Do you want a glass of water?” to which I croak out “No.” It is kind of difficult to drink a glass of water while you are busy gasping for air. If I were to attempt such a task, it would probably make things much, much worse. However, sometimes a glass of water following a coughing spasm can be nice.

Say Robitussin
You are a tool. Enough said.

Make a joke along the lines of “you should really give up smoking”
I’ve heard it before; fresh material is appreciated.

Do:

Keep Talking
If we were having a conversation, by all means keep it going, even if it means creatively continuing a one-way convo for a short amount of time. Feel free to talk louder and OVER my incessant coughing. Nothing is more irritating than having a coughing spasm hijack a conversation.

Stop Walking
If I start having a coughing spasm while we are walking, stop with me. If people continue to walk, I find myself trying to keep up while I am coughing—this just exhausts me and fuels an even longer spasm.

Offer a Kleenex
For those who carry around kleenex, you are convenient. When you are coughing and need a kleenex (even if it is just to hide your face) it is so hard to search through your purse or pockets for one. Sometimes you really just need it shoved into your hands for you.

So there you have it! Of course not everyone is the same, but I think if we compare notes a lot of us CFers would have a similar list.

Goodbye summer baby...

Summer is ending...It will be weird not starting classes with everyone tomorrow. Everyone is going back to school...but not this girl. I'm taking the fall off from university and just....being. I'm going to focus on traveling, (I already have one trip to New York New York booked), family, friends, and of course EXERCISING! I had my two month anniversary on September 3rd, of working out 3-4 times a week.

I also think I've managed to kick this nasty cold I got. I started using tea tree oil 2-3 drops in a bowl of boiling water and inhaling the vapors (keeping my eyes squeezed shut, that stuff is potent).
I looked up tea tree oil on the net, and it says it has activity against MRSA and staph bacteria, both two things I have grown in my lungs in the past. I also started taking vitamin C and made sure not to miss a single dose of my TOBI masks. It's been one week and one day since I woke up with a sore throat, I am hoping that if it was going to go into my chest it would have by now. 1 point me, 0 points virus.

I also just looked up how long I have had my picc line in...are you ready for this kids...4 MONTHS! I got my picc line in and started IV antibiotics on May 19th...wow. I cannot wait to have this thing pulled. My skin is so sensitive and raw underneath the dressing...ouch.
I've been off IV and oral antibiotics since July 28th, and still going strong.

I spent the last week of summer up at my cottage and my boyfriends cottage. We got the best weather. It felt like what normal July weather should feel like. I still have my picc line in, so i grabbed my showering "arm", a rubber air tight sleeve I got from the internet to use when I shower and put it on and floated in a tube on the lake...
It was heaven. A Wednesday afternoon, no one is around anymore in cottage country, the lake was to ourselves, it was 30 degree weather...sometimes life throws you a little perfection, and it's all you can do but soak it up.

More then half a million....

I just found out what it costs in the US if you want to have a double lung transplant...just for the operation alone, it costs around $550,000...this doesn't include any of the pre transplant doctor or rehab appointments...or any of the post transplant appointments. wowzer. Thank gosh for free health care. Go Taxes.

I got on the treadmill today, after an inspirational 'pep talk' from runsickboyrun.blogspot.com, despite this awful sore throat I have. I could only go on the treadmill for 35 minutes today, I just could not breathe deep enough in my lungs...sigh. it was the worst. this virus is already making me short of breath and it hasn't even moved into my chest yet...tricky little thing. I really hope I can just kick it. My cystic sista is not online tonight, so no 2 AM late night chatting, haha, which is good I'll get some rest to nip this cold in the bud! Farmers market tomorrow, so I'd better rest up.

Sick...

I woke up with a sore throat yesterday and today it is worse! AH Can you even believe it. I have no idea where I picked up this bug. I hope it is just a sore throat and that I can sleep and drink it off with water and apple juice. It sure hurts though.

It is soooo important for me not to get sick. Any little cold could send me back into the hospital.My cystic sista got a common cold last fall and ended up in the hospital for three months and on oxygen 24/7....soooo please if you are carrying around any sort of virus, don't come near me! Even if you think your getting over the cold, please don't come near me until you are 100% symptom free! If anyone is carrying a virus around, I can't see them. It is just too risky for me with my little low lung function. Come this fall, I am quarantining myself in my aparment. My little brother is going to univeristy and living in residence so when he comes home he is going to be a ceast pool of germs...thus I must prepare the defenses...stocking up on cold fx, and vitamin C.

I went searching through the house last night to try to find some cold fx when I knew that for sure it was a sore throat and i only found two pills...and i'm stranded all day without a car to go out and get more. ugh.

I watched a video on a fellow CFer's blog, run sickboy run "Just Do It"...about exercise, and today I wasn't going to get on the treadmill, I did 45 minutes yesterday, but after watching the video, I thought to myself, emmm no I will get on the treadmill today despite this nasty little sore throat and feeling like just lounging on the couch and drowning my soreness in ice cream. Even if it's half the work out, i will "Just Do It".