I recieved an e-mail today from the CF representative that spoke at our fashion show fundraiser. Apparently, he and his wife were talking and realized that I was the little girl who did a national campaign with their son benefiting the Canadian Cystic Fibrosis Foundation.

I remember doing this Frightlite Campaign years ago (I think I was 12 or 13?). I was the oldest participant, so I suffered from a lot of wounded pride. For starters, they made me wear makeup and I HATED makeup, and I felt a tad ridiculous in my costume. But anything for the cause right? Besides, I think I was pretty agreeable for a preteen. (side note: years later, I fervently ushered friends away from the poster... which kept popping up at Great Strides walks, leaving me red-faced).

The little lion (who I actually now recall was soooo into the shoot) is now 16-years-old and the cute little princess unfortunately passed away a few years ago after receiving a double lung transplant in her teens.

 

I realize that, yet again, I have not written in a while, but I apparently have commitment problems. More importantly, I have been doing far too much running around to stop and give an update... is this a sign I should be hiring an assistant?

This update is prompted by my clinic visit yesterday, which went FAB. My bone density increased-- though in the words of the nutritionist they are still "pretty crappy"--but, I'll take it. Unfortunately I wasn't really aware I was due for my bone density scan and decided to wear a skirt to clinic... and I was also blessed to have an old man do my test. The test involves laying down and resting your legs on a raised block--you get the picture. It's a good thing I'm not bashful and I was wearing shorts-style (like shorts) undies...and I was avoiding eye contact. 

Moving on, my weight didn't drop as dramatically as I thought. But my BMI is still hovering at a pathetic 17, even though my mother witnessed my beastly appetite yesterday (brie sandwich and sweet potato fries for lunch... prime rib for dinner). I'm really an anomaly.

The best part of clinic is my PFTs are finally back up to baseline, 28% (.81 L) from 25% after my last admission.

So, clinic was basically social hour for me yesterday. I saw two nurses that I haven't seen in a while and my physio therapist (not to mention Dr. S... but that was for a fleeting moment, since there wasn't really much to discuss and she had sicker patients to move on to). 

One of the nurses A, who I haven't seen in years (except for in the hall), sat down with my for a while and did a pretty thorough review of how I've been since my last appointment in June. She actually has not sat down with me since I got sent for my transplant assessment one year ago (as of this week!) She shared a few stories about people who have been able to stay off the transplant list for 4 or 7 years after their initial assessment and it was pretty inspiring!

Maybe I can join their ranks?
     I won't get ahead of myself...

I'm not quite sure why I've been so lucky so far (*knock on wood*), but I'd like to think that I can take some credit. I run a pretty tight ship! 3 nebs a day, 3 physios a day, lotsa walking (though I'm hoping to work on strength training), lots of support and good food, and always looking for new things to keep motivated and busy-busy (maybe sometimes too busy, which I'm learning to deal with). Now that I'm starting to sound like I'm going to go on a rant, let's dial it back.

What Have I Been Up To?

• The Fashion Show planning has been going well, everyone on the committee is great--H has really brought a great group together! Next Thursday is the BIG DAY. I've been working on a little bit of media stuff and our program for the night!
• My internship came to an end at Canadian Family at the end of July and I've been on vacation since then. I've been exploring Toronto a bit more and I took a three day trip to Montreal with a friend from Uni. 
• I am also packing up my apartment, since I am moving this Sunday back to Brampton. It's been a slice Toronto!

I'll just come out and say it, I'm not a fan of the ran. I enjoy watching fantastic lightening storms from my bedroom window (esp. the first one of the year, when snowstorms have ended their shift), and the pitter patter of rain drops is a soothing sound, but my lungs hate rain. My version of singing in the rain involves high-pitched wheezing as I walk through the soggy streets of Toronto. Last I checked, this type of pitch would not be appreciated by none-tone-deaf ears--but maybe the tone deaf would approve? There is hope yet for my 'singing' voice to be praised.

Today it took 30 mintues for me to walk to work, it should take 15-20. In part, I can blame the rain, but a quick scan of my bookbag will identify other factors. Starting with the fact that I packed a lunch: 1 lb? Planner: .5 lbs? Wallet: 1 lb? And I carried a tea mug AND umbrella. It doesn't sound like much, but it adds up, and my lungs don't appreciate the resulting sum.

So how do I fix the equation?
For starters, I love my tea mug, it's ceramic and pink with white polkadots. I feel wrong when I drink tea from a plastic or cardboard cup...but carrying my beloved ceramic tea mug has become too much. I haven't used it in weeks, but now that I have (and have experienced the arm pain??), I realized that it can no longer travel long distances with me--at least until I get my strength up again. But I came up with a solution (there is always a solution, no?), I will leave it at work and make my tea there every morning. Easy as pi.

Another adjustment? I have downgraded my purse size. When I went shopping in Buffalo on the weekend (spending an exorborant amount of money on clothes for work--completely necessary), I purchased a wristlet wallet from fossil (like the size pictured below). This is in contrast to the huge red purse I bought in the Fall, but I love the design and I'm happy to no longer be the person guilty of knocking people over with my giant purse/weapon. Now I just use my pointy elbows.

Fashion Sidenote: I'm in love with Fossil purses and wristlets. In my opinion, their collections are way nicer than anything Coach has to offer. I have visited Coach quite a few times and have never seen anything I would want to purchase and I never understand why it is so crowded... maybe I don't get it? Someone please explain? Until I DO get it, I direct everyone to Fossil. Better quality, nicer designs, and better prices**in the factory store... lol**... but that's just my opinion... so it's probably right. *ahem*

I am officially 'free' today! I had my picc line pulled (which is like a giant iv--I had left it in to make sure my infection was completely gone). Which means I can finally shower, stretch and wear a jacket with ease!

My pfts dropped slightly from 27% (.80 L) to 25% (.73 L), but I'm feeling great and have no infection symptoms, so we decided I was done with IVs. Apparently I'm a little bit of a wheezebag,  so we've increased my dose of Oxeze (like a ventolin puffer) to help me out. We're hoping the slight drop in pfts is just due to leftover inflammation from the infection.

I also have to start eating more (still). I somehow lost 1 kg in 2 weeks...gross. Some people would be happy to have their weight just melt away with ease, but I'm not so impressed. Haagen Daz round II, here I come! 

Today, hopefully (and probably) is the last day I will have my PICC line in. Tomorrow I have clinic at 8:30 am sharp (the way I like it) and I will review my pfts and make sure everything is a-ok before getting this lovely contraption removed from my arm. Showering is about to get a whole lot easier.

In the meantime, I have improved immensley over the past week. It's quite shocking how much better you can feel after getting used to being 'ok' for so long. My treatment times don't take near as long (they were taking close to 2 hrs each before IVs... that's 6 hrs a day), I'm actually hungry a lot (and I can pack back a lot more food) and my energy is waaaaaaay up. This last point is particularily useful becuase I've been a busy gal. Not only am I still enjoying my internship at Canadian Family, but I'm also working on a fashion show fundraiser with a group of fabulous girls (including the director of the whole thing, H). The funds raised at this event (on August 26th) will all go to the Canadian Cystic Fibrosis Foundation. The event is already going to sell out, so we're pretty excited about that!

H and I are also hoping to devote the summer to raising awareness about Cystic Fibrosis and Organ Donation--that's where I come in. I'm trying to reach out to any media outlet available so we can spread the word. I also tried to simultaneously put up our website, which is very bare-bones right now, but then I realized... hey, I'm not superwoman. Maybe I do suffer from the prednisone side effect of mistakenly feeling godly. So we're hoping to find a designer (we may have found one, hoping she pulls through) that can just use my photoshop sketches and content to build the whole thing on Dreamweaver. I realize all this may sound like mumble jumble to some people, so I'll translate: Dreamweaver is a program that sucks the life out of me, so I want to pass it on to someone else.

I also suffer from hyperactive inspiration. I will literally be sitting quietly (well, never quietly, my mind is always racing or daydreaming or doing something wacky) when I am suddenly inspired and the ideas just start pouring out. Anyway, all this means is that I really enjoy working on this with H and a great group of girls. Girls who are equally as inspired and insane as I am, so I don't feel so bad in retrospect...

Stay tuned!

I was settled in for a quiet night, ready to go to bed early, when I decided it was time to flush my picc line (you have to push saline through it once a day to avoid getting a blood clot). I still have my picc because I decided to leave it in for two weeks to make sure I'm infection-free.

First, let's flash back to yesterday... I was discharged in a rush and forgot my heparin (which thins your blood slightly and prevents clots). I thought "no big deal" since I have a power picc and even brushed off my cystic cysta, H's, warning. Well, come 9:30 tonight, when I attempt to flush my line... nothing happens. I figure it is a fluke, wait a few minutes and try again... nothing. I attempt to draw back blood (which is what you are supposed to do)... nothing. I move my arm around and try coughing...nothing. By five flush attempts in and 30 mins later, I call the ward...

So folks, 12 hours after leaving clinic and just over 24 hours after being discharged I take a quick cab ride back to the ward, say hello to my cleaning staff buddy and pop into the ward. The nurses flushes it with no problems within 5 mins. I feel like a complete idiot and leave.

What happened? Well, either my arm needed to somehow be completely straight... or she just pushed harder... In the wise words of my friend E, we can cancel the wake. I'm alive.

And that, my friends, is how you cap off a fabulous day.

Goodnight.

Well, who would have known, there is such thing as good surprises!

Today I went down my clinic appointment at 9, it was supposed to be 8:30... but since I was up until 1:30 finishing IVs, and just had NO willpower to climb out of bed. I was ready for the big moment: pfts. The ultimate verdict. And to my surprise, after 10 days of intense physio, IVs, stationary bike (and eating out?) they were back up to 27%! (.80 L)

Dr. S immediately saw I was relieved (and maybe thankful I finally believed her? haha) and I was in and out of clinic in record time. To top it all off, my only disappointment about being discharged early was that I was not able to get my strength training program from E, the physiotherapist. Well, luckily we ran into her and she was able to show me the whole thing in clinic!

Shortest and most successful IVs ever. All this called for celebratory shopping and brunch. Time to resume the summer!

It's hard to distinguish what counts as "home" lately. When you are in the hospital and out on a day pass /get out of jail free card, going "home" means going back to your hospital room. Downtown this summer my "home" is my apartment, but for now--in my limbo days between IV and no IV--"home" is back at our family home.

Today, quite quickly, I was discharged from the hospital. Last night, when I got back to my hospital home after spending the day at our family home (see how confusing this gets?) for a nice bbq, I was informed that Dr. S was looking for me and there was word of being discharged. So, around 11 pm I phoned Dr. S to see what was up and she said she had a really sick patient that needed a bed and that I was closest to discharge. Of course, I didn't really have a problem relocating to another version of home, since I've been on the other side--so sick, waiting for a bed--and it's just not fun at all. Plus, quite frankly, since I have improved immensely over the past week, I didn't want to stick around in a place where I could pick up something and start the cycle all over again.

You'll have to excuse my lack of updates over the past week, but I've been keeping quite busy. On Monday I had my PICC line insertion, which went the same as usual, as in it took two attempts. So far 1 out of 4 have gone in on the first try... my odds are going down. For this reason, I'm leaving this baby in for another two weeks to ensure I do not require IVs any longer!

A little side note: Unlike the PICC in the link above, mine is actually closer to my armpit... maybe a little too close this time. I also learned during this procedure that apparently veins just collapse and disappear... they tried going through the same vein that I had used last year, but it just didn't continue... it was permenantly gone? duh duh duh

The rest of the week kind of went by like a blur, I started the exercise bike and physio every afternoon and I was hooked up (what seemed like) most of the day. When I was free at night I went out for dinner and a walk. Walking and cycling got easier halfway through the week, which is great progress. The first day on the bike I was dyinggg, pouring with sweat, panting like a dog and my heartrate was climbing quickly. By the third day I was able to cycle comfortably and even turn up the resistance and my heartrate behaved normally for once. I don't mean to bore you with the details, but this all means very quick improvement. When I was admitted I needed 02 for just getting up a walking a few steps, and now I don't need it at all (except exercise still).

They wanted to stop my IVs today (day 10) before I did pfts and then follow up in a month...but of course I refused that--I had a knot in my stomach and I didn't really think that was OK. For starters, I haven't done a mere 10 days of IVs since I was... um 9 years old? 7? I can't even think that far back! Additionally, I don't feel comfortable ending IVs without knowing my pfts. Apparently a 6% drop is not a big deal... which I odd because I was under the impression dropping from 28% (.80 L) to 22% (.65 L) was a big deal... so I guess we'll see what tomorrow brings! But I will fight for that 6%, because it means the world to someone with low lung function even if I'm doing amazing clinically.

Sometimes CF is just confusing!

To be continued...

Not too much to report, at this point it is very much a 'wait and see' period. Wait and see if these drugs work, my lung function improves and my oxygen dependency decreases. And hope that all of the above does not take too long, because I have plans to get back to!

So far my appetite is slowly creeping back into existence. I was able to go out for lunch today (at a nearby 50's diner--very cute!) and actually FINISH a meal. Go team. Yesterday I told the RT (Respiratory Therapist) about the horrible headaches I have been getting from walking and she re-evaluated my oxygen. Well folks, by the time I walked down one small stretch of the hallway it was apparent that, yet again, I need oxygen for walking. The "Hulk" which is my nickname for the giant 02 tank, is now standing guard beside my fridge waiting to assist me. I'm grateful that it helps, but it really does not match my outfits at all and it weighs almost as much as I do. So I'm not too pleased about the return of 02--you can call it vanity or call it not wanting to scream out "Hi world, I have lung disease". But on the upside, I do not need it at rest. My sats are at exactly 90 (below that, they put you on 02), and I'm not feeling short of breath.

I've been keeping really busy with physio. Currently I'm doing it four times a day to help move things along. I do my PEP mask (a mask that puts pressure on your lungs as you breath into it) three times a day, and once a day my physiotherapist comes in. She's really enthusiastic and always gets me motivated again!

Right now it feels like everything is just stuck. In fact--this may be too much information, but I just had a legitimate 10 minute conversation with my nurse about phlegm, so all lines have been blurred--my phlegm is so thick that I just gave a sputum sample and it actually just stuck to the bottom of the cup. I turned it over on all sides out of curiosity and it just would not budge, I even tried tapping against the cup and it still would not budge, and this was after hypertonic saline (which is supposed to thin out the mucus and make it easier to cough up). Well, at least I know what I am up against!

My mom brought me some tulips today to brighten up my room, and I think they really do the trick! She also bought another bouquet for H, who is just down the hall and had a rough morning. My (or, rather our) nurse, Rachael delivered them for us, since CF patients and their visitors cannot have any contact (we can spread nasty bugs to each other).

P.S. Update on flat screen TV: Well, turns out they just re-installed the old, ugly one! My situation quickly turned from jackpot to jipped. In a cruel twist of fate, the two people across from me had flat screens installed...please.

**OK so today I tried to do physio three times a day instead of four... totally suffered...bad idea!!**