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!!**

The past few days have gone by really quick!

It's Sunday afternoon and I'm just finishing up lunch from my room in 6 Bond. I am happy that I have a private room, washroom, HUGE fridge and possibly a flatscreen tv being installed today... hello jackpot, nice to meet you.

The doctors decided it was best I do IVs in hospital, and I disagreed at first. Even sitting here when I was admitted on Friday I started questioning if I really needed IVs or not and my mom was quick to point out that I was suffering from denial. I denied that. But come Saturday morning and I had reclaimed my throne as the fever queen. Chills, sweats, headache, throwing up, low sats (measures the oxygen in your blood)--you name it, I had it. So I GUESS I was in denial...

The resident came in this morning and confirmed that yes, I do have a chest infection and I came in at the right time. My CRP, which is used to measure inflammation, is 30 and the normal range is around 5, while my WBC (white blood cell count, which can indicate infection) is actually only 11, and 'normal' is around 10 and under (mind you mine usually hovers around 7).

Today I am still battling the fevers. They seem to come on in waves, but so far I have not needed to take Tylenol to lower it--a good sign. Another plus, my shortness of breath is a world better compared to yesterday. Yesterday morning I felt like I ran a marathon just from rolling over... today I am going to walk back to my apartment at Church and Gerrard (about a 10-15 minute walk). May as well take advantage of feeling good, because there is no such thing as an uneventful admission, things seem to change from hour-to-hour!

I'm grateful I listened to my gut and came in when I did... I'm even more grateful that my apartment is close by and I won't have to go long without a shower like last time!

So remember that time when I said I will "kick this cold's butt"? Well, it beat me to the kick.

I woke up with a tad of a fever yesterday morning (and a grotesque swelling under my ear to boot!) so I decided there wasn't any harm in going to clinic (since I literally live down the street) and making sure everything was A-ok. Here's what I fully expected: pfts: the same, weight: slightly down, follow up: keep an eye on yourself and come back in a week. Dandy.

Unfortunately this hypothetical scenario did not pan out at all. My weight dropped a tad and my pfts took a dive from my usual 27-28% (.80 L) to 22% (.65 L), which is the lowest they have ever been, and this includes the time I was oxygen dependent. A scary number to see, but at least I don't feel like my number.

Initially the doc discussed doing orals antibiotics (the same ones I just finished two weeks ago). But I looked at my numbers and told her that I felt I should go directly on IVs since a- 6% is a huge drop for someone with low lung function and someone who has been completely stable for over a year and b- once my pfts drop, I rarely gain them back with a course of oral antibiotics. She immediately agreed and we are planning either a brief hospital stay followed by homecare or (more likely, since there are no beds) directly going to homecare.

I ended up feeling much better today (which messes with my head!) and considered bailing on IVs altogether. But I think those numbers alone are enough of a reason to go on IVs.

So that's the action plan! Time for a tune up. I'm very fortunate that my internship has been very understanding and I can do a lot of my work remotely (yay web internships!). Let's hope for a brief and successful course of IVs!

P.S. NO this is not sympathy lung symptoms for H. Although she tells me that mimicking can be flattering lol.

Welcome to my monthly update!

I think it's fair to stress that a lot has happened in the past month, but most of them are good things.

1. I finished school (until the fall... three more courses, woo!!)
2. I got a great internship at CanadianFamily.ca 
3. I moved into my very own bachelor apartment downtown (until said internship is complete)

Needless to say, I'm pretty thrilled that these pipe dreams that were once only scrawled on endless to-do lists are finally getting checked off!

I'm now into week three of my internship (wow, times flies) and work-wise, I'm loving it. Lots to do, great atmosphere and great people. But as you know, CF likes to throw you a curve ball from time-to-time and I did catch a cold (which is relatively mild, but still exhausting.) Unfortunately for me, I'm the type of person that likes to commit to something 100%, so it was hard for me to take a sick day (actually one and a half sick days). However, at the same time I'm 100% proactive, so taking a few sick days is peanuts compared to getting worse.

I'm not sure if this is CF-related or not, but the past few times I've had a cold I've had pretty annoying ear problems (swollen balloon-like feeling below my ears that alternates from one ear to the other) and I always get a mild fever. According to aboutkidshealth.ca this is completely normal... in kids. So I guess I am truly still young--very young--at heart.

In any case, with lots of rest and increasing my physio to four times a day, I'm sure I can kick this cold's butt and get back into fully enjoying my internship and downtown high-heel-strutting (yes, I strut... ok, maybe in my mind only).

Another VERY important thing (notice the bold?) that has happened this month is that my cystic cysta, H, has decided to be listed for a double lung transplant. It's very scary and exciting for her (and me, because I'm also so freaked and excited for her!). She's had a tough couple of years and it's about time she gets a break, gets her life back on track and continues her full-speed ahead, energetic way of life. In a way it's so weird that we went though all the steps together (having our assessments only 1 month apart, getting referrals around the exact same time) and now she'll have to lead the way. But I told her she is a trailblazer and she does it well! I'm excited to see what path she takes. Meanwhile, please send postive vibes to her--because you can never get enough.