The lungs have settled, they know how to behave and bob playfully between the range of 25-28% without anymore than the usual supervision. But my stomach is not so settled. Rather, it's restless and unsatisfied, grumbling miserably about it's current state. 

Just over a year ago I started suffering from my first DIOS episode, which is both unpleasant and--well, actually that's about the only term I can use to describe it. I've had my fair share of digestive system troubles in the past, mild episodes of DIOS, pretty severe acid reflux issues, and of course the removal of my appendix, but I've been scot free the past 10 or so years and was quite content to allow that trend to continue. Alas, our bodies plot separate plans from our minds, and since last year's episode I have had two more. I realize this does not compare to some of the GI issues others have had, but I find myself suddenly submerged into a new part of CF that I hadn't had much experience with previously (or conveniently forgot about). It was slightly bizaare to go through two clinic visits and barely discuss my lungs--let's hope, as a result, they do not act out and fight for the spotlight back.

So I did my research and confirmed what I already assumed, that adult-onset of DIOS is quite common. And, since I spare no details (you lucky group), I may as well share the treatment plan... let's just say it's 'project cleanout', and for those of you who have had a colonoscopy before, you will be familiar with the jugs (4 L jugs) of liquid (called Peglyte) that you must ingest (and ingest quickly) in order to flush out your system. It's just as pleasant as it sounds.

When I went to clinic a week ago, I knew full well I had chronic DIOS. I actually had to call in and tell them I was dropping by because I simply could not stand it anymore. A hungry Lindsay is an unhappy Lindsay. The week before,  I had tried 4 L of peglyte, but it clearly wasn't enough, and the pain had returned with a wicked vengence and twisted sense of humour (On Thanksgiving? Come on now.). It's a 'cramping' pain, in clinical terms, but it feels a lot more like someone is twisting and wringing out your intestines. I also hadn't eaten more than one meal a day for three weeks (DIOS makes you feel full faster) which has now resulted in a massive weight loss. Which, for the record, I'm not too happy about.

Anyway, now that I've rambled, I'll wrap this up. The docs looked at my x-ray and decided that I probably needed more Peglyte--scratch that--way more. 16 L more, in fact (that's 4 jugs). Initially, they were going to admit me to make sure all went well (Peglyte can make you really dehydrated, which I had found out the previous week), but I opted to go home and sort it out myself. Seemed silly to go in the germy hospital for DIOS issues...plus, I have a g-tube, and I can abuse that baby until it's no longer necessary. 

One week later and I'm fine, pain-free for the first time in three weeks. BONUS: I'm able to eat again instead of drooling over food commercials, and I'm on a mission to gain weight... I have ten pounds to gain. I'm feeling a bit grossed out about that--about shriveling to such a tiny thing (and I already was a tiny thing), but I'll get it back. Eat. Eat. Eat.

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!!**

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.

I slipped up this week and paid for it--big time.
On Tuesday I ran out of Losec--a medication that prevents the production of stomach acid--and failed to refill my prescription right away. Instead, I found a bottle of zantac and--feeling thrifty--thought that might tie me over for a few days. Boy was I wrong, VERY wrong. Anyone who has ever experienced severe heartburn will sympathize. For those of you who have not, it feels exactly how it sounds...acid burning your throat (and sometimes mouth and nose), and it shoots up in little volcanic bursts.

Wednesday was fine, the Zantac seemed to work when coupled with a few Rolaids throughout the day. Thursday brought a little more discomfort, I found it difficult to eat or drink anything because of the burning sensation in my throat (and the fear of making it worse). But by this morning (and remainder of the day) it was intolerable. I couldn't even complete my morning physio because the stomach acid was jumping up to my mouth (despite popping Rolaids and Zantac). Needless to say, I immediately got my butt up to the drugstore and picked up a fresh supply of Losec--a drug I will never, EVER be without again! 

Lesson learned. Laziness=pain.

This is a reminder blog post to myself, just in case I feel like procrastining again in the future.

Since I'm on a roll here, I thought I would provide additional tidbits.

I went for my follow-up appointment at TGH last week and it went quite well. I really do like the fact that I arrived at 8:30 and I was home by 11:30. PFTs and a visit with the doctor all done before noon!

My PFTs are exactly the same (holding steady at .80). My weight is pretty stable also, which is always good to hear since I struggle with it quite a bit!

I was actually surprised to learn that I had not lost as many pounds as I had predicted. I have had a lot of digestive problems since last summer, which leaves me in pain, feeling ill, weak and unable to eat or do nightly feeds. Because of this problem, Dr. C (who I saw at TGH) has recommended I see the GI specialist. Apparently I should deal with this ongoing problem now because it can get even worse after transplant (I shudder at that thought).

In any case, I am hopeful that my situation can be helped. Maybe I'll just have to take additional medication or adjust my enzymes. It will be a relief not to suffer as often as I do now--I even had digestive problems at New Years and could barely finish one champagne flute. That's just wrong.

Everything else is just as it should be, time for the gut to follow suit.

Once again I have abandoned you, dear blog, for better and brighter things (well, if you consider school and skiing as better and brighter). But I know you will always take me back and maybe I shouldn't take advantage of you. Maybe it's unkind and rude and slightly selfish, but I will try to be better and give you the attention you deserve. All I can do is try.

So, where were we?
January went by quick. And I'm amazed by the power of time--what a difference a year makes. Last January-February I had been in the hospital for three weeks, having chronic fevers, no appetite and nasal prongs strapped onto me 24/7. I distinctly remember Dr. C coming into my small, semi-private room to tell me that I needed to consider going for a transplant assessment. After that, I went home for a week to try home care again. But I became unstable and went back in for another three weeks. I watched winter turn to spring from my hospital room window, which overlooked a small park and St. Michael's Cathedral. 

Today things are quite the opposite. I have experienced winter turning to spring. I have walked through the park and I have enjoyed hours of downhill skiing (made it to 10 runs in one day) and I even tried out cross-country skiing! I have not required oxygen for moderate exercise (I just throw it on when I really want to push myself) and my love for food continues to grow (I'm not ashamed to admit it!). The best part: I've been infection-free for 11 months and counting. That's right folks, I have not even required one course of oral antibiotics--I used to be on those things at least every six months. Now that I have admitted that, I will knock on every piece of wood I can find in my vicinity.

What else?
 I turned 23 on January 25th--and no, I do not feel old. Rather, I feel much younger than last year!

Last year I woke up on my 22nd birthday to my IV drip and a sat monitor (measures the oxygen level in your blood). The first thing I did was pop two Tylenol in my mouth to ease my fever (I got used to doing this every four hours) and tried to force down some lovely St. Mikes cuisine. I'm not quite sure what treat I had in store that morning but I'm certain I only tried the cereal--that's usually the only decent thing on a hospital food tray. I was probably also treated to luke-warm tea, served in a plastic cup--which should actually be a crime. I shouldn't complain too much though, as the cuisine did improve as the day wore on.

My Mom, Sister and Dad arrived at the hospital with foil "Happy Birthday" balloons in tow (I actually still have one that's perfectly inflated). My favourite nurse convinced the doctors to give me a day pass to go home since it was a "special day". I was wheeled out to our car, so I didn't have to waste all my limited energy on walking. Upon arriving home, I think my favourite gift was a nice warm bath, since we couldn't shower on the ward due to infection control concerns. Yes, it is gross.

I had a nice steak dinner/lunch, but unfortunately I couldn't eat much because I had no appetite. However, it looked delicious. The day was capped off with an ice cream cake and in order to blow out the candles I removed my oxygen tank from the room because (a)- I was new at this and didn't know the risks and (b)- I was paranoid.

That was last year. This year I celebrated with my sister and friends with a night of boardgames and rock band. Sounds simple, but the simple things are always the best! Just like a warm bubble bath after a week without a shower...yes...just like that.

This year I also missed the simple things, like a birthday gift from my dog, Julie. She was with us for 16 years before she passed away in June. She was always a great shopper, but this year there was no card signed with a paw print.

And that is how time changes you: it ages you, takes spirits aways and introduces new ones, reshapes your appreciation, molds your perspective, builds or demolishes relationships and it heals you. And it definitely goes by way too quick.

Today was my first day back to school after being off for over a month. I actually welcomed the routine again! The only drawback was that my body does not appreciate early mornings and I required a 2-hour 'nap' once I got home...

Good day overall, this is my first semester officially being a part-time student, so I'm going to have to adjust to the reduced workload. Not to mention that there is a possibility of the college teachers going on strike for three weeks, so that will force me to get creative with my time.

Tonight I had to do CPT for the first time in months. This is when my Mom "claps" my chest to help loosen secretions. Usually I just use the PEP or Active Cycle of Breathing, but I needed to add a little extra today because I have been hearing and feeling little cracks and pops in my lungs. This concerns me when it is deeper in my lungs because it means I have phlegm stuck--which is an open invitation to infection. So time to step it up and add an extra physio until that is officially cleared!

I have a confession to make. I have become an avid Dr. Oz follower--a shameless habit I developed since it first aired.  At the end of the show Dr. Oz, who always wears his blue scrubs (to add credibility? or auditioning for Grey’s Anatomy?), reveals his three prescription for health tips.

With experience, we have all become experts in tailoring our own prescription for health. We are constantly tweaking and comparing our routines to others in order to achieve our definition of health. CF forces us to think outside the box, outside of the prescription that has been given to us (mind you, CF or not, everyone should do this). Taking our pills and doing three masks and physio everyday, while good, simply does not cut it.

My definition of a successful routine is having sufficient energy to get through my day (though I still savour my 15-minute power naps in the afternoon), staying infection-free and stable (or better).

So I will share with you what works for me at the moment. It’s the ‘prescription’ that has been in full-swing since March 2009 and possibly contributed to my health staying stable and staying off any antibiotics for 9 months and counting. I’d like to believe it’s not just pure luck.

Please note this is on top of my regular health routine, which includes the following:

• Ventolin puffer daily (amount varies, usually 4 puffs, three times daily)
• 2 Colisitin nebulizers daily
• 1 Hypertonic Saline daily
• 2 PEP masks daily
• 1 Active Cycle of Breathing daily
• 8 ESC 8’s (enzymes) with meals
• 2 Losec, twice daily
• 10 mg prednisone daily (steroid)
• 250 mg Zithromax daily (everyday antibiotic)
• Pulmicort (puffer) 3 puffs, twice daily
• Oxeze (puffer) 1 puff, twice daily
• Actonel (once-a-week)
• 2 ADEKS (multivitamin) daily
• 2000 mg vitamin D daily
• 5 mg vitamin K daily

Now to the good stuff, my personal prescription:

SUPPLEMENTS:
Primrose oil 1000 mg, 2-3 times daily
Helps reduce inflammation. I also use it for my skin since I had a lot of redness and acne caused by prednisone.

Fish oil (omega 3s) 1000 mg 2-3 times daily
Helps reduce inflammation and enhances immune system. While fish oil (pharmaceutical grade) is proven to be good for everyone, there are several CF studies which outline specific benefits (but draw NO conclusions). Although I’m not part of a study, I was surprised to read about decreased sputum production...I just remarked on that last week. I have never coughed up so light and little sputum EVER. Coincidence? You be the judge.

DIET:
Reduce preserves
It’s no secret I’ve never been a fan of the old-fashioned CF diet, where the bulk of advice is to drink pop, eat chips and focus on fattening up. Instead I prefer eating meals that are nutritious and balanced--basically the way everyone is supposed to eat. Mind you, it also helps that I currently live at home and my Mom always makes good, home-cooked meals. Unfortunately this has worked slightly against her in that my sister and I have developed pallets that are repulsed by most packaged foods--you know, the ones that have 10,000 ingredients.  But I will add, I do still enjoy the odd bowl of chips :)

There are simple ways to cut out the preserves like popping REAL popcorn kernels (which takes the same amount of time) instead of packaged bags. Packaged bags are more convenient, but packed with unnecessary additives.

Reduce sugar intake
Sugar feeds infection, reduces your immune response, makes you tired and overall is NOT a good thing. Luckily, I naturally do not crave sugary foods, mostly because my parents have never been big fans of sweet cuisine either. However, I DO have a weakness for chocolate and when I’m in the hospital or on a special occasion I tend to get a lot of chocolate for gifts (which I am definitely not complaining about). So I limit myself, maybe 1-2 chocolates a day--which means chocolate can sit around my house for a long time--but I am still able to have a small treat.

As an alternative, I’ve also developed a taste for dark chocolate, which is actually GOOD for you in small quantities because of antioxidant benefits (make sure it’s 70%+ cocoa though).

IMPROVED NEBULIZER REGIME
Our clinic recently starting reviewing with patients how they clean and care for their nebulizer equipment. Well, I thought I was pretty good until I started going through the questionnaire.

Suffice to say, now I have a sterilizer for my masks. I run my masks, pep, flutter and puffer chambers through a sterilizer at least once a week. And of course wash all of the above items daily in soap and water (formerly I had only done the latter step).

I also let my compressor run for 1 minute (or until the tubing is completely dry) after I finish a treatment. This removes the opportunity for germs to take up residence.

ORDER OF TREATMENTS:
Before: ventolin, antibiotic nebulizer then physio
Now: ventolin, physio then antibiotic nebulizer. Which makes more sense since I'm not coughing up all of my antibiotic.

HAND WASHING
Every time I come in the door, I immediately wash my hands. Sounds simple, but it is also simple to forget.

I keep antibacterial wipes in my car, so when I get in my car after a class I use the wipe. When I’m driving home, I do not trust myself not to touch my face, so it’s just easier to get that out of the way.

I also carry antibacterial with me everywhere, I know there are studies circulating about how it is being overused and creating superbugs, but as far as I’m concerned any bug I pick up now will be a superbug to me, so a little caution won’t hurt.

BUILDING UP A GOOD DEFENSE:
When people are me are sick, I figure my best option is to build up a good defense. While clorox wipes and antibacterial will help, bugs will always find the gaps. In order to build up my immune system I take extra vitamin C and extra strength cold FX (when I feel rundown). I also use a saline nasal rinse which, while not the most comfortable thing ever, certainly works well.

ADDING VARIETY TO PHYSIO:
Doing PEP three times a day can be exhausting. So I like to switch it up by doing PEP twice a day and Active Cycle of Breathing at night. Switching up your routine keeps you more motivated and ensures you are targeting all areas of your lungs.

Here is what I’d like to add to my prescription for health:

• Oil of oregano to boost my immune system (warning: I put a few drops under my tongue the other day and it is incredibly potent)
• Exercise on a regular basis. I am good at working out when I’m on vacation, but once school starts up I tend to put it on the back burner.
• Drink more water. I dislike drinking it, especially when it is cold out... so I will make a conscious effort.

This is quite a lengthy post, but I wrote it with the hope that someone is able to benefit from what I have learned. I also hope others will share their own prescriptions!

Well, I made it! Yesterday was my first 3-month clinic appointment in ages and I made it.

What a boring clinic appt. That's the way I like it. My PFTs are holding at a steady 27% (.80 L) which--for those keeping track or taking bets--has been the same since April. My weight is also steady and all-in-all I am a boring, unchanged gal.

The physio therapist who is always enthusiastic and upbeat, taught me a new huffing technique using my PEP mask. For people (like me) who feel tight and asthmatic in the morning, it is a great alternative. It is difficult to explain what a 'huff' is, to those who are unfamiliar, but I will attempt to anyway. Basically you take a breath in (big or small depending on the area of the lungs you are targeting) and breath out through your mouth as if you are saying 'ha' or testing your breath. If you are targeting your lower lobes, you take a tiny breath in and if you are targeting your upper lobes you take a big breath in.

The new technique involves huffing with the PEP mask still on my face. Whereas I usually take the mask off to do it. Oddly, I am eager to try this new technique when my new PEP arrives.

Over the holidays I have been using a device called a 'flutter', since I am a complete genius and decided that Christmas Eve was an optimal time to break my beloved PEP mask. Well, turns out I've been doing my flutter incorrectly over the holidays. Yesterday I learned the correct way and it is far more hardcore than I anticipated. Turns out the flutter can also be irritating for someone who has a lot of tightness like me, so it is not ideal to use anyway.

I ran into my cysta on my way out of clinic and although she looks tanned and stylish, her lungs have decided to behave badly. So she is whipping them into shape with a course of orals before her trip to Barbados. CF lungs always require a good whip to behave again.

In other boring news, I was able to shop after my clinic appt. which is a rarity. My energy is usually zapped by the time my clinic appt. ends and I immediately require an afternoon nap. Not this time, I was able to go to Sherway Gardens with my Mom and shop for 3 hrs (plus lunch).

I think this is an ideal start to 2010.