2009 was quite an interesting year, to say the least. It really tried our patience and, as is the nature of CF, kept me humbled. I like to plan and to follow that plan as closely as I can but as I learned, plans cannot always follow a linear path.

December 2008: I had started IVs on December 15, after a record-breaking 3 years without them. With this in mind, I felt grateful I had gone so long without them and welcome the oppertunity to boost my pfts from the mid-30's back to the 40's. I spent 1 week in the hospital then continued home IVs during Christmas and New Years.

January: I picked up a weird bug (while on IVs) on the exact same day my pfts finally reached baseline. Within one week I went from being back to health and ready to start my second semester to in the hospital, with pfts in the mid 20s, spiking fevers and on oxygen 24/7. I dropped down to part-time studies for the first time and spent my 22nd birthday in the hospital (my nurse pulled some strings and gave me a day pass to go home for a few hours.)

During this time I met my hospital roomie, Arlene, who was (and still is) waiting for a liver transplant. We enjoyed late night convos and shared small milestones.

February: Still on oxygen, but going for walks around the hospital every day--even though it was usually forced by my parents. The most frustrating part of this was that I was unable to eat since January because the fevers made it difficult and I constantly felt full. I went home for one week of home care, but quickly got worse again, so I ended up back in the hospital.

March: After 13 long weeks, I finished IVs, got off the oxygen (only used for exercise now) and finally went home for good. My pfts only ever went back up to 28%, but I have enjoyed good health since then.

April: PICC line removed. To celebrate the end of a long winter, we take a family trip to Naples, Florida.

May: Go for my transplant consultation at TGH, on the way home I get a call for a job interview.

June: Start my summer full-time job at Theatre Collingwood as a PR assistant. Move to Collingwood for the summer. Beautiful place, where there is rarely a smog alert day!

July: We experience our coolest summer yet. No swimming in Georgian Bay, that's for sure.

August: I go for my four-day transplant assessment workup at TGH. Start this blog and begin to follow the blogs of other CFers.

September: Start back at school as a part-time student. A little weird to adjust too, but I definitely don't have to worry about not being busy enough.

October: Busy, busy with school. (which is probably why I don't remember much from that month!)

November: Lots of transplant stories receiving headlines. Eva's story airs on CBC, along with Natalia's. My own magazine article that I write about a fellow CFer is approved for publication (coming soon!)

December: My mom and I go for a week-long trip to Barbados and come home in time for Christmas. Spend most of the break at our chalet in Collingwood, enjoying skiing and the relaxation!

Happy New Year Everyone!

I should also add--belatedly--that 2009 was the year I grew closer to my CF cysta, H and met Ash--a fellow CFer who later recieved a transplant. Proof that good always comes from the bad.

I have not been skiing since last year before I went on my 14-week stint of IVs (around this time). My lung function was hanging around 35% so I needed a little tune-up (which ended up being a big tune-up). However, when I was admitted the doctors were surprised to learn that just days earlier I had been skiing at Blue Mountain (not actually a mountain as the title suggests). I was able to do 8 runs.

Flash-forward to this year and my lung function is about the same, but I have a new addition to my ski equipment: oxygen. Luckily, I only require 3L for working out which means I can use a portable concentrator (or POC), which is NOT compressed air. I found the perfect little backpack to carry it around in and a nice little ‘disguise’ to cover the tubing (though I didn’t end up using it much, because it was not as comfortable. Comfort first!).

It weighs about 5 lbs, which is slightly challenging for a petite gal’ like myself, but I managed quite well. As I glided down my first run I had to remind myself to breath with my nose and not my mouth (so I could get the benefits of the 02). Easier than I thought. My lungs were at the top of their game: no coughing spasms, no overly fast racing heart, no white spots, no headaches, no exhaustion. In fact, my legs gave out (literally) before my lungs did.

As I finished my sixth run of the day, I felt my legs begin to collapse beneath me. So down I went—as gracefully as one could—and I sat there trying to figure out how to get up since:
1- I rarely fall
2- The added 5 lbs of the backpack made me feel like a fallen turtle
3- My legs were finished and could only respond by trembling in objection

So I struggled for a couple of minutes, desperately hoping I wouldn’t attract attention, then popped off my skis and stood up quickly before putting them back on again. There is always an easier method.

I’m so glad I decided to try skiing with oxygen, it made it so much more enjoyable and now I have a new record to beat. My legs now have to catch up with my lungs.

Airplane travel is amazing, isn't it?

One morning you could be strolling along a tropical beach, with the rolling waves reaching up to stroke your bare feet. By the evening, you could be bundled up in layers, trudging through mounds of snow as you venture from the airport terminal to a heated car.

This sets the scene of what I experienced less than a week ago.

My Mom and I decided to go to Barbados after my cystic cysta raved about it upon her return home (and already quickly booked another trip back). We found a pretty decent deal and a few days after my semester officially ended, we were Barbados-bound.

When I first stepped off the plane I was quite surprised by the humidity. But, it is still the end of their summer and apparently it has been hotter than most years. Unfortunately, my lungs are not big fans of humidity and it tired me out quite quickly. But the rest of my body welcomed the heat (and the beach bar and delicious food), so I have NO complaints!

We were entertained by karaoke the first night (note: those who were leaving the island the next day were not shy about sharing their musical er... [dis]abilites.) And later in the week we served as an audience to the much talked about Mr. Impact.

Since I had more energy for this trip we were also able to do a couple of excursions. One was called the 360 Tour, which was a bus tour of the entire island. And although I'm not a fan of bus tours, this one was well paced and entertaining. We stopped at Speightstown, which is a little fishing town (we didn't stop very long, but it was a Sunday and not much was open anyway). But, we stopped long enough to catch a group of shirtless guys wearing c-mas hats leaving the dock for a scuba dive. I wish I could scuba dive.

We also stopped at the 'blow holes' which are on the North side of the island and really stunning (I will post pictures of all this once I have time to get to my other computer!) before venturing to St. Nicholas Abbey Plantation, which is an amazing piece of property that has been restored. Good rum punch there too. Another notable stop was Bathsheba on the East coast, which again was quite a site (apparently a popular site for surfers, but not on the day we went).

Although I cannot scuba dive, I CAN snorkel. And snorkel I did! My Mom and I went on a catamaran tour that included two snorkel stops. The first stop was to snorkel with the turtles... unfortunately I didn't last too long. The current was a little strong for me (even though I had a lifejacket, I get exhausted quickly from swimming) so I found myself getting very out of breath and a slight headache. But before I swam back to the catamaran I did see a little turtle. On my way back, one of the crewmates told me that a big turtle was behind me and I fully thought he was joking. Turns out he wasn't and after I climbed on the catamaran I saw two giant turtles (one surfaced right in front of my Mom, who was still in the water, and I was impressed she didn’t scream). So I didn't miss out on the action!

The second snorkel stop was over two shipwrecks (though I believe one of the shipwrecks was purposely sunk...) I was able to last longer for this one because of one very important addition... flippers! I've never been the strongest swimmer in the world, so flippers are a godsend. It was really neat to see all the fish up close and personal... the shipwrecks too!

I'm sure I could go on and on about the details of our trip, but overall it was a great seven days. Time to explore, unwind, and eat a lot (I gained all my weight back). Also, on both plane rides I did not need to use my oxygen. The lowest I dipped was 87 (which is slightly hypoxic, but nothing concerning or long-term) and I generally teetered around 94, which is my norm. (Normal values are between 95-100, but everyone's oxygen levels naturally drop when they are at a higher altitude.)

For now, it is back to the snow and back to the slopes.

This weekend, Natalia Ritchie--who's blog I follow and attends the same clinic as me--finally recieved new lungs at the 11th hour. The timing was truly a miracle, had it been a few hours later her brother, father and husband would have been finalizing the living-donor process (and permenantly losing part of their own lung function). OR Natalia would have been too sick and removed from the transplant list, which would have meant certain death.

I've posted her journey from the beginning to follow. If this doesn't show the power of organ donation, then I don't know what else does!

Part One

Part Two

Part Three

Part Four

Current article in the Star:
http://www.healthzone.ca/health/yourhealth/women%27shealth/article/730426--miracle-lung-transplant-call-came-literally-at-11th-hour

Further updates can be found on her blog:
http://natandmarty.blogspot.com/

A lot of us CFers and post transplantees have been joining together in a mission of our own--to raise awareness about organ donation and start a conversation! In an ideal world, I would love for Canada to NOT have the lowest rate of organ donation among industrialized nations. I think we can step that up! No one should have to be on the brink of death waiting for organs... and yet it is very common.

Not much to report lately. School is winding down, I have time to workout again and I PASSED my thesis proposal.

In case you didn't catch it last night, 65_RedRoses--a documentary (very well done, I must add) about three young women with Cystic Fibrosis can be viewed be here. It won two awards in Canada and will soon go internationl. It is candid and a very real potrait of Cystic Fibrosis and I think everyone who knows someone with CF should watch it--some people found it scary--it was pretty emotional--but I think it is important to address the serious side of CF.

It will also air again on CBC NewsNework at 8 pm on Sunday, November 22nd.

In case you didn't catch Natalia Ritchie's article in the Star two weeks ago, CBC is doing a series on her wait for lungs. Check it out: http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html

I finally got my H1N1 shot on Monday--swine has already been making its sweet way around my school--so it was quite a relief. I did not have to line up either! Despite the horrible looking line-ups on the 6'o'clock news, I went to Guelph University and waltzed straight in. Now, I may have made a terrible decision at this point, they asked me if I wanted to get my seasonal flu shot at the same time... and I said yes (after they assured me several times that this wouldn't increase the likelihood of side-effects).

WELL, let me tell you, I do not know if it was this ill-fated decision, or the H1N1 shot, or pure coincidence, but three days later (yesterday) I woke up at 5 am to the most horrible alarm clock--chills. Three layers of warm winter blankets were not enough to fight off the cold, my heart was racing and I knew I was getting another fever. What's worse, everytime I shifted around my bed--trying to create warmth--I felt a hint of nausea. Really, I had no choice but to wimp out and stay perfectly still for the next two hours.

By 7 am I was restless, tired and bored--staying in one position for that long can do that to a person. So I took a deep breath, grabbed my giant sweater nearby... and then the nausea won and I ran to the bathroom. With a temp. of 102, which isn't even a high temperature, but enough to be annoying--I was convinced I had the flu. Like any sensible person, I drugged myself up with tylenol and gravol and slept until 2:30. When I woke up, every symptom was gone, leaving a nice little migraine in its wake.

Now that I've made everyone afraid of yet another shot, let me clarify--I still would have got the shot. When you have a compromised immune system it is much better to have a couple of days of discomfort versus major complications. 

After 24 hrs I was fine, just residual muscle pain that was very manageable. I was still able to go to my gala, which was pretty fun (hoping to get some pics up!). And I don't have much work this weekend...so I will have to find something to do with myself! 

Introducing my innocent little article that got blown out of proportion by a certain Chair/bully at Guelph University. It was never published in our modest school paper as a result, but I thought I'd share an article which caused so much commotion and unnecessary stress this week.

I will not go into details, because I'm too tired and frustrated to rehash the 'learning experience' (which I could have done without) but I hope you enjoy. You will notice it is hardly an article to get worked up and political over! 

Dear future journalism students, this is a possible consequence of what happens when you refuse to hand over your final draft to interview subjects to vet or review, even though they insist. However, you will at least feel better about maintaining your credibility and adhering to proper journalistic practices... right??

Skin Deep: Kinesiology students share their experience in the cadaver lab
Lindsay Bishop

Ask Kinesiology students what their favourite class is and you’ll likely get the same response: cadaver lab.

In the first year of Kinesiology, classes are bused to Guelph University once a week for a two to three hour lab. Although it is a two hour roundtrip from Humber College to Guelph University many students agree that it‘s “worth it”.

“You get to see the muscle fibers and the direction they run and you get to see the actual organ. And it just makes so much more sense,” says Elaine Popp, Kinesiology program head.

Guelph is the only Canadian university without a medical school that gives undergraduate students an opportunity to dissect full-body human cadavers. There are anywhere between 12 and 20 cadavers at a given time.

Before students are granted access to the lab, they are prepped with rules and regulations. Rules include no hats, cell phones or loose jewelry.

The environment of the lab demands respect, more so than you would find in your everyday lab at GH. “They don’t let you make those silly little comments like ‘it looks like chopped liver,’” says Krissy Carlton, a second-year Kinesiology student.

On the first day, the class experiences a dissection of its own. One group of students prefer to watch from a distance, while another group is eager to reach into cadavers to handle different muscles.

Carlton said she wasn’t fazed until one memorable moment, “when we were studying the flexors of the fingers and what not, something that really, really got to me is that it was obviously an older body and the nails were painted. The person was in the hospital because they had various diseases and you could actually see them. They definitely had cancer, you could see the tumor on the ovaries and on the uterus. But someone had taken the time to sit with them in the hospital and paint their finger nails.”

Everything but the actual part students are studying is covered with wet sheets in order to preserve the body. The parts that are more personal, such as the hands and face, are almost always covered.  Students who want to see a facial dissection can request a special lab time.

At the end of the academic year there is a memorial for each one of the cadavers—people who meant something to someone—faculty, staff, students and the families of the donors are invited. Music plays in the background as a candle is lit and a flower is placed, students come forward and share their learning experience made possible by donors. Katie Billard, anatomy lab instructor, says it is especially important to thank the donors since there is always a shortage of cadavers.

The donors are cremated and then returned to the family. Although the cadavers can be preserved for several years, the family can request for them to be returned sooner.  “The family and loved ones always come first,” says Billard.

For Kinesiology students, the cadaver lab is an essential tool for learning about the anatomy of the human body. Although they have two lectures during the week that teach about the parts of the body using slides and artists’ depictions, the lab allows students to match up what they have learned and identify muscle groups up close and personal.

Today at 4:30 (on the dot, I might add) I dropped my 24-page thesis proposal into the submission box and (quite literally) skipped out of the doors of Guelph-Humber with the first hint of relief I have felt in a week.

I hope I pass, I'm not sure I did the best I could--I put tons of hours into it--but admittedly my heart was not always in it, so we'll see what translates on paper! Most of my time was spent trying to figure out what exactly a thesis proposal was and how to write a literature review. For some bazaar reason four years of University still did not prepare me for the shock of an Undergraduate thesis. 

To sum up my week, here is how it played out: I was chained to my dining room table, staring down my laptop and surrounded by a stack of academic journals and library books (the latter of which ended up just being for decoration... while I thought the books were interesting, I didn't really have enough time to read them). I spent a majority of the week feeling suddenly enlightened and then severely confused. At one momentous breaking point, I told my Mom how much I hated school and felt like dropping out--it was a drama queen moment that was resolved with a nap and caffeine booster.

In other news, I think I may have to whiten my teeth after this week due to the massive amount of tea I consumed (I've never been a coffee drinker, though it is debatable which one is worse).

Also, it seems like--two weeks later--my cold has finally cleared! Part of the reason for this thesis proposal taking so long--besides my procrastination skills--is that my energy has been so low the past two weeks. Usually, I sleep 7 hours a night and feel just dandy--but I was requiring 10-12 hours of sleep PLUS naps, which is far too time consuming in my opinion. I know you are supposed to rest when you are sick, but feeling tired all the time is a drag when you know you have some much to do or so much you want to do.

Aside from a short stint with a swollen ear—which I quickly self-diagnosed on WebMB as a blocked Eustachian tube, like any other reasonable person would do--I think I beat this cold pretty well! My mom and sister ended up picking up a new brand of cold over the Thanksgiving weekend, but thankfully didn't share it with me (though, I am jealous that their cold was superior to mine since it only seemed to cause a 4-day sore throat, pah!)

One thing I have had return though is that weird 'infectiony' smell I get. I claim to be able to 'smell' infection...really, that’s the only way I can describe this. Mind you, I don't really have a sharp sense of smell (with the addition of this cold I was sadly unable to smell Turkey dinner last weekend, but the smell was described to me by numerous salivating people). Anyway, this weird infectiony smell stumps me (and the doctors at St. Mikes). Usually out of paranoia I go on antibiotics. Especially since, for whatever reason, I don't get normal signs of a chest infection anymore. When I have a chest infection instead of coughing up more, which is a trademark sign, I actually cough up less or nothing... so, as you can guess this makes things a little tricky.

Because my energy and appetite is returning, I've decided it is no big deal so far. I've actually been inhaling the vapours of tea tree oil, which I read somewhere a long time ago could help ward off infections. Who knows if there are any scientific facts to back it up, but I am always up for trying anything and I think it actually has been helping.

I’m certain a nice weekend of R&R (and normal homework catch-up) will have me fully recovered by Monday.

The drop in mercury and colouring leaves signal that fall has arrived. And my favourite thing about the fall is eating all the yummy fall foods... including the best feast of all: Thanksgiving dinner.

Part of my family has rounded up at our chalet in Collingwood and as I type this our 19 lb Turkey is being prepared for a day of baking--and temptation. I will soon go pick our carrots out of our garden--the last harvest. I hope they turned out alright!

Before I do though, I thought I should mentioned what I am thankful for, since this--besides stuffing your face--is part of the whole point of this extended weekend.

No particular order:

• Fam + Friends
• Delicious food
• MSN, blogger, FB and other forms of internet communication
• Sunny crisp fall days
• Holidays to sunny, warmer places when one cannot handle 'crisp' days anymore
• Bonfires
  
• A warm cup of tea
• A warm cup of tea with chocolate
• Roller coasters that make you scream like a terrified infant being torn from their mother's grasp (specifically)
  
• People that help you out when you least expect it
  
• Humor
• Pajama days 
• Good movies you want to watch over and over again
  
• Being off of oxygen for 7 months! woo! (Still use for exercise but that's no biggie)
• Good-looking celebs to gush over
• Dr. Horrible
• Crantinis
• Good books you can't put down
  
• Wii
• Nearly being done my time at GH
• Purell 

Happy Thanksgiving Everyone!

The dust has settled... and I am still alive!

Okay, a tad dramatic, but the side-effects were plentiful and not fun from the Twinrix shot! Though I do very much appreciate the future protection from hepatitis A and B, I will appreciate it more when the side-effects have finally worn off.

To start: I did not make it to my three-month appointment. I decided to go back to clinic today to make sure everything was okay--since I felt a certain type of terrible on the weekend and we all know the last cold I had landed me in the hospital for 6 weeks, so one can't be too careful!

The bad news (which I already knew) was that I got every single side-effect you could get from Twinrix. Which includes (just so I can scare a few more people out of getting the shot):

• Headache
• Fever
• Flu-like symptoms
• Malaise
• Loss of appetite
  
• Fatigue 
• Dizziness
  
• Redness, pain, itching and swelling at the place of injection
• COLD??
  

Where I left them puzzled was with my newly-acquired cold, which I developed not too long after recieving the shot. Some people said it was coincidence, others said it was possible the shot caused it... so a little bit of a mixed review there. At this point what matters is that despite my obsessive purrell and clorox skills I still got a cold. BUT it isn't too bad and already seems to be clearing itself up nicely.

Good News In the Bad
Turns out everything is more than okay. Despite not eating much over the past week, I somehow managed to gain weight, plus my pfts even went up 1% which means they are now resting at 28% (.83 L). This is actually pretty typical and why I sometimes wait too long to go to the Docs... when I am feeling under the weather I am performing my best.

I am done my Twinrix shots now... thank god...I just have boosters to do in the future and I hope they won't be as bad. In light of current events, I have delayed my second HPV shot to give my body time to recover. I am also considering not continuing it, because I'm not sure it is a necessary shot to have. This, of course I will discuss with my transplant coordinator.

So all-in-all things are back on track, just a minor blip that unfortunately has come at my busiest time.
With lots of fluids and rest I should kick this cold in no time!

When you take a look around at other people's blogs they show you pictures of awesome transplant incision scars, or never-before-seen reactions to drugs or a step-by-step of a picc line insertion. Sadly, I have none of that interesting stuff to share with you today.

BUT I got bored enough to actually take photo evidence of what the Twinrix shot has kindly left behind... a sore, red, hard--did I mentioned sore?--bump.

In light of my terrible experience with this shot, I phoned clinic and asked if I could delay my second HPV shot that I have scheduled for next week. Mainly because, quite frankly, I can't afford to spend three days in bed again.

In an effort to not allow these photos to uglify my blog. Here are some pretty photos of my garden (well, it became the family garden) that we built in Collingwood this summer. (More to come later!)




What was in our garden?
Zucchini, carrots, snow peas, beans, cucumbers, tomatoes, cherry tomatoes, peppers, various herbs and (perhaps) later some lettuce...

Charles the bunny not included.

Ok so this show looks like it is extremely melodramatic/corny and accelerates the transplant process at warp speed. But it has good-looking actors and raises awareness about organ donation, so I'm all for that.



Starts this Sunday on CBS.

Day two... still sore, woke up with huge headache (I think a migraine?), spent the day on the couch under piles of blankets watching Canada's Next Top Model re-runs.

P.S. Did I mention I have a giant thesis proposal due in 16 days?

Yes, I'm on my way to success.


But the remedy for a feverish day is a simple one:

1. Tylenol. Takes a while to work, but it eventually kicks in. When I have a stubborn fever I alternate between Advil and Tylenol, because you can only take Tylenol (or Advil) every four hours... when you alternate you don't have to wait as long.
2. Trashy TV. If you fall asleep during it (which you will) you won't feel disappointed that you missed something interesting. Also you don't really have to think while you watch it and, depending on the show, you may even feel better about yourself. 
3. Ginger Ale and Kraft Dinner. About the only things I can eat while I am burning from the inside.
4. Comfy couch and blankets--this combo actually feels like heaven.
5. A nice sweatsuit. Comfy and stylish. What more can you ask for?
   

This week has been much better than last week, in a sense that I made a conscious decision not to let stress get to me. Yes, I will get stressed with a heavy workload--and naturally everyone has a little bit of stress in his or her lives--but I will not let it allow me to lose sleep or any of the like.

However, my body enjoys taking the opportunity at moments like this to see what it can get away with. I had my third Twinrix shot yesterday and felt just fine--nothing but a little bit of soreness at the site. Woke up this morning with a eye ache (my term for a headache behind your eyes) and put it down to spending copious amounts of time on the computer (I was making a magazine cover on Indesign and Photoshop yesterday--so those of you who have had to do the same can sympathize with the staring contest you have with your comp.) Anyway, I was prepping for my presentation I had to do today when, quite quickly, my simple 'eye ache' progressed into eye ache accompanied by all over body chills.

I jumped in the shower and literally huddled under the hot water for a good 30 minutes (sorry David Suzuki)--I was too chicken to step out into the coldness again. Then it dawned on me, I have felt this way many times before... I had a fever. I don't even bother to store the thermometer out of reach anymore, I always have it close by because my body seems to have a sickening love affair with fevers. It loves to hook up with the fever at the most inappropriate times (not that I'm suggesting there IS an appropriate time) and it usually loves to hang onto them for days, if not weeks, on end--laughing in the face of Tylenol’s futile attempts to break up the sinful union. Thankfully, I just had a low-grade fever of 101 F. But it was enough to make me feel shitty and climb into bed. I e-mailed my professor and told him there was no way I could do a presentation today and he was very understanding (even excited when I sent him my slideshow as a preview/proof that I wasn't skipping class because I was unprepared).

I left clinic a message (which still hasn't been returned...hmm) and crawled into bed for the remainder of the afternoon, hibernating under many layers of blankets. However, I'm assuming--because you know, I'm a qualified doctor with my WebMD searching skills--that this is a mere reaction to the Twinrix shot I got yesterday. And hopefully not the flu or a chest infection because frankly 1- I don't have time to get sick and 2- I really just want to finish school, I'm so close I can taste it.

UPDATE: Rachael, my nurse, called and said you can be feverish for up to two days... eww. So I guess time will tell if this is the Hep. shot or something else. 

I apologize for the lack of posts, but I re-entered the life of a University student/hard work, no play OR pay for that matter.

This Tuesday I went back to clinic and was not looking forward to my visit. I was feeling pretty awesome and not dreading test results, but I had an ultrasound at 8 am and--to add insult to injury--my mom was unable to attend for the first time in a long time, which meant I had to wake up at the ungodly hour of 5:30 am (which I already do once a week for my Friday class anyway, but TWICE a week? ew.)

Anyway, I made it there on time despite an accident on the Gardiner, which triggered a lot of rubbernecking. The ultrasound went well--I think--besides them not knowing what CF was and basically asking me to hold my breath for 20 minutes straight (I actually think the technician didn't have a concept of time) and not knowing what my g-tube was. One technician actually thought it was a glob of ultrasound gelly on my stomach... brilliant. Also, they called my gallbladder 'deflated' which I am still not sure is an insult or not. Originally, they could not locate my gallbladder and accused me of eating, but I told them I DEFINITELY fasted and my rumbling stomach was proof of that.

Afterwards I headed back up to clinic (first, making a quick stop to Tim Horton’s for refueling) and it was a pretty uneventful morning. Weight stable, pfts up to 26% (from 25%) and I forgot to ask for the exact litres but I believe it is about .80 Ls up from .76 Ls which is 'stable' for me now. My pfts teeter between 25%-29%.  Which leads to my good news... I DON'T HAVE TO GO BACK FOR THREE MONTHS! Wooo. I have been going down at least monthly for the past year, so this is a nice break!

I saw Nancy, the same resident I saw during my hospitalization in January--before she went back to Vancouver for a few months--and she was amazed how well I look now. She kept saying, "I just can't get over it," every time she looked at me, because I looked so sick before. So, nice to know I don't look like death anymore.

I also saw Dr. Tullis who said she was not surprised TGH determined I was too healthy to go on the transplant list.

We talked about my health for about, oh, five minutes since it wasn't very eventful. Then I got to my good questions that I had been saving up.

Question one: Can I go on a Hot Air Balloon ride?

My Nana wanted me to ask this question, since we are planning to go--even though she won't ask her own doctor if she can go. So I did and they said it was the first time someone asked them that question BUT my oxygen saturation would be fine. Nancy actually calculated the exact numbers later and e-mailed me the results:

Hi Lindsay,

It turns out that the barometric pressure at 1000ft altitude is only slightly lower than it is at sea level, meaning that your oxygen levels should be essentially the same as they are on the ground.  Just make sure to steer clear of trees.  J

Have fun, and let us know how it goes.

-Nancy

My second question: What is going on with contact clinic?

I was glad I got to see Dr. Tullis about this, because she directs the clinic and has been dealing with the whole infection control situation from the beginning. So yes, I was correct in that there have been cases of cepacia showing up after a two-year period of time, however those cases are rare. Basically after the last case has shown up (which was in October last year) there is a certain interval of time that passes before the outbreak is declared 'over'. So after a three-month period (I believe, typing this from memory) of time the 'outbreak' is declared over.

After consulting an expert in the states and the infection control experts in the hospital, they have determined that a year is an ample buffer, especially since all 'contacts' have been tested and had negative cultures (they don't have cepacia). Furthermore, they will apparently still try to keep contacts close to the end of the day when they do decide to get rid of the contact clinic (which will be soon, but I don't think they have decided on a date yet). Doctors and nurses will continue to wear yellow gowns and the PFT lab poses low to no risk since the filters and mouthpieces are changed between patients and cepacia cannot live in the tubing beyond the filter. The most risk is always from the surfaces that you touch, so proper hand washing will be my best defense--of course I wash my hands obsessively anyway. That being said, I will still keep my appointments at the very beginning of the day (8:30 or 9:00 am).

The scary news?

They still don't know how this whole outbreak happened. All they know is that it came from one person/source and it was the Toronto strain, since all five people were on the ward and all five people got it at about the same time. So it did not spread from person to person. There were a few people with cepacia on the ward at the time, but one person in particular was quite sick and showed the same characteristics as the other people who also got cepacia. So there is a textbook summary of an otherwise sad and scary time for a lot of us CFers.

The learning continued...

I learned that there are even different types of pseudomonas aeruginosa (the bacteria I grow in my lungs). So, for instance, my type of pseudomonas might be harmful to another CFer and vice-versa. There are currently only 5 centres in Canada that can determine the type (genotype? I think is the proper term) of pseudomonas that you have, because the technology is expensive, but they are working on this because it would be useful to study the types and characteristics of different types of pseudo. Right now we are all thrown into one pot.

I got my chicken pox shot before I left... but also learned some terrible news before I escaped. They are starting a pre-cancer screening for all CF patients now since we have a higher-risk of developing colon cancer. Which means, yes you guessed it, I will have to get a colonoscopy. Before the nurse, Laura, finished her sentence I had already uttered the word 'no' with a disgusted look. But I will suck it up and go. Us lucky pre-tx patients get to go first! Woo!

All I can say is I better be REALLY drugged up. I want no memory of this horrible event.

This week has, so far, been one of those weeks where I find myself in a constant state of shock from the ignorance people are capable of. Yes, there are lots of decent people out there, but there are also a lot of people who just don't seem to give a damn. Kanye West actually symbolizes this week quite fittingly.

First, there is the annoying fact that for the first time in my four years at Guelph-Humber I decided to treat myself to a locker. This would save me the inconvenience of lugging around all my books up and down the spiral staircase. So, with my shiny new lock in hand (I even had to re-learn how to use a lock), I skipped merrily along to my registered (and paid for) locker only to find someone else had helped themselves to it! Being the nice person that I am, I left the invader an eviction notice (two, in fact). The "final notice" will be me getting security to physically cut off the lock and chuck their stuff somewhere. I don't care where. I really am nice.

But even that is just a minor blip in the week and it only translates more significantly on paper (rather, digital paper) than it does in real life.

Cut to my first magazine class of the year. I finally met the professor I've been receiving long e-mails (class related!) from over the past year. He seemed like a pretty decent guy until he shared one minor detail--he had the FLU! Not only that, but he openly joked about it saying how he didn't have a huge interest in H1N1 because it "only affects you young folks." I am so glad such a superior being will be spared the hardships of H1N1. Nevertheless, I was supposed to meet with him after class to discuss my own catch-up schedule (since I had to drop the prerequisite to his course last year), but I choose to beeline for the door instead.

Finally, today I went up to clinic to get my second Twinrix shot (not a full appt. just needed the nurse to give me the injection). I was there all of 20 minutes, but I noticed that "contacts" were at the clinic at the same time. This was at 9:30 in the morning and "contact" clinic is supposed to be at the very end of the day. For those of you who are not in the know, "contacts" are people who were exposed to the cepacia outbreak last October. Cepacia is a very dangerous bug for a person with CF to get, it makes infections more difficult to treat and transplant more difficult to survive. People with CF go through great lengths to avoid picking up cepacia. The "contacts" that were exposed to people that picked up cepacia last year do not necessarily have cepacia. Right now they have negative cultures. However, sometimes it takes up to two years to show up so many of these patients are playing the waiting game and are in a "grey area".

So right now there are (supposedly) three categories for our CF clinic:

1. Cepacia positive clinic (on Wednesdays)
2. Cepacia negative clinic (Tuesdays)
3. Contact clinic (Tuesdays)

Originally, after the outbreak occurred, cepacia negatives (that's me!) were told that contacts would go to clinic at the end of the day so as to avoid any risk. However, in the past few months I have witnessed this strict regime dwindle down to something that has become increasingly optional. Take for instance this morning, it was 9:30 am and contacts were already in clinic. As you can guess, I remain quite perturbed. I do everything in my power to stay healthy, one of my closest friends has CF but we never hang out in person because of risk, I am constantly dodging people who are sick (even my own professor) BUT the one place that should be a haven, sometimes feels like a death trap. Why bother separating the food on the plate if it is all going in the same place anyway?

Anyway, that concludes my four cents of the day.

I was going to publish something completely different tonight. But I heard this story on the news and then came across this article (extracted version below). It emphasizes two points: one, we never know when we have seen our last sunrise, had our last lunch with a friend or watched our last favourite comedy. And two, organ donation is very real. Lungs do not come from "Lung Mart"--though that would be convenient. Rather, they come from living, breathing, people who had a lot to offer the world and were taken from us prematurely. Thankfully, donors and their loved ones are strong and selfless enough to make the decision to donate their organs so that others can continue a legacy for two.

The lives of five people were saved Thursday by Travis Cooper, a LaSalle 18-year-old who crashed his motorcycle in London Tuesday and was kept on life support until his organs were harvested for transplant to people languishing on waiting lists.

MUGA, GERD, and PFTs
All are written with such ease
But if their meaning you want to know
Then to GOOGLE you must go.

Love Gramps

Today was my first day back to University in half a year. Back in December I started IV’s literally a couple days after my last exam of the first semester. I was pretty confident I would be off them and able to return by the start of our second semester in January. However, that was not the case and what started as “holiday IVs” turned into “I’ll be back soon IVs” and finally “extended leave IVs”. Even when I was in the hospital with daily fevers, hooked up to 24/7 oxygen and unable to eat, I was still pretty confident I could go back... that really sounds delusional now, doesn’t it?

As the weeks wore on in club med, I got the message my body was clearly trying to tell me: Time to take a break Lindsay!

I dropped the majority of my courses, but was still able to complete half of one via e-mail (the instructor is allowing me to continue the other half of the course this semester... it was pretty impossible to report on Guelph-Humber news from my bedside) and I was able to complete Statistics for Media.

GH Comeback
Now I am officially “back” with some minor adjustments. I decided to drop to part-time studies since I now have to wait an extra year to graduate anyway. This will allow me more time to do things I should be doing like working out. I will say though, this has been difficult for me as I feel quite capable of taking on a full load. But as is usually the case, what you want and what you need are different things.

Although it hasn’t even been a full year since I took my partial leave from school, it felt a little surreal to return. I received the mighty reality pinch when I was reminded that even though your world comes to a stop when you are cuffed to an IV machine, the rest of the world doesn’t lose its forward momentum. Unfortunately I have been mulling over this fact for a while now, usually things don’t bother me too much and I am able to take things in stride. But the fact that I was able to keep up in school all these years and suddenly not be able to is a little crushing. There is a buzz among the fourth year students who are excited to be finishing up and starting their lives (or moving on to the next phase of continuing education) and I have fallen behind the pack. I am used to being a front runner and I don’t really enjoy the rear view--okay, unless we're talking about James Franco.

I’m also a little worried that the finish line is getting pushed further and further back--so I hope it doesn’t fall out of site. I’m not trying to win a race, I just want to finish it! So let’s cross our fingers and hope that a silly little cold or chest exacerbation doesn’t trip me over the next year and a half. The final stretch is where all the sweat, tears and glory emerge.

Finding your Pace
Furthermore, I am contemplating--and seriously considering--applying for our professor’s (Mark Lipton) internship. I’m not sure if this is completely defeating the purpose of dropping down to part-time studies, but it is an opportunity and I rarely walk away from opportunities.

Admittedly, I have a tendency to dive into things, especially after sitting on the sidelines for such a long period of time. When you’ve been sick and made to feel useless, the second you feel better you want to break into a sprint before the pseudomonas (a bacteria I grow in my lungs) police can catch up. I guess the problem here is I need to learn to pace myself, but it is just so hard!

Especially when you are young with so many opportunities and more awareness than the average person (or so I assume) that time is not limitless.

So should I go for it all or be conservative and hold back? The jury is still out (the jury being the voices in my head). My mind is saying yes, but who knows what my lungs will think about this!

Drum roll please...
When I came home last night from a weekend in Collingwood there was a message on my phone from the Transplant Coordinator at TGH, Michelle. She said they had the meeting about me (which I originally plotted to send a spy to) and had decided that it is too early for me to go on the active transplant list. Also, all my tests looked great and I would be a suitable candidate for transplant in the future. Two for two!

A Different Type of Learning…
Today was my first day of school, but I spent it at St. Mikes instead. I was really tempted to cancel my CF clinic appointment but as one CFer reminded me, your health comes first. Again, I had to fast for an ultrasound (my last official transplant assessment test), which I wasn’t overly excited about. Turns out the lady who was supposed to do my ultrasound called in sick today, so my fast was in vain.

Funny enough, without even trying I gained weight since my last clinic appointment (which was one month ago) but sadly my PFTS dropped from .87 L to .76 L, which was a surprise to me seeing as I have been working out more than usual and feeling pretty good!

Alas, I have been stripped of my one-month appointment privileges and will have to go back in two weeks instead.

Getting Shot
One bonus of going for my tx assessment before I am sick enough to go on the list is that I can get all my lovely shots out of the way. Since your immune system is pretty much non-existent after tx, you need to get them all done before you go on the list. So today I got my first round of the Twinrix shot (for Hepatitis A+B) and the Gardasil shot (for HPV). I go back next week for my second round of the Twinrix shot—it is quite time consuming!

Here is my schedule:
Twinrix: Today, 7 days, 21 days and 6 months (4 shots total)
Gardasil: Today, 2 months, 6 months (3 shots total)
Varicella: 2 months apart (2 shots total)

I also found out that I have never had the chicken pox (which I knew, but they wanted to make sure). I have definitely been exposed to it—my best friend in elementary school had the chicken pox—but I somehow never got it, so I have to get the “chicken pox” shot/Varicella shot.

What else did I learn today? My blood type is O+, which can give to A+, B+ and AB+ (not that I am even big enough to give blood) and is also the most common blood type. Good news there.


Got Mono?
Where the good news does not continue is that I have never had the Epstein-Barr Virus which causes something you may be familiar with: mononucleosis. I am told this is not very common since most people have been infected with Epstein-Barr by adulthood (even if they have shown no symptoms). I have certainly been exposed to mono as well, but have mysteriously never got it (my sister even had it for months when we were sharing a bathroom… though admittedly I made her change to the basement bathroom. Mistake?) So why, you ask, is this a bad thing? Well, Epstein-Barr—while inconvenient—actually provides you some immunity from post-transplant lymphoma. So I guess I’ll try hanging out at the local high school to pick up some of that ever-popular mono.

The verdict is in and I feel pretty good about it, so tomorrow it is on to the next chapter and back to the books!

This is a couple minutes late for Media Monday but I had the day "off" to enjoy a nice little holiday we call Labour Day.

Talk about Labour, this girl Jessica is living with a lung function of 11% which makes tasks like getting dressed in the morning or putting on socks feel like the equivalent of running a marathon. Despite this, Jessica is participating in a 5K to raise awareness for organ donation in the UK (more specifically, a foundation called Live Life Then Give Life). She has been waiting for a new set of lungs for 4 years (and we thought our waiting list was long!)

Read all about her here.

Also check out Ronnie's blog at Run Sickboy Run where I discovered this inspirational story along with many others (including his own).

As my own--muchly overshadowed--sidenote, I went for my first kayak of the year today (I know, a little late... but it was chilly this year and I can't/refuse to drive the pickup truck). It felt great and I didn't get tired, even after an hour of kayaking in the rough waters of Georgian Bay I honestly felt like I could go all day. Yay stamina!

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.

To top off this post, here is a pic (not for kiddies):

I have referred to this site a number of times and it is usually successful in answering most questions you have thought of (and never thought of!): Cystic-L

It is actually a free e-mail service/support group for patients, families, friends and health-support workers of PWCF (people with Cystic Fibrosis) that started up in 1994. I used to subscribe to it, but then my inbox got increasingly crowded, so I opted to visit the 'handbook' section of the site instead. I recently found a new appreciation for this website when I clicked on the PFTs Explained For You! link. Amazing how after 22 years, I can still be confused by all the numbers on this test. The Handbook is a little outdated in some sections, but still very useful.

What is a PFT Test?
Here is a great video that shows what it is: PFT Test

The only difference with this one is that I am usually sitting down and my face turns a nice shade of lobster red. I also often see floaters/stars by the time I am done blowing, then I spend a lot of time talking to the respirologist so I can avoid doing it again. By the way, this shows one attempt--depending on how you fair, you will usually do multiple attempts until you have done the absolute best you can do (the average is 3-4 attempts).

I will try to explain more in-depth what a PFT test is later this week, but here is the gist of it:

• A PFT test measures the volume of air in your lungs and how much air you can blow out in one second (there are also many, many other things it tests **See Handbook above:" PFTS Explained for You!"** )
• This is important because it compares the functioning of your lungs to other people your age and size
• It helps determine what state your lungs are in, e.g. if you are stable, sick, need to be referred for a lung-transplant, etc.

My favourite part about going back to school is stocking up on necessary (and unnecessary) supplies. What can I say? White out, pens, file folders, notepads, sticky notes and binders all lead to my uncontrollable excitement. Maybe this is why I always end up with office jobs—the post-its get me every time.

So today I went to Dollarama with the intention of purchasing a few birthday cards and—as is usually the case with Dollarama—ended up walking out with much more than I had planned, including some lovely additions to my school supply collection. I only purchased a few file folders because I don’t really need much this year, but I realized that my list of back to school supplies has extended to include some rather unusual items.

Additional back to school necessities for Sept. 2009:

One of the most important weapons for avoiding colds, the flu and nasty bacteria—either of which could easily be a one-way ticket to months of IVs, lengthy hospital stays or transplant status. I wash my hands like crazy, but because I don’t travel with a kitchen sink and soap (my purse is not big enough) antibacterial is the only way. I am glad to see more places are setting up purell pump stations and more people are actually using it. It makes my job—of staying healthy as long as possible—a lot easier.

• Clorox Wipes

For the times people don’t wash their hands properly (we’ve all seen them in the bathrooms and been grossed out—you know who you are!!) and the times people sneeze and cough all over shared computers, equipment, etc. Clorox wipes are essential for any computer lab, which I consider a boardroom for bacteria plotting to take over the world.

• Cold FX

When Clorox and antibacterial fails you, there is Cold FX, which is plan C. Apparently the extra strength works wonders when you have the first signs of a cold or flu (e.g. sore throat). I think this September I will take the milder everyday version for preventative reasons, my faith has yet to be restored in my immune system.

• Vitamin C

Yet another immune system booster that is no big deal to add to my pill regime. I’m not big on drinking OJ unless I have a ridiculous sugar crash (I’m not diabetic, but my body likes to surprise me with sugar lows for the heck of it) sooo I prefer the pill form.

• Flu Shot and H1N1 Shot

I did not get my flu shot last year because I kept getting sick… so I've got to get on that this year. Also, because of the Mex—er, swine pigs (sorry, I’m a terrible person) I must weasel my way into getting the H1N1 shot. I was told that people with respiratory problems are always high priority anyway, so I will most likely be getting it (and it might be two shots). The media is already hyping up the back to school pandemic, so I’m not feeling so hot about adding that concern to my agenda. I really don’t think H1N1 will fit into my schedule this semester—sorry swine flu!

Fun fact, if someone is “high-risk” for flu complications in your household/someone you are close with, you should also get your flu shot because you can be a “carrier” (have no symptoms, but pass it on). That is probably a housewarming gift you should skip.

Other possible additions to my back to school shopping list: oil of oregano, tea tree oil and other immune-system boosting valuables.

Let’s start this Wednesday night off with the “c” word: compliance. It’s the word you hate to hear and it means you have to do what you are told when are told, no matter how much you bitch and moan about it.

I’ve never really had an issue with compliance, we’ve been pretty steady from the get-go and we are hardly ever separated. Sure, there are minor blips here and there, my leash gets a little loose and like an excited dog in the park I try to break free and chase the squirrels, mistaking a loose leash for a thing called freedom—but really all I end up doing is strangling myself and nursing the after effects of poor judgment. This is all figuratively speaking of course; I chase cute irresistible bunnies, not squirrels. Let’s be reasonable.

I am a little bit of a doctor’s pet in that I very, very rarely skip mask or physio treatments (I might miss part of one during the odd special occasion) and this is quite an accomplishment considering I have done three treatments daily for as long as I can remember (four treatments daily when I am sick, but that gets a little much). In fact, my friends are pretty surprised to learn all the shit I do when I stay over for a weekend. I would guesstimate that treatments take up 5 hours of my day, sometimes more, depending on the type of day it is. For instance: the “PEP” mask (which is a mask you breath into that creates positive pressure thus making you cough up the junk trapped in your lungs) supposedly takes 20 minutes. I say supposedly because it very rarely takes 20 minutes because of all the coughing it causes—40 minutes is more like it. Speaking of PEP I am always told I have “perfect” technique too… wow I’m such a brownnoser...

Anyway enough of my bragging and back to the issue of compliance, it is probably THE most important aspect of keeping healthy (or stable, which is what I consider “healthy”) with CF. So that is why I don’t miss treatments (not to say I am a complete angel). I suppose it is because I’ve been in the hospital easily over 10 times (I have lost count, so I just say 10+) and would do anything to stay the heck out of there. But mostly it is because my lungs are greedy little devils that require constant attention—missing one treatment=no sleep and coughing fits for moi.

But there are only so many hours in the day…

It is amazing where you can find the time if you really look. I am a bit of a scheduler, which is helpful, although I don’t follow times to a tee I have a general idea of when I do things. For instance, when I have a full time job (which I do in the summer) I wake up early for my mask + pep, do another one right when I get home (or after a snack) and another one around 11 at night. Strangely enough it is when I am on these tight schedules that I strive, because I am aware my time is so compressed and I am less likely to waste it. And yes, I am even able to fit in a workout (though I was much better with that last summer opposed to this summer…) and there is still time for downtime as well. It IS possible, just a little bit exhausting at times and you have to make a conscious decision about whether or not it is worth it for you.

Here’s my biggest reason for being compliant:

The day when I do go on the active transplant list I don’t want any regrets. No “What if I had taken better care of myself? What if I hadn’t skipped those treatments?” Regret is a horrible feeling and not one that I wish to experience when it comes to my health. Once the damage has been done there is no turning back. I want to know that when my time with these lungs has come to an end that I have made every last-ditch effort to keep these babies going—I do have a Scottish background after all and we like to make things last as long as possible.

Tonight I decided to sway from my regular holiday routine of eating, shopping and otherwise acting like a poster child for half of the seven deadly sins, choosing instead to hop on the treadmill and sweat like a pig.

It is important for everyone to exercise, but when you have infection-hungry lungs it is even more important. You would think that a transplant assessment hanging over my head would be motivation enough to workout daily, but as of late 1-2 times a week seems to be my max. If the amount of calories I consumed reflected in my BMI I could qualify for Biggest Loser and get my ass kicked by angry/hungry trainers—but sadly this is not the case and I will have to kick my own butt into shape. I’m not nearly as mean.

In order to do this I will have to actually set aside time to workout, which sounds simple enough but there are always better things to do like: sleep, shop, watch True Blood, search for future jobs, read texts from last night—you know the drill. I kept saying it would be easier to exercise more when I was done work; well, I’ve been done for two weeks now… We all know the “I have no time because of work” line is BS anyway. Who was I kidding?

Introducing my fitness goals for this month:

• Workout 3 times a week (30 mins cardio plus weight baring)
• 15 minutes at 4 mph on the treadmill (I currently do 10 minutes)

Let’s see what kind of trainer I can be.

I come across quite a few interesting websites and blogs regarding CF from time to time, so I will start sharing them here.

For today, I found this site called Club CF. Sounds oh-so-exclusive, but there is a section for caregivers too. I liked this site because it had a section for all ages (20+, 30+, 40+, etc.) and it had some inspirational stories. It seems a little bare right now, but I think it will catch on.

I may not be a marathon runner, but I imagine the most satisfying part of running a marathon would be triumphantly crossing the finish line to the cheers of slightly less-athletic folk—not all that exercise crap in between. After a marathon week (which flew by much faster than I anticipated—I guess I made good time?) I have finally crossed the finish line. I grabbed a Tim Horton’s right after.

Today was very brief and almost relaxing. My parental units and I had a visit with the social worker that lasted just over an hour. The basis of the meeting focused on drug coverage and financial security before and after tx. OHIP is not a guardian angel that has your back at anytime—as most of you have probably discovered—and thankfully I am still under my parents’ private insurance, effectively avoiding the pricey CF drugs that can cost hundreds of dollars each month. Post-tx some of the medication price tags get even bigger, one in particular costs upwards of 1000 dollars a month. Guess I’ll have to cut back on shoes and all things pretty. On the plus side, this is the perfect excuse to build up my emergency supply of pumps and boots now for future use.

Financially, post-tx planning is a lot of work. I am required to apply for the Trillium Drug Program, even though it will not really help me out too much because my parents are multi-millionaires according to the Canadian government (HA HA HA). Unfortunately I am a victim of the middle-class squeeze and not too much can be done about it. I also asked about ODSP (collecting disability) but I have to either be in school just part-time (which I am doing this year anyway) and I cannot work at all. That doesn’t really fly with me because I like to keep busy and not feel terribly useless, so I will work until I absolutely cannot anymore.

Looks like I have a lot of financial planning to do for the future. I can remain under my parents’ insurance as long as I am a student or until I turn 25, whichever comes first. I’ll have my diploma in journalism and BAA by next year…Masters, anyone?

It is important to have all this stuff set up now because once you go on the list there is no telling when you will get “the call.” The shortest wait was apparently six hours, the longest wait was three years. She said not to be surprised if you have to wait two years.

Before we tied up the meeting we got to the more personal questions that generally make me feel useless and juvenile like: do you do the cooking and housekeeping? Do you do the laundry? Grocery shopping? (Okay, I do the last one sometimes) and my answer to all of the above was “No, my mom does… that too, that too…” Publicly I am ashamed, but privately I am okay with NOT doing these things until I move out, officially grow up and settle into my lucrative career as a professional journalist… at age 30.

I really liked this social worker, she shared my sense of humor and was not too touchy-feely, which is a quality I despise in a social worker (e.g. "How do you feel? Are you sad? Are you mad? Do you hate your life?" etc.) That mushy junk turns my stomach.

Nice way to end the week!

Shout out to my family for coming along this week and a special thank-you to my Cystic Sista, H, who has been very supportive the past few months and gave me a very special friendship necklace to wear during my assessment week--I wore it everyday! (I will try to post a pic later... for now you should check out all her nice stuff at http://www.gothattitude.com)

**FYI for those of you who were trying to make comments on my posts and it wasn't working I THINK I fixed it now...**

After an amazing sleep-in and huge breakfast, we headed over to TGH for our appointment with the anesthesiologist, Dr. Karen McRae at noon. Let me just say, fascinating appointment. She described absolutely everything that will happen from how they retrieve donor organs to how they do the operation and threw in tidbits of interesting information. For instance, did you know that hearing is the most difficult sense to block once you are put to sleep? This is why you will hear rare accounts of people “remembering” their surgery—it is because they overheard something during their surgery. In order to avoid this type of memory, tx patients are given “amnesia” drugs after—erasing your memory, though it would have been cooler if they did it Men In Black flashy pen styles.

After this I prepared mentally for the dreaded MUGA scan, which my Cystic Sista, HArmstrong (I’ll just refer to her as H), had already warned me about. The MUGA scan determines how well your heart can handle stress, which is obviously very important for such a huge operation. H was not kidding, the test was hard! The first part was deceivingly easy, all I had to do was lie there while they injected radioactive tracer into an IV in my arm. They took pictures with a giant camera for about 30 minutes--the technician made a corny joke about them treating me like a pawn when I am a Bishop. Then came the second part of the test, which was designed by the devil. While lying down (and with the giant camera on top of me) I had to pedal (up to 40 on a gage… she originally said 50, but I couldn’t make it there) for as long as I could. Well, ladies and gents, pathetically enough I only made it for about one minute. I wasn’t pouring with sweat or anything, but I was soooo out of breath and I felt my heart thumping in my ears (also they told me to stay as still as possible, which meant I had to grip the side of the table because my body weight alone is not enough to keep the pedals from pushing me up…).

So I think the exercise portion of the MUGA succeeded at making me feel like a failure, as exercise tests usually do. Maybe I would have done better if I had my oxygen (for some reason they couldn’t supply it for me there…) or maybe not. In any case I am glad that is over and done with! I had a massive throbbing headache right after the test and for the remainder of the afternoon.

Before I left TGH I did one last blood test as a token of my appreciation (only three vials this time) to check PRA levels in my blood. This just checks for your immunity to other people (and I think other things too, but I can’t remember at this point.)

Back home tonight and I have Thursday off! All the ‘hard’ tests are officially over.

I woke up a little groggy today, only got about 5 hours of broken sleep. I tried to be as quiet as possible as I did my mask at 6:30 (my mom, dad and sister were still sleeping in our hotel room). We headed over to TGH at 7:30 for an echocardiogram (echo), which is basically just an ultrasound of your heart. This will show how well my heart pumps blood and provides a closer look at how the valves function. It is a really easy test; all I do is lie there while the technician places a wand on my chest. He explained everything I was seeing and hearing on the monitor, so I was getting my education… even if I just pretended to understand some things…

Since I was in and out pretty fast, we went back to the hotel room to meet my sister and go out for breakfast. Our next appointment was with the Transplant Coordinator nurse, Michelle. She told us a lot of stuff that we had already researched and knew, but thankfully we had because there was A LOT of information. She gave me a huge blue book that tells you exactly what to expect pre-tx, during tx and post-tx. It is even broken down into an hour-by-hour basis. To date, I have only read about 5 pages—I need digestible chunks of info and some of it is hard to chew.

A Glimpse Into the Future

Michelle told us that 90% of tx patients experience at least one of two complications: rejection or infection. So you have to expect that you WILL get rejection and infection. Rejection, because you are introducing something foreign to your body. For instance, when you get a splinter your body wants to attack and destroy and get it out of you. So, in order to avoid this type of assault on your brand new sparkly lungs, tx patients are put on immunosuppressants (medications that lower the immune system and ‘trick’ your body into accepting your new tenants) for the rest of their lives. Of course, without a strong immune system you are open to the next complication: infection.

Anyway, those are two complications that are to be expected. Along with a host of other complications that are tag-a-longs. In response to these complications there is a long list of combative medications, which can also lead to more complications! Mind you, looking at the list of medications, I have already been on some of them including the most evil of them—prednisone, which I have been on for most of my life already. So who knows?

The message of the meeting was basically this: Transplant is a treatment NOT a cure. This is what makes it difficult for a lot of people deciding whether or not to go on the list. Essentially you are trading one set of familiar problems for another set of unfamiliar problems.

The Verdict on Living Donors

We also asked about the possibility of living donors. It has not been done at TGH yet and it seems to be discouraged—rightfully so, because it is a huge decision with questionable ethics. With a living donor donation a lobe is taken from two separate donors, which are then placed into the recipient. Those two lobes become the recipients two lungs. The donors have to be a certain height taller than the recipient, which makes me an ideal candidate because I am tiny (it is usually done on people who are smaller or children). However, the donors will lose a percentage of their lung function permanently and are at risk for complications like infection. While I would feel just fine with 2 lobes (normal lungs have 5 lobes) because my body is adjusted to crappy lung function, the donors would feel pretty horrible because they are accustomed to full lung function. Also, unlike the liver, the lungs do not regenerate and grow back.

Donors would also have to undergo more rigorous testing than me and I would have to have five potential candidates PLUS caregivers/support people for the donors (they would only pick two donors of the five) and me. SO doesn’t look like living donation will be an option for me.

Other things I've learned…

People with Cystic Fibrosis are not allowed to hang out after tx, even if both of them have had a tx.

For those of you who don’t know, people with CF are not allowed to hang out because we grow bugs in our lungs that can be harmful to each other. We constantly go through great lengths to avoid each other, which is especially hard when we are in the hospital or at clinic at the same time. I will probably expand on this later.

All-in-all very informative meeting.

Test One, Two...

I only had two more tests after this meeting. One was a CT scan of my chest and sinuses. Really simple, you just lie there (again) and the machine talks to you in a robotic demanding voice (breath in, hold, breath). This test was soooo much easier than it was in January. In January I was panicking about holding my breath long enough (it feels like it is about 10 seconds?) but this time I had no problem.

The last test was a six-minute walk, which is exactly how it sounds. A physiotherapist will time you as you walk and then record how much ground you were able to cover in six minutes. I did this test before when I went for my consultation in May, only this time I used my oxygen (3 L on pulse. Pulse means it gives me oxygen when I breath in, rather than a constant flow) and wore running shoes instead of heels. This time I actually broke my record (which was already pretty decent) by 34 metres! I can now cover 529 metres in 6 minutes, which is amazing! Woo! (I usually will not be walking that fast though… my fast-walking/sprinter friends can dream on...)

I was really tired after the tests today… so I napped for about an hour when I got back to our hotel room. We went out for another nice dinner at the distillery district (got lost for about 30 mins first, thanks E for your help!), then went to a pub and had sangria (I have a test tomorrow that says I can’t have any caffeine for 24 hrs before, so I replaced caffeine with alcohol). Tomorrow doesn’t start until 12, so I will get my sleep-in!

P.S. Thanks to my sister for coming today even though it was her big 2-0.

First thing I noticed about TGH? The food court. I had been fasting for 12 hours, which meant I was 1-caffiene deprived 2-ravenous and 3-easily irritated. So it didn’t help that I was walking through this amazing food court with all the trimmings (did you know TGH has two Tim Horton’s and a Starbucks? Now you do.)

I had been up since 5:30 in order to get downtown by 7:30 and we had made good timing, which excited me because it meant I could break my fast a little earlier (can you tell I dread fasting?) TGH is a beautiful hospital to navigate compared to St. Mikes, I only had to put my glasses on once to read the signs.

First, I went upstairs to register with the pre-assessment office and grab my new schedule, then headed on down to the blood lab. The waiting room was packed! There were tons of people there and thanks to my eavesdropping skills I learned that most of these people were either pre or post-tx (tx = transplant).

Unfortunately, one woman was a little too open about her tx experience (deciding to speak at a volume that could wake the dead…which I know because it woke me up) and decided to blab about how everyone should be an organ donor and it should be an automatic process, blah blah BLAH. While I am obviously pro-organ donation (and bias because I need one in the future) I am not about shoving my opinion down peoples’ throats and this woman was making me regurgitate before 9 am. Anyway, a few of us laughed in the corner, then I got called for blood work—where they proceeded to help themselves to 11 vials of my blood like it was a vampire buffet. After blood work I was a happy camper because that meant I could indulge in the awesome food court and have my morning tea!

Next I went for chest x-rays, which are pretty routine. I ended up waiting there for quite a while because they accidentally forgot about me, which is not routine… BUT I met two brothers who had already had lung transplants. One was getting assessed for his second transplant, while the other said he was going to be assessed for his third transplant soon. The second brother had his second transplant in 1994—a time when second transplants were not common—and was only given a 5% chance of survival. Obviously, he has since beat those odds!

After x-rays I met with the dietician. At the risk of sounding negative I will just come out and say it: I wasn’t a fan. Not only did she not bother to weigh or measure me, but also she rounded my height to five feet (I am flattered, but let’s be realistic here, I’m barely 4’10) and guesstimated my BMI. Ummm sorry but that is not really professional when you are evaluating someone to see if they are a suitable candidate for the biggest surgery they can have! So I wasn’t a fan of her, especially after she said my BMI was 18 and ‘just good enough’, I know for a fact it is higher! And yes, this is a sensitive subject because I work hard to get my weight on. I may even lose sleep tonight.

Anyway, after that I only had one more test left called a V/Q perfusion scan—basically you have dye injected into your vein and you lie under a camera that traces the dye to see how the blood and airflow is distributed into your lungs. Sometimes one lung will have more blood flow than the other because it has been more damaged from infection. This will serve as a guide in the future during the tx to help decide which lung to remove first.

All in all it was a pretty good day, everything ran extremely smoothly and on-time. The hospital environment was pretty relaxed and although I am exhausted from all the waiting around, I was more than okay because my parents booked the Delta Chelsea for two nights so I would have close sleeping quarters to the hospital. Tonight we went out for my sister’s 20th birthday dinner, ate good food, drank good wine and made the best of our hospiday (I tried to figure out a clever way to put holiday and hospital together...)

One day down, three to go.

So now that I have spent a good hour on blog aesthetics, I should probably actually BLOG. Admittedly, I have had a blog before, but not with purpose and it was usually reserved for emo-tastic, teenaged rants. Now, I proudly present to you my blog with a purpose, a rather big one at that: to document my journey with Cystic Fibrosis.

For those of you who are new to my world …

Scientifically speaking, Cystic Fibrosis (CF) is a genetic disease (you can’t catch it, no matter how badly you want to!) that affects the lungs and digestive system. A thick build-up of mucus in the lungs causes chronic infections and inflammation, which in turn causes severe breathing problems. In the digestive system, the pancreas is unable to release enzymes to the intestines to digest food because of the thick mucus blocking its way. This makes it difficult to both digest food and absorb nutrients.

Personally speaking, CF is a job that requires hard work, dedication and few benefits. On average, I commit 6 hrs a day to treatments. CF is also a character builder, a binding element for friends and family and so much more.

What does this translate to?

Well, in order to prevent these lovely infections and keep my lungs as clear as possible I must do physiotherapy three times a day (20-40 mins each) and inhaled antibiotics twice a day. I also take pills (artificial enzymes) to help me digest my food and lots of other pills to control things like GERD, inflammation and infection. If you shook me, I would probably rattle—not that I am suggesting this!

So that’s my real deal…

And for those of you that have been following me closely this past year, you know that it has been quite an interesting year health-wise for me. I spent 10 weeks on IV antibiotics and endured countless antibiotic changes due to allergic reactions and certain combos simply not working. It was a year of not-so-brag-worthy firsts including: my first time spending six weeks in the hospital (usually it is one week, two weeks max), first time spending 10 weeks on IVs, first time spending my birthday in the hospital and first time needing to use oxygen.

It was around the time of my 6-week stint at St. Mikes Hospital in Toronto (which I lovingly refer to as a 2 star hotel) that the decision was made to begin the assessment process at Toronto General Hospital (TGH) for a double lung transplant. To be clear, this does not mean I will be going onto the 'active' list and actually physically preparing for a transplant. Rather, it means that I will be going through all the tests to see if either:

1. It is too early for me to go on the transplant list and they will follow me closely in the future
2. I should go on the list now (unlikely) OR
3. I am not a suitable candidate for transplant (I am told this is very rare for people with Cystic Fibrosis because we are so young)

**FYI I have my fingers crossed for option 1**

Why am I doing this now?

Well for starters, the assessment process is a very long process (one week) that involves long days, lots of tests and meetings and lots of traveling. All of this requires energy that is simply not available when you are sick and all you desire to do it watch trashy television or What Not to Wear and lie in bed.

Secondly, CF is unpredictable and I am unpredictable. I have not had a ‘steady decline’ rather, I was once on IVs yearly (or more) when I was a patient at Sick Kids and I had significantly low lung function (so low that they suggested I be placed on the transplant list). However, my health improved and I have been able to go longer without IV treatments—for reasons unknown. My standing record is 3 years, but the time I am spending on IVs is becoming longer and infections are becoming more aggressive.

Thirdly, I am playing the number game. When CFers talk about their lung health they tend to use a lot of numbers: PFT (Pulmonary Function Tests—which is a machine you blow into that calculates how much air you can blow out) numbers, such as FEV1 are important indicators of lung health. FEV1 is important because it shows how much air you can blow out of your lungs in a second—this is an indicator of how much obstruction you have. For instance, someone my age and height should have an FEV1 of 2.25 L and my FEV1 is 0.87 L, so I essentially have a little more than half a working lung. That sounds much more dramatic than it is though...

So there is your CF 101 for now. Staying tuned for Day 1 of my transplant assessment (also referred to as tx)!