Today, nature sided with my mood -- we clouded over, let ourselves be dark and released our inner frustrations.

SO tired of the lack of sleep due to treatments.
Tired of IVs.
. . . of CF being my life and definition.
. . . of being asked a million and one questions.
. . . of being sick on special occasions or my birthday.
. . . of temporary wellness.
. . . of living in limbo.
. . . of having barely enough time to take a shower.
. . . of constantly ordering supplies and booking appointments.
. . . of ALWAYS doing physio, that doesn't even seem to work anymore.
. . . of feeling like a 24-year-old trapped in the body of an 90-year-old.
. . . of being infantilized.
. . . of people telling me I don't look or act sick (though it is flattering).
. . . of being bored. 
. . . of exercising three times a week with (mostly) ex-smokers three times my age.
. . . of feeling unplugged.
. . . of being dependent on others.

October 24, 2011

Tuesday's clinic (before my brief admission) brought me a warning of what was to come, one of the first sentences out of the resident's mouth was "What status are you?" to which I responded status one-- not really giving it much thought because "status" has been a flitting topic all summer long, with most agreeing that status 1 was still suitable for me.

Next thing I knew, the resident returned with my doctor and we were discussing my 'status' with a new sense of focus-- no longer flitting. The doctor came up with an interesting analogy to illustrate her point: she said to picture my declining lung function as a slow descent into a pool. As you first ease into a pool you can still breath and the drops don't matter so much. However, when you're chin deep in the water, each drop, each tiny drop in lung function matters, and it takes just a tiny step more to drown you-- you just never know when that tiny step is going to be. Hence, the moral of the story is when you're chin deep in the water, it's really not the time to play chicken. 

July 27

It's been just over three months since I've been listed-- that's the first trimester of listing, gone. Now the real fun begins, right? This is the part where I get (acceptably) fat and walk around with an energized glow about me, excited by the thought of my new arrival. Scratch that, this is the part where fantasy wilts under the shadow of real life. That 'glow' is really a sunburn from your Cipro induced photo-sensitivity, that fat behaviour is getting you nowhere because you can never replace the calories you're burning, and that new arrival is already causing you stress and sleepless nights because you don't know when it's coming or if you'll even know what to do with it when it does. Things like this make me write run-on sentences without a thread of guilt.

June 6, 2011

Limbo has become a little boring as of late, every week is devoted to what seems like treatment-filled days and physio. I've transferred to a physio/rehab place closer to home, so that has helped free up a little bit of time. I was feeling great for two weeks, so I developed the hopeful/cocky notion that I would be able to go on 'hold' on the transplant list (exactly what it sounds like, hitting the pause button), and enjoy the bliss that is an unleashed summer. It was a Utopian idea that is starting to get smaller and smaller in the rear view mirror as my lungs take over the wheel and I'm simply a passenger. Sound depressing? Well, it kind of is... but it's not forever.

Last week I turned the corner, finally: my WBC inched below 11, meaning my infection was under control for the first time in months, wheezing nearly vanished, and shortness of breath decreased--all good things. I embraced this positive news with a practiced sense of caution, and sure enough hours later was served up another challenge: I had to change rooms... to a semi-private.

No one likes a semi-private, but I'm not fully opposed, since I've endured it several times before and I'm no princess (officially). But something about this move set off a mental quake; when your health deteriorates before you, when your body crumbles and chisels away at the life you once knew, you cling to the familiar (whatever that might be). This might be a stretch, but it reminds me of 'normalcy' in disaster zones that is maintained by keeping to routine, be it going to church, attending school, or playing a game of chess (as I assume chess is the post disaster game of choice). My 'normal' was creating my own space in an otherwise very abnormal home and the second my security blanket was ripped away, I felt far more vulnerable than I have in a long time. My illusion of control was suddenly very clear; I haven't really had that much control. 

I was rather surprised when I noticed I had a missed call from 'unknown' yesterday morning, although it  should surprise no one that I didn't pick up since a) I rarely pick up my phone, and half the time my cell refuses to work anyway and b) Unknown, really? Do I want to speak to you? Not talking to strangers is a golden rule in life. However, these days 'unknown' usually means a phone call from TGH or Sick Kids (trying to rope me into another study [I've already done 5 billion]... I played the transplant card and I don't think they'll be calling... ever again).

After checking my messages, I confirmed that the call was from my transplant coordinator and she wanted to discuss the results of Thursday night's meeting. Following a brief sweaty-palmed game of phone tag, we finally got in touch and she delivered the verdict:

Backtracking: February 15th
Procrastinators take note: it is never a good idea to fall behind on documenting your own health record.

First, you may notice I've changed my blog around a tad (ok more than a tad) in order to avoid the actual 'work' that needed to be done. I realize Grandparents will be sending me evil e-mails regarding this change so let me try to make this transition easier: 1. To leave a comment you have to click on the post you are reading to see the 'comment' box, and 2. All my tags and blogs I follow, etc. links are grouped at the bottom of the page... I'll try to fix this if I'm feeling ambitious again.

Now onto the fascinating storytelling...

The next clinic on Feb 15, started out semi-promising (so it seemed); my PFTs were back up to 25% and I was feeling ok. But when the new fellow (who I've grown to love) entered the room, all of my inflated sense of health quickly deflated and I was hit with a tsunami of information. First, we agreed that just 'ok' was not good enough and that obviously I had reached my plateau with Cipro and oral antibiotics in general--this point was emphasized by the fact that my WBC (which hadn't been checked the week before) was 17. Yikes. FYI: anything below 10 is normal.

Then and there we quickly decided that I needed IV antibiotics and before you could blink I was down in radiology getting a PICC line inserted. In fact, this happened SO fast that I had to send my mom out to buy me a t-shirt, while my arm was being sliced open, since my long-sleeved shirt was no longer a practical option and hospital gowns are never an option in my opinion.  I opted to subject my right arm to the PICC line fun this time around, since my left arm is a big spaz (veins spasm, that play on words sounded more entertaining in my head) which is not hospitable for the wire rode that wants nothing more but smooth entry into your superior vena cava. As a result of my decision, they got the PICC line in first try, no problems!

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.

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!

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)!