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):