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.