Tuesday, 19 June 2012

CFRD loathing

I swear, I miss everything! Why does Brad get to witness such fascinating exploits while I only get the Hahaha-guess-what-you-missed version afterwards??

My absence from the first can be attributed to the fact that I was starving (after having fasted for my blood tests) and was inside the hospital's Tim Hortons. That story goes like this: Buddy comes in and uses the phone at the information desk; apparently from what Brad gathered, this is a normal occurrence. Today he decides to call everybody in his life...from that phone. Info desk lady tells him he can't tie up the hospital phone. So, in true big city fashion, buddy starts yelling, and somehow deduces that since he pays taxes he can use the phone all he wants. Yada, yada, yada...in comes security...buddy says "buy me a tea and I'll leave"....blah, blah, blah...buddy's out the door.

Second incident happened outside the hospital where buddy # 2 was arrested. Brad was able to feast his eyes on buddy kicking the cops and backup being called. Now, please....I do not think people should take part in illegal endeavors, nor do I hang out at the police station, surveying the scene for kicks, however, I do believe that since I'm here waiting for new chunky lungs, devoted to my physio, attending appointment after appointment...I should at least get to witness this stuff!!!

Today was my first CF clinic since being listed, but was my second time at this particular clinic. The health team there is great, although I will admit, being at clinic made me miss the great team in Halifax. We arrived there at 9:30AM and didn't get home until 2:30PM. First up was blood work where I learned that the technician sucking blood out of my veins was going to drive from Toronto to New Brunswick to Prince Edward Island to Nova Scotia to Newfoundland and back to Toronto...all in 3 weeks.

Good luck with that!

Next came PFTs (pulmonary function tests), which showed that my lungs are holding steady and then I got to spend some time with a nurse practitioner, who is fantastic, and the Respiratory Specialist. Basically, the CF clinic's job while I'm in listed is to make sure I'm the healthiest I can be at the time of transplant.

My biggest problem right now (aside from the craptastic lungs) is my blood sugars. As I mentioned in my profile, I have CFRD, which is Cystic Fibrosis Related Diabetes.

Diabetes is enemy # 1!!

Believe it or not, I hate my diabetes more than my CF. Yes, hate. Diabetes is extremely hard to manage; it is very, very tricky and things can change so easily. Being here and doing all the walking has made my levels wonky. I am having too many lows, which is A) annoying and B) dangerous.

I was told today that low blood sugar, known as diabetic hypoglycemia, can damage brain cells (of course it's more complicated than that), so it's even more important that I get this diabetes thing under control. Immediately after transplant, the diabetes gets even more wonky due to high doses of prednisone. So I need help! We are going to go in and talk to the nurse practitioner, who's also a certified diabetes instructor, again to figure things out and perhaps get information about the insulin pump.

From now on my excuse for anything I'll do wrong will be: "It's not my fault! It's the brain damage from low blood sugars combined with a lack of oxygen". Always good to have a plan folks.

Tonight Brad walked to TGH for a pre-transplant education session (CF patients aren't allowed to go due to cross-contamination). We were all excited about what he would learn and he was going to ask the instructor if he could facetime (an iphone video thing) me in so I could be there without "being there". It was supposed to start at 5:30PM.

5:30 I get a phone call. It's Brad. "Man we're stupid! Look at the paper". OMG. It was yesterday.

K, Brad...I've got the low blood sugar and oxygen thing...what's your excuse?

I got mail today!!! Fun mail! My first mail in Toronto!!!
A cystic knows what a fellow cystic wants

Megan is on the ACFC (adult cystic fibrosis committee) with me. She also happens to be really cool. And she just made me a happy girl!

Why does getting mail make me squeal like I used to on Christmas morning?

11 comments:

  1. Ok, my excuse is that you (Jessica Louise Carver) said "Brad, can you attend a session for me on Tuesday night? I am not allowed to go as I have CF but hopefully you can FaceTime me."
    The problem was that YOU thought Today was the 18th?? It's ok, I enjoyed the hour walk in 44 degree heat in smog.... It was quite refreshing ��

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    1. Misquote! We both looked at the paper together!! You, most likely, need new glasses.

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  2. I see Brad is still a whimp. Nothing wrong with 44 degrees. Looks like a nice package you got there. Look forward to the phone call(s) we get everyday. Always some news to catch up on. Only 8 more sleeps till we see each other, very excited. Luv ya

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    1. Haha, such a handsome one though. Can't wait to see you guys!!! Love you!

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  3. Just to clear something up that Brad brought up (and disagrees with) ...Starting a sentence with a conjunction such as "and" IS grammatically correct. I promise.

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  4. It may be correct but It looks ridiculous. I can tell you for certain miss grammar, that the word "Prevalent" is NOT pronounced PRE-VAIL-ENT.

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    1. That was merely a moment of oxygen deprivation...that or low blood sugar.

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  5. Hi, they are driving a ford, its easy to go from TO to NB, PEI, NS & NL in 3 weeks, he was a trucker and he is used to having the blood life sucked out of him thats why he can make the trip, Wayne

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    1. Wayne, you have me so confused! Who is they?

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  6. Hey Jess! Ive been seeing Janey once a week now cuz my sugar bloodwork came back and now I have to monitor my sugars alot more than before... Seem like everytime I turn around I gotta stab myself... Ur not the only one who hates CFRD... I can handle having CF but the both combined is over whelming at times... Im eating like 8-9 times a day and Im so full and Im getting sick of the sight of food... lol By ur blogs it seems like ur doing good and hopefully not getting to buff... lol Take care girl xo
    Jennifer Crouse

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    1. Janey's great; make sure you listen to her!!!

      My body's a machine...most people are frightened by my physique ;)

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