Thursday, January 24, 2013


Here's a (long) play-by-play of my visit to the University of Chicago today....well, it actually started yesterday. (Scroll down to the bottom for a very shortened version)
I know I add a traffic picture to a lot of my clinic posts,
but I forget how much I strongly dislike
going-in-the-city-expressway traffic.
Yesterday, after work I set up everything for the sub today, went home, packed my car with all of my crap for an overnight & clinic visit (treatments, medical records, snacks, change of clothes, etc) and headed to my parents' house around 5pm. I arrived at their house around 7:30, ate dinner, chatted with my parents, did my treatments, took a shower and went to bed, only to be up by 5:15am to do my treatments and eat again. Thankfully, my parents house is much closer to the hospital (only about 45 minutes without traffic) so I left their house around 7:15 for my appointment at 9.
I got to the hospital around 8:30 and went to the Endocrinology wing. Surprisingly they got me in a room before 9, but don't get too excited, because of course I didn't see the doctor until almost 10. This was the first time meeting this Endo. and he was wonderful! He listened to me (which didn't happen the last time I saw an Endo.) and I learned a lot from what he explained to me. Basically, since I retested on Monday and the test was pretty much normal, I'm still not considered CFRD (yay!). I'm still borderline. Also, since I've been testing my blood sugars for the past couple weeks, we noticed that I've had a few low sugar times - mostly between breakfast and lunch when I can't fit a snack in at work- so he said he wants me to work on controlling the lows before we address the highs (which I don't have a lot of at all).
My next steps include adding more high-protein, high-fat/calorie snacks into my daily routine, especially during the school day. This will hopefully help keep my sugars more regular throughout the day. I also need to try to add more protein to my breakfast in hopes that I don't get low so quickly before lunch.

This is the poster I stared at for an hour and a half
in my room while I waited to see the doctor. It's a great, simple
explanation of CF lungs. :-)
I finished up with the Endo around 11, just in time for me to go one floor down and check in for my CF appointment at 11:30. They took me in close to 11:30, checked my vitals and I sat in the room until about 1-1:15 until I saw the doctor. In that time though, I did do my PFTs. Going into it I was feeling good. I was a little worried that since my weight has dropped (109.4 today - yikes!) that my lung function would go with it since they usually go hand in hand. But, I was feeling really good, so I was hoping for the best. The first one felt good and when I looked up at the screen, the first number I saw was 79 and was super bummed! And I said, "Oh man! I haven't been that low in a long time!" And the RT looked confused at my reaction and pointed to where I should have looked...the beautiful number: 86! YES! It's not a significant change, but I'll take it! I was so excited. So I did the test again (we always do three) and I blew an FEV1 of 88! Coughed a little bit and said, "Alright, lets go for 90." Well, this one wasn't as great and turned out to be 84. The RT said that I was getting too tired and we stopped there. My FEV1 averaged out to 86% - woo hoo!
My CF doctor was very happy with my results. She said that my graph looked very "pretty" and NORMAL! We discussed my weight loss and attributed it to me burning more calories at work, not in-taking enough calories throughout the day and some malabsorption issues I've been having with my enzymes. We decided to try switching my enzymes to Zenpep to see if that'll help me absorb more calories along with eating more during the day. Other than that, she was very pleased with my health and agrees that I'm still borderline CFRD.
The view of the sunset on the drive home :)
I left her office around 2:00, went straight to the lab to get six vials of blood drawn, then back to the Endocrinology department to meet with the diabetes educator so she could show me how to give myself insulin shots if/when the time comes for me to need that. We figured it would be better for me to learn now, just in case we decided I need it later, then I wouldn't have to schedule an appt with her (3 hours away) just to learn how to do it.
Around 2:45, I went down to radiology to get my annual chest x-ray. Of course I got stuck with the technician who didn't know what they were doing, so he had to take a couple extra shots and ask for help a couple times. My last stop was to pay for parking at 3:30! That's seven hours at the hospital! Needless to say, it was a LONG day. Plus, don't forget the 3 hour straight drive home. Phew!

Here's the short version:
~365 miles of driving
~7 hours of driving
~One tank of gas
7 hours at the hospital
Several hours of waiting
$18.00 for parking
109.4 lbs
86% lung function! = LONG, excellent clinic visit for me! :-)


  1. I gained 10 pounds after starting Zenpep! It allowed me to reach a higher baseline weight than I had EVER had before. It was a gradual change though (over 9-12 months).

    Also, from one borderline CFRD-er to another, I have to say I am becoming more and more convinced that diet does play more of a role than most people think. My sugars have actually gotten significantly BETTER over the last 2-3 years as I have slowly changed my diet to be a very healthy/natural diet extremely low in processed foods and sugar. I didn't think it was possible to get BETTER sugar numbers over time with CF, esp with a pancreas as totally shot as mine is (which it totally is), but I have and they have even stayed great through pregnancy. I have always had problems with hypoglycemia (lows) and unstable sugars in general and figured a few years ago when I got a glucose intolerant (pre-diabetic) result, that meant I was for sure going to end up diabetic in the next few years... but so far, nope! So, there's definitely hope for holding it off awhile. :) Glad everything went so well!

  2. Busy busy busy Colleen!!! What a week you have had my friend!! Looks like everything went pretty darn well I would say. I am so glad you are taking EXCELLENT care of yourself. Those PFT #'s are great.

    As far as addding additional protein to your breakfast I suggest adding egg beaters. They are easy pour them out of the carton into the pan and done in a minute. They are full of protein and are way better then having just a plain old egg.

  3. Congrats on your PFT!!! That's exciting! Keep us posted on how the weight gain goes. I've been struggling with that since I got sick. I just haven't been able to put any on.