Miss Know-It-All

Wednesday morning when I woke up 10 minutes before my alarm, restless, and got out of bed.  I couldn't figure out why my body didn't want to sleep anymore.  Aha, Dad discovered it, the oxygen dewar had run out in the night - whoops.  My sats weren't too bad, about 88%, so he switched it over to the other one.  One doesn't last me very long anymore.  I remember when I would go 2 weeks on one fill with only one dewar.  Now it is 2 dewars filled weekly.  My handy little Helios (which I fill from the dewar) keeps me supplied with oxygen while I'm out and about - though it doesn't last nearly as long as it needs to, and is quite heavy and cumbersome.

I decided I'd at least get up and do a vest and my nebs before I went back to sleep.  For some strange reason I never did go back and lay down, instead, leisurely getting myself ready to leave the house to run some errands and go to the doctor later.  It was a very productive appointment, as we were able to discuss my hospital stay, the things which were good and also the areas that needed improvement.  The good thing about being the squeaky (or maybe bossy) wheel when you're in the hospital is that things get done, and if you're lucky, they change.  I was SO lucky to have such willing staff, that they listened to my concerns, met my needs (with very little attitude, for as much as I was dishing out) and were eager to make the changes necessary to better understand and meet the needs of patients in the future.  It may be only a job to some, but to me, it's my life - I can't always wait for the next shift to say something!

At the appointment, I mentioned that since I had been diagnosed with diabetes 12 years ago, I could probably do with a refresher diabetes education course.  They agreed and had the diabetes specialist come talk to me before I left.  She brought with her a handy little booklet that I had never seen before called "Managing Cystic Fibrosis-Related Diabetes"... Apparently they know much more about it now! Great! She held it up and asked if I still had one - I've never even seen it! I all but snatched it away from her.  I was so excited to get my hands on something that would help me better control my diabetes.  For those of you with CFRD, I recommend asking one of your docs about this booklet.  It's put out by the CFF.

I was explaining to a friend of mine yesterday afternoon that I love learning, but then I corrected myself, instead stating that I love knowing things.  As far as I know, there is no way to download information instantly to my brain, so I either have to hear it or read it before I can pass it on.  I recently went on a book binge.  One of the 9 books I purchased is called Sick Girl Speaks!  I have only made it about 35 pages so far, but I wish I were finished with it so I could know everything inside.  It's not that reading isn't a pleasurable way to spend my idle time (of which I have much), it's just that there's simply not enough time to read everything I want to know.  (I'm not blessed with the speed-reading gene) And the more I read, the more I realize I don't know.  And what you don't know can definitely hurt you.

Almost forgot the PFT update: FEV1 31%, FVC 50%... I'll take it! :)

another appointment

I went to the clinic to give a sputum sample (aka, spit in a cup. yeah, i know, real attractive) so they can determine which organisms (viruses, bacteria, fungi) I have in my lungs. The main two reasons I wanted to have one done were a) because I wasn't getting over this cold I had been fighting and b) I wanted to make sure that I tested negative for a certain strain of bacteria (Burkholderia cepacia) which would make me ineligible for transplant.  And that would be BAD NEWS.

busy girl

Had an eventful week so I thought I'd update! On Friday, February 19, my alma mater, held a Pancake Supper fundraiser before the home basketball games for my transplant fund. It was wonderful, the support was over-whelming! I am truly blessed to have so many people who want to help. On Sunday, my dad and I went to Omaha and Monday I had appointments with my doctors. Even though I felt I had a cold since Saturday, my lung function tests showed improvement - 50% capacity and 31% function... I was shocked! My oxygen saturation was a bit down at 85% so they had some tanks delivered to me so I could wear it in the car on the way home on Tuesday. Also, since Saturday I have been having severe headaches off and on. They are exacerbated by coughing, which is not good for me, because I am always coughing! The past 48 hours have been really rough, so I went to the doctor today, then to get an MRI (which is very unpleasant if you have a headache and have the urge to cough the whole time). Hopefully I will know more tomorrow. That's about all I've got. Still waiting for that call for lungs, but it will come eventually!