Monday, March 5, 2012


I am very sad (and mad, and disappointed) to report that I have to reset my compliance count. :-( This weekend Tim and I went out of town to celebrate his grandma's birthday and his great-grandma's 98th birthday!! We carpooled with Tim's aunt and uncle, so when I saw them in our driveway Saturday morning, I grabbed all of my things (about 3 different bags - one for Vest, one for clothes, the other for nebs) which I had all packed up and ready to go, and we were on our merry way. It wasn't until Saturday evening when I went to do my second treatment for the day, I realized I left most of my nebulizers and viles on the table - still drying from my morning treatment!! AHHHH!!! I was so MAD!  All I had with me was my Pulmozyme for that evening, but no Albuterol for that treatment and the morning one, and no Hypertonic Saline for my Sunday morning treatment. I did my Vest for thirty minutes like I usually do, that evening and Sunday morning, but it definitely wasn't as productive without my nebs.
When we got back last night, I did my regular round of treatments with all of my nebs, but I'm resetting the count for today since this is the first full day that I'm back to doing everything. I made it 215 days without missing a single Vest or nebulizer treatment, except in January when I had my little bought of coughing up blood and I was ordered by my doctor to stop treatments to give my lungs a break. I know it's not that big of a deal health-wise because it's not like I missed them for an entire week, but it just kills me that 215 days of hard work can be thrown away by three little nebulized viles and two nebulizers that got left sitting out. Of course, now my goal again, is to make it another year without missing anything!! - unless directed by my doctor.

Our new team shirts this year!
In other news, the weekend was great! We were able to see a lot of family, I passed out most of my Great Strides team shirts and ate a lot of food! :-) I'm really looking forward to this year's Great Strides walk in our town because it's only the second one out here, but it looks like it's going to definitely be bigger than last year! I've got a ton of people from my work registered, I'm working on getting the community involved more, and we're planning on doing a school-wide fundraiser at my work the week leading up to the walk! I'm very excited at the progress we're making and I really hope we meet our goal of $25,000 this year! If you'd like to make a donation to my team (Colleen's Friends & Family) please click on our team name - no amount is too little. The other day I was cleaning my nebs and refilling my vitamin/pill organizer and I realized how much 'equipment' and pill bottles I have everywhere, so of course, I took a picture of some of it.
THIS is the reason your donations are so important to me
This picture includes my nebulizer pieces, all vitamin, pill and medicine bottles and my Eflow pieces. It does not include, my Vest, nebulizer machine, Eflow machine, and all of my nebulizer viles. All of this stuff is so normal to me, I sometimes forget that other people don't have this stuff all over their houses too. I have all of my medications in the bathroom in containers, my nebulizers and pieces in the kitchen and on the kitchen table (to dry), my pill organizer and enzyme bottle always out on my kitchen counter, and my Vest and nebulizer machies always plugged in and ready to go at my desk. There's not a day, or really an hour, that goes by where I'm not physically reminded by my CF by something laying around the house, let alone taking my enzymes and/or coughing.
I cannot wait for the day when CF stands for Cure Found and future generations will not have this as their 'normal'. I am in no way trying to complain about the things I do daily to keep myself healthy, again because it is what I am used to. But for those who don't have CF, or are never around it, this is what it looks like. This is why it is so important to me (and for me) to have people make donations to the Cystic Fibrosis Foundation & Great Strides. I would not be alive today if I didn't have all of these medications available to me. These medications would not be available/created if it wasn't for the money donated for research. So thank you to anyone who's ever donated to CFF because you're helping to keep me alive! :-) Please consider making a small donation to my Great Strides Team Page to support the CF Foundation in helping make CF stand for Cure Found!

Finally, this Thursday I have my next CF clinic appointment where we'll be thoroughly discussing Kalydeco as an option for me -- another amazing creation from the donations of people like you! :-)

1 comment:

  1. OK, I just have to say, wow - I wouldn't last more than a few hours without albuterol!!! Pretty much all the others I can be okay missing once or twice, but albuterol is a non-negotiable one. Sorry about resetting the compliance count!