Friday, August 15, 2008


Recently, I've been very tired and exhausted. I'm sure some of it is from my recent trip, but my body right now just seems very fatigued. I'm having trouble sleeping, driving, etc. This isn't anything new, as I'm fatigued quite often with work and school. This week I've been staying up past midnight and usually waking back up around 2 or 3 and averaging only about 4 hours a night. Yesterday I got home from my photo session, babysat, came home, watched some Olympics, then went to bed. While I am thankful I got some much needed sleep last night, I fell asleep before the Women's gymnastics competition came on TV. This is my favorite thing to watch and if I had to pick one single thing to watch, it would be this. So nevertheless, I'm a little frustrated that I missed our gold and silver medals. I came home a little early from work today to take a nap and I plan on sleeping a lot this weekend.

I've also started a new drug for a CF study as of Wednesday. It's an inhaled abx-Aztreonam-and is supposed to be very successful. It is in stage 3 of the clinical phase and should be on the public market within the next couple of months. It uses a new type of nebulizer machine, called the eFlow, which distributes the abx by inhalation in about 2 minutes...which is GREAT. Following my 1st dose of the treatment (Wed during lunch) I became extremely out of breath and nauseated for the rest of the day/night. The nausea is gone now, but the sob lingers on some. I am hoping this is unrelated to the study drug. I would like to continue using the study drug as long as possible. There is a chance that I will only stay on the study a few months, because once it is available on the market, you cannot be on the study. However, my doctor will decide whether or not to let me keep using the drug. Me being in this study is important for several reasons. First, study participants are always important to the researchers. However, I am the 1st CF transplant patient(ever) to participate in a CF study from our local research center. They are anxious to see how it works in CF patients who have had transplants. Another reason my transplant doctor thought I would be a good candidate is because I frequently get sick and have several bouts of pneumonia throughout the year (especially in late fall/early winter). So the hope is that this might help me avoid that this year. We'll see what happens. Hopefully I will be able to remain on the drug, and start seeing some improvement in my health.


Deron Arnold said...

Hi Katey!

My name is Deron. I am a CFer pre-transplant. They tell me I'm at the top of the list and could go any minute. (But they've been telling me this for 6 months now.)

I also just recently started aztreonam and also get sob from it.

I am curious to learn specifically how God has helped you during the difficult times. In my blog, this is one of the things I try to focus on. In particular, I find the nights to be the toughest.

I would like to know your experience with God's comfort, care, and compassion during the times leading up to transplant and through the recovery.

Here's hoping that your energy comes back!