This girl is on fire!

It was a bright an early day today. Had to be at the hospital before 8:30 for lab draw. Since I have my central line placed in my chest, it was an easy draw. With any central line a registered nurse had to draw the blood out of my line, flush it with saline followed by heparin. After she filled up the 6 test tubes, she noticed my bandage was bloody and needed to be changed. So she carefully pulled off the old tegaderm, cleaned off the excess dried blood, and wiped the rest of the area with alcohol. I finally got to look at my central line. I will admit it was beyond bizarre to see a small purple line hanging out of your skin, then stitched to your chest so it won’t move. Kind of creepy ha ha! Overall, lab draws and dressing change went smoothly. I didn’t hear back on my lab results today, I’m sure I will tomorrow.

It was a quick visit at the hospital. Once the lab draws were complete we were headed out the door. My mom needed to work on several projects for work on her laptop, so we headed back to the apartment for the time being. When we returned my mom set up her office at the kitchen table, and I lounged on the couch. My plan was to watch Price Is Right, I ended up watching the back of my eyelids! YIKES! I ended up sleeping for several hours, which I’m not going to lie it felt good. Next thing I knew it was 2 o’clock, iv time. Good thing that takes less that 15 minutes to push in. Once I was finished we were headed out the door again. Our next appointment was with Dr. Wright who is an endocrinologist. Before I got sick my blood sugars were starting to stabilize, which is what we want. But having our little set back last week my numbers have been all over the board. When I was in the hospital I was given extra doses of prednisone and also shots of hydrocortisone, which can send you blood sugars through the roof. My numbers are starting to settle back down, but I tend to run high at lunch and dinner time. So as of right now Dr. Wright did not make any changes to my insulin. Our hope is given a little time, my insulin levels will return back to normal, and we can start weening off insulin. Fingers, toes, hair, legs pretty much everything is crossed, using insulin and checking blood sugars will go away!!!!!

When we were finished with the endocrinologist we headed to the apartment. My mom needed to finish up her work, so I decided to go for a walk. It was such a nice day up here, I couldn’t pass up the opportunity. I rode the trolly to downtown Seattle, there were tons of street performers out. I walked around listening to a man singing reggae music, to another gentleman playing music on 5 gallon buckets empty wine and alcohol bottles, a group of young men break dancing, to other people playing different instruments. Not sure if I enjoyed watching/listening to all the different music or people starring at me with my mask and sunnies on! Ha I got some great looks! But you know what I really don’t care! I got a second chance at life and I’m LOVING it!! I just wish I was wearing my awesome shirt Rick Wilkens made for me!

My great friend Emily Bruggeman sent me this picture the other day, and it totally made me tear up. The picture on the left is Emily and I back in May when I was at OHSU, and the picture on the right is Emily and I when she flew out here to visit just a few weeks ago. What a huge difference! Although it is a tough picture to look at, it is a good reminder of how far I’ve come. The road was extremely rough after May, I kept pushing through. I wasn’t going to let Cystic Fibrosis or “PITA” define me. I had to relearn how to live with these limitations, which wasn’t easy but I DID IT! It’s scary to think your thirty one years old, and your CF doctor is telling you, you need a double lung transplant ASAP, and it’s a race against time. I will admit that was the hardest pill to swallow. The call couldn’t have come at a better time. I am forever grateful for all the doctors, nurse, CNA’s, respiratory therapist, friends, family, everyone involved in this journey. It truly has been an amazing one. Thank you Emily for the comparison photo, and for showing me just how far I have come!!! I just get so excited to wake up put on a pair of shoes and head out the door. I know I say this a lot, but I cannot believe I am able to do things that weren’t possible 6 months ago, such as walk like a “normal” person. I tend to forget I just underwent a major surgery and my body is still healing, and I shouldn’t push myself so hard. This little set back was a good reminder to myself, it’s okay to take it easy once in awhile, and not go go go all day long.

Anyways enough rambling, almost time to do my night iv and then off to bed for this girl!

Hope everyone had a good Monday! Don’t forget to get your Just Breathe Team Jen shirts before they are gone!!!!! 🙂

Until next time…………..

~Jen~

“Just Breathe”