Come on in!!!

Hello there! Welcome to my Breathing Room!!! I decided to start this so you could walk with me in my journey with Cystic Fibrosis. I want to share my story of how living with a chronic illness can be a blessing & no matter how hard it is sometimes; with faith, family, and friends to pull you through it you can get through anything. This is a place where I will be able to vent and tell you what is going on in my life at that moment; and no matter how rough it might be I keep my face to the sunshine and move on. So I guess I'll give you a little background of myself to start out.

I have been living with Cystic Fibrosis for all 22 years of my life. I was diagnosed when I was 5 months old. When they first diagnosed me my family had to drive from Nashville to St. Louis because Vanderbilt didn't have an adequate enough CF program to take care of me. For two years my parents along with another family member would travel to St. Louis for doctor appointments, tests, or hospitalizations. Sometimes having to stay up there weeks at a time. Finally, in 1989 Vanderbilt had a strong CF program and I was able to see the doctors in the clinic there. It is such a blessing to only have to travel twenty minutes to the hospital for appointments. I can't imagine having to drive for hours to an appointment with the doctor that would only take as much as an hour. Or being admitted into the hospital and all of my family and friends being so far away that they wouldn't be able to visit me. So that is another blessing I am able to count. I was very lucky to have parents that wanted me to live as normal of a lifestyle as possible. From the day I started kindergarten i was very up front with my teachers and friends that CF was a part of my life, but it did not slow me down. I was allowed to participate in all the same activities as the other kids- as long as my body allowed me to that day. My friends accepted me for who I am and to this day love me for me! CF will forever be apart of my life, but it will not take over my life.
I have been seeing the doctors at Vanderbilt for the past twenty years. They are great. I recently made the transition from pediatrics to adult- which I thought was going to be the worst thing ever. I hate change! It was hard getting used to it- but now I love it! I love being treated like an adult! haha. I didn't realize it while I was there but in peds. I wasn't really treated like an "adult". I don't think it ever hit me until I was in the adults where I am allowed to make my own decisions. The doctors tell me what they think is best for me, but my opinions seem to matter a little bit more. Something that is a little different in the adults is you aren't actually admitted into the hospital every time you are sick. They (the drs.) understand that you have more responsibilities and they usually send you home on IV antibiotics and you are able to live life as normally as possible. As you get older with CF the disease progresses, and you have more complications. When I was 12 I was diagnosed with diabetes as well. I used to could keep my blood sugars under pretty good control, but it seems as I get older it is harder to keep them under control. I recently saw the adult diabetes doctor and they suggested I get an insulin pump! I actually ordered it this week, so I will begin to use it very soon. So lets bring you to the present...
For the past few months I have been on IV antibiotics more than I have been off of them. Which is SO unlike me. Winter months are usually my worst months, I usually am on IVs for 2-3 weeks then I get better and I can go about a month without having to be on them. I had to go to the ER on Feb. 16- I was just having the worst time breathing and I felt terrible. I stayed in the hospital over night and it was decided I needed to have a bronchoscopy done. Dr. Miller wanted to get to the bottom of this. I had a CT of my lungs done and she saw something different and by doing the bronch. she will get samples from my lungs and send them off to see what they grow. She thinks it is possible we have been treating the wrong bugs.
I had the bronch. done on Tuesday. I went to the hospital at 8:30AM and they did the bronch. at 10:30- I was home by 2:30. I was sore, tired, and had a slight fever; which is all expected. I'm still very exhausted but hopefully will have energy back ASAP. While all this has been going on my kidney functions have be out of whack!! With all the IVs I've been on they (my kidneys) are having a hard time handling it. My mom has had to draw my blood every day but one this week and drive it down to Vandy. The one day she didn't draw my blood I had to pee in a cup and take it down there. So my poor mom has had to drive downtown EVERY day this week! We're still waiting on my blood tests and urine test to come back. So pray all goes well. In the meantime I'm taking in fluids like I never have before. IV fluids and orally. It is ridiculous!
SOOO...here's where I stand. I'm waiting on final touches for the insulin pump, and will hopefully be recieving it soon so my bloodsugars will stay normal. It could take up to 6 weeks to get any test results back from the bronch. As far as my kidneys, I am on continuous fluids to try to flush them out until my levels get back to normal, and I'm waiting on the urine results to come back to see if anything more extensive is wrong with them. This weekend I was supposed to take a trip with my parents and some youth from church to Gatlinburg, but it is looking as though I won't be able to go. There will be alot of walking and I just don't think I will be able to handle it. I'm just too weak. I want my parents to go worry free of me and get away and have a good time- they deserve it. I will be able to rest up here at home and all will be okay. As soon as I have any kind of news I will have an update! So stay tuned!

Prayers:
~My kidney levels come down ASAP.
~Tests coming back from bronch answer questions so my lungs will heal.
~Mom gets some much needed rest; be with mom and dad while in Gatlinburg{if I can't go be with me here at home}