About Me

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I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3  I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...
 

Tuesday, December 11, 2012

Harsh Reality...

I had an appointment with my pulmonary doctor at the University of Minnesota last Thursday. After three weeks on IV antibiotics at home, my lung function is even lower than when I was started. I am currently on two IV antibiotics and three oral antibiotics and still losing ground instead of gaining. Lately, every joint in my body is beyond sore. I feel like I am going to break when ever I move. Laying in bed is even uncomfortable. Sleep is a stranger to me these last few months. I usually end up staying awake until I get so exhausted that I passout where ever I sit. My dose of steriods is still wreaking havoc on my blood sugars; high throughout the day and crashing in the morning. There is no happy medium...

I feel the quote, "Laughter is the best medicine," really does not fit for me. Laughing, even just a single giggle, sends me into a 20 minute coughing spasm, usually resulting in intense vomiting episodes. Walking is a lovely task as well. Ten steps, cough, cough, hack, gasp, wheeze, cough, spit, ten steps, gasp, cough, hack, spit, hack, wheeze, gasp, gasp, spit, and repeat. Sometimes, even mid-sentence I need to stop and catch my breath.

I know most of my problems stem from my living environment. I live in a 34 year old house, with soft floors, sagging ceilings, and mold. As most people know, mold can be an issue for most healthy people, but for me it can be life-threatening to live in an environment with any amount of mold. In the last year, I have spend more time in the hospital/at home with IV antibiotics than I have home/off IV antibiotics... I know I need to get out of here, but until I have somewhere else to live that isn't possible.

I ended up going to the ER yesterday with bad stomach/back pain, nausea, vomiting, dizziness, and pale as heck! I was probably whiter than the snow in my back yard. :( After some testing my WBC count came back HIGH HIGH HIGH, which is BAD BAD BAD because I am already on the five antibiotics. They did a CT scan, which showed intense swelling and infection in my intestines. They think I may have inflammatory bowel disease. :'( Not looking forward to the possibility of another belly surgery!!!

Well, I am extremely exhausted so I am going to go bundle up under my covers! Hope you all have a wonderful day and a Merry Christmas if I am not back on here before then! <3

Tuesday, December 4, 2012

Oh for the love....

Wow... It has been over a month since I have written anything.

Busy does not even begin to describe the past month.

My beautiful grandmother, JoAnn, has been brought to sit with Jesus. She left us Tuesday, November 20 at 8:30am. We laid her to rest the following Monday, November 26. Never have I seen such a beautiful funeral!
She would have been 70 years old on November 24... She was four days shy of her birthday.
As hard as it is to swallow that she is now longer physically with us, I know she is looking down on us, protecting and watch over. I feel so lucky to have such an incredible angel.
Two of my lovely cousins: Julia and Alleena, and my beautiful grandma and I



I ened up having Justin bring me to the local emergency room very late November 11/very early November 12 for hemoptysis and chest pain/pressure. The doctor seemed to think he knew EVERYTHING about CF, but had to ask a thousand questions about the disease that didn't even pertain to my specific case... Then proceeded to tell me that I had NO idea just how serious of a disease CF is. O.o
Anyway, he contacted the U of M and spoke to the on-call for pulmonary who gave me two options: 1.) Go directly to the U from Buffalo, or 2.) Call the clinic immediately in the morning to schedule an appointment. I chose option 2. They got me an appointment with the NP that same day.
My PFTs and weight were down, which I expected. At this time, the NP gave me two more options: 1.) Be admitted, or 2.) Do IV abx at home. I, again, chose two.
While trying to get everything set up for my PICC line to be place, I told the NP that I HAD to 100% get my line placed by Interventional Radiology because Vascular Access can no longer get my lines in, nor do they feel comfortable trying. What does the NP do? Schedule with Vascular... So, I ended up going home without a line and needed to go back to the U for line placement the next day. :P
After some complications getting my PICC in, they decided it would be "best" to place a tunnelled IJ PICC into my chest and thread it up through my neck and into my jugular vein.

I went back to clinic last thrusday to see if I still needed IV abx. My PFTs are staying the same so they added a fourth antibotic to my regimen. I have another appointment this coming Thursday, December 6.
Hopefully, it will be a better appointment...