About Me

My photo

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...
 

Monday, August 5, 2013

Bleeding Lungs and Puppy-Dog Tongues

The past few weeks have been a challenge for me. I've been having major hemoptysis (coughing up blood) and I have needed more blood transfusions. Currently my docs are trying to let the antibiotics kick in to hopefully eliminate the bleeding.

My blood pressures have been running pretty low because of all the bleeding which is causing me to be light headed even sitting down. I'm also needing more oxygen because I am struggling for air quite a bit. 

They also put me on vitamin K and a high dose of IV steroids daily. Because of the steroids, my blood sugars have been running extremely high so they've had to put me on an insulin drip which means they are checking my blood sugar every hour. I'm pretty sure I won't be able to use my fingertips soon because they will be so sore from all the pokes. 

To add to my already complicated list of problems, I now, again, have to worry about blood clots. Since my last ultrasound, about a month ago, I have made two new clots. Which means that I am forming them without any kind of IV access and that is even more dangerous. 

Tomorrow, I am scheduled with Interventional Radiology to have a BAE (Bronchial Artery Embolization) since we've been waiting so long for the hemoptysis to stop on its own and hasn't. 

I got a lovely visit from my family and Mr. Buddy Bones (our Shih-tzu) yesterday. He was a bum the entire time he was here. All he did was sleep on dad's lap...  He did pull my IV pole for me though when I walked to the tunnel with my family before they left. 

Justin also spent the night with me this weekend. I love him so much and I could not be happier. From day one, he has been so supportive and helpful. I miss him when I'm in the hospital!

Other than all of that, I can't think of anything else to say. If I find out anything else, I will try to update again! Until next time, farewell!