Oy Vey- Living with Cystic Fibrosis

My new obnoxious mask! (Auriel Hall)

I made it through one full week before landing myself in the hospital, again...

Yesterday, I had a fever and felt extra short of breath so I had to come into the ER. Right away they gave me more oxygen (felt so good) and started to run blood test and such. The x-rays showed haziness in my right lung and it may be a beginning of pneumonia. Thank goodness they saw it in the x-rays before it can get worse (whew). My oxygen has become really low and it is really hard to breathe on my own. I used to be in the 90 percentile while on 4 liters of oxygen but it dropped to 85% instead, when I am short of breath I get a bad headache and my nails actually turn bluish/purple! Now I have a new mask that gives me more oxygen, and it feels wonderful. However, I can't seem to breathe well when I switch back to the nasal cannula, so I will be using this mask for a while. I am hooked up to so many monitors, and it is really annoying! I have one monitor for my heart beat, one to measure respiration, oxygen stats, and a blood pressure cuff. The respiration machine always beeps because I move the wrong way or something...so mom and I don't get a sound sleep. And when I have to pee, that is a whole 'nother production to unhook all the machines and carry my IV poll before I get to the bathroom!

My lungs have not been doing well, so I have to go to the Mayo Clinic in Jacksonville, Florida, to do a lung evaluation. Tonight, my mom and I will be traveling by ambulance from the hospital to go to Jacksonville. It is about a 7 hour drive....and I was told a non-stop drive (What if I have to pee?)

In Jacksonville I know I have to do a series of tests. I am not looking forward to the blood test, but x-rays and CT scans are easy-peasy-lemon-squeezy. In July I went to meet the head transplant doctor and he seems nice, but I am still wary. My momma knows a majority of the nurses and doctors because my sister had her transplant in the same hospital. So I know she will crack her whip when one of them steps out of line...

My new obnoxious mask!
One of my fears is that one of the nurses might screw something up and then my health would be jeopardized (I know, I watch to many movies). I am nervous too because I feel like I will be up there for more than a week. I am hoping that I get to go home already! My bags are packed and we are just waiting for the ambulance to get us. I will be sure to keep you all updated. Oh and you can subscribe by scrolling to the bottom of the page and enter your email.

Peace and Love!

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