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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...
 

Monday, August 17, 2015

Over and Over Again...

So the evening after I was discharged, I ended up back in the Emergency Room at UNC because I was vomiting blood and having severe abdominal pain. They admitted me and did a scope and monitored my blood counts. My hemoglobin is still lower, but stable and I am allowed to go home today. I have to get it checked later this week to be sure it doesn't drop anymore.

I am a little bit nervous about going home because the past few days, with the exception of today, I have been having episodes of extreme shortness of breath, coughing, high BP, and dropping O2 sats. I needed to be placed on 4 liters O2 for a few hours yesterday because my sats dropped into the 80s. Doctors are not sure why this happened, but said if it happens again at home, I am supposed to go to the Emergency Room.

I am starting Pulmonary Rehab 3 times a week to hopefully try and increase my endurance. Doctors don't expect me to increase my lung function because it looks like most of the damage done is permanent, but they said Pulm Rehab should help me do more with the lung function I do have.

Over the course of three weeks of IV antibiotics and aggressive airway clearance, I still was only able to improve my lung function by 2-3%. I am really upset by this. Over the past year and a half, I have lost over 50% of my lung function and I cannot keep up with my friends and family anymore. I would love to be able to take my dogs for a walk, to go walk around the mall, to keep up with everyone again. I am praying the the Pulmonary Rehab helps me to do this.

I just wanted to update real quick, but now I'm off to pack up so I can be picked up in an hour and a half! :)

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