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 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! :)

Monday, August 10, 2015

I'm Winning, I'm ALWAYS Winning!

Hey everyone. Just wanted to give a quick update. I've been in the hospital for 16 days. I was admitted through ER when I came in with a bad cough, shortness of breath, low o2, high heart rate, and chest pain. Turns out I have double pneumonia and a lung infection. I have been receiving three IV antibiotics and two oral antibiotics; however my lung function has not improved since admission. My doctors are talking about switching my antibiotics around to see if that helps. I was on a telemetry monitor for almost a week as my heart rate was pretty high. I was on 3 liters of oxygen until yesterday. Since yesterday morning I have been off o2 completely. :) However, I am still coughing a lot and having shortness of breath. The pain has decreased, but my nausea is pretty bad now. We have come to the conclusion that I have nausea from the antibiotics. They are treating it with IV Phenergan every six hours which helps for a few hours. I am currently having issues with my Port. The doctors have ordered some TPA to try and unclog my line. Praying that it works! I've had no blood return for several days and over those days it has become harder and harder to push anything through the line. So, we will see in about 30 minutes if this works. FINGERS CROSSED!
This is the longest stay I have had in a long time. Usually I am feeling a lot better this far into a course of antibiotics. I am not ok with accepting this as my new norm. I am committed to getting my lung function back and getting in shape. I know it's going to be a hard and long road, but I am going to do it. I am not ready to give up yet!
And... between now and two minutes ago, my doctors came in... We've agree that I can go home with IV antibiotics! My day just went from ok to awesome in less than 60 seconds!
I want to thank everyone who has been keeping me in their thoughts and prayers. Your love and support means so much to me! I am so blessed and thankful to have so many amazing people in my life. I have never felt more comfort and support before. It is an incredible feeling and it makes things so much easier and gives me so much more strength to keep fighting.
I just feel so incredibly blessed to have the life I do. Yes, Cystic Fibrosis and diabetes can be a huge challenge and they set up so many obstacles, but without having CF, I would not be who I am. I would probably not be as strong. I would not have been lead to my incredible foster family. I would not have met the amazing cysters and fibros that I have. And I would most likely have taken so much more for granted. To be honest, if I had to choose between not having CF and losing all those people or being in the same place I am, I would choose this over and over again because my love for my second family and my friends that I've met because of this path I've walked is so much greater than the burden of Cystic Fibrosis.
I refuse to let CF or anything else get in my way of happiness. You've gotta learn to take the good with the bad and the happy with the sad. And I have learned to laugh through the pain and smile through the tears. CF will never win.