My name is Amberlyn and I have a fatal disease called Cystic Fibrosis (“CF”). Compared to some I have it easy. I admire the will and courage of kids and teens who have cancer, diabetes, MS, Spina Bifida, Cerebral Palsy or other illnesses. From a young age I have interacted with others who had illnesses and we shared something in common - being in the hospital, being sick, and being around the same age. Most of my friends have come and gone, due sadly to death. Some moved and we lost contact. I didn't even learn of some of their deaths until I was old enough for my mama to tell me and I could actually understand. It was then that I looked back and thought what if they had been better, how would their life have been, or I would wish they weren't so sick, and then I would think that my complaining all the time about having to do a stupid breathing treatment was selfish and totally uncalled for. Because you see I was still alive, they weren't. So doing those treatments didn’t seem so dumb anymore. And knowing what I know now, I wish I could go back in time and help make their last few days here on earth not so painful!
I love meeting new people and helping in any way possible. I don't pity the people I meet, because I know I don't want people to pity me for what I have. Nothing is worse than someone being my friend because they feel sorry for me! There is WAY more to me than my illness, so please get to know me for me, not because you feel bad for me.
I have made it this far in life thanks to the help of my family and friends, and my faith in the Lord my Father. Through all these hard times when I felt like the world was crashing down on my shoulders, it was God who was there to see me through it! I'm not scared to die; by all means I don't want to, but I'm not scared. I know I'm going to heaven free from pain and heartache. I'm ready to meet my Father; I hope that I have spread His word and helped others find his/her way.
I realize that life is too short to take things for granted! I enjoy the small things in life, and if I can put a smile on someone's face, I know I've done my job. I feel it's my calling to help others through the knowledge that I have obtained having been faced with my own obstacles. I know what it's like to be at your lowest, I want to help as many as possible. It's like what Ghandi has said "…be the difference you want to see in the world…" I want to leave a mark on this world….. I want to make a difference!!
Amberlyn Fett, October 2008
In 2 “short” years much has happened. Having been sick all my life, I was sure I’d been through it all, seen it all and could survive anything. But then I had to spend most of 2009 in declining health, on oxygen all the time, and finally in a wheelchair, unable to breathe well enough for even the easiest activity. Because of repeated infections throughout my life, my lungs were just unable to do their job and I just could not breathe. I always knew that the disease could progress as I got older, but when I was actually placed on the waiting list for a double lung transplant, it hit me like a ton of bricks. I went through an intensive 2 weeks of examinations to verify that I was eligible for a transplant. I was so sick that I was placed at number 5 on the national waiting list! Then came the hard part – waiting for word that lungs were available for me. Every time the phone rang my heart skipped a beat, wondering if “this was it.”
The months dragged on and it was hard not to be discouraged. After getting really sick that Fall, it was hard for me to see any future. Instead of planning my next birthday, I was signing a DNR and getting everything in order to make it easier on my family. I never suspected how my life was about to change.
Finally, after 3 weeks in the hospital (the last 2 in a medically-induced coma), on October 26, 2009, I was transferred via helicopter to the University Hospital in San Antonio where I was blessed to receive a double lung transplant and my life changed forever!
After the transplant it was amazing: I could BREATHE! That may not sound very exciting to you, but this was a NEW experience for me. All my life, particularly during the last few years, I had constantly coughed and struggled for breath ….. so to actually be able to sleep without having to sit up coughing was a miracle to me!
But life after transplant was not a bed of roses. There were the medications to adjust to (so many pills to take each day!), blood clots to treat, pain issues to deal with, a couple of other surgeries to endure …. I had so many ups and downs, mood swings, reactions to the medications … it seemed to be one roller coaster ride after another.
However, I’m happy to report that finally, around August 2010, I realized that I am feeling almost “normal.” Yes, the meds will be with me forever, as well as blood tests, etc. and I have to take care of myself. But for now, life is good. I am blessed and I thank God (and my family and friends) for supporting me through the whole process.
Amberlyn Fett, October 2010