My name is Daniela, I’m 25 years old and I am from Germany.
I was born with a genetic disease called cystic fibrosis (CF). It affects the lungs, but also causes problems with the pancreas, liver, heart, kidneys and other organs.
There is no cure for CF and the disease shortens your life very much.
At the moment my lungs are at a very critical stage. The doctors say that I need a transplant very soon if I want to survive. I spend most of my time in hospitals.
It has not always been like this. When I was a kid, everybody thought I had asthma. I had breathing problems, but not as bad as now. Nobody could ever imagine that this health problem could kill me one day. The older I became, the worse it got. I lose weight and my lungs work less everyday. I started to need oxygen at night and I needed a feeding tube.
The strong medicines causes stomach bleedings and osteoporosis along with other side effects.
My bones started to break- ribs, spine, wrist, fingers, sternum, toes,… The hospital stays become more and longer.
Now I’m at the point where I hardly leave the hospital. There are no painless days anymore and breathing becomes harder and harder. My bones break very often. I need oxygen around the clock. I can barely walk.
All this sounds very bad and depressing. But surprisingly I am a very happy person that loves her life and enjoys it. I learned to live with my disease and I am counting my blessings every day.
I have a great family. It is very hard for them to see me suffer but they support me as much as they can. My sister and my two brothers are also my best friends.
I have a beautiful fiancé, who is always there for me. He doesn’t treat me like I was sick, he loves me the way I am. He helps me when I need help but he doesn’t feel pity. I am so glad I found him. He makes me happy and makes my life so much better. Unfortunately he lives in America and I live in Europe. We try to spend as much time together as we can, but it happens that we can’t see each other for a long time.
My doctors, nurses and therapists are all great. They are like friends for me and they fight for my life. I owe them everything.
I also have great friends. Many people left me when I got worse. I found out that a lot of persons that I considered as friends were just a**holes. At that time it was very painful for me but now I’m happy because i know that the friends I have now are really my friends. I can always count on them and they are always there for me. They visit me at the hospital; they come over to clean my house when I’m too sick, they drive me to the doctor’s and cheer me up after the hard days.
Since I am in the hospital a lot and since I know that I might die soon, I appreciate things, which other people don’t even notice. I’m thankful when I can hear the birds singing. It makes me happy when I can drive my car. I feel so great when I can see the sun going down. I love life so much and I enjoy it to the fullest.
In December 2010 I was in coma. They had to intubate me through my throat. My heart didn’t work anymore after a huge infection and I lost parts of my fingers and three toes.
I was very close to death but I never stopped fighting. Now I am still here, without the fingers and toes and with some more scars than before- but I am still here.
And now I have to fight for my life again. And I will win again.
With this blog I want to give you the opportunity to join me on my way to the lungs transplant and to walk by my side.
If you want to get in touch with me feel free to leave me a message or to follow me on twitter. @Kruemelfrost
I hope you will enjoy reading about my fight against the cf.