First I wanted to say I'm very happy. It isn't alway easy to life with Cystic Fibrosis but it doesn't mean im not lucky. I love my life and every day I wake up with a smile. Im thankful for the changes I get and hope that its possible to continue this...
Happy me is just a blog about my life story. The lucky moments and even the bad. I have to deal with CF everyday. Its a daily routine in my life, just like you when you brush you're teeth. That doesn't mean it is sometimes hard to make choices. When I can't sleep because Im short of breath I often hate the CF but im also lucky with it. It makes me realize that nothing is taken for granted. We must enjoy every moment of life. Don't count the days, make the days count!
My story
Since I was born with CF in the nineties I have to deal with my CF. When I was a little girl I started with a bad cough, in the beginning the doctors thinking it was Asthma. When I get older I get more and more symptoms of CF and finally I was diagnosed with it. I have often been in the hospital. The beat of my pneumonias I lost. There where many surgeries and Hospital visits. Often I was to sick to go to school.
Since my seventeen I need oxygen the whole day. I addicted to take Creons to digestive my food. At night I get tube feeding to stabilize my weight. Since a few years I also need Non invasive ventilation called BiPap. In the beginning only at night and now also a few hours at day. My lung function decreased the last years. So im now under the thirties. My CF routine takes many hours a day even the physiotherapy takes a lot time. Have to deal with CF is requires a lot of discipline. Many CF friends lost the fight I think thats the most hard part of dealing with CF. See how hard you fight you never win.
NTM-infection
Last year they find a Non tuberculose mycobacterium. They started with treating the NTM bacteria with many antibiotics. I still fighting against the NTM. We hope that my CF and the infection will stabilize. In the future I hope to get a Lung transplant. The treatment for a NTM infection is taking a couple of months so it takes a lot time. They doesn't know if we can controle him and if he goes away. The time will learn...
