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.

Yours, Daniela.

8 Responses to “About this Blog”

  1. liz eckersley Says:

    my baby grandaughter has CF. I pray a cure is found soon. Daniela you are so brave and beautiful. I hope and pray you get some new.lungs soon xxxxx


  2. I posted earlier on a comment that I came across surfing the internet. I just read your home page and it sounds like you have a had a roller coaster ride experiece with CF. I can not say I know where you are coming from, I’m acutally at a healthy point right now. However, I have been on “death’s door” so-to-speak, and it is scary not knowing. I just wanted ot let you know that I also have a stomach tube,have trouble gaining weight, and have bones problems as well. I have had my stomach tube since I was 13 yrs. old and I just started to have bone issues this year.

    I know I can’t say much that will help, but if you want to talk with me ever about your sitaution. (to get something off your mind, or vent about CF, or whatever) You are more than welcome to tweet, FB me, or anything.

  3. ajward25 Says:

    Keep fighting, never quit!

  4. Katie Says:

    Praying for you! Hope all is well. God Bless.
    Katie

  5. Rafa Says:

    We are warriors and we will win. KEEP FIGHTING, NEVER GIVE UP!!!!

  6. Becky Says:

    Are you a candidate for a living lung donation? If so I am interested in being a donor. I have type AB+ blood.

  7. Maya Says:

    Hi Daniela,

    We have created MIAMI – an award-winning patient centred intelligence platform, accessible through mobile devices and the web which allows users to manage their medicines, health and wellbeing, build a relationship with their health practitioners and hence achieve greater levels of personalised and proactive care.

    We are currently embarking on a project to service the UK CF population and will be soon expanding overseas. As a CF patient yourself and someone who is deeply involved with the CF community through your blog, we would appreciate your feedback on how to best meet the needs of the CF community. CF patients come with inspiring stories and we want their voice to be heard.

    Can I have your email to send you more information about us and arrange a chat with you?

    Thank you in advance – your help is much appreciated.

    Looking forward to hearing back from you.

    Kind Regards.

    Maya Petrova

    Marketing Executive

    http://www.handlemyhealth.co.uk


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