27 – Don’t give up

May 13, 2012

I haven’t written anything for such a long time. 8 days ago, on Saturday, I finally left hospital and went home.
After I practiced walking an moving every day, it was working very well.
The doctors say, I should stay in bed because of my back but I feel that this destroys my lungs, so I get up anyways.
First thing I did when I was home was sitting in my car and driving around. Finally I was alone- for the first time since weeks.
I screamed, sang, shouted and was happy. Finally I was free.
I stopped fighting with Luis a few days later. It was a huge shock or him that they won’t give me lungs and it was very hard for him to deal with it.
The week was very hard for me. My lungs got very bad because of the time in bed. Even the littlest things are so exhausting and hard for me.
I try to hide it and to pretend that I’m fine.
On Friday, Luis came to Germany. I was so excited and of course I am so happy that he is here.
We went to my sister’s wedding and it was beautiful. But sometimes it was also a little hard for me.
When people look into my eyes i see pity and sadness. I can barely stand it. It is like I was already dead.
The church was nice. But all the time I was thinking, that at my funeral it will be the same process, the same prayers, same people,… It was weird.
I was proud of my sister and happy, that I could be with her on that special day. But I also wondered, if I will have enough time, to get married. To enjoy the future. If I at least have a future.
I enjoyed the day. It was hard that I couldnt dance like all the others. Often I feel locked in my own body. It’s like a prison. I want to do so many things and my body doesn’t let me.
Tomorrow I go to another hospital, to see if they would transplant me. The chances are very very low, but I don’t want to give up.
I want to go to every hospital, that transplants lungs Until I find one that will transplant me. I hope I will have enough strength, energy and power and I hope I will have enough time, and
Stand the CF long enough.
It helps me a lot that Luis is here at the moment but it’s sad that he has to go back to the US after 10 days.
It’s hard to know, that most probably we will never live together and that most probably I will die alone.
I just try to enjoy every little
Moment, even when it’s hard because of the pain and the breathing pro lens all the time…
But I wont give up. Wish me good luck for tomorrow.

7 Responses to “27 – Don’t give up”

  1. Carson Rodke Says:

    Dani, you will never die alone as long as we’re friends. I will be there in spirit, along with Dominic, Chris, Maci, Davis, etc. until your last breath.


  2. You will never be alone – you are with each one of us in our hearts.

  3. drmikeihs Says:

    Thank you, Daniela, for your inspiration … you are inspiration personified. Striking when you think about the word “inspire”, as it means to breathe and to influence … in a spiritual sense. And so it is, with every troubled breath you take you inspire others … everywhere around the world. And they, in kind, send their spirits to you … to breath in … to support you in every way that they can. And, my spirit is with you.
    On the side of hope and medical note(s), let me know how I can help you search for a consult regarding lung transplant in the US. Also, I recently read about a new drug for CF. It came to me on May 10 and I still have to investigate the indications for use, but … who knows. Send your email address and I will forward the info, so you can check it out with your CF docs there.
    Enjoy the Love, Daniela and remember that every breath you take is inspiration to others and hope for you.
    Ciao for now,
    Dr. Mike

  4. drmikeihs Says:

    http://www.reuters.com/article/2012/05/07/us-vertex-cysticfibrosis-idUSBRE8460I420120507

    This is the link to the reuters article. You will need to get technical specs and all from your CF docs.

  5. ziaboga Says:

    hola Daniela:Me alegro mucho de que hayas estado en la boda de tu hermana y de que por fin Luis y tu estéis nuevamente juntos.Entiendo tu malestar al ver que la gente te mira con compasión, pero no lo tengas en cuenta.Me parece vien que intentes mirar en otros hospitales la opción de transplante y que no te rindas.es mormal en tu situación pensar en que puedes morir y que te gas miedo, pero también debes pensar que todo puede cambiar de repente y encontrar una solución o transplante.Aprovecha estos días con luis y déjate querer y cuidar.Es duro que yenga que volver a EEUU, pero yo estoy convencido de que debes disfrutar al máximo con él y contarle todo lo que te preocupa, llorar , reir todo lo que cualquier pareja de enamorados hace, porque seguro que luis es el que mejor te entenderá.También me alegro de que no estés en la cama, ya que aunque sea duro, el movimiento será bueno para tus pulmones y tu mente sobretodo y no verte todo el día en la cama como estanas en el hospital.
    Ya sabes que me tienes para lo que necesites en cualquier momento , pero ahora disfruta el presente y se feliz aprovechando esos pequeños momentos que tu siempre has comentado.
    Un abrazo tu amigo.
    jesus ureña

  6. ziaboga Says:

    Hola dani: se me ha olvidado decirte que yo también he leído el éxito y mejora con una medicación cuyo enlace een español te dejo.http://clinicafq-ceprep.blogspot.com.es/2012/02/fibrosis-quistica-nuevo-medicamento.html
    saludos.


  7. I’m so sorry to read this. But know you are never alone and never in this. I truely hope you can fight your CF and there will be a transplant for you. I can not say anythign that will make your situation better. But know, we CFers are strong and can perservere through anything.

    I found that when I am sick or am fearing Cf I talk to someone else with CF about. If you have Facebook, share your story on a CF page. Nobody can ever walk in your shoes, but there are others in similar situations.

    Good Luck and you are in my thoughts and prayers.


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