30 – I want to win

June 1, 2012

Today I could breathe better. They gave me very strong medicine. I can’t take it often because it has tons of side effects, but it was good to get a little break. I needed it.
They did lots of tests today. They tested my lungs. They did a MRI of my spine. And they checked my heart.
The infection in my back is still huge but not bigger than last time. We talked about my antibiotics. Unfortunately there is nothing else they can do to help me. They say that the back will need at least 2 more months to heal. They don’t want to give me lungs until that. But I will try to finish at least all the tests they want soon, so I can get on the list right when the back is fine.
My heart tests were not very good. The valves are not closing. They will do more tests tomorrow. The valves had been bad for a while but it looks like they got a lot worse during the last two months.
The cardiologists also say that my heart doesn’t beat in a normal rhythm. They also say that the heart muscle can’t work that hard forever and that the right heart is swollen.
Tomorrow I will have more infos.
Most probably I can go home tomorrow in the evening, when I have finished all the tests. Right now there is nothing they can do for me. I need the medicine and I need lots of rest but I can get all that at home too. At home the infection risk is not as high as in the hospital and I have my family and friends around me. So it will be better to go home.
Next week I want to go on vacation for a few days. My family is already there and I will join them if I can. That would be awesome.
A great friend visited me today and we talked a lot, so I wasn’t alone all the time. I watched 3 movies and some TV. I wanted to Keep working on a picture that I’m doing for my stepson Paul, but I didn’t feel well enough. I have a lot of pain at the moment…
I texted with Luis a lot. I miss him but I’m happy that he will be back in Germany soon. It looks like he can come over in one or two months. Right now I only have my teddy bear to cuddle😦
Can’t wait to go home tomorrow. Although I only have been here for two nights. Home is always much better.
Although I had been distracted today, I started thinking sometimes. It bothers me, that I can’t go to the other hospital right now to try to get on the list. Just because of the back. They said, that the back must be fine before they even think about putting me on the list. But infections like this heal very slowly and often they don’t heal at all. But I’m running out of time. I need the new lungs.
I wish I could do anything. Fight for them. But there is nothing I could do to make the back heal faster or better. I feel so helpless.
Today I don’t feel afraid of dying. Today I feel mad at my disease. I feel the will to win, no matter what. I want to get the transplant I want to win. I want to live.

2 Responses to “30 – I want to win”

  1. ziaboga Says:

    hi dani: I’m happy because the infection in your back is not bigger than last time.I think you’ll be better at home with your friends and your family on holidays.I know you’re sad and helpless, but I want to give you strength with my words.I’m sure you’ll keep fighting, and finally in two or three months your back will get better.take care of your hurt.I everyday send you strenght and I’m sure you’ll have a new lungs.You’re a lot of time fighting, and sometimes you’d like to give up,but there are a lot of reasons to fight.yourself, luis,family, friends and the most important: live the life and to be happy after so much fight.
    hugs of your friend always with you.jesus

  2. Donna Says:

    I know it is easier to say the words stay strong and positive & not real easy to hear sometimes but I am telling you to not let CF win. Whatever you do – please stay strong and hang in there. I know the pain you feel & i know the feeling of not being afraid of dying but you are so young and can have so much more life so dont give up girl – fight this thing. You are important to alot of people and family that love you so much. Live each day to the fullest and just embrace each moment. CF can be beat! ((hugs)) Donna


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: