32 – sick at home

June 18, 2012

I am home… Two weeks ago I left hospital. The first day was awesome. I met friends and we watched a movie and had a beautiful dinner.
The second day was horrible. I was throwing up till I collapsed.
On the third day I went to Italy with my family. I slept during the whole ride because I felt so sick.
The vacation was beautiful. It was raining most of the time but I loved to spend time with my family. I miss them so much when I’m in hospital.

I ate a lot there…

And the nature is beautiful.

Now I’m home for a week.
I have fever, I’m in lots of pain and feel completely powerless.
I try to use every minute where I feel better to see my friends and family. I try to hide how sick i feel…

Sometimes i am able to spend time outside in the garden.

But most of the time I’m on my sofa.
The infection in my back doesn’t heal. Not even a little.
The hospital, where I asked about the transplant, told me that the back has to be okay first.
In 8 days I have an appointment in another hospital to ask, if they would transplant me.
I am trying to do physio therapy, but last time I collapsed as soon as I started to do a little exercise.
Whenever I can I drive my car.

It distracts me and stops all the thoughts that I have on my mind…
At home I think a lot. I know, that this infection can kill me. I already feel the infection around the clock. The fever, the pain. I need so much sleep and still feel powerless. I always have a headache. I throw up all the time.
And with that infection I won’t get lungs.
So of course I think a lot about the future. Right now I don’t even know if I have a future…
At least I am at home. I enjoy being home so much…
I wonder how my family’s life will be when I die. I saw a lot of cf patients dying. And in the beginning everyone misses them. Talks about them. And after some years it is like they never lived. Like everybody forgot about them…
I feel, how afraid people are when they talk to me. They always behave like it was the last time they see me.
My doctor just called me. They will give me another antibiotic as an infusion for 2 weeks. They can’t find one that works. So we just try… Right now I am on 5 different antibiotics at the same time. They are all very strong and high dosed so the side effects are huge.
I throw up, I feel sick. I have belly cramps and a bad headache. I feel tired and powerless. It’s not fun…
But I won’t stop fighting. I just try to enjoy the better moments…
You learn to value the minutes where you have no pain when you feel horrible 90% of the day…


6 Responses to “32 – sick at home”

  1. ziaboga Says:

    hi dani.I always tell you dont’ give up.I know is easy to tell it when I’m quite good but I’m not free of get worse anyday.Your health is worse than mine, but we both must fight everyday.you to get a new lungs and I to don’t get worse.Right now your feel sick, hopeless and tired,but while you have a bit of strength try fight.If there’s a person in over the world can ge it , that person are you.Don’t forget never I’ll be with you every day until you can get a new lungs and you live a better life.Thanks for being as you are, a great person , strong and wonderful woman.hugs of your friend.

  2. Jim Vasey Says:

    There’s always hope when you have people who care about you and doctors willing to try. When people stop caring, prayers stop, and health care professionals stop research or helping. Then and only then you need to worry. But you have so many friends around the world who care and prayer for a cure and better health for you.

  3. Michael Giblin (@MG177) Says:

    Love you my dear friend never stop fighting Dani! We are with you with every step you take you are always in my thoughts ❤ You Inspire us all! 🙂 @-}–

  4. Love you Dani. Stay strong. This will all work out soon. You will get better, and you will get a transplant. At least that wasn’t a direct “no” from that one hospital. They say your back has to be better first. We can do that Dani! We can do it!

  5. drmikeihs Says:

    As always, I am here to listen and to do whatever I can do to help you get where you want to go. From what you say, infection is keeping you from your transplant. Perhaps there are options, but I don’t know enough details to tell you. Any time, just email me, if you want me to help you explore options.
    Even though it is extremely difficult … even through your difficulties … because you are so full of Love, your Love shines through and you are an inspiration to ALL.
    As always, I send my Love.
    Ciao per ora,
    Dr. Mike

  6. Robin Griffin Says:

    Never give up Dani. You are a strong, beautiful woman. I am so glad that you are home – even though you are feeling so poorly. I loved seeing your pictures from your vacation. So glad you got to do that with your family. I pray that you WILL find a hospital that will transplant you in spite of the infection in your back. You WILL find one. I know it. And Dani, I will NEVER forget you. You are forever in my heart. Take care of yourself and keep on keeping on. You can do it. Hugs and kisses from across the pond. ❤

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