35- bored in hospital

July 15, 2012

Today is the 9th day of my hospital stay. They saw in the MRI that the inflammation in my back is still very big. I don’t know what they want to do about that because I haven’t talked to a specialist yet. It’s a little annoying that after 9 days nobody has talked to me yet.
I heard that they still don’t want to operate it. They want to wait 6 more weeks. But I don’t think anything will change in those 6 weeks and I don’t have time to wait anymore. I need to get on the transplant list and this won’t happen as long as my back is infected.
I am still throwing up several times a day. I get strong infusions against that. Usually they are used for cancer patients when they throw up while having their chemotherapy.
I still get 5 different antibiotics at the same time but none of them seems to work.
I’m watching movies and I read a lot, but I also just listen to music while daydreaming.
I imagine all the things I will do if I get my new lungs. I want to travel, to see the world. I want to run and dance and jump around.
Here it’s cold and rainy although it’s July. I wish I could fly to a sunny island. I miss beaches, the sea and the sun.
The nurses here are very nice, we talk a lot and have fun. But I miss home, I miss my family and my friends.
The doctors are afraid that I could catch a cold or a virus here so I will go home next week, most probably. But I still don’t know how everything will go on.
We need to get my back well so I can get on the transplant list and get new lungs. Right now it doesn’t look very good but I won’t give up. I just hope that somebody will have an idea how to help me.
Meanwhile I try to make the best of it. Today, one of my best friends will visit me. In the morning I was sending jokes to my stepson and laughed with him 🙂
He and Luis will come to Germany soon. I’m so happy about that 🙂

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Today is a better day. During the last weeks I was so much in pain and always feeling very sick. Today it’s a little better. Im so thankful for those hours, when I have less pain.
Now I’m sitting here in my bed, listening to buena vista social club and waiting for my friend 🙂
My cf- doctor told me that he was sorry that he couldn’t put me on the list. Well. It’s nice of him but doesn’t really help me. I’m happy that I found a hospital that will list me as soon as I get rid of the infection.
The doctors say, that they don’t think that the back will heal. But I won’t give up. I just try to stand the pain and wait till it goes away one day. And then I will get my lungs, I will recover and LIVE!!!!

9 Responses to “35- bored in hospital”

  1. ziaboga Says:

    hi dani : first I have to tell you I can’t understand after nine days anybody talked to you yet.I’m glad to know luis and your stepson soon arrived in germany.Also is very important te get better your back to be transplanted.I’m sure it’ll happen.I’m sorry you’re boring but all hospitals are boring.the next week you’ll be better at home.
    Recuerda mi gran hermana y amiga que siempre que necesites algo puedes contar conmigo, a cualquier hora o día yo estaré para hablar contigo, animarte y ayudarte en todo lo que esté en mi mano.Mientras tanto trata de distraerte y espero que tus dolores mejoren para que sigas contando esos chistes tan buenos.Y sigue luchando para que algún día podamos tu y tu marido vernos con mi mujer y yo en un bonito lugar y disfrutando de ese sol que tanto te gusta.un beso fuerte.

  2. Mark W Says:

    Hoping that you will be able to get treatment for your back soon and then things can move on for you.
    It must be hard to stuck in bed all the time have you managed to do any more art? I love your pictures:) When you get home and spend some time in your own place it will be easier.
    Happy to hear that Luis will be coming to Germany soon! You are in my thoughts and I am sending you all my best wishes hoping that things improve soon:)

  3. donna Says:

    Dani, a couple things hun, you should be drinking alot of anti-inflammatory teas and drinking alot of water. You need to get feeling better so they can get you a new set of lungs. I’m glad Luis will be there soon because he probably brings a smile to your face. Those are the things I live for and so should you such as being in love, babies, being with friends, writing poems etc etc. I love writing lists of things that make me smile and this helps keep me focused on what is positive and happy instead of thinking about what I can’t do and remembering what I can do. Does that make sense? Anyway, Dani I keep you in my thoughts and prayers all the time because you deserve to live a long life. That is what is right….you feeling well, happy and enjoying your life. Not sitting in a hospital thinking about what you cant do. I want to see you get your lungs and write a book about your whole experience and enjoy a fulfilling life. Keep your dreams alive and cherish what you have now. Fight to feel good so you can get those lungs. Come on girl! You can do it. Get the anti-inflammatory teas and get drinking soon. Green tea is also real good to get detoxing and cleaning out the bacteria. You must flush those toxins out. Okay? You are such a brave girl. You really are.

    ((hugs)) Donna God bless u!


  4. Still thinking of you Dani. Hang in there I know there is a new set of lungs for you.

  5. Mike Mattison Says:

    Good luck, Dani. You keep fighting!!! You are one of the strongest people I have ever seen. I lost my fiancee to CF last year. She fought hard, it is tough to watch you CFer’s. Always praying for a cure.
    Mike

  6. Mike Mattison Says:

    Good luck Dani. You really seem like a fighter. All of you CFer’s have a tough road and it seems to me that you are the only ones who have the strength to handle what has been laid in your laps. My fiancee, Vanessa, passed away last year after her long fight with CF. She, like you, had more fight in her will, love in her heart, and strenght in her soul than anyone I have ever met.

    Keep up the good fight.

    Mike Mattison


  7. Dani, you haven’t been on. I’m getting worried.

  8. JAN GRAVES Says:

    HANG IN THERE PRETTY LADY !! YOU HAVE ANGELS ALL AROUND YOU ! YOU ARE SURROUNDED BY GOD’S LOVE….HE WILL TAKE CARE OF YOU ! I FEEL IN MY HEART THAT YOU WILL GET THOSE NEW LUNGS ! KEEP DREAMING….YOUR DREAMS WILL COME THROUGH !! LOT’S OF LOVE & HUGS ❤ ❤ ❤

  9. Genevieve Says:

    Darling one, I follow you on twitter. My heart is tremendously burdened for you. I pray that God would touch your back and heal you where the doctors can’t. Jesus can heal where no man can go. He is faithful. I know this full well. I pray you will get your new lungs so you can do all the things you long to do, so you can enjoy life without suffering. I carry a spit cup with me just about everywhere I go. I hate it. I just want the Gagging, coughing and mucus to leave and never come back. 😦 I battle a rare form of CF, Bronchiectasis and was just diagnosed with systemic lupus. I spent 8 months in the hospital fighting for my life after the birth of our only daughter. I almost died 4 times. I had bed rest for the entire time I was pregnant due to the bad inflammation in my lungs. I had severe infection all throughout my body after I delivered our daughter. She is a miracle and so am I! All I can say is I know the afflictions, disease truly is terrible but I will never stop believing God for a miracle, and while I pray and wait, I will believe for yours also!
    Genevieve


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