18 – Fight for every breath

April 19, 2012

Good Morning everybody 🙂 today is not a good day for me. I am breathing very hard and I am very tired because I haven’t been able to sleep last night- as always.
The lady that shares the room with me now is not very nice and not very smart. She asked me tons of stupid questions, like if she can turn on the light with the button that says “light”. And I was like “No, this one is for flushing the toilet”.
She continued asking questions like this for about 20 minutes, before she decided to ask me about every little detail of my disease, while I was trying to watch a movie. I asked her several times to leave me alone, but she didn’t really care. She told me, that she has to stay for a while. When I asked, how long she had to stay, she told me that they asked her to stay two nights. I felt a little uncomfortable when she asked me for how long I have been here and how long I have to stay. When I told her, that I have to stay at least 6 more weeks,she was quiet. Finally I could watch my movie 🙂
Later she wanted to sleep while I was still watching a movie. My infusion pump was making noise, because the infusion was finished. I wanted to call the nurse so she can put a new one,but the lady got up and wanted to change something on my machine. I asked her to stop that immediately but she told me, she will turn the machine off so we can go to sleep. I got mad and told her to stop it right now, and she got mad because I called the nurse. She did not understand that I needed another infusion. She left the roomkept continued to watch my movie.
After a while I felt my heart beating very fast and I felt nervous. It was like the night before. I didn’t really know why I had this feeling, but I felt threatened. Luis was in a business meeting so I couldn’t reach him. The feeling didn’t go away. When the lady came back after two hours, I smelled cigarettes. The whole room was smelling like smoke. That’s really great when you have breathing problems. I still was nervous and restless. I still felt afraid but I didn’t know of what. Luis still didn’t answer and in this nervous, scared mood I started to accuse him for not answering me.
It always gives me strength and hope when he is with me and he is the only one that can calm me down when i am scared, in panic or nervous. It helped me a lot when he was in hospital with me…


Of course he got mad about my mad messages and when I calmed down after a while I felt very bad about it. I apologized, but he didn’t answer and went to sleep without saying goodnight. I always want to clear the situation before we go to bed. I am afraid that one day I could die while we had an arguement. I am afraid that I could die and the last words we talked were bad. Maybe it’s ridiculous but I really feel uncomfortable if we ignore each other for a while or if we go to sleep without a kiss or a nice message.
I wasn’t able to sleep all night. I thought of Luis, and how bad I made him feel although he is doing anything for me. The lady was snoring very loud. I was in pain. I had lots of mucus in my lungs. All those things kept me up.
In the morning I was already breathing bad. I ate an orange and tried to sleep again. My breath got worse and worse. My Physio therapist showed up and tried to help me to cough and to get the mucus out. It did not work.
I don’t know what’s wrong, if I have a cold or if it’s the stress and the fight with Luis that causes the deterioration. But I feel that it’s getting harder and harder to breath. Everybody that comes to my room tells me I look very bad today (thanks!). My doctors are a little nervous about it. They told me a week ago that my lungs will deteriorate if I won’t get up soon.
I hate the feeling of this hard, nasty, stringy mucus in my lungs. No matter how hard I cough, I can’t get it out. I feel it closing my lungs. Every breath I take makes a gasping, wheezy sound. When I talk, my lips turn into blue because the blood oxygen is too low.
One of the questions, that were sent to me was, what i am scared of. I am scared of suffocating. That’s my biggest fear. I am not afraid of dying. But I don’t want to drown in my own mucus. I still hope that I will get my new lungs in time, but I know that it could also end like I described.
On days like this, when I have to fight very hard for every little breath, I think about it even more. When I spit out the bloody mucus, that I finally coughed out. Feeling, that this was just a little little piece of all the mucus that is still inside of me, trying to close my lungs completely and to kill me.
Everything is so exhausting when you can’t breathe. To change my clothes needs all my energy, even when I breathe better than today. Eating is one of the things, that are really hard for me. On dass like Today, Talking needs lots of energy. Every sentence I want to say is hard. I need a little break after every few words.
I just wait in my bed. I don’t know, what i am waiting for. I just watch the infusion run into my little vein catheter in my neck.


Drop by drop it runs in, in every minute of the day, in every minute of the night. It is hard to imagine, that this little drops, that look like water, are keeping me alive.
Day by day they do their job. But they are not able to cure me. They just keep me alive. While I lie here, just busy with trying to breathe. While I lie here and watch the infusion drops, hoping that they will do their job for some more weeks.


2 Responses to “18 – Fight for every breath”

  1. jennie Says:

    Hi, my friends baby has cf and I’ve tried my best to understand it and what it means for her and harry, your blog has been the one thing I have read that really helps me understand, you are doing a fantastic job of raising awareness and more importantly understanding,
    I really really hope you get New lungs soon
    Jennie x

  2. ziaboga Says:

    hola daniela:
    Entiendo que no soportes a la persona que está a tu lado.cuando estás con pocas fuerzas y te cuesta respirar, no te apetece nada tener otra persona en tu habitación.Espero que te cambien de habitación y puedas tener más intimidad, para no tener que soportar también ese olor a humo.se que echas de menos luis , pero el siempre que puede está contigo y te da fuerzas.Espero que mañana puedas respirar mejor y consigas alguna noche dormir bien para tener más fuerzas y seguir en la lucha.Estoy contigo desde la distancia y de mando mucho ánimo.
    Un abrazo y sigue luchando.

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