The appointment was quite ok 🙂
First they took blood and where very shocked about my mrsa multi-resistant hospital bug). Because of that I didn’t have to test my lung function or the heart. They just used the tests that were done in my case hospital, so it didn’t take very long.

Right after they took blood, the doctor asked me in his office. He noticed that I was breathing really hard, most probably because of the surgical mask that I had to wear because of that bug.
I told the doctor about my life, when I started to get worse and what exactly happened.

He was very shocked about all my broken vertebras, the infection in the spine that I had, the stroke and the stage of my osteoporosis. He said that all this were facts, that make the risk higher. But he also said that they hardly say no to patients my age, when they need organs. Especially cfers. He said that cf had the best successes and life expectancies after transplant.

But he also said, that my risk to die is much higher than for almost every other patient. That’s why he had to discuss my case with the other doctors involved (surgeon, anesthesiologist,…), he said. That discussion will be on Tuesday. By the end of next week they let me know if they will admit me for 3 weeks to get to know me better and do more tests.

I think my chances for that are quite good because of my young age.
And when I’m there, admitted in hospital, I got 3 weeks to convince them, that I’m a good candidate and that I deserve this chance for a second life with enough breath.

I want new Lungs so bad. I don’t care about the risk. I don’t care that I could die. If I die while/ after transplant, it’ll be at least be a quick process. If not, I’ll die slowly of suffocating, suffering for months and years. That’s even worse. I don’t care if a transplant could shorten my life if I die from it. For just the slightest chance for a normal life with enough breath, i would do anything.

Even If there’s a risk, that i die from it. I really hope that they’ll decide to give me that chance, that I wish to get so much.

Transplant list

April 10, 2014

I’m on my way to another transplant hospital to see if they agree to put me on the waiting list. The other hospitals refused to do so because my other organs and bones are in too bad shape.
That’s why I’m so scared and nervous… I want new lungs so bad- it’s my only chance to survive. The big surgery will be even more dangerous than for most patients, but I don’t care. It’s my only chance and I rather die fighting for a longer life than giving up and accept the situation and wait for my death without any effort to change my situation. My parents are not really with me in that. They say I’ll die sooner than if I was just waiting.
But I don’t care. I won’t die on my knees. If I die, I die fighting for a better life. Plus if I die in the surgery, it’ll be quick and pain-free and at least better than to suffocate slowly.
I can’t write much now because I’m almost there. But I’ll write more later.
Wish me luck please, everyone!

Pics to think about

January 10, 2014

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Luis left. I feel so numb and incredibly sad. It’s breaking my heart. I don’t want to be without him. In the afternoon this lady from TV will visit me. I will look like the world will end soon, sore eyes and swollen face from all the tears and crying. Will write another update in the evening.

Luis ist weg. Ich fühle mich so leer und gefühllos und unendlich traurig. Ich will nicht ohne ihn sein, es bricht mir das Herz. Heute Nachmittag wird mich die Reporterin von RTL besuchen. Ich werde aussehen als ob der Weltuntergang bevorsteht, wunde Augen und geschwollenes Gesicht vom heulen und all den Tränen… Ich werde heute Abend schreiben wie es gelaufen ist.

Yolo

October 19, 2012

Yesterday the weather was beautiful and after we got up late, had breakfast and later lunch, we went to a cafe next to the house. We had cake, that tasted so good and of course my beloved red bull.
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Afterwards Luis took me in my wheelchair to several stores, and I loved just to look at all the things they sell.
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In the evening we watched some tv and did some exercise for my paralyzed leg. I went to bed around midnight and finally I had a night where the pain did not wake me up. It felt so good just to sleep. Luis woke me up several times because my nose was closed. It’s a problem for me when my nose is closed because then the oxygen tube in my nose doesn’t make much sense. I woke up very late today but I felt really really good. Luis and me had breakfast outside in the sun and afterwards I lied down on the sun lounger with my blanket. I listened to the new cd of my favorite artist with my new cool headphones. I didn’t feel any pain or breathing trouble for the first time in a long time. I felt so good. Later I went back inside to join Luis on the sofa. After a while my headache started, the breath became shorter and I felt as sick as always. I got mad at myself and the cf because in the morning I felt great. Why did it have to change??? This year was a horrible year so far. First the broken vertebras in January. Sepsis in January. Back infection from February till July. And when the infection was gone I got the stroke right away. Now that I’m recovering from the stroke, the infection comes back. Looks like I cant get a f*cking break not even for a week or a month. I’m still standing and everybody tells me how strong I am. Im not strong. I just don’t have a choice. And giving up is not an option. And my “strength” is often just a good acting performance. Sometimes I just start crying like everybody else, for example when they told me that the infection is back. I was crying like a baby. I knew immediately what consequences it will have for me. I knew right away that this infection will be my death. I was really down for several hours, but then I decided just to enjoy the time I have and not to think about the future. Maybe I’ll live longer than all those doctors expect. I won’t give up. I want to grow old.
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And I want to use my time to tell people about organ donations and cystic fibrosis. But my biggest wish is, to get a little break. To have some time without pain and breathing trouble. To survive without the 30 daily pills and all the hours of therapy every day. But more important- without pain and breathing problems. Thats my dream. And I’ll never stop dreaming.

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