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!

Thoughts

February 9, 2014

Thoughts

Everybody thinks I’m so strong. The truth is: I’m not. I complain, I cry, I feel sorry for myself. I just don’t let people notice it or let the self-pity stop me.
Before the stroke I had a Bine marrow infection that gave me so much pain, that I wanted to die. I didn’t see the beautiful things I still had in life. Actually, it wasn’t much. But I had an incredible support system of friends, family and my partner. I had my beautiful apartment with my fishes in the garden, my dance crew, I had a life that I loved. But in that moment I wasn’t able to see that. I saw my pain, my problems and the things I could NOT do.

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Then the stroke happened. I don’t remember much. I went to bed, woke up on ICU, a doctor was asking me what they should do, because my brain was swelling which caused lots of pressure. She explained, that I had a stroke and that I’ll be half side paralyzed now. In this moment I didn’t really understand what this would mean for the rest of my life, but I told her, that I rather wanted to die than having my skull opened.

My brain magically stopped swelling. I didn’t die. I was transferred to a stroke unit after 1 week. I noticed, that I was in a way worse situation now. I couldn’t eat myself. I had to wear diapers. I couldn’t even sit with two people holding me. I thought I’d recover in some days.

After some weeks, I was transferred to a rehab clinic. They told me, that I’d never walk again or do anything with my left arm. I started to notice, how horrible life was now. I couldn’t shower myself. Couldn’t get dressed by myself. Couldn’t go to the toilet myself. I couldn’t pick my clothes from the closet myself because I couldn’t stand in front of it. I couldn’t even change position in my bed on my own. It was a nightmare. I started to realize that I won’t have my dance crew anymore, that I’ll never dance ever again. I had to give up my beloved apartment and move to a place, where I still don’t feel home after two years. I lost some persons that I really loved because they couldn’t deal with my new situation. I lost the ability to concentrate for a long time and to think as logically and quickly as before. I felt horrible.

In those times I was very close to giving up. If I’d have been alone in that rehab hospital, I’d have quit. But Luis went to Germany and helped me to get through this. I learned to stand, walk and even to move my arm a little.

Again I overcame what was supposed to be the end of my life. At the moment I’m doing ok, I went to Miami for a vacation with Luis. I am doing exercise to get parts of my fitness back. I found new persons, that care. But most important: I found a meaning in my life.

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I know I won’t ever dance again or walk as before. I know I gained too much weight due to the medicine and the time in bed and wheelchair. I’ll never be like before. But I’m alive. I wish I could turn back time, but I just can’t. So I’m sitting here, making the best out of gets I have left. The stroke destroyed me and pushed me at the same time. I can’t say that I love the way it is now. But I’m grateful for my recovery and all the help and support I got.

Right now, I’m not sure, where I wanna go and what I wanna do in life. In Miami, next to the ocean, my lungs were doing so incredibly well, I wish I could move there. I’d need a health care insurance, which seems to be very tricky in the USA. If I stay in Germany, I wanna apply for new lungs again and go back to school. I wanna do something, not just sit at home. I wanna make something out of my life, not waste my time.

If I learned one thing, it’s that time is precious and life is short. Every single thing that makes us smile deserves to be appreciated. I always said I value what I have. But now I know, I never valued the ability to walk to read or think. Those things were normal- even to me.

But things change…
Most probably I have more yesterdays than tomorrows. But now I really value every good minute, every step I take, every second in the sun. I have learned my lesson. It was tough, but I made it. And I think I’m stronger than ever.

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