Update from fuerteventura

November 23, 2015

I haven’t posted for a long time but now i wanna reactivate my blog. I had a hard time dealing with the stroke problems but I think I can deal with it now more or less.
My best friend Julia moved in with me and it’s so great to live with her.

At the moment we are on vacation on a Spanish island called fuerteventura. It’s one of the Canary Islands. Today was our last day and tomorrow we will go back home.
I’ll finally get my dog back.

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Yeah, you read correctly- adrian and I adopted a puppy from the dog shelter. She was 6 months old when we got her. She’s from Ukraine and she was mistreated there and has mace horrible experiences in her life. She needed lots of time to trust us but now we are a perfect team.

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Adrian is still in hospital but he’s finally getting better.

I decided not to try to get on the waiting list for a transplant right now. Many of my friends died lately and I have so many other health problems that a transplant is too risky and will most probably kill me.

So I’ll just enjoy my life and hope that the cf will treat me nice in the next few years. I just try to enjoy every moment in life.

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Tomorrow we are going back to Germany and the day after tomorrow I will be admitted to hospital to have a port surgery. I’m so excited… NOT!

I’ll write more as soon as possible.
Hugs from Fuerteventura

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Long time no post.

Tuesday was my birthday and I turned f*cking 28. Might not sound old to some of you but if your doctors have been telling you for 10 years that you won’t have much time left to live, it feels pretty awesome.

Unfortunately still not all cfers reach that age. Only thinking of last year I can’t count the friends that died without reaching their 30ies, some never turned 20 and my little princess only got to live 8 years in this world before she passed after suffering a long time on ICU.

Last year I lost many of my really close friends.

In 2010 I was in coma and there was not even one doctor that had not given up on me. Even my family couldn’t really believe that I might make it. But I did. They had to amputate 3 fingers and 3 toes, but I lived. I needed a big heart surgery. But I lived.

In 2012 I was denied to get a transplant. They said I only had 6 months left and then I’d die. But I lived.

In July 2012 I had a stroke. It wasn’t sure if my body could handle the huge pressure in my brain. But I lived.

The doctors have given up on me so many times, i don’t really trust their prognosis anymore.

In 2015 I just wanna enjoy my life. Go on vacation and try to get my strength back. Right now my lungs don’t feel that bad. I think I can afford to take that break, that I need so bad. I will dedicate my time to Adrian and my close friends and family. I’ve spent too many months in hospital. I’m tired of it.

I wanna live with cf but in the last months and years I’ve been living for the cf- the disease controlled my life. My day plans are according to my therapy any treatments. I’m in hospital so often. Many times I must say “sorry I can’t” when I’m asked to meet with my friends.

I just wanna enjoy my life in 2015.
I wanna become 30 but to achieve that goal I need to be stronger than I’ve been lately. I noticed that I had more negative thoughts than ever before although my life isn’t that bad.

I have a car, a nice big apartment, a boyfriend that loves me, true friends that really care about me. I have enough money to buy whatever I need. But anyways-there’s something I’m missing.

I miss going to school or having a job… I don’t know. Well. It’s 1 in the morning right now and I should sleep. I’ll try to write more soon. Lots of things to do lately. But I’ll try to make some time to post an update.

Goodnight

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!

Hospital / future

February 22, 2014

On Tuesday I went to hospital for a check up. My lungs have gotten way worse since I am back home. The antibiotic-resistant problem bug kept spreading. before I just had “some” in my test results, now it says “lots”, although I’ve been taking antibiotics for it all the time 😦
The doctor gave me two more antibiotics now, one as a pill and one for my nebulizer to inhale.

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I’ll keep trying to find a hospital, that lists me for a transplant. I’m planning to make appointments in Munich (3-4 hrs ride), Freiburg (2-3 hrs ride) and Berlin (8-9 hrs ride). If they refuse to list me, I can still go to smaller transplant hospitals with less experience. I’m sure somebody will give me a chance. I’ve come too far to stop now. And I know, a new lung is my only chance to survive and to have a life that’s worth living.

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Yesterday I went to the show of Germany’s number 1 comedian. One of my best friends joined me. It was so funny and we laughed a lot. We could drive through the VIP entrance and stop right at the front door, because of the wheelchair. For the same reason we didn’t have to make the line in the cold and got perfect seats. Sometimes being sick has a few advantages too. But I’d rather make the line and sit on the most horrible seat but be healthy. But you can’t always get what you want so you gotta make the best out of what you have 🙂

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I’m still enjoying every moment I have, or at least I’m trying. On the way home yesterday, I was so in pain, but I was just grateful, that I was able to go to that show in first place…
Too many people waste their time with crying about what they can’t do instead of worshipping things they still CAN do. Maybe I’m like that sometimes too, I know I am. But I try not to. I miss the life I had before my stroke but I know it’ll never be like that again. I can’t turn back time. But I can make the best out of my situation. I can work on my recovery. I can fight for a transplant. I still can enjoy life. And that’s what I’m doing.

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When I was in hospital for the check up, I was asked, how much the transplant is worth to me. If I was willing to really fight for it even if it costs all my energy and I maybe get worse.
I said it’s worth everything I have. Without a new lung I’ll die… But if I die, I’ll die fighting till the end.

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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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Pics to think about

January 10, 2014

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