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

Hey folks,
I just an email from one of my blog followers. Her name is Heather and she shared her hard, cruel story with me and it really touched me.
8 years ago, she was diagnosed with a deadly cancer that’s caused by asbestos- mesothelioma. She gave birth to her beautiful little daughter Lily.
The doctors told her, that she only had 15 months more to live.
They had to do a life saving surgery, including the removal of her left lung.
Her goal in life is very similar to mine- we wanna educate people about our disease. I decided to help her. Not because there’s anything in for me. But because every cruel disease needs a cure and we need awareness. People should always help each other, no matter if sick or not. Most people live a healthy life and think that the worst things in life are break-ups or when you get fired. Never forget to be grateful for what you have.
After the stroke I had to learn to take nothing for granted. From one day to the next I couldn’t move my arm nor my leg. I was depending on others, I was lost and helpless. I’m so lucky, I recovered mostly. It’s not like before the stroke but also not as it was right afterwards.

Heather has a daughter. She would deserve to live a long happy life, see her daughter grow up. But maybe she’ll never have the chance. Her disease isn’t like mine- cf is in your DNA. It’s nobody’s fault.
But Heather’s struggle was caused my asbestos, which is forbidden in my country for many years, but still allowed in the USA. For what reason so ever. It’s proven and known all over the world, that asbestos makes people sick. I wanna help Heather to raise awareness, and we would be thankful if you would help us to spread the words cystic fibrosis, mesothelioma and organ donation.

Please also check out and share the following link: http://www.mesothelioma.com/heather/awareness/#.U0e5zZIayK0
http://www.mesothelioma.com/heather/

Thank you all, also in the name of Heather and her daughter Lily

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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Happy New Year!!!

January 1, 2014

I haven’t written for such a long time… Had many things going on, in august I had a sepsis and almost died of it, had a big operation that has given me an ugly scar- but hey, I’m still alive. My lung function is on 38% right now, almost 20% better than before the bronchitol. Right now I’m in Miami with Luis. I’m feeling so good, I reduced my pills and I hardly need oxygen during the days, only at night I really need it. I’m enjoying the easier breath so much! It’s so relaxing to be able to breathe and it’s like a dream to just breathe without thinking and without fighting. I’m living my dream. But my doctor is already telling me that my lungs will keep dying and that I need to get on the transplant list as soon as possible to have a chance to Live. He told me that in an email while I’m on vacation, saying I had 2-3 years left. So that’s my new year resolution, to get new lungs. I wanna live. I’ll try to write more often this year. I was just not ready last year. I’m sorry. I had too many things on my mind. I’ll stay in Miami until January 20th, then back to cold, unfriendly Germany 😦 I wish I could stay here. Yesterday I donated my money from Christmas to the cf research, imma do my part to find a cure and get us all out of this mess. I’m feeling very nervous right now. I’m on vacation why did the doctor have to tell me about the 2-3 years life expectancy now? Couldn’t it have waited? Damn. I’m afraid that a transplant could shorten my time on earth cause maybe not everything goes right or maybe I catch an infection. My mind is going 100 miles per hour. Anyways folks, I’m heading to bed now. Happy 2014 everybody!!! I’ve missed you guys! Thanks for all the incredible feedback you people are incredible! Will write more soon, goodnight now!