March 13, 2013



I’m back again

March 11, 2013

March, 11th
I’m back

I haven’t written anything this year yet, so first of all I will give a quick summary of what has happened in the first three months of this year so far.
In the last weeks of 2012 I started to get high fever and I got more and more sick so on New Year’s Eve I just wanted to be in a hospital. I was pretty sure that my port was infected again and so I was very worried. I talked to my cf-doctor who told me to come to hospital the next morning right away. So on December 31st one of my best friends visited me in the afternoon, the rest of the day my mum stayed with me, she also spent the night in my apartment because she didn’t want to leave me alone when I was so sick. But I felt so horrible that I went to sleep at 9pm, i have the opinion that it’s kind of pointless to celebrate the new year. We should be grateful for every day and celebrate it. So I called Luis to say goodnight and went to bed without fireworks or prosecco. But I never drink alcohol so I didn’t care. I just wanted to rest, I felt so horrible. The year 2013 started, like the year 2012 had been almost all the time- I was sick in hospital. After a few days they took the port out, the microbiology found the bacteria which was causing the sepsis and fever and they could send me home with the antibiotic that would kill the bacteria. So I stayed home for three weeks. On January 11th, Luis came back to Germany. I could pick him up from the airport myself and just this made me very happy because I had been worried that I might be still in hospital when Luis arrived. We enjoyed the three weeks together and when I had to go back to hospital after three weeks, he joined me and slept in a hotel, and I was so happy not to be alone there.
Usually a port can be put with local anesthesia but the doctors were worried because my chest is already full of scars they expected the procedure to be more complicated and painful, so they decided to give me full anesthesia. It turned out that it was a good idea- first they decided to open the right side of my chest but the vein was too bad and they couldn’t get the port in, so they had to open the right side also. Between the two tries I woke up because the anesthesia was calculated for the time they would have needed for one try. After they told me that they would have to open the other side also, they gave me another shot and I went back to sleep. The next day I went home and I was very happy about it. A port is usually not a big thing. I didn’t even need painkillers for it, just a coolpak. Mostly the fear is bigger than the real problem. I was just a little nervous because a few weeks before a good friend got a port and they harmed his lung during the operation and he had a very hard time afterwards.
When we were back home, we signed Luis in at a school, so he can learn German. When we were there I took a look at the classes also and signed in into a Spanish class which is every Monday morning and afterwards I go to a special Pilates course where they train the back muscles. I’m hoping to reduce my spine- pain like this. My class started 3 weeks ago and Luis began his German lessons two weeks ago. I love when he speaks German, his accent is so cute but it must be so hard for him, German is a very difficult language. Last week I had to go to hospital for three nights. Luis couldn’t join me, because he had to go to school. But it was a short stay, so it was ok. The reason for this stay was, because they wanted to try to improve my pain medication. During the last three months I’ve been in lots of pain, I had many sleepless nights because of it. In hospital they gave me new pills additionally to my painkillers that I already had but they asked me to come back for a longer stay soon. But last year I spent 8 months in hospital because I was too sick to be home. Now I’m finally okay enough to stay at home with Luis’ help so I really really don’t want to go to hospital at the moment, especially when Luis cannot join me because he has to show up in class every morning. I’m just hoping that I can stand my pain while I’m good enough to stay home.
Last December, the best transplant hospital in Europe rejected my transplant application. They said, that a transplant would most probably destroy my body more, than it would help me, and they think I would not even survive the first few months. I thought of going to ask other transplant- hospitals if they’d do it, but then a new medication for cf was approved in Germany and I convinced my doctor to give me a prescription for it. With this new inhaler, my lungs function improved from 18% in December 2012 to 36% in January 2013 and 46(!!!)% in the end of February 2013. My need of oxygen went from 6-8 liters per minute down to 3-4 liters per minute and for a short time I can even be without it, which finally gives me the freedom of showering without having a tube in my face- for the first time since end of 2011, more than 1 year I was tied to the oxygen-tank for every second of the day. My life and my chance of surviving depended on those tanks. My need of oxygen when I had a cold was already at 12 liters- that’s the maximum a human being can get with an oxygen machine. Most probably I’d not have survived another setback and my life expectancy was not measured in years but in months. Right now, we are talking about years again. I finally received the miracle we always hoped for. And I think I’m the happiest and most grateful person ever now. I’m barely feeling short of breath anymore, with my oxygen in the basket of my safety walker, I could even walk some short distances, if the pain was not too bad. I had not been able to do so before for a long while. The mannitol, that’s the miracle-medication’s name, is about to be approved in the USA. Right now, Germany is more up-to-date about new treatments for cf than the USA. Most people here used to tell me that I should go to America if I wanted the best treatments and latest research results. And now look at this- my life was just saved by a new medicine which is not even available on the American market yet.
If I keep improving like this, I want to go to Florida in December to see Luis’ son and get to know the rest of his family and also to have a better weather than here in Germany. In summer Luis and me will join my family to Italy. I can’t wait to be on vacation and in the sun again, last year I was in hospital all summer long.
Today I went to school but my pain was incredibly strong. I was so glad when I was back home on my sofa… I really love to go to school. But the pain is too strong to go there every day. In the afternoon I watched a movie about a family whose mother/wife suddenly dies of a disease. The children start to regret things they’ve said to their mother in the weeks before she died and they say, they wished there would have been a sign so they knew, that she was deadly sick. That made me think about one question: are my family and friends sometimes so nice, patient and friendly and understanding, because they’re afraid I could suddenly die and they could feel bad because of what they said. I think, my loved ones are kinda expecting my death. They’re not waiting for it all the time, but they wouldn’t be surprised if somebody would tell them that I just died. I think they know very well, that most cf patients die very young. And my health has been more than difficult and life-threatening for me during the last years. But I’m not planning to die young. I’m not planning to let the cf win. Although I know that my family is already thinking about how my funeral will be. I’m not gonna die soon- I’ve come too far to loose it all now. I feel like I was immortal at the moment. So many times the doctors said I’d die and I’m still sitting here, writing this blog. Yes, I’m in pain and yes, I have an oxygen-tube in my nose, but I have a heart beating in my chest. And after everything that has happened, that’s more than I could ask for! I just received a new life. And I’m more than thankful.

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.

How to make life count

November 4, 2012

And it’s already Sunday again… What a week. On Monday and Tuesday I went to therapy till about 2pm, then I was exhausted. Luis cooked his super delicious spaghetti for me. They had a typical dominican sauce on it. Never had Dominican food before i tried the spaghetti the first time. We also went to the city to buy some gifts for Luis’ family in the USA. I still don’t like the fact that he leaves on Monday. The time without him is always horrible and heartbreaking. One of my best friends will live with me for the next 2 or 3 weeks. She moves in on Monday night. Tuesday evening we went to my doctor and he gave us the bad news that there’s an infection in my shoulder and that’s most probably the reason why I have so much pain in there. I wasn’t really amused about that but I think that’s normal. My back pain is getting worse too and I don’t know why. They still don’t know wether there’s a spine infection still or not. I’m still waiting for an appointment for the tests I have to get done. I hate that they’ll do it when Luis is in the USA because the tests are so incredibly painful. Last time the pain was so cruel that I was having the wish to die right away, just to end the pain. On Wednesday a d Thursday I had a fever and huge trouble breathing. That scared me a little, it was only a little fever- so what is going to happen if I catch a bad cold or flu? On Friday I was still sick, so again no therapy and no going out, we just went for a walk to the library in my wheelchair. Today in the morning we went to the city to go shopping, I bought books and I looked for things I could put on my wish list for Christmas. I’m hooked on books and DVDs, that’s how I spend most of my time because when I am lying down I can stand my pain. As soon as I try to walk, sit or just stand, the pain is killing me. In the afternoon I started reading one of the books I bought in the morning, then my mum and my stepfather visited us. In the evening we went to a show of a German comedian with my friends. We sat in the first row, right in front of the stage, thanks to my wheelchair. It was really funny and Luis even understood some of the jokes. I laughed a lot but my back was giving me more and more problems and at the end I could hardly sit anymore because of the pain.
Last week I talked to a lady that is doing reportages for one of the most famous tv channels in Germany. She wants to visit me with a camera team to tell people about my life with cystic fibrosis and the hope for a new life with new lungs. When we talked on the phone, she asked me about my biggest wish I told her without thinking for not even a second:”my biggest wish is to get new lungs and to breathe without thinking about it” but when I thought of it I noticed that right now my biggest wish is to be without pain for a while. Right now there’s no hour without pain. No night where I could sleep without waking up from the pain. It’s very exhausting. I’m a taking morphine pills but they don’t really help. The pain is still cruel and I can’t deny that I’m suffering from it a lot. It lowered the quality of my life a lot already. Just because there are many things I can’t do anymore just due to the pain. And the things I could still do- I can’t enjoy them like I did before. I just wish they would just disappear one day. On Monday the lady from tv will visit me in the afternoon. She asked if my parents, sister, best friends or brothers could be there so she could interview them. But my brothers have to go to school, my sister studies, dad works so I asked my mother if she would do it but she told me that its already hard enough to see her daughter suffering and dying slowly without talking about it and that she doesn’t want to talk about it with the lady because it would get all the emotions up again and would make it harder for her to handle things. So i think I have to accept that. My friends also can’t talk to her on Monday because the one that’s moving in with me has to work that day and my other friend is on Tenerife for vacation.
Tomorrow Luis and me will meet my cousin for lunch and Luis has to finish packing his stuff because on Monday at 8 in the morning we will have to go to the airport. Afterwards I’m planning to go buy groceries with my dad’s driver from work. I still can’t go on my own. I can’t drive my car and in the wheelchair I’m not able to push the shopping cart. Most things are too high up in the shelves anyway so it’s good to have someone talker with me.
In the afternoon the lady from tv will meet me and we will plan how we will do the reportage and when and discuss all the little details. Many people told me not to talk to this channel because they’ll try to make people to feel sorry for me. But the reason why I do it is, because I want to raise awareness. Germany is the country with the lowest amount organ donations in Western Europe. Only 18% of all Germans carry an organ donor card. 74% say they would donate but the law says that you need a donor card, so all the good intentions of the people don’t help if they don’t get a donor card, that proofs their will. Most people don’t want to think of their death or they just can’t imagine that they could die. Or some people are just too lazy to spend time with getting the card, what you could do online very easily. My hope is, that if my story touches the people that watch the reportage, they will maybe get a donor card. I want to inform people because many persibs here still have prejudices and stupid reasons for not getting a card. Fir example a week ago somebody told me, that she hasn’t gotten a card yet because she was mad at the doctor. Do you really think the doctor would care if you’re a donor or not? He isn’t the one suffering or dying. Every day three people in Germany die while waiting for an organ. That’s unbelievable. We don’t behave like we were a huge industry nation in the year 2012. My mother actually said that even if I did that and something would change because of my reportage and engagement, it wouldn’t change fast enough to save me. I told her that this isn’t the way I think. Even if it won’t help me it could maybe help all the cf kids that are young at the moment. I can’t just be complaining about people’s attitude and the laws without trying to change the situation. I might not be famous and I might not have billions of fans that listen to me. But anyways I try to do my part in all that. You don’t have to save the whole rainforest to make the world a little better. The world also gets a little better, if you just help an old lady carrying her bags up the stairs and listen to her stories. When you smile at people even if they look mad or stressed. If you wish the new cashier in the supermarket a great day and tell her to cheer up although she’s still working very slow and making many mistakes. Things start changing in little things. You have to go step by step. And I will try to do my best to improve the organ donation situation in Germany although I’m bit a superstar and although I don’t have any connections to German politicians or celebrities.
Another thing that got me very upset last week. A friend of mine did something very stupid and destroyed her best friend’s family by spreading bad rumors and lies. Of course everybody- including me- got mad. She started telling me, how cruel her life was, because she feels ugly, her ex boyfriend is a jerk, she had to quit school because she got pregnant when she was 16 years old, because of a lot of stupid reasons. I told her that I’d be so grateful to have a life like hers. A boyfriend is somebody you choose, if you fund out he’s an asshole, you could just make him your ex- boyfriend. Nobody forces you to stay with somebody. And how can you tell somebody who is fighting to survive every day tell that you hate your life because you’re ugly (she isn’t ugly, by the way.) i would rather be looking like hunchback of Notre Dame but be healthy instead of looking like a top model but dying young and suffering of pain and breathing trouble all the time. She complained that her kid was always crying. Girl, Nobody forced you to get this kid. We are in Germany, they sell condoms here, and if you don’t know how to use them we have doctors that could abort the embryo. Everybody usually knows that kids can be exhausting, babies cry, babies don’t care if it is 3am – when they’re hungry, they’re hungry. I would be so happy if I could get a baby. But I can’t even take care of myself, I couldn’t even hold the baby with my paralyzed arm and my 12 broken vertebras. My medicine and the continuous lack of oxygen the kid would be very disabled, but most probably neither I nor the baby would survive the pregnancy. And about the school she had to quit- why isn’t she just learning things at home like I did during all the years in high school? Having a baby doesn’t mean you have to stop doing everything, and as a matter of fact I know she still has time and power to go to parties and clubs, so why is there no strength for learning when the kid sleeps? I wish I had her life, being healthy, without this horrible pain around the clock, no breathing trouble and especially without dying young. Without knowing that every year it could be the last Christmas, the last birthday. And of course she doesn’t have to spend all this months in hospital. She doesn’t have to do six hours of therapy daily. She’s not taking 30 pills a day just to stay alive. I don’t understand how somebody can be so ignorant and ungrateful, how she can take all the things in life for granted, and how she can even think about telling her “cruel” story to somebody who is suffering every day, every hour and who will die soon if a donor won’t be found soon. I got mad about this girl and her attitude all week. I know I should just block her on all social networks and ignore her. As a matter of fact- I don’t know why I still read her messages, why I still answer her, why I still can’t believe what I’m reading. I should stop it. But on the other hand she shows me, how I can still appreciate my life and little nice things in life although my life in general is fucked up and us giving me such a hard time right now. It shows me, that if I keep fighting, there might be better times one day, where I can have all the things she has but doesn’t know how to worship. Meanwhile I am just feeling sorry for her and wonder, how ignorant and stupid people could be, while I still fight to survive and to get my lungs. I still value the little things I have in life. I’m thankful for having such great friends, for my family, for a nice subset or fresh morning air outside. I’m grateful fir hearing birds tweet, for reading a good book or eating delicious food. I’m happy when I see the sun shining or when I hear a song I like. I’m incredibly grateful fir every minute that I can spend with Luis. I’m thankful that I found the live of my life in him, even when we fight sometimes and have different opinions sometimes. I hope he comes back from America very very soon because when he’s not here I’m thinking of him around the clock anyways. I hope that all of you my readers know how to value the little things in life, that give us the beautiful moments that make life count. And to those, who don’t know how to be so grateful yet, I wish that they’ll learn soon, what counts in life and how to enjoy it to the fullest. Goodnight for now.

I’ll never quit

October 29, 2012

It’s 8 in the morning now and I’m already on my way to the therapy. Yesterday we met a couple that found Luis’ lost phone, we invited them to eat and drink something, it was cool. On my way to therapy I can already see snow, but in the village where we live there’s only rain. Last week the weather was cool and we went for a walk almost every day. I enjoyed the fresh air and to see the blocks around the house.



It was beautiful and I was very grateful that I’m still alive even when my life is full of pain and breathing trouble, full of things that I miss, that I can’t do anymore… But I still love my life. I have the best man I could ever imagine, I have my grandparents, my brothers, sister, aunt and uncle, cousins that support me. And there are still things in life that I can enjoy and that I love, even when my life isn’t like before. I’m fighting every day to get a little of my old life back, to recover a little. And I will never stop. Never ever. It was hard during the last months but it needs more to push me down so hard that I won’t get up anymore, I’ll always come back. Right now I’m listening to my music and watching the nature outside and I notice how beautiful this world is, and that I don’t want to leave this world yet. Even that the pain woke me up last night after 4 hours of sleep and didn’t let me fall asleep again. I’m tired and in pain but I’m ready for the next day where I fight to get my life back. The doctors told me, that in the first year after the stroke, my arm and leg won’t improve at all. But look at me now. I can walk a little although its insecure and looks weird but I’m walking. I can’t move my arm yet but I can open my fist and close it again, I can hold things a little. I didn’t give up although the doctors told me there wasn’t a chance for any improvement. But doctors are not almighty. They don’t know me, they don’t know my will. I’ll never give up. I won’t stop till I get my lungs. I’ll never quit.

Another week goes by…

October 28, 2012

New week, New hope
Another week is about to start. This week was ok for me. Monday and Tuesday I didn’t have therapy because of my back. On Wednesday I went to my cf hospital to see a specialist for my spine. After the 3- hours car ride I had to wait 2.5 hours. I forgot my book but Luis was with me so I didn’t get bored. I just had incredible back pain because I still can’t sit very well because of the back. When we finally got to see the doctor he told us that he couldn’t see anything in the MRI because they didn’t use contrast liquid. I got a little mad because when they did the MRI I asked several times if they didn’t want to use contrast liquid. But they told me that it wasn’t needed.
The specialist also said that he couldn’t see any infection, but he also couldn’t say for sure that there is no infection anymore. He didn’t know why the other doctor said there was an infection, he told me that in this MRI you just can’t see anything. So i got even more upset because this idiot, that calls himself a doctor, told me I had an infection, when there isn’t any proof for it. He made me worry for a week for nothing. After the hospital we went home and on our way home Luis and me watched a really funny movie. He was happy because the doctor said he can’t see an infection but I was still worried because he also said he didn’t know if there’s no infection anymore. There’s still a possibility that the inflammation is there. I have to get another MRI done to check. I have lots of pain and its getting worse, so I’m still worried why it is like that.
When we were almost home we stopped by at a car dealer. My car isn’t possible for me anymore. I need an automatic car, because I can only use one hand anymore that I can use well. And my car is too small. When the wheelchair is in the trunk, there’s no more space for my oxygen tank because the wheelchair needs the backseats too. I tested a BMW X1 and it was perfect. It was small enough to see everything although I’m so small but big enough to put everything in the car. It would be a perfect car for me. At my therapy I could do a test if I could drive again. I hope so bad that I pass the test. Without a car I’m so lost. I can’t get anywhere, can’t meet friends, can’t go to the movies or to buy Christmas presents. On Thursday I went to my therapy again. It was a very long, hard day. I had so much pain on that day, I fell with my wheelchair because the oxygen in the back of the wheelchair was too heavy. I was glad that therapists where close and could help me immediately. But all day I was tired because the pain woke me up all night. And I had pain on that day too. I had a group therapy with 2 old men that were complaining all the time, that they couldn’t move well, that they had pain etc. so I asked why they had to go to the therapy and they told me that they had a stroke but they also told me that they didn’t have consequences from the stroke, no paralyzing or other problems. They told me that they just feel horrible because they’re old. So I told them that first of all they’re lucky that the stroke didn’t paralyze them like it happened to me. Second that they should be thankful that they became that old and that they had a healthy life. I didn’t even have one healthy year. I wish I cold have finished college or learn a job at least. I couldn’t do any of that. Even going to school was hard for me. After I came home from therapy finally, I went straight to bed because I felt so cruel. I had thrown up twice during the therapy and when I arrived home I had a cruel headache and felt sick from my stomach so I went to sleep for a while. Later in the evening my friends came to look after me. I was happy to see them but I still felt sick, I sweated all the time. I felt cold and hot at the same time. I had fever and still a headache. On this evening I had a huge fight with my dad and I started to doubt everything. Why am I still fighting? To have pain around the clock without even an hour break? To have trouble breathing all the time? To be paralyzed and spend 6 hours with therapy all the time? I feel useless and unnecessary because I can’t work or do anything else. Right now I can’t even do the things that gave me strength before, meeting friends, going to the movies, just going out, walking through the stores, just to see what they sell, without buying anything. Just to feel a little normal… On Friday I was still sick so I stayed at home, recovering in the morning and in the afternoon we went to buy clothes that I could put on with one hand. I am still afraid of the day that Luis leaves. Only one week left 😦 I will miss him like crazy and I don’t know how to handle everything on my own. He helps me so much. On Saturday we went to have brunch with friends of ours and after that we went to the stores to buy pants without buttons. Afterwards my mum, sister, uncle, aunt and cousins visited us. My uncle and my stepdad helped me to put mirrors and pictures on the wall and fixed the door bell. I was very happy to see them all again and that they helped me of course… Luis noticed, that he lost his phone and a guy called, telling us that he found the phone and that he’d like to give it back. We were all were very surprised because most people would just have taken the phone and sold it somewhere. So in the evening we went to pick up his phone and we were both very happy that this guy gave the phone back. But when we gave it back we didn’t even had time to ask him for his name. So we called him later to ask him for his name and we invited him to go and drink something. Today on Sunday we slept long and then my grandparents came to visit us. They were happy to see me getting better but I still don’t feel improving enough. We went to the cafe next to our house and had cake and tea. Afterwards we went back to the apartment and I explained to my grandpa how to use his iPad. Then we went to see the guy that gave back the phone and his wife. We were talking for about 3 hours. They were really nice and cool. We saved our phone numbers so we could call each other and then we went home. Now it’s 00.17am and I’m still not in bed although I have to get up at 7am in the morning. So, I think, it’s time to stop writing for today and to continue tomorrow,
Goodnight for now 🙂


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.

Afterwards Luis took me in my wheelchair to several stores, and I loved just to look at all the things they sell.

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.

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.