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.


2 Responses to “I’m back again”

  1. ziaboga Says:

    Hi dani I’m very happy because you’re back again.I know last years were very hard for you and I’m glad to hear you’re improving little by little.It’s amazing your improvement in lung function.YOu told me you were studying spanish but I didn’t know luis is learning germany.That’s great and I guess you’re very proud of him.
    I know you’re still in pain and I wish it is less very soon.
    I imagine you have to be very happy to walk short distances and I’m sure with therapy and your fight you’ll walk better and better.
    Ahora te escribo en español porque se que lo entiendes y así practicas.
    Me alegro mucho de verte tan optimista y de saber que tu lucha durante tanto tiempo te permite ahora hacer cosas impensables hace un año.Muchos doctores y mucha gente pensaban que la Cf te haría abandonar.Incluso tú a veces has estado sin ganas de luchar, pero al final has decidido luchar por todo lo que quieres y has logrado estar mejor que hace un año.
    Espero que tu espalda mejore y que tu medicación haga efecto para quitar el dolor.
    Me alegro de que puedas ir de vacaciones en verano a Italia y que luego en Otoño vayas a conocer a tu familia de Miami y a la mamá de Luis.
    SÉ FELIZ y aprovecha todos estos momentos para hacer lo que más te apetezca.
    Por último decirte que siento no haber estado más en contacto contigo estos dos últimos meses debido a mi trabajo con la Asociación de FQ, pero que sepas que sigues siendo una gran amiga y que ya hace casi un año de nuestra amistad.
    Eres grande y un ejemplo para mucha gente como yo.Te mereces lo mejor.Has sufrido mucho, pero ahora que estás de vuelta y con optimismo te deseo que la enfermedad te de un descanso por mucho tiempo y puedas hacer muchas cosas por tí misma, de las que hace unos meses ni siquiera hubieras imaginado.
    UN BESO de tu AMIGO .

  2. Hey Dani, i just read this post. now i know where you had disappeared to all those times.Though that was very difficult & painful to read, I thank you so much for sharing it with us. I sincerely wish that a cure is found soon and that the scientific community at large, not just in Germany, will contribute soon enough to it. My prayers are with you, hermosa alma. 🙂

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