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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November 6, 2013

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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.