The infection is back
October 17, 2012
My last post was a while ago. Meanwhile many things happened, that i would love to tell you guys. First i wanna tell about the time in hospital. i got a new roommate, she was 82 years old, she had a stroke too and was also paralyzed on the left side. she was in bed most of the time, but it was ok, she didnt bother me because she was quiet almost all the time. After 5 days with her in a room, i had to move to another care unit. The new room had no oxygen and i had to organize it myself. i was really mad- i mean how can you put an oxygen patient into a room without oxygen… They finally gave me a tank, but this tank was only up to 6 liters of oxygen. i went home for the weekend, and luis and me stayed in the new apartment. He painted it beautifully. When i came back to hospital on sunday i was short of breath and needed more than 6 liters of oxygen, the nurses went crazy because they didn´t know what to do. In the end they turned my portable oxygen on and i had to put 2 tubes at the same time into my nose. Of course my nose hurt like crazy and bleeded but i had no choice, because they hadnt organized a tank that can go up to 12 liters or more. In this night i had to get up every 2 hours to fill the portable oxygen. On the next morning i was very tired and really mad and angry. I had told them 3 times a day that i need a high-flow-tank that could give me 8 liters of oxygen or maybe even more. In the late morning the oxygen company finally showed up and brought the tank that i needed so urgently. The next few days were a little boring. On Thursday, Luis couldnt come to visit me because he was moving all our (mostly my) stuff to the new apartment. So i was bored and did a silk paint for Luis´niece. On Friday morning I was allowed to leave hospital. When I had breakfast, Luis already showed up to take me home. He helped me to get all my stuff together. Oh my god, you have no idea how many things you have in hospital when you had been there for 3 months. That was really incredible. I was so happy to leave hospital. The new roommate i had on the new care unit was nice and did not snore. The only problem was that she went to sleeep at 6pm in the evening. So every day I couldn´t talk on the phone or watchTV after 6pm. I wasn´t even allowed to read because of the light. I was watching DVDs with my Computer but i was still mad because i could not even watch the news because here they are given at 7 or 8pm- but not before 6. It was really messed up. I felt like a little kid that is not allowed to watch TV in th evening. In the late morning I finally left hospital after 3 not so nice months. I felt so great.Finally nobody. that tells me when to eat or what. When to go to bed. When to take a shower. Finally some privacy, the opportunity to be alone whenever i want. Luis and me just relaxed the rest of the day. On Saturday my mum and her husband joined us for breakfast and afterwards i went to the hairdresser to get my hair cut really short. It looks really different than before but the long hair was almost impossible to handle with long hair. I couldnt even do a pony tail anymore. Washing, drying and brushing was so hard with one hand and-it is just hair- if it doesnt look good it will grow again.
And i knew that Luis likes short hair, so i just hoped he would like my new hairstyle too. And he said he loved it. On Monday we went to some offices where we had to go. On Tuesday we did not have much to do and on Wednesday my therapy started. I have to go there every morning around 7.30am and in the afternoon I get back home. Usually i am very exhausted then. All this therapy is still very much for me but I like that i am starting to move again. On Wednesday evening I went to a hospital close to my home to get a check up MRI done. Thursday i went to the therapy and afterwards Luis and me relaxed and cuddled. I missed him so bad when I was in hospital, so now i cannot get enough of his hugs and kisses. On the weekend my mum and sister visited us and helped me to unpack all my boxes with the stuff that we moved. I was fucked up after a very short time. I felt tired and had an incredible back pain. I already felt sick on friday, I didnt go to the therapy that day. It wasnt anything serious, just a sore throat, a cough (more than usually) and my mucus started to get very thick and hard. I thought if I would rest on Friday and drink lots of tea it would go away by itself, but at the weekend it became worse. My throat hurt like crazy, I started to feel pain and my lungs, my nose was closed and i had breathing problems, a headache and a little fever. On monday i went to my therapy, I felt better, just had a little fever. On Tuesday we werr supposed to get Wifi and a phone connection. But the technican guy didnt show up. Now we are still without Internet. Im glad i have my phone and my ipad but it i just not the same. Then yesterday, on Tuesday, i called the hospital to ask for the MRI results. They told me that they could see an infection in my back, that was around 9.45am. Then i had to go to a Fango therapy, where they put hot fango on your back to relax the muscles. So I had time to think of what I just heard. I called my mum, texted my dad and my sister and cried like crazy. When the therapist came in to look after me, she saw my tears and how upset I was. She called the doctor, and the doctor came and talked to me. She said that I should go home to calm down and to stay homme till next week and contact my hospital to ask for a treatment. We didnt know if I still can do physio therapy and the doc noticed that i cannot concentrate on my therapy anyways. The return of the infection will have serious consequences for me. The infection came back as soon as the Antibiotics were stopped. That means that from now on the infection is considered as a chronic infection and with this diagnosis nobody will ever transplant me worldwide. Because even when the infection disappears again as soon as the Antibiotiics will be stopped. After a transplant i would have to take immunsupressive medication, so the little back infection would grow quickly and infect the whole body. Most probably i would die of it. But without new lungs i will have to die too. Yesterday in the evening my mum came to visit me. I had the wish to bake Christmas Cookies together, like we did when i was a little kid.
I enjoyed spending time with my mum but my back caused huge pain although i take lots of morphin already. The pain scares me too. I dont want to be in pain for the rest of my most probably short life. I can feel my breath getting shorter every month. i felt it last weekend. This little cold made me feel so incredibly sick and short of breath. It scares me because i feel that most probably the doctors are right with their prognosis that the next bad cold or flu will be my end. i am not ready to die yet. I am not really scared, it is just that I still wanted to do so many things, to see so many places in the world, i wanted to make a difference by teaching people about cf and telling them how important organ donation is. I will use the time i have left for that. The sad thing is that only famous people reach many persons. I am just a nobody. But i really want to change something. Earlier this month, a 15 year old girl called Lucy died of cf. I knew her from Facebook and Twitter and she was one of the strongest fighters i ever met. But in the end, cf always wins. And that is what has to change. We need more organs that could be donated to the patients, we need more money for research to find a cure. I want my life to have a sense, a meaning. I do not want to die, knowing that my life was just wasted time. I want to do something that counts.
I still have more than 3 weeks of therapy left but i start to ask myself if i could use this time better than with training an arm that i wont need when i am dead. But i will not give up. I will keep fighting and stay strong as long as i can. I cannot do this to my family and friends. I know that many people would cry and be really depressed if i died now. I cant go. Not yet. I will still try to get lungs although I know my chances are not good. But I am not ready to die yet.