33 – transplant thoughts

June 29, 2012

The last ten days were horrible. Last week I had dangerously high fever and serious breathing problems. I needed 12 liters of oxygen around the clock and wasn’t able to get out of my bed at all. I felt like I would die and was really afraid.
I couldn’t breathe, I couldn’t eat, I was throwing up all the time and the pain I had was incredible. I was really scared that I might not recover again.
On Monday, 5 days ago, I felt a little better. I had an appointment in a transplant hospital 5 hours away from home. Me and my dad went there on Monday and met the transplant doctors on Tuesday morning.
I was in pain because of the long ride. I went to bed early but I couldn’t sleep. I was very nervous and my thoughts kept me up all night.
I knew that my life depends on this appointment. Last week showed me again that my life won’t be very long if I don’t get new lungs. I felt so lost, alone, worried, scared… Sometimes I wish I could run away. I wish I could a break for a little while.
On tuesday morning my dad and me met the doctors. Three doctors were sitting with me in a little office. They asked me so many questions.
My health worried them. They said it would be a huge risk to give me new lungs, but without lungs I won’t live very long. They had many reasons not to transplant me: my heart, my weight, my bones etc. but they said that they want to try it anyways.
But the problem is the infection in my spine. I have pseudomonas in my back. I take 5 different IV antibiotics for 5 months now but it doesn’t get better.
The doctors said they would put me on the list as soon as my back heals, but usually infections like this won’t heal.
They will check my back in two or three weeks. If the infection is gone I will be put on the waiting list for new lungs. If not, I will die most probably.
They also said that my surviving chances with new lungs are not as high as usually. They say it’s a high risk to transplant me and that we have to know that it could kill me.
I was happy that they maybe give me a chance but I was also worried about the infection.
I still can feel the infection in my bone. I know it’s still there and I feel desperate about it. I just don’t know what to do anymore.
I take so many meds that the side effects are already terrible. I throw up several times a day. I always have a headache, I am incredibly sleepy and weak. I am always exhausted and even the little things are hard for me.
I don’t even remember the last time I was able to go to the bakery which is only a 4 minutes walk. I can’t be without my oxygen, I need 8 liters around the clock.
All this worries me. I feel my body getting weaker every week. Breathing gets harder every week. Eating is a daily challenge.
On Wednesday I felt better during the day. I really needed those few hours. I final,y had a little break. I drove in my car, I met friends at my studio, I had long conversations,I finally could leave my bed.
In the evening I felt incredibly tired and at night I got so sick that i needed an ambulance and an emergency doctor. But at least I had the few hours to recover.
The night was horrible. I was so tired that I fell asleep while brushing my teeth, while drinking water, while taking meds. But I couldn’t really sleep because I woke up e wry few minutes because I got worse so quickly. Again I got very scared.
I didn’t want to go to hospital. So the ambulance and the doctor left.
On Thursday morning I had to go to my therapy, but I couldnt do all my treatments. I was throwing up, I couldn’t breathe and my heart was acting up. The pain was incredible.
So I went home, back to bed.
Today I tried to get at least out of bed. But it didn’t work.
The infection in my back doesn’t let me move at all. It causes horrible pain. My lungs are full of mucus and even drinking some water gets me out of breath.
It is very hot here, all my friends are going to parties, so I am alone all day.
I feel useless and unnecessary. I wish I could work or go out…or at least do my housework. But I have trouble taking a shower alone, moving hurts so much.
My health gets worse so fast that it really worries me. It is a horrible feeling to get up and to feel that you’re closer to death again. And you know there is nothing you can do about it. You feel it coming but you can’t run away. You can just sit and hope. It drives me crazy.
I want new lungs so bad. I want to live, I want to survive. I want to breathe. But there is nothing I can do to make it happen. My back has to heal but I can just wait.
I am alone most of the time. I barely talk to people. Everybody wants to talk about my health. I sometimes just don’t want to talk and hear about it.
I am dreaming most of the time. I wish I could live the life that I had before. I want to dance, to move, to meet friends. I want to travel, to swim, to do sports.
I dont want to be in bed all day. It is killing me.
I feel so mentally exhausted, sad, depressed. Why can’t I just breathe… Why can’t I just live…

6 Responses to “33 – transplant thoughts”

  1. Lola Says:

    Darling, I know you can survive.
    You’re so strong, and I’m pretty sure you’ll be so much better really soon.
    You have all my prayers. And don’t forget that if you need to talk, about whatever (not about your health if you don’t want to), I’m in Twitter and Facebook.
    Stay Strong, Dani. I believe in you. EVERYONE believes in you.
    Love you so much!
    -Lola.

  2. Nathalye Says:

    Hun at least you have God in your heart you can beat this. Like how god beat the devil. You area you WILL be a surviver. I can feel you. I know you’ll get better eveyday. It might seem like it is getting worst but it’s not. Just believe and pray to god. He is our way out of everything that’s important.
    Love You and bless your weak body!

    -Nathalye

  3. Jessi Says:

    Hey Dani, sorry about all your struggles lately. Have you tried using a BiPap machine at night? It might help you sleep. Not sure if you know what it is, but it really helps. I have 1. It helps breathe for me while I sleep by forcing oxygen in my lungs and helping pull oxyegn out so Carbon Dioxide doesn’t build up in my body. Hope your back infection goes away. Fingerscrossed for you!

  4. ziaboga Says:

    Hi dani, I understand you’re sad and hopeless, because you are very weak, but you have to fight.I know you’re too much time fighting, so you can’t give up now.I want give you strength,and hopeful.fight is the only way for surviving, and you know it.I wish and I think you’ll be transplanted finally.Hugs and kisses of your friend, always with you.

  5. Dominic :) Says:

    Dani! Your a warrior!, you have to fight the back infection!, CF, you will live longer! I pray that the they will get you the new lungs & everything’s successful

  6. alwaysHope Says:

    Dani, I just wanted to let you know you are not alone. I was there, I came into the hospital with another lung infection. I was running on only 26% lung function on a good day and when I got to the clinic I was at 18%. I was admitted right away and placed on my usual cocktail of IVs and pills. Unfortunately after 2 weeks each PFT taken showed more decline in lung function. I was at 15% when my CF team came in had the big talk. My family was asked to come down to discuss what was going to happen next. We were told they have done everything they can and things are not improving and I would not be going home, unless I got the transplant I had been waiting for. I was on 10 liters of oxygen at rest, losing weight and everything was a struggle. I remember showers wearing me out to the point of needing an hour nap afterwards. I was told I would be moved from the room I had spent 2 weeks into a bigger room where I would spend the rest of my time. My wife had came for the weekend to keep me company and the morning of the day she was going to head back we started making all the funeral plans. During this I started to think about leaving my 3 & 1/2 year old triplets and all that I would miss and how much I loved them. I cried for a bit and made it through the rest of what needed to be done. Later that afternoon I was moved to the bigger room and we got things situated and my wife was getting ready for the 3 hour drive home.

    Then there was knock on my door. It was my primary Doctor. He asked me a couple of routine questions and then said “Well, I have some good news.” I simply said “Ok….” He then proceeded to tell me they had found lungs for me and I would be transplanted later that evening or early the next morning. Needless to say I called all my family and they rushed 4 hours to the hospital as I began my steps to transplant. I wasn’t to hopeful as I had been through this all before, helicopter ride and all. Only the previous time I made to the O.R. and it was called off just before they put me under.

    I am happy to say that this time the lungs were good and I was transplanted at 3 AM June 4th, 2012. Today is exactly 1 month with my new lungs. Without them I didn’t have very long left and I was scared, I cried, I was super frustrated that I couldn’t just breath and LIVE!

    I guess I just wanted you to know even when things look gloomiest miracles do happen and I make sure to keep you in my thoughts and prayers you are able to get the lungs you so desperately need. I wish you the best of luck and hope you can find the strength to fight on as I know it can be so hard to not just give up!


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