May 5, 2012

I haven’t written for ages…
Last Wednesday, they told me that I won’t get new lungs. The doctor was very cold and unfriendly. He only talked to me for a few minutes, like we just talked about something usual.
No word about how it will go on, no cheering up, no words of support. Just: we can’t help you, you will die. Bye.
No emotional reaction.
He said that a transplant would be a risk because of my unstable, weak bones and that I could die, so they give the lungs to somebody else.
When i said, that without a transplant I will die for sure, they told me, that they are not worried about me. They are worried about the organ. That the new lung would have been wasted if I die while or after the transplant.
I kind of expected this, but I was crying for 20 minutes anyways.
I started to manage contacts with other hospitals so I maybe could get a lung from another hospital, in another country.
Then I got up from bed although I was not allowed to. I took a shower. I hadn’t taken a shower for such a long time. It felt so good.
I practiced walking and the more I moved, the more I started to feel. The numbness was almost gone.
It was like the feet remembered what their Job is.
I knew, that my favorite singer Daddy Yankee was giving a concert not far from the hospital. I kmow him and the crew, so I called the Tourmanager and asked, if I could go there without a ticket, and that I need a place without crowd and fans because I am still very weak.
Everything was being organized and I left the hospital on my own responsibility for the consequences.
I spend 4 hours backstage with the crew and with Yankee. I needed to talk but Luis didn’t want to talk to me, so two crew members that are good friends of mine talked to me for a long time.

We had an endless conversation. About living and dying. About god. Hope. Giving up. Fight.
They were there for me and that helped me so much.
The concert was great and cheered me up a little.
When I was back in the hospital at nightway was still thinking but was moe emotionally stable than before.
I hoped Luis will take some time for me and talk to me. But he was rather watching TV and reading and when I sent him a message he started to Fight with me.
So I left him alone, sat in my bed and tried to handle the situation on my own without breaking down.
On Thursday my mother visted me. For her and the rest of the family all this is very hard. Luis still wasn’t talking to me about the situation.
On Friday, yesterday, he got mad because he didn’t know that I can walk again. But how should I have told him? K mentioned several times that I have to talk to him about important things. But he had better things to do.
I told him how much it hurts me, that he is leaving me alone when I need him the most. He said I was overreacting.
Later he said he couldn’t deal with the situation and said sorry, but he doesn’t understand that I can’t forget what happened just because he said sorry. I could forgive him that he didn’t want to talk. But not that he told me he is not talking to me because he wants to watch Tv. I can’t forgive him that he starts to fight with me to make me feel worst when im already down on my knees.
I decided, that I only want persons im my life, who are there for me also when I am really down and sick. Not only when they can have fun with me.
So Luis and I separated. I really hoped he would fight for me. And he would show me, that he wants to be with me even when my surviving chance is not very high.
But he didn’t. And I have no words for how hurt and sad i am.
He was the first person, that I really trusted. Uually i build walls, because when nobody knows my feelings, nobody can hurt me.
With Luis I didn’t have this fear that I could be hurt in my weakest moments. Unfortunately I didn’t have it.
Now I got the worst message of my life, and at the same time my hubby leaves me. And drops me like a piece of trash. Maybe my body is trash. But I am still a person. With feelings.
I could stand the lungs- news. But it’s very hard for me to stand all this at the same time. Knowing that I die- and being left alone, when I would need my man the most.
I will leave the hospital today. I want to see my family. My friends. My own bed. I want to decide about my days on my own.
I won’t give up, I will still try to get lungs somewhere else, even when the chances are very very low.
But I always have this incredible sadness inside my heart. Luis always promised. We would go through this together. He couldn’t imagine, that this would happen ever. He never thought I could die.
He can run away. Unfortunately, I cant. 😦


10 Responses to “26”

  1. ziaboga Says:

    Hola Daniela, entiendo tu enfado con los doctores por su frialdad y lo antipáticos que fueron contigo, en una situación tan importante.no entiendo como se puede decidir sobre la vida o la muerte de una persona de esa forma tan fría.Se nota que no son ellos los que se juegan la vida.Me alegro que fueras la concierto y pasaras un buen rato, y que tus piernas estuvieran mejor.Sin embargo me apena mucho lo de Luis y espero que podais hablar de vuestras cosas, y todo sea como antes.Me alegra que vayas a casa y estés con tu familia y como ya te he dicho intentaré ayudarte en lo que pueda.Es muy dificil , pero creo te mereces una oportunidad por toda tu lucha que debería tener un final feliz.
    Yo me considero tu amigo, y por ello hablaré con mi doctor a ver que posibilidades existen.
    Un abrazo fuerte
    jesus ureña

  2. Robin-thegriffin68 Says:

    Dani, I find it hard to know the words to say to you right now. I only know that my heart is breaking for you. I am so sorry that your life has had to be so hard lately. That doctor had no right to speak to you that way. he should be fired and lose his license. What an ass. And I don’t even know where to begin when it comes to Louis. I know it isn’t fair…maybe this is way of dealing with the news. I pray thats all it is and he comes to his senses. If he cant then you are definitely doing the right thing by surrounding yourself with positive thinking people. I wish I lived closer, but I dont so all I can do is read and listen to your feelings and thoughts. There are so.many people around the world that love you. Stay close to your family. Lean on then for support and comfort. Stay positive and continue to slowly get your body back into shape, but most importantly, take care of yourself. Im so glad we have had some time to start to get to know each other. You are such a strong young lady and I am a better person for knowing you. You can beat this. I know you can. Stay strong. Love you Dani.


  3. Taylor Brooke Says:

    This completely broke my heart, I know you probably don’t want to hear this but in my ppinion of he’s not goong to stay by your side when you need him the most- then he’s an idiot. And chances are, he will never forget that and it will haunt him forever. You an amazing person, i know you love him but don’t let his ignorance get you down<333 much love xx

  4. Marta Ruiz Says:

    I’m sorry to hear about your doctor. He doesn’t understand how people can feel without hope.
    I’m glad to hear that your legs are working again, and you went to the concert. At least, you’ve got something to cheer up.
    You don´t have to lose your faith, I’m sure you’ll find a new lungs at other hospital. You must keep looking for. I read that Jesus send your blog to a spanish program. I hope they help you a little. I watch that program sometimes.
    Remember, you must be strong, don´t lose your beauty smile… I hope everything can fix and you get a new lungs.

  5. Michael Giblin (@MG177) Says:

    I have no words for what you must be feeling emotionly Dani except to say I love you and im so glad Ive been able to share part of your life with you and become a friend. You mean so much to all of us! Friends Forever @MG177 Mike.

  6. Dearheart, you have touched so many lives, including mine – please remember that we who love you are with you even when you cannot see us! I am so sorry you’ve had to endure what you have, and especially the insensitivity by others these past few days. We are doing all we can to find a facility here in the states.In the meantime, time is precious to all of us, none of us know how or when our time will end, and I know it’s difficult but please don’t waste precious time on those who do not deserve it, instead, look for reasons to smile, enjoy the fragrance of flowers, feel the sun on your face, wiggle your toes in the grass, eat something truly delicious, decadent and with a million calories and fat grams! Listen to your favorite music with volume turned up so high everyone around you can barely stand it! Do what Dani likes to do best!

    This is your life, sweetheart, yours and yours alone. You have done so much with it and this is something you should be very proud of! Some people go through life just existing, like robots, going through the motions, rarely impacting other lives,waiting for life to happen to them. You are not one of these people, Dani – you are like a proud, brave and strong beautiful bird; soaring gracefully through your life, daring to look further than the horizon, daring to dream, hope, and love, amazing all of us who have been touched by you with your purity of soul, generosity, talent and strength! I am so happy to have met you and so proud to be your friend, forever! {{{I love you!!!!}}}}}}

  7. fuckuharut Says:

    Dani, to read this is heart breaking. I really don’t know what to tell you to make you feel better emotionally. As weird as what I’m going to write right might sound I can assure you is a REALITY. I write to you from the bottom of my heart.

    YOU are ahead of many people, we are ALL going to die when our mission in this world is completed, even if it’s not, all we need in order to die is to be alive, that’s all! now there’s a difference, many of us might not be able to say good bye to our dear ones, you will.

    Why do I think you are ahead besides what I have mentioned above? well, you appreciate the most simple and beautiful things in life, you are conscious on how valuable it is to tell the people that truly matter and care for you, the ones you love, how much you love them and appreciate them without taking them for granted, you are realizing by now that there are good people in this crazy world that DO CARE about you and your condition, you have taught many how precious being healthy is and not to take life for granted. On a personal note, YOU have taught me not to waste my time with people that I know for fact that don’t care about me and are only with me for the “fun” times. Also I have learned that I should spend my valuable time with the ones that LOVE ME and that I LOVE, to tell them in a regular basis how important they are to me. I’ve learned FROM YOU that there are still kind sweet loving people like YOU. The list of things I’ve learn in such a short period of time is endless…

    YOU are an angel that have opened the eyes of many, including my own. I could die tonight, or tomorrow, just like anyone else. Now, is sad to know there are people that think they are going to live forever and take for granted good people, good opportunities that are given to them, and things as simple as a beautiful sunset.

    Enjoy to the max the time you have by sharing with those people that you love and that love you back!. LAUGH, be crazy, do whatever you want and can do that fulfills you and puts a smile on your face. NO TIME for heart ache! the ones that should matter are the ones that come, not the ones that left you.
    Some people deal with pain in different ways, some people have the emotional strenght to deal with really hard situations, others get frustrated because they feel there’s nothing they can do to change the unchangeable, so they choose to run away…
    I really am thankful for knowing you, you are VERY special, and remember that we all have our own journey in life. Keep in touch.
    Sending you kisses, hugs, light and good energy always!
    Remember this one thing, like my brother says, “Nothing’s over till the fat lady sings”!! LOL. Life’s full of surprises;0). In the mean time keep us posted. MUUUUUACKS!!!!

  8. Jackie (Kristianas mom) Says:

    I am so sorry Dani. This is a very hard time to be seperated from someone you love. I hope your family and friends surround you with love and support. Praying for you always

  9. wilfred Says:

    i feel hurt inside to hear you talk like that no one decides your destiny only you and god hun i dont know you very well but im here for whatever you need much love for you and your family … and another thing i know luis and he will come around trust me god doesnt like ugly and luis knows what you are going thru im sorry to hear you guys are broken up but all wounds heal one way or another may god have you in his heart and spirits love always wil

  10. drmikeihs Says:

    My heart aches for you … but my spirit is with you. Always ready to listen and help in any way that I can.
    Dr. Mike

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