is anyone else going through this ?

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CFgirlie

New member
Hi my name is Emily and i'm 14 with cf ... i havent' been on in a while ... been busy and stuff ...
I just wanted to see if anyone else has gone through or is going through what i am right now ... heres whats going on ...
My sister is 19 and has cf too ... about 4 years ago she got a lung transplant ... she was doing ok for a couple of years ... but this last year or so .. shes been getting worse ... she found out that she had rejection .. (her body was rejecting her lungs) ... and she's been on oxygen ... and they have done bronchs and stuff .. but they just couldn't find a way to treat it ... she's been in and out of the hospital .. sometimes we are in together and stuff .. .but this past month she went in cuz she was really doing bad .. she was on 4 or 5 liters of oxygen ... she went to the regular floor ... we thought she was getting better ... but then on her birthday she was really a mess ... her C0 2 was really high ... so they put her down in ICU ... now shes been there for almost a week or so ... and just two days ago they had to intebate her ... (the breathing tube) now i am really scared ... she's on the list again for another transplant .. but she has to be healthy enough to get the transplant ... since she got intebated she got moved up to #1 ... so i guess that is good ... i just hope she stays well enough to get her new lungs ... i am scared ... my sister and i have been really close all our lives ... i miss her being my big sister ... she's a real fighter so i 'll know she will pull through ... we've been close cuz we both have cf .. so we like know what eachother are going through ...

sorry to like vent to you guys ... i just really need to talk to someone about it ... and get my feelings out ... its easier on the computer .. .cuz then people don't see you cry .. .but if anyone has gone through this or ... even if they want to say anything ... i would greatly appreciate it ... !
 
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anonymous

New member
Hi Emily, Im so sorry to hear about your sister, hopefully things will pick up soon..and she'll get her new transplant. Did she get a good 2 or 3 years out of the new lungs? Im thinking of you,

Shamrock, x
 
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cfmomma

New member
I'm your sister is struggling so much. It must be hard for you to watch and pretty scary. You are not alone and were all here to support you and to "let yourself vent". Crying is much easier to do when people are not watching, you must get your get feelings out and we will listen and not judge. Hang in there.
 
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intheIMAGEofHim

New member
Hey Emily, just wanted to let you know that I have been thought some really hard stuff...
I had to have a liver transplant and it was good but then, because of my anti rejection I got a Really terrible cough I was in the hospital for 3 months during the summer. The Doctors had no idea what was going on with me and every day was a new surgery. Then they found out what is was...it was Lymphoma a type of cancer it was growing in my lungs. It was pretty hard to deal with and for a long time I was so sick I could not do anything and I really missed my friends. But I got through it the lymphoma is so small now and it's not growing anymore. I still have to deal with a lot as I'm sure you know as well as everyone else, I hope this is encouraging to you and I will keep you and your sister in my thoughts & prayers. <img src="i/expressions/rose.gif" border="0">
 
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CFgirlie

New member
Hey you guys .. i want to thank you for your support ... intheIMAGEofhim ... my sister had lymphoma in her lungs too .. they gave her chemo therapy ... i don't know how long ago it was .. but .. yeah ... thats how my sister was .. she was trying to go to college and she couldn't really go ... cuz she was so sick ...
my sister is the same now .. but i'll keep you guys updated ! ... if anyone else wants to respond please do !
 
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buggygurl321

New member
Just wanted to let you know that my family has your family in our prayers. It is a very hard time that all of you are going through but the love you have for your sister will surely give her strength I bet she didn't even know she had. It is hard to try and stay strong while watching someone you love go through something so hard but hang in there kiddo. Vent anytime. That's why we are all here. Take good care of you, Buggygurls mom, Gwen
 
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anonymous

New member
CFgirlie, my thoughts and prayers are with your family and you during this time. I wish I could say some magic words to make you feel better about what is going on, but I can't so all I can do is let you know that there are people who care and are pulling for everything to work out for your sister. In the midst of all of this though, don't forget to take care of yourself. It may be a bit difficult but remember that you have needs as well. I will be thinking and praying for your sister, your family and for you. I hope for the best!

Julie (wife to Mark 24 w/CF)
 
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anonymous

New member
Dear Emily,

As a mom to three daughters, the youngest with CF, I know how much love sisters share. I'm very sorry that your family is going through this right now. I will pray for your sister and your family.

It's ok to cry, I have done the same thing, often at the computer. It is a healthy release.

Maria (mother of three daughters, the youngest, Samantha w/cf)
 
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purpleangel28282

New member
I can't say anything different than what all of these other caring people have, but I figure every post helps to give you strength and to know that there are so many people that care. I will pray for your sister and your family and you to continue to be strong and to keep yourself healthy. Sometimes when people we love get sick we tend to neglect our own needs, don't do that to yourself. And feel free to come and vent anytime, that's what the boards are for!
 
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anonymous

New member
I would like to say my families prayers are there for you and your family. I wish the best to your entire family and I am so sorry ya'll are going through this. God Bless
Kandi mother of Eric 12 w/cf
 
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CFgirlie

New member
I want to thank all of you for your prayers ... they have worked ... this morning at 4:30 we got the call from the hospital that they had lungs for my sister ... i was so happy ... now we have to switch our prayers that she will be strong enough to get through it ... and recover ... i really appreciate all your support ... i knew i could come here and find people that would listen ... i'll let you know more when i find out ! <img src="i/expressions/heart.gif" border="0">
 
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purpleangel28282

New member
I'm so glad that they have found some lungs for your sister. I will pray that she is able to make it through and recover without any problems.
 
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moonshynchik

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>moonshynchik</b></i><br>i have cf and i am 12 it is some times hard but if you would like to email me at moonshynchik@aol.com

<font color=white style="background-color: 3E3E3E;">Text</font ft><b>Text</b><img src="i/expressions/heart.gif" border="0">
 
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anonymous

New member
thanks everyone ... Jenn isn't fully recovered yet ... it's gonna take a while but at least we are headed in the right direction ... the most recent update i have is she finally got the breathing tube out ... so that is good ! ... but she isn't quite yet ready to breathe on her own .. so she is on a thing callled a bipap ... it forces her to breathe more and stuff ... i don't really know too much about it ... but i will keep you guys updated !
 
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