CF AND DAMAGED KIDNEYS (scared)

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anonymous

New member
Thank you everybody...
I am reading all your e-mails and i am taking a lot of courage from them.Thank you.
My news are that i am talking to a doctor in CF center in Italy (via e-mail) i will send to him my files and if possible a trip to Italy.There is no CF center in Greece.Every night i am on CAPD for 8 hours.
I have all the LOVE from my parents-relatives, and with this power of love and God i ll keep trying ,and fighting for life...
Thank you all
Good luck to all of us
Olympus
 
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anonymous

New member
Hi again
All this days i am searching for CFers with kidney's failure and i found that cfer's can have acute renal failure.(from medication)My doctor's told me that i have end-stage renal failure.
Is this the world's first case or is it wrong diagnosis?I am allready on APD (automatic peritoneal dialysis). End stage renal failure treatment???
I am so confused... and the worst thing is that the hospital i am going for my renal failure has no CF doctor.
Olympus
 
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kybert

New member
im pretty sure there are hundreds of cf'ers who had or have kidney failure. as well as medications causing renal failure [chronic and acute] you might also be gentically prone to it or have an underlying disease that causes kidney damage. i hope you make that trip to italy! have you ever thought about writing to someone with authority about starting a cf centre?
 
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anonymous

New member
20/10/2004
Just returned from a CF doctor?! in Thessaloniki.He told me that kidney's transplant is high risk for a CF patient and the best thing to do is just wait to die after few years.
Doctors advice......
Olympus
 
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anonymous

New member
20/10/2004
Just returned from a CF doctor?! in Thessaloniki.He told me that kidney's transplant is high risk for a CF patient and the best thing to do is just wait to die after few years.
Doctors advice......
Olympus
 
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kybert

New member
cf patients get all sorts of transplants, not just lungs, and they do just fine. sure we have a high risk in operations, but its not as high as people think. id ignore that doctor. thats really mean of him to say that. if kidney transplants werent worth it, lung transplants wouldnt be either. but thats definately not the case is it. is your transplant still scheduled for next year?
 
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kybert

New member
cf patients get all sorts of transplants, not just lungs, and they do just fine. sure we have a high risk in operations, but its not as high as people think. id ignore that doctor. thats really mean of him to say that. if kidney transplants werent worth it, lung transplants wouldnt be either. but thats definately not the case is it. is your transplant still scheduled for next year?
 
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anonymous

New member
Hi Kylie
The doctor who is responsible for the kidney's from the first time said that transplant is our next step.Because i am young and etc transplant is the solution.But she told me that i must talk to my cf doctor to keep me in good condition untill summer.I MUST BE IN MY BEST CONDITION TO PROCEED IN KIDNEY'S TRANSPLANT.and only the cf doctor can do it.
The cf doctor says that if a cf patient is alive after 20 y/o must be happy and do nothing to improve his life ,or fight for his life.You must stop dreaming, you must stop trying,you must stop living.
THAT'S MADE ME FROM THE FIRST TIME SCREAMING FOR HELP TO THE WORLD WITH MY E-MAIL'S.
I see in other countries the organizations, the cf centers, the new treatments,the battle for wining the life, and my DOCTOR tell's me there is no hope for me......
I'LL NEVER STOP FIGHTING FOR MY LIFE.....I WILL NEVER STOP DREAMING A HEALTHY FULL OF LOVE LIFE.
I JUST NEED A REALY GOOD DOCTOR (HUMAN FIRST OF ALL) WHO WANT'S AND KNOWS.
MY TIME IS RUNNING OUT AND I AM LOOKING EVERYWHERE FOR A LIGHT OF HOPE.

A BOTTLE IN THE BIG SEA......ASKING FOR HELP......
 
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anonymous

New member
Hi Kylie
The doctor who is responsible for the kidney's from the first time said that transplant is our next step.Because i am young and etc transplant is the solution.But she told me that i must talk to my cf doctor to keep me in good condition untill summer.I MUST BE IN MY BEST CONDITION TO PROCEED IN KIDNEY'S TRANSPLANT.and only the cf doctor can do it.
The cf doctor says that if a cf patient is alive after 20 y/o must be happy and do nothing to improve his life ,or fight for his life.You must stop dreaming, you must stop trying,you must stop living.
THAT'S MADE ME FROM THE FIRST TIME SCREAMING FOR HELP TO THE WORLD WITH MY E-MAIL'S.
I see in other countries the organizations, the cf centers, the new treatments,the battle for wining the life, and my DOCTOR tell's me there is no hope for me......
I'LL NEVER STOP FIGHTING FOR MY LIFE.....I WILL NEVER STOP DREAMING A HEALTHY FULL OF LOVE LIFE.
I JUST NEED A REALY GOOD DOCTOR (HUMAN FIRST OF ALL) WHO WANT'S AND KNOWS.
MY TIME IS RUNNING OUT AND I AM LOOKING EVERYWHERE FOR A LIGHT OF HOPE.

A BOTTLE IN THE BIG SEA......ASKING FOR HELP......
 
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Diane

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>20/10/2004

Just returned from a CF doctor?! in Thessaloniki.He told me that kidney's transplant is high risk for a CF patient and the best thing to do is just wait to die after few years.

Doctors advice......

Olympus<hr></blockquote>

The doctor that told you this is a jackass<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
i havent read all of this post but have read some of it and im wondering where do you live? maybe you need to find a way to go to a country where you can be helped better than this. I would not want a doctor that tells me tojust sit and wait to die, to be in charge of my care. Your situation needs more serious help than that kind of stupid advice. ( lets face it, that is STUPID advice). I feel so bad for you, reading your pleas for help, i wish there was something i could do. Keep in mind we are all behind you and wish you well. Ill keep you in my prayers <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Diane 39 / cf / diabetes / b.cepacia
 
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Diane

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>20/10/2004

Just returned from a CF doctor?! in Thessaloniki.He told me that kidney's transplant is high risk for a CF patient and the best thing to do is just wait to die after few years.

Doctors advice......

Olympus<hr></blockquote>

The doctor that told you this is a jackass<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
i havent read all of this post but have read some of it and im wondering where do you live? maybe you need to find a way to go to a country where you can be helped better than this. I would not want a doctor that tells me tojust sit and wait to die, to be in charge of my care. Your situation needs more serious help than that kind of stupid advice. ( lets face it, that is STUPID advice). I feel so bad for you, reading your pleas for help, i wish there was something i could do. Keep in mind we are all behind you and wish you well. Ill keep you in my prayers <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Diane 39 / cf / diabetes / b.cepacia
 
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anonymous

New member
Hi olympus,

Can u get urself out of ur country because ur cf doctor sounds very much like a dunk. Its horrible how he reacts to the problem. this world is crazy...
 
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anonymous

New member
Hi olympus,

Can u get urself out of ur country because ur cf doctor sounds very much like a dunk. Its horrible how he reacts to the problem. this world is crazy...
 
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kybert

New member
goodness gracious if a doc said that to me olympus id tell em to stick it where the sun dont shine! you know you can go against your cf docs advice and get the transplant. if the cf doc is that bad then any doctor can look after you. perhaps the original doc can get advice from other countries on how to look after you. apart from that i wouldnt know what to do apart from get out of greece! <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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kybert

New member
goodness gracious if a doc said that to me olympus id tell em to stick it where the sun dont shine! you know you can go against your cf docs advice and get the transplant. if the cf doc is that bad then any doctor can look after you. perhaps the original doc can get advice from other countries on how to look after you. apart from that i wouldnt know what to do apart from get out of greece! <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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anonymous

New member
Hello everybody...
I spoke all this days with many doctors here in Greece about my problems.I told them one question....is it possible a cf patient to have kidney's transplant? do they had any other patients with the same problem before me? what is the best for me to do?
All this days i took no clear answers.

For sure i am the first in Greece with CF and renal failure (problem 1)

I NEED YOUR HELP. PLEASE ASK YOUR DOCTORS IF THEY HAD BEFORE ANY CF PATIENT WITH END STAGE RENAL FAILURE?
 
A

anonymous

New member
Hello everybody...
I spoke all this days with many doctors here in Greece about my problems.I told them one question....is it possible a cf patient to have kidney's transplant? do they had any other patients with the same problem before me? what is the best for me to do?
All this days i took no clear answers.

For sure i am the first in Greece with CF and renal failure (problem 1)

I NEED YOUR HELP. PLEASE ASK YOUR DOCTORS IF THEY HAD BEFORE ANY CF PATIENT WITH END STAGE RENAL FAILURE?
 
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