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Author Topic: Can someone help me with this...  (Read 24877 times)
kellyt
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« on: February 21, 2008, 09:36:31 AM »

My brother just called from the hospital (2nd day of two day donor testing).  He completed his 24-hr urine collection and the nurse came in and told him they "found an abnormality" in his urine.  He asked what it was, but didn't feel as if he got an answer that he understood.  Not that they weren't telling him, but he just didn't understand the lingo.  Now, apparently they said "it's not real bad and we're still going to do the CT of your kidneys, but we're going to send you home with orders to do some more urine samples/testing".

Has anyone's donor experienced this before?  What could the "abnormality" be that isn't "real bad"?  My brother didn't mention protein or creatinine or anything like that.

Help!!!!!!!!!! :(
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Ang
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« Reply #1 on: February 21, 2008, 02:58:07 PM »

contact  the  hospital,  try  spaek  to  the  relevant  people,  asking  them  to  explain  the  problem  to  you  in  plain  english.
hope  it all  works  out  for  you :2thumbsup;
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live  life  to  the  full  and you won't  die  wondering
Joe Paul
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« Reply #2 on: February 21, 2008, 03:12:52 PM »

Since they want to do more testing with the urine, you probably wont get a clear answer till they are sure about whatever they found.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
kellyt
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« Reply #3 on: February 21, 2008, 03:28:14 PM »

They won't tell me anything anyway.  I'm not the patient.  Anything told to me has to be told to me by my brother, the donor.  I did find out from him, however, that it's his protein.  Apparently, his protein is 171 and their cut-off is 150.  They will do the test up to three times before making a decision.  He'll do his 2nd 24-hr urine on Sunday.  I hope for both our sakes it's nothing serious, or potentially serious.

Thanks.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Psim
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« Reply #4 on: February 22, 2008, 10:52:59 AM »

I sure hope it was just a test blip and that the next tests show all is well. Thinking of you both and praying for a good outcome.
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kidney4traci
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« Reply #5 on: February 23, 2008, 01:18:54 PM »

Kelly any news yet?  Hope everything turns out ok.....
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
okarol
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« Reply #6 on: February 23, 2008, 01:26:54 PM »

Kelly, I was glad to see you posted your question on livingdonorsonline.org - I hope it was helpful.

I pray the test is repeated and all is good.  :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
donnia
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me and my donor Joyce

« Reply #7 on: February 24, 2008, 04:30:47 AM »

Any news kelly?
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
kellyt
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« Reply #8 on: February 24, 2008, 06:58:15 PM »

I'm not sure if my brother did the test today or if he is going to do it tomorrow.  When I talked to him Saturday night he was at a friends birthday bash and I think he said he had a few beers.  Unless he stopped drinking early I think he'll do the 24 hr collection tomorrow.  I hope so, because the committee meets on Wednesday.  I don't want to have to wait another two weeks!  This is nerve racking!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
kellyt
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« Reply #9 on: February 27, 2008, 02:36:50 PM »

They declined him.  The only words I can say outloud are bad ones.  I haven't heard from the co-ordinator, yet.  I've just talked to my brother.  He's upset, too.  What do ya do...

Does anyone know if they will test a living donor who hasn't quit smoking yet?  Or will they wait until he has stopped for at least three months to test him?  Because my other brother is ready to go, but he didn't quit smoking LIKE I TOLD HIM IN JANUARY!  I hate to have to tell him "no", but I don't want to waste another three months.

I feel sick.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
kidney4traci
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« Reply #10 on: February 27, 2008, 03:01:03 PM »

I am so sorry KellyT, although I know words are just words and I wish I could just give you a hug!   :grouphug; :grouphug; :grouphug; 
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
xtrememoosetrax
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« Reply #11 on: February 27, 2008, 03:27:48 PM »

So sorry to hear this, Kelly. What a terrible letdown. As far as brother #2 is concerned, somebody over on LDO may well know the answer to your question about smoking, so you might want to ask there, too. Again, I'm very sorry about today's news. Hang in there, okay?  :grouphug;
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Living donor to friend via 3-way paired exchange on July 30, 2008.

www.paireddonation.org
www.caringbridge.org/visit/marthahansen
kimcanada
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« Reply #12 on: February 27, 2008, 03:30:59 PM »

Hi Kelly, my sister was disqualified for the very same reason, I am so sorry to hear that this has happened to you.  Please know that you are in my thoughts.  I am not to sure about the not smoking thing. But my fingers are firmly crossed that your other brother gets moving on those tests.

Kim :canadaflag;
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paris
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« Reply #13 on: February 27, 2008, 04:59:47 PM »

Kelly, it is so hard to hear the news when they reject someone.  I know your brother is upset too.  I remember being stunned the first time a donor was rejected.  It is very hard not to be depressed---get your other brother on the ball and tested.  It is such an emotional road and I hope the next person tested is the perfect match for you. :cuddle;
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MyssAnne
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« Reply #14 on: February 27, 2008, 05:15:02 PM »

I'm sorry. What blow that is, to have your hopes rasied, then brought down, so quickly.

 :cuddle; :cuddle; :cuddle;
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okarol
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« Reply #15 on: February 27, 2008, 05:25:02 PM »

I know that people who were smoker's that have donated kidneys. At most transplant centers it's the recipient who they say cannot smoke.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Laurie
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« Reply #16 on: February 27, 2008, 06:33:10 PM »

I'm sorry to hear this Kelly.  I hope your other brother gets tested and is a perfect match for you :grouphug;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
kellyt
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« Reply #17 on: February 27, 2008, 07:29:49 PM »

I know that people who were smoker's that have donated kidneys. At most transplant centers it's the recipient who they say cannot smoke.

My neph. told me that he would prefer the donor be smoke-free for at least six months.  The transplant coordinator said they prefer three months.  I was also told that it's more of a "recovery" thing for the smoker.  Meaning, if they have or get the smokers cough during their recovery it can be really painful or damaging to the incision.  Something like that.  My brother had a complete (and I mean complete.  there wasn't a test his doctor didn't do) last year when we told him it was getting close to transplant time.  As far as that physcal goes (EKG, chest x-ray, colonoscopy, lab work, EVERYTHING) he is in great physical health.  But he smokes.   ?????????????????????????????

I am extremely down about this.  It pisses me off that my first brother tested is so damn healthy otherwise.  I've put a call into my neph's office to see what his thoughts are.  There are two other hospitals in San Antonio that my insurance accepts.  I'm going to see what he thinks about changing.  But only if my brother's health is not in any danger.  I have no idea.  I'm being selfish.  Thanks for listening and responding.  I'm terrified at the thought of dialysis and now it seems it will definitely happen.   :'(
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Mimi
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« Reply #18 on: February 27, 2008, 10:27:19 PM »

I'm so sorry to hear this,sweetie.  I hope things work out with your other brother.

Love, Mimi
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willieandwinnie
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« Reply #19 on: February 28, 2008, 03:56:21 AM »

:grouphug; kellyt, I'm so sorry about your brother not being able to donate. The transplant center has guidelines that they must follow for donors and spilling protein is at the top of the list. We were told that it is a sign of kidney problems. Your brother needs to take care of himself and probably see a Neph. On the subject of your other brother, our center didn't say anything to me about smoking when I wanted to donate to my husband. Like okarol said, every center seems to be different. I'd be getting your other brother tested as soon as you can. Keep us posted, we all will keep the prayers coming.
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rose1999
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« Reply #20 on: February 28, 2008, 05:41:22 AM »

So sad for you and your brother, I hope your other brother can be considered, it must surely also depend on how much he has smoked and what state his lungs etc are in?  Of course you won't put him at risk but hopefully he can get tested and will prove a match.  Thinking of all of you.  :grouphug;
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Psim
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« Reply #21 on: February 28, 2008, 07:16:55 AM »

What a disappointment! Words just can't cover it.  :grouphug; Hope it works out with your other brother -- let us know, ok?
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vandie
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« Reply #22 on: February 28, 2008, 07:26:07 AM »

They declined him.  The only words I can say outloud are bad ones.  I haven't heard from the co-ordinator, yet.  I've just talked to my brother.  He's upset, too.  What do ya do...

Does anyone know if they will test a living donor who hasn't quit smoking yet?  Or will they wait until he has stopped for at least three months to test him?  Because my other brother is ready to go, but he didn't quit smoking LIKE I TOLD HIM IN JANUARY!  I hate to have to tell him "no", but I don't want to waste another three months.

I feel sick.
My potential donor was a smoker, and she went through all of the testing.  She was disqualified for other reasons after all of the testing was done.
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Life is the journey, not the destination.
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I received a kidney transplant on August 4, 2007.
kellyt
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« Reply #23 on: February 28, 2008, 11:56:17 AM »

Thanks again, everyone.

I received a call from my neph today and he said that my brother should definitely be seen by a nephrologist and have a kidney biopsy performed.  If that comes back negative then we may be able to "fight" the ruling.  ???  I'm still waiting for my coordinator to call me so that I can ask what my next step is.  My 2nd brother, as well as my husband, is ready to begin testing ASAP.  If I don't hear from her today I'm calling her tomorrow.  I'm a little P.O.'d that she hasn't called me yet to tell me they rejected my brother.

Do we as recipients ask too much?   :banghead;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
willieandwinnie
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« Reply #24 on: February 28, 2008, 03:30:43 PM »

kellyt  :cuddle; I know exactly what you are talking about with these coordinators. I called ours last Thursday about my husbands labs and medication changes they were talking about. She called this afternoon. 1 week  :banghead; unbelievable. Call her first thing tomorrow morning and then again in the afternoon if you haven't heard from her. It is Friday after all, and they want out of there quick. I hop you get good news.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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