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Author Topic: First Donor Denied  (Read 2751 times)
Restorer
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« on: September 03, 2010, 08:14:29 PM »

UCLA sure didn't waste any time excluding my mom as a donor, on the basis of one of the medications she's taking. She told them she could change medications, and to take it to the committee, but they denied her too. I have another donor in process, but she won't be able to donate until next summer if she's approved.

I have a feeling UCLA's going to waste no time saying 'no', but will drag their feet before saying 'yes'.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
Dianejt
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« Reply #1 on: September 03, 2010, 08:35:22 PM »

Sorry to hear that. Hopefully this other person works out.
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caregiver to husband Frank

bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
MooseMom
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« Reply #2 on: September 04, 2010, 12:17:24 AM »

I have a feeling UCLA's going to waste no time saying 'no', but will drag their feet before saying 'yes'.

I suspect you may well be right.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
billybags
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« Reply #3 on: September 04, 2010, 06:29:32 AM »

Sorry to hear that Restorer. please remain positive.
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carol1987
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« Reply #4 on: September 04, 2010, 08:48:14 AM »

sorry restorer...  :cuddle; hope the next donor is a go!!
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
Sunny
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Sunny

« Reply #5 on: September 04, 2010, 01:23:31 PM »

Very sorry to hear it. Don't give up hope and keep plugging away. You are your own best advocate.
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Sunny, 49 year old female
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kellyt
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« Reply #6 on: September 04, 2010, 03:53:19 PM »

My first three were denied.  Don't get discouraged, although I know it's hard.  My "committee" was a real pain, but in the end I got the kidney I was supposed to get.  Hang in there.  I'm so sorry.   :cuddle;
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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
okarol
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« Reply #7 on: September 04, 2010, 03:56:40 PM »

We had 9 potential donors that did not work out. Number 10 was the charm!
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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
cariad
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What's past is prologue

« Reply #8 on: September 04, 2010, 05:50:52 PM »

Wow! I have never had a donor denied. This is a humbling read. I am sorry for all who have to go through that.

Restorer, do you mind if I ask what the med was for? If you get a bad feeling from UCLA, think about going elsewhere. (I hope I'm not sounding pushy about this - if you like UCLA, do stay there.) It was exceedingly difficult to get that initial appointment with Cedars, and I have a 'my-way-or-the-highway' attitude with medical affairs that often gets in my own way, but it was smooth going once I got in the door. I even forgot my insurance card on eval day (duh!) and they still let me go ahead with it. The surgeon said he did not even need to examine me - he could tell I was a dream candidate (his words). UCSF wanted to exclude Gwyn over his low-dose Inderal. He told them he took it for migraines. (That may not have been the most honest statement of his life, but let's say no more about that.) They had this utterly bizarre rule that donors could only take blood pressure meds if they were *over* fifty. They never did properly explain that one to me. Gwyn breezed through his eval at Northwestern. I think they medically approved him a week or two after his visit. Really fast. Things are slower in LA, though. They really are.

Good luck!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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kellyt
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« Reply #9 on: September 04, 2010, 07:40:09 PM »

I went through Christus Santa Rosa Transplant Clinic, as my doctor suggested.  However, if I had gone though Methodist Transplant my first donor would have been accepted.  They had a higher # for protein than Christus.  ???  It's crazy but it's true.  Look into other places, like Cariad suggested.  Check with your insurance first.

Good Luck.
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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
Sax-O-Trix
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« Reply #10 on: September 04, 2010, 09:11:36 PM »

Working on number two here.  Hoping I don't have to go any further than that! 
« Last Edit: September 05, 2010, 07:09:42 AM by Sax-O-Trix » Logged

Preemptive transplant recipient, living donor (brother)- March 2011
Restorer
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« Reply #11 on: September 05, 2010, 11:16:33 AM »

Restorer, do you mind if I ask what the med was for?
It's an anti-inflammatory.

If you get a bad feeling from UCLA, think about going elsewhere. (I hope I'm not sounding pushy about this - if you like UCLA, do stay there.)
If I don't hear anything promising from UCLA in the near future, I'm going to start working on getting seen at other hospitals in other zones. I might even do that if my second donor looks promising at UCLA, just because of scheduling.

We're a little worried about the scheduling, with my donor across the country at school. Does anyone have any experience with getting a donor who's stuck in another state worked up?
« Last Edit: September 24, 2010, 12:02:04 PM by Restorer » Logged

- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
cariad
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What's past is prologue

« Reply #12 on: September 05, 2010, 11:50:21 AM »

We're a little worried about the scheduling, with my donor across the country at school. Does anyone have any experience with getting a donor who's stuck in another state worked up?

I have only been through the initial steps. Have the donor contact your coordinator, and they should send a blood kit. If you have a positive crossmatch or if your potential donor is the wrong blood type, you will have to decide if it is worth pursuing. Probably not, unless you truly have no other options.

I know there are many on here (Karol, for example) who can talk you through the whole out-of-state process.

I know nothing about the drug, perhaps they were spooked by the condition more than the drug? Crohns usually requires immunosuppressants, so she may genuinely not be the best choice for donor since anyone on immunosuppressants should not undergo surgery if it can be avoided.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Poppylicious
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« Reply #13 on: September 07, 2010, 01:18:15 PM »

Awww, Restorer ... *hugs*

Hopefully everything will work out with your out of state donor.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
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sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Restorer
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« Reply #14 on: September 10, 2010, 09:46:46 PM »

My mom scared me tonight. My friend-donor is 20. My mom insisted that, when we were talking to the social worker, she mentioned my brother, and the social worker said he couldn't donate because donors have to be at least 25. I don't remember that exchange at all. I looked at the information UCLA has online and the only minimum age limit it mentions is 18. I think my mom is confusing dreams and memories.

Just to be safe, do you think I should email the transplant coordinator to ask? Anyone ever heard of a 25 age limit for donors? ???
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
okarol
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« Reply #15 on: September 11, 2010, 12:20:05 AM »

Our 1st transplant hospital's literature said the cutoff was 18, but when Jenna's 19 year old cousin (Jenna was also 19) wanted to be tested, the transplant team said they would not even consider her. We were surprised and the cousin and her family were upset, the whole thing was handled badly. We left that hospital because they looked like they didn't know what they were doing.  I think it's a good idea to get in clarified in advance.
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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
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