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boxman55
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« on: January 27, 2008, 03:30:15 PM » |
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My sister started the testing process to donate a kidney to me but was told that because she had an auto immune disease ( Crohn's ) with the last episode occurring in 1976 that she was disqualified. Other then this she would have been a perfect match. Is that being a little to cautious or is that just the way it is. I can't tell you all how this sucks...Boxman (Crohn's is a small intestine disease that is treated with steriods)
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 "Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008 |
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kidney4traci
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« Reply #1 on: January 27, 2008, 03:54:49 PM » |
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That does suck boxman... sorry to hear that! Hope they weren't getting your hopes up and then at the last minute let you down. Or did they just say no from the get go seeign her history?
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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!!!
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Rerun
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« Reply #2 on: January 27, 2008, 04:01:51 PM » |
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That is crazy! I would demand a second opinion. I would write to UNOS (United Network for Organ Sharing). http://www.unos.org/That is just nuts!  |
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okarol
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« Reply #3 on: January 27, 2008, 04:40:32 PM » |
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Wow that's hard to imagination that they would rule her out over something that appears to be inactive. I don't know anything about Chron's. I am so sorry to hear this Boxman.  |
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Ang
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« Reply #4 on: January 27, 2008, 04:53:30 PM » |
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inevitably you let yourself think, even a little that this my chance, then they pull the rug from under you, bloody well sucks big time.
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live life to the full and you won't die wondering
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boxman55
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« Reply #5 on: January 27, 2008, 05:10:50 PM » |
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inevitably you let yourself think, even a little that this my chance, then they pull the rug from under you, bloody well sucks big time.
ya it does, Ang. I will be calling a transplant team in another city to see what they say. I mean come on... something that has been dormant for over 25 years. My sister is very disappointed also, and is willing to try anything...Boxman |
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"Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008 |
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paris
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« Reply #6 on: January 27, 2008, 05:35:10 PM » |
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Boxman, I am so sorry. Those of us who have had potential donors disqualified understand the pain and disappointment. One of my sons is a 5 of 6 antigen match but they disqualified him because they determined he was pre-diabetic with a blood sugar level of 99 (which is usually considered good). This was done at Johns Hopkins with their plasmapheresis program. Another son was turned down because he needs to lose 20 pounds. Three more tested and ruled out. It is so frustrating. I really hate that this has happened and I share your disappointment. Sometimes it is hard to keep hope alive. Sending lots of good energy and loving thoughts to you |
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It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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kimcanada
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« Reply #7 on: January 27, 2008, 05:50:35 PM » |
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Boxman I am so sorry to hear this,  I just went through the same thing myself, its so hard not to get your hopes up . Kim  |
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lola
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« Reply #8 on: January 27, 2008, 06:08:54 PM » |
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Boxman that sucks, we have crohns in my family and it can "pop" up at any time so they probably just are being really careful but I would ask for a 2nd opinion, good luck we have learned evertime someone gets tested we tell ourselves there not gonna match so that way we're not disappointed so much Otto's had over a dozen turned down for diffrent reasons HANG IN THERE IT WILL HAPPEN 2008 IS IHD"S YEAR |
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stauffenberg
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« Reply #9 on: January 27, 2008, 06:10:19 PM » |
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All auto-immune diseases arise from the same type of error in the immune system, which is a tendency of the killer-cells and the lymphocytes to over-react whenever there is any kind of stress or infection operating on the body. It is quite common for people to have more than one auto-immune disease, all stemming from this same lack of control in the immune system, due to a genetic error in the design of the system. Since some auto-immune diseases, many of which can damage the kidneys, are statistically closely associated with Crohn's Disease, it is only sensible to refuse to take a kidney from a person with that susceptibility, who may well someday need all the reserve nephrons possible to withstand a further auto-immune attack -- this time not directed against the intestine but instead against the kidneys. Crohn's Disease is also statistically highly associated with auto-immune diabetes, which is itself a major risk to renal function.
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boxman55
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« Reply #10 on: January 27, 2008, 06:16:30 PM » |
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thank you all for your kind words and stauffenberg for your insight even though it's not what I wanted to hear...Boxman
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"Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008 |
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Ohio Buckeye
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« Reply #11 on: January 27, 2008, 07:14:37 PM » |
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I'm sorry Boxman.
I know you must be disappointed.
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If I must do this to live, I must strive to live
while I am doing this.
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KT0930
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« Reply #12 on: January 27, 2008, 07:32:43 PM » |
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Boxman, I'm so very sorry to hear this. I know very little about Crohn's, but the one person I know who has it (who also has some type of CKD), seems to have attacks pretty frequently - like every couple of months - I would think that after 25 years, you wouldn't be considered to have it anymore. Again, I don't know much about it, but I'd be getting a second opinion as well. Best of luck with it.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
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kellyt
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« Reply #13 on: January 27, 2008, 07:54:06 PM » |
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Sorry to hear this. Hopefully a 2nd opinion will turn out with better news. 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!  |
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Mimi
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« Reply #14 on: January 27, 2008, 08:27:20 PM » |
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So sorry Boxman. Another kick in the teeth. Don't give up tho, get another opinion. Your day will come.
Mimi
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
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Romona
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« Reply #15 on: January 27, 2008, 08:35:06 PM » |
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Sorry Boxman. Keep trying. I don't know how many times people have been rejected at one place only to be accepted somewhere else. |
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jbeany
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« Reply #16 on: January 27, 2008, 09:01:20 PM » |
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality. |
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oswald
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« Reply #17 on: January 27, 2008, 11:22:36 PM » |
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hang in there boxman. |
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ESRD 11/95
1st Transplant 7/1996 (failed; Nephrectomy 12/1996)
2nd Transplant 3/1999 (lasted 6 years)
3rd Transplant 5/2007 (lasted 4 years)
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Joe Paul
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« Reply #18 on: January 27, 2008, 11:44:26 PM » |
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Sorry to hear it Box
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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
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Amanda From OZ
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« Reply #19 on: January 27, 2008, 11:48:34 PM » |
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I'm sorry to hear that boxman... I am hoping a donor will become available soon. Amanda xxoo |
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tamara
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« Reply #20 on: January 28, 2008, 12:15:26 AM » |
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Hope you get another chance with your sister another way or the phone rings real quick for ya Tamara |
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ABO Incompatible Transplant from my loving Partner 23/10/07
after over four years on the D Machine
Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
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Sluff
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« Reply #21 on: January 28, 2008, 02:58:01 AM » |
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That sucks man...I'm so sorry. To finally have someone who is willing to do something this important and then told they can not do it is a hard pill to swallow. I hope someone comes forward soon ... hang in there buddy. |
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boxman55
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« Reply #22 on: January 28, 2008, 06:08:30 AM » |
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This is the e-mail my sister sent out to family and friends.
Hi Everyone,
It is with great sadness that I share with you the recent notification that Mark's transplant team has turned me down as a living donor for a kidney transplant. After sending them all of my pertinent medical records, the only thing that ruled me out was that I have a history of Crohn's disease. Since it is an auto-immune disease that has the possibility of being chronic ( I am fortunate not to have suffered an episode for 27 years) they will not let me donate my kidney. I am deeply disappointed. Apparently, some of the treatment that they use for Chrohn's disease can be hard on kidneys ( longer periods of prednisone and antibiotic treatment). They will not consider the fact that I only had 3 episodes from 1976 until 1981 and have not had a single recurrence for the last 27 years. They are extremely tough in their protection of the donor.
While I was procuring information on what would eliminate one as a candidate, I found out that there are several illness or conditions that would prevent one's ability to be a living donor for the Froehdert Transplant Team (Marks transplant team of Doctors)
1.Diabetes
2.Impaired Glucose Tolerance Test
3.High Blood Pressure
4.Kidney Disease
5.Heart Disease
6.Auto-Immune disease (such as Crohn's, Irritable Bowel,Lupus, etc)
7.Smoker
8.Cancer
Please continue to pray for Mark. I know this is very difficult for all of us, but it is especially difficult for him.
Love, Lynn
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"Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008 |
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okarol
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« Reply #23 on: January 28, 2008, 08:54:49 AM » |
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xtrememoosetrax
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« Reply #24 on: January 28, 2008, 09:11:56 AM » |
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Boxman, I'm so sorry to hear this. |
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