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Author Topic: Question about transplant and a little rant /..:)  (Read 2648 times)
7piglets
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Me and the boys

« on: March 22, 2008, 07:28:53 PM »

I was wondering because this is bugging the you know what out of me.. I knew 4 yrs ago I was going into kidney failure After my stillborn twins my creatine was 2.7 within the same year rose to 3.5 etc etc. I was not put on anything at the time other than Aranesp. No bp bills because I always had low bp ..I asked if I could go on kidney list and start the process and was told NO I had to be cancer free for 5yrs. (I had a recurrance of sarcoma/cancer same year) so this year finally allowed to go on list (but if you read my other post now they think I have sarcoma/ in my lungs arghhhh) When I was seen by drs' to do exam for list was told oh no you could have been on and earned time while we waited to see if you were cancer free oh and btw it is 2 yrs not 5!!) So I am looking at it like 1) I most likely could have received a kidney by now prior to needing dialsysi and prior to finding out cancer returned I think I get shaft there..Is this right ??
Now for my rant ....keeps bugging me any of you have no one offer to be tested to give you a kidney ..? I dont know it is just getting to me I would do it without thinking for any of my friends or family (if I could) I most liikely would tell them no because I wouldnt want them to go through it for me However, would still be nice to know the offer was there NO? or am I being a baby about this :)
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kellyt
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« Reply #1 on: March 22, 2008, 07:55:32 PM »

:grouphug;   I don't have an answer for you.  But I'm sure sorry about the cancer possibly being in your lungs.  I'm pre-dialysis and was just activated on "the list" in mid February.
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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
Chris
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« Reply #2 on: March 22, 2008, 10:10:00 PM »

Hard to say without know what doctors told you this. My first nephrologist didn't tell me about transplants, I started looking for myself and going to different transplant centers. My advice to anyone who may need a transplant is to consult with a transplant center to get all the correct information regarding who they accept to be put on the list, when to be put on the list, ect.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Psim
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« Reply #3 on: March 23, 2008, 12:03:45 AM »

I don't think you're being a baby. I think what you're going through is hard hard hard. I'm still hoping like crazy that it will turn out to be fluid and not a sarcoma. But you have been through so much pain and loss. With that administrative screw up on top of it, no wonder you're feeling messed over. And it's hard (for me at least) to keep on an even keel about people deciding to be donors or not. It's a really fraught issue for everyone.

Hope things start to go better for you.
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Slywalker
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« Reply #4 on: March 28, 2008, 05:20:17 AM »

7piglets - I also am a cancer survivor.  And I am almost 10 years out but I had to clear even more tests than normal because they wanted to make sure I was cancer free.  The immune suppressor meds you need to be on after a transplant, I'm told, can really do  you in if you have cancer when you get a transplant.  (And, btw, "do you in" meant they could kill you.)  Sad news - but that is what I was told by my doctors.  I've also been advised I have to be more than vigilant regarding annual tests to make sure we catch a re-occurrence in a very timely manner.

Good Luck.

Sandyb
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7piglets
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Me and the boys

« Reply #5 on: March 30, 2008, 07:10:48 PM »

skywalker thanks for info
We went over all thei meds (prior to kniowing cancer is back) and they have othe meds I could be put on that do not cause the problems with sarcoma as some other cancers so that wouldnt have been a reason to not let me on list.
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kidneyx3
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« Reply #6 on: May 02, 2008, 09:48:02 PM »

 :Kit n Stik;
You're not being a baby at all! People just aren't educated on the gift of kidney donation. Some of my closest friends weren't even willing to get tested, however someone I barely knew got tested without telling me, was a match and donated without question. Just don't give up hope.
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