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Author Topic: Hi, haven't been here in awhile  (Read 1808 times)
phyl1215
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« on: December 17, 2010, 07:06:57 AM »
 Hi my name is Phyl and I haven't posted here in awhile so I thought I had better re-introduce myself.  I am on the Homechoice night cycler for 11 mths. now and I love it, I still have about 12% function and only have to do 4 cycles at night while I'm sleeping.  I have been on the transplant list for 2 yrs. now.  A year ago I did over 3 mths. of a research at Christ Hospital here in Ohio.  It was low dose chemo (Velcade) to try and lower my antiboides, I'm at 97%  It did not work.  My daughter has just been tested and is a perfect match except for one of my high antibodies.  Now the transplant team is starting me on a new program with one iv infusion of Rituxan and then up to 6 treatments of IVIG (the protcol used at Ceaders), one treatment/mth.  This in hopes she can give me a kidney, she has been approved as a donor.  I am doing well on PD, have some energy and enjoy the freedom I have, we have traveled alot with my machine in tow.  I want to be more active in this group and would like to start a thread about my journey to lower my antibodies as I know many have the same problem.   Wishing us all the best.
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PD 3 yrs.
TX list 4 yrs.
Deceased donor PERFECT MATCH Kidney transplant July 8, 2012


Learning To Dance In The Rain
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #1 on: December 17, 2010, 04:37:24 PM »
Phyl thank you for posting about the antibodies. My first donor did not match b/c of some of those nasty critters so now I am trying to learn about this process of IV treatments to lower the antibodies. I have a new living donor being tested now so let's hope the antibodies won't be an issue, but I did tell the doc I don't want this donor so easily dismissed if she is not a match b/c I will do the IV treatments to lower the antibodies! Please Please keep us updated I for one will be reading your journey! Good luck friend!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
looneytunes
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Wishin' I was Fishin'
« Reply #2 on: December 17, 2010, 05:18:44 PM »
Hi Phyl and welcome back!  Good luck with your tx.   :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
boswife
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us and fam easter 2013
« Reply #3 on: December 17, 2010, 06:57:36 PM »
welcome back and you have some VERY interesting stuff to share.   Glad your doing well, and heres to getting going on getting that kidney  :beer1;  I'll add that thats just root beer!!! :beer1;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Rerun
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Going through life tied to a chair!
« Reply #4 on: December 17, 2010, 08:44:35 PM »
Hey Phil glad you are back.  Looking forward to your posts.


Rerun, Moderator         :welcomesign;
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