I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: phyl1215 on December 17, 2010, 07:06:57 AM

Title: Hi, haven't been here in awhile
Post by: phyl1215 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.
Title: Re: Hi, haven't been here in awhile
Post by: rsudock 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
Title: Re: Hi, haven't been here in awhile
Post by: looneytunes on December 17, 2010, 05:18:44 PM
Hi Phyl and welcome back!  Good luck with your tx.   :welcomesign;
Title: Re: Hi, haven't been here in awhile
Post by: boswife 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;
Title: Re: Hi, haven't been here in awhile
Post by: Rerun on December 17, 2010, 08:44:35 PM
Hey Phil glad you are back.  Looking forward to your posts.


Rerun, Moderator         :welcomesign;