I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: phyl1215 on August 05, 2009, 01:20:21 PM

Title: Hi, new & started IVIG treatments
Post by: phyl1215 on August 05, 2009, 01:20:21 PM
I am at 14% function, not on dialysis but very close to it.  I am on the transplant list since Dec. 08 with very high antibodies of 98%.  My hospital here in Ohio is doing an invesgational trial with IVIG treatments to lower antibodies so I can match with my donor (daughter) as we are a perfect match except for one antibody and it is very high and she was ruled out as a match.  The study is only doing 50 people and I am #19.  This is fairly new but hopefully will be successful and Medicare will cover it and it will save thousands of lives.   I was preparing myself for dialysis, choosing to do PD and already talked to the surgeon, this still may be necessary if the treatments don't lower my antibodies enough.  So anyway, I feel blessed to be choosen for this trial but overwhelmed again because if this works I could get a transplant by late fall!!!!  I was told 3 to 5 years or more.  I willl not know the results of the first phase of this test until the end of Aug. and there is a second part if the first phase doesn't lower them enough.  I will keep you updated as this is very exciting news for all kidney patients with high antibodies.   Phyl
Title: Re: Hi, new & started IVIG treatments
Post by: Erin8607 on August 05, 2009, 01:29:04 PM
Please keep me posted on this as my brother and I are a very good match except for one antibody, too. Its an antibody I formed while rejecting my last transplant.
Title: Re: Hi, new & started IVIG treatments
Post by: phyl1215 on August 05, 2009, 01:39:03 PM
Erin, I will keep you informed of the progress at the end of Aug.  The trial I'm in is no expense to me but if they are successful Medicare will eventually cover it.  California has a hospital approved by Medicare to do this proceedure already.....http://www.csmc.edu/12296.html, try this link.
Title: Re: Hi, new & started IVIG treatments
Post by: Erin8607 on August 05, 2009, 01:44:11 PM
Thanks for the link, LA is only about a 2 hour drive from where I am part time in CA. Family keeps begging me to get on the list out there, the wait time is much shorter, around 3-4 years.
Title: Re: Hi, new & started IVIG treatments
Post by: Hanify on August 05, 2009, 03:28:21 PM
Welcome.  How exciting!  Good luck with the trial.
Title: Re: Hi, new & started IVIG treatments
Post by: paris on August 05, 2009, 03:47:56 PM
 :welcomesign;   I look forward to hearing more about the trial you are in. I just finished IVIG treatments.  I hope you have great success with everything.   :2thumbsup;   Welcome to IHD.





paris, Moderator
Title: Re: Hi, new & started IVIG treatments
Post by: willieandwinnie on August 06, 2009, 02:49:43 AM
 :welcomesign; Phyl. We are a wonderful group fro sharing information and support. Please keep us posted on how it goes for you.  :cuddle;
Title: Re: Hi, new & started IVIG treatments
Post by: Bajanne on August 06, 2009, 08:48:08 AM
Welcome to our community, Phyl!  This is a great place for you to be as you await your outcomes - which I hope will be positive!  Let your daughter know that donors are considered heroes (heroines!) around here!  This is not just a forum - it is a genuine family :grouphug; caring and sharing, as you will find out, if you stick around.  Just keep reading and keep posting.  We are all waiting out to hear how your IVIG goes, so keep us posted.




Bajanne, Moderator
Title: Re: Hi, new & started IVIG treatments
Post by: kellyt on August 07, 2009, 07:56:33 PM
 :waving;    Welcome and good luck with your IVIG treatments.  I hope all goes well for you!
Title: Re: Hi, new & started IVIG treatments
Post by: monrein on August 08, 2009, 04:31:37 AM
 :welcomesign;  I look forward to your updates about the IVIG treatments and hope they prove successful.