Hi, new & started IVIG treatments

[phyl1215]

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

[Erin8607]

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.

[phyl1215]

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.

[Erin8607]

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.

[Hanify]

Welcome.  How exciting!  Good luck with the trial.

[paris]

    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.      Welcome to IHD.





paris, Moderator

[willieandwinnie]

  Phyl. We are a wonderful group fro sharing information and support. Please keep us posted on how it goes for you. 

[Bajanne]

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 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

[kellyt]

     Welcome and good luck with your IVIG treatments.  I hope all goes well for you!

[monrein]

   I look forward to your updates about the IVIG treatments and hope they prove successful.