[Ninanna]

Hello, my name is Holly. I have been lurking for a while and since I posted in another thread, I figured I should introduce myself.

My story is quite different. In 2007 I was diagnosed with a chronic kidney disease called IgA nephropathy. Over the years my kidney function slowly declined until in 2013 I reached end stage renal disease, or kidney failure. My mom luckily was approved as a 3/6 match and was willing to be my kidney donor.

The surgery was scheduled at Hopkins in November. However I was approached by the head of transplant and two BMT doctors asking if I would be interested in participating in a new trial they were working on. So the trial was to combine a mini (non-myleoblative) haplo BMT with a kidney transplant, both marrow and kidney from my mom. The hope is that my new immune system made up of her cells will see her kidney in me as self, and then I will be able to wean off the life long immunosuppressants I would otherwise need for life.

Some may ask, "why would you do this, it's incredibly risky?!" And it is. But facing kidney failure at 29 isn't exactly a picnic either. I would need multiple kidney transplants over my life time, each time harder and more difficult to do. You see, transplanted kidneys don't last forever. While doctors are good at treating acute rejection, there is not much to be done about chronic rejection. And then there are the life-long drugs that are toxic to kidneys. And some kidney diseases are recurrent, like the one I have. Life long immunosuppressants also carries with it the risk of frequent and deadly infections, as well as increased risks of cancer.

So I agreed, because my kidney might never reject, the drugs won't kill it, and the BMT may actually cure my IgA, as it is an autoimmune disease and is thought to start in the bone marrow.

Day -9 to -7 were infusions of ATG. Day -6 to -2 were the chemo days in the morning, followed by hemodialysis in the evenings. Day -1 was TBI. And the big day 0 (Feb 4th) I had a kidney transplant in the morning and a BMT later that day. Day 3 and 4 I had high dose cytox to reduce the incidence of GVHD.

My day 30 and 60 chimerisms were 100% donor. I had had edema, acute grade II skin GVHD (successfully treated with steroids), CMV, PRES from the Tacro and a couple lumbar punctures to go with it. I am now almost day 180 and anxiously awaiting my latest chimerism draw and other blood results to give me the go ahead to start the weaning.

I also happen to work for the company that developed Prochymal, a MSC treatment for GVHD. Anyways, I'm sorry for the long post.