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  #1  
Old Sat Aug 2, 2014, 07:19 PM
Ninanna Ninanna is offline
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Location: Baltimore, MD
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Double transplant - BMT and kidney (yes I might very well be crazy)

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.

Last edited by Ninanna : Sat Aug 2, 2014 at 07:32 PM.
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  #2  
Old Sat Aug 2, 2014, 07:55 PM
Chirley Chirley is offline
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Location: Logan City Australia
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You know, that's extremely interesting because my cousin has had a kidney transplant and continues to have plasmapheresis to get rid of the iga attacking his new kidney. Could you please let us know how you go, or post a link to another site where you update on your kidney progress. My family has so much autoimmune, kidney and haematological disease links that I would love to follow your progress. I was wondering how my other cousin with Lupus would go with her very nasty wide spread vasculitis (she's 19 years old now and extremely ill) and on chemo for it.

Glad to hear you're doing so well. It was very brave of you.
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  #3  
Old Sat Aug 2, 2014, 09:33 PM
Neil Cuadra Neil Cuadra is offline
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Ninanna,

It was quite brave of you to undergo the double transplant. The idea behind the trial procedure -- avoid eventual rejection by accepting a kidney AND its matching immune system -- makes sense for someone as young as you.

It was necessarily a mini-BMT, not a full one, because with full transplant preconditioning you couldn't have been eligible for surgery.

You're on the right path. If you were 100% donor at Day 30 and Day 60 then I'll bet you are 100% for good.

Skin GVHD is a lousy side effect. Let's hope it doesn't flare up again as you reduce the immunosuppressants. Good luck. I hope the trial is a smashing success for you and for future kidney patients.
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Old Sun Aug 3, 2014, 04:25 AM
Ninanna Ninanna is offline
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Join Date: Aug 2014
Location: Baltimore, MD
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Thank you so much Chirley and Neil. I was hoping this was ok for me to post here, I know most topics are related to marrow disease, but every time I web searched a BMT question, this site invariably popped up

I will keep updating, and yes, I hope the GVHD doesn't flare up either. I know for the next patient they are slightly altering the preconditioning and not having the donor take nuepogen injections before hand to try to avoid GVHD. As always, it's a fine balance. Not enough and you won't engraft, too much and you get GVHD.
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  #5  
Old Wed Aug 6, 2014, 01:01 PM
Ninanna Ninanna is offline
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6 month chimerism was 100%

Kidney biopsy was also negative for rejection and I have no antibodies! Hopefully after next week I can begin the taper of the cellcept and prednisone!
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  #6  
Old Wed Aug 6, 2014, 02:32 PM
Neil Cuadra Neil Cuadra is offline
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This is great news. Congratulations!

How does it feel to be a medical pioneer?
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  #7  
Old Mon Sep 8, 2014, 08:33 PM
Ninanna Ninanna is offline
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Join Date: Aug 2014
Location: Baltimore, MD
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Thanks Neil! I don't really think too much about being a pioneer, it still feels strange to me.

So a little bit of an update: I am completely off the cellcept and down to 5 mg of Prednisone. Unfortunately I have had some infections issues lately, including pneumonia and fluid around my heart. They had to insert a cath to drain the fluid (about 600 ml worth). It was very painful. Because of this, they are moving the taper schedule up by 5 months. I have another kidney biopsy Wednesday, and if that looks good, I'll stop the Rapamune altogether. So I'll be off everything by early October instead of February next year.

This new plan sounds great to me and I can't wait!
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  #8  
Old Tue Sep 9, 2014, 07:24 AM
Cheryl C Cheryl C is offline
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Wow! What an interesting story. Thanks for sharing it with us. So pleased to hear that you are doing well.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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