NEW TRANSPLANT WITH NEW HIGH ANTIBODY PROTOCOL!

[Jenabcd]

Hi all,  First of all, I am 1 week, 2 days post transplant and so darn excited!  I had been on dialysis for over 4 years, having a matching donor since the beginning.  I was one of those who had previous blood transfusions, and the 99 PRA.  I had been through 2 separate IVIG treatments, which were very hard on my body, and put me in the hospital for 3 weeks at a time, both times.  I ended up with C Def, bleeding ulcers, other stomach ulcers, burned out stomach, and burned out esophagus.  Over the next couple of years, my husband didn't stop looking for help for me.  He ran across a drug that he thought could help, by stopping a rejection because of antibodies, with a matching live donor.  He talked to my surgeon about it, and he agreed.  We put it to our insurance company, who denied us, because it would be experimental.  We appealed, and it was denied again.  The surgeon said not to attempt a 3rd appeal, and he would talk to the drug company (Alexion), and try to start up a free drug trial test study.   I would be the first patient.  He, the drug company, and all attorneys worked on it, and 8 months later, they were ready for me, and any that are in my position that will come after me.  My surgeon made a new treatment protocol, knowing that I couldn't do the other.  Everything, daily, has been and continues to be, documented.  The new protocol was 2 weeks long.  Long days, and again, harsh, but I was able to hang in there for the two weeks, and the night of the 14th of this month, they admitted me, and started a triple dose of IVIG, and said that I am a GO for morning surgery on the 15th.  My donor, who is my son, was admitted at 5 a.m. the following morning.  The surgery proceeded, and SO FAR SO GOOD!!  The first thing that I remember when being rolled into my room the night of surgery was that my husband had already gotten rid of my dialysis machine.  It is still so overwhelming and emotional for me.  I believe they've already got a couple more people going in this drug trial.  I am signed on for this trial for 3 years...all so very worth it!!   I never gave up, and neither did my husband, family or doctor. 

[jeannea]

That's an amazing story. I hope everything works out and continues to go smoothly. I'm sure the doctors will write the journal articles to share the info.

[willowtreewren]

Wonderful and exciting news. Bravo for your husband AND your son!  You have quite a family and I know you are proud of them.

Aleta

[Jenabcd]

I am so very proud of my family.  I have another son who wanted to donate also, but is a diabetic.  I have a great and huge and wonderful support system and so many prayers were being said.  I knew it would work this time!

[MommyChick]

That is AMAZING & so is your family!!
I too have PRA of 99% but have antibodies that are non-decreasing. Good Luck & God Bless you & your new kidney/ family! 

[Jenabcd]

Hi MommyChick,  Mine were never going to decrease on their own either.  Actually, I ended up needing more blood transfusions during the first 2 sets of unsuccessful treatments.  (I also had 2 more after the transplant last week)  Anyway,  I don't know where you live, but they are doing this drug trial in Houston, and wanting more people in the study.  Or maybe your transplant center would want to start something like that.  Don't give up!!

[geoffcamp]

AMAZING!!!   That is GRAET news for me. Is there any way possible I could get your doctors contact information???  PLEASE!?  This is exactly what I need and have been searching a hoping for. I want to get all the info I can and maybe put my doctor in touch with yours to see if I can qualify to get the drug or on the study. Thank you so much for sharing!!  My email address is geoffcamp77@me.com. I really hope you can provide that contact info for your doctor so I have something solid to bring to mine.  Thanks SOOOOO much and I wish you all the best and continued success!!
Best regards,
Geoffrey Campbell

[okarol]

  So glad to hear all is well. We will follow your progress closely as Jenna has 100% antibodies after 1 transplant and NO transfusions! Best of luck to you and your family! 

[DialysisGoneFOREVER]

So glad to hear all is well. We will follow your progress closely as Jenna has 100% antibodies after 1 transplant and NO transfusions! Best of luck to you and your family! 

What do you mean by 100% antibodies?

They told me I have ZERO antibodies since my 1st kidney was a perfect match from my sis.

[MommyChick]

Hi MommyChick,  Mine were never going to decrease on their own either.  Actually, I ended up needing more blood transfusions during the first 2 sets of unsuccessful treatments.  (I also had 2 more after the transplant last week)  Anyway,  I don't know where you live, but they are doing this drug trial in Houston, and wanting more people in the study.  Or maybe your transplant center would want to start something like that.  Don't give up!!

Sorry only reading this like a month later, my life has been crazy busy! I am def. interested in what you went through. I live in PA & I have been trying to get listed also at John Hopkins because I was told there pretty good with high PRA's as well. Trying to get listed there is taking me forever! But in the mean time I'm still on the paired donation list as well at the national transplant list here in Pa.

Thanks & God Bless!
Marna

[smcd23]

I am going to have to research this drug more. We found out my husband has a PRA of 99 at our last visit last month and they gave him a lot of options, but most of them involve a living donor.

[jeannea]

Hi MommyChick. Nice to meet another PA person. I'm in Montgomery County.

I haven't been to Hopkins but I'm sure they're good.