Kidney Patient Guide

I have signed up for the paired kidney exchange program with John Hopkins because my donor is a type A and I am a type B. We are looking for another recip./donor that are opposites to do the exchange with us. If you are interested please call 443-857-6964.

Hi Bruno

My potential donor is also a different blood group to myself.

Please could you tell me a bit about the exchange programme as I have never heard about it.

Thanks

Rach

Rach,

Here are 2 links:

http://www.jeffersonhospital.org/transp ... e3732.html
http://www.hopkinsmedicine.org/Transpla ... index.html

Good luck,
Gil

Its a shame no one is doing this is the UK ... unless someone can correct me ?

I agree..the plasmapheresis is a new thing..and I guess some other places, like the Mayo Clinic are also starting it...

I am realizing that the disparities in treatment depending on unit/center/insurance/country....is just mind boggling...

I thought of Amanda when i read this..but haven't seen her here in awhile.

we are considering it for me too in the event that no one is good for me

I've already been looking into the plasmapheresis (both at John Hopkins and University of Maryland). John Hopkins seem to be really hard to contact and don't seem to follow up on phone calls. Uni. of Maryland were helpful but said that my donors would have to have their own insurance, which they don't as they live in the UK, so that knocks that avenue on the head. I have 3 potential donors, all of which I have a positive crossmatch with. In addition my husband is willing to do a donor swap (he is B+, I am A+) or the incompatible blood program that John Hopkins do. The thing is, if I can go for plasmapheresis (I'm not sure that I would be suitable, my PRA may just be too high), I would rather have one of my parents be my donor because in a couple of years or so their age will be against them doing it, whereas there isn't the same time factor with Steve who could be my back-up for the future, when they have had more experience with the incompatible blood program. Sounds morbid I know, but I know that they don't last forever and it would be great if I could hedge my bets. I am trying to progress my evaluation with John Hopkins if I can ever get in touch with them. Amanda

I'm sorry to be a bit dense but what is plasmapheresis ?

First that's not a morbid thought..i am going to possibly do the same with my two possible donors, which are 12years apart...because yea,they don't last forever...so I'd likely take the older of the two.

I am bummed that you are not reaching John Hopkins...what about the Mayo Clinic ( I think there's one in NY) and I think they do it too.
Yes, I checked the Mayo Clinic in Rochester, NY and they do this prodecure as well.....

Please don't stop trying Amanda!


Here's a link describing plasmapheresis

http://www.4-mga.org/d1/d3.htm

This link is about using plasmapheresis to reduce PRA before transplant:

http://www.umm.edu/transplant/kidney/highpra.html

Gil

Thanks Gil

I checked out your website and found it really helpful in explaining alot of unfamiliar terms

Many Thanks

rach

amanda,
here's a numbers that might help you along the way...
sharon ( didn't get her last name) but she is the nurse coordinator 410-955-6685. good luck!
bruno

Hi - I just wish Canada would do some of the things that the USA does like the swamp program. My husband is a B and I am a A. Our kids have my blood group so just have to sit and wait. His PRA are Class 1 96% and Class 2 99% and they do not do the plasmapheresis thingy in Canada or at least in Saskatchewan, Canada. And yes Hal it is a shame that more of the Countries are not doing the same as the John Hopkins in the States.

Hi it is karen from montreal, it took me ages to figure out how to get back on this board..but i have been reading all the posts. there is no reason why canada does not do donor exchange programs...i t is my mission to establish this program in montreal...first i spoke with the doctors to see if they had the facilities to do 4 operations at a time...the answer was yes...the rest is administration...we simply have to push, to demand...that such a service is available! how many people could benefit by this....i would gladly give my kidney to a stranger because i cannot give to my husband!also it was so great to hear from Ronnie...you guys are all part of my extended family...a day does not go by without me checking the board...have a grat weekend..we have a holiday tomorrow and i am playing hooky on friday!!!