Is anyone here in a positive crossmatch situation?

[Beth36]

My mom has just completed her physical and psychological testing for her transplant.  She has a high PRA.  It's is 76 and we know that because of that, it will be harder to find a match.  So, we are working with Mayo Clinic in MN to do a positive crossmatch transplant.  We have had all the initial bloodwork done and are in the process of waiting for our flow crossmatch results to see how much, if any plasmapheresis she will need.  I say if any because there is a chance we won't be able to donate at all if T cell and B cell numbers are too high.  That is the most frightening part of it.  I don't know what to do because I am so worried right now.  UGH...anyway, after she completes her Hep B vaccine in January, if she is able, she will have her transplant then.  She'll likely need dialysis soon, as her function is now at 12% and it went from 30% in February to 12% in June.  She'll be tested again this month.  We are considering Paired Exchange if none of us can donate and it's all just so overwhelming.  Just wanted to know if anyone here can relate...


Beth

[okarol]

Hi Beth,
Read Jill's story - it's regarding her positive crossmatch transplant http://ihatedialysis.com/forum/index.php?topic=1319.0.
I hope the testing goes well. Be sure your mom has her flu vaccine and chickenpox too (if she never got the spots naturally) and any gynecological and dental stuff out of the way.
Best of luck to your family!

[paris]

I am in exactly the same situation-PRA of 100%.  Read all of Jill D's posts. She had her positve crossmatch transplant at Mayo, so she will have lots of good info for you.  I have been working with Johns Hopkins and Carolina Medical Center, but we aren't having luck with the potential donors who have gone thru the testing.  Jill will be happy to share what she has gone through. She is a wonderful woman full of goodness and happyness.  Best of luck to you and your Mother.

[Beth36]

Thank you!  I read her thread and it was VERY informative!  It gives me some hope....Paris, I wish only the best for you as well.  This is such a hard thing to deal with.  You want to help but those dadgum antibodies get in the way...totally frustrating and puts a whole new meaning to "if it's not one thing, it's your mother"   

Beth

[paris]

That was funny!! I will have to share that thought with my kids!  I have a daughter named Beth.   I am not your Mom's age yet--but hope to be one day.  My 4 children have gone through the testing, also a friend, but something always comes up.  I am the only person in my nephs office that has had this PRA problem. Without the internet, I would be lost trying to find information.  What I love about IHD is if someone doesn't have an answer, another will search to help find one. There are so many caring people here and I hope you will find help here, too.  It is a great place to come to if you are scared, depressed, worried--someone will lift you up and then come back when there is good news to share and everyone will celebrate with you. Sending you good wishes.

[Beth36]

Well, I am the oldest of 4!  So, how's that for ironic?  My mom turns 61 on the 15th and I hope and pray that you will be her age someday, as well.  I have always told people to consider the alternative when they bitch about being another year older because there are many many people who don't have that luxury.  Yeah, my mom is  the only person her neph is dealing with who has high PRA as well and the first transplant hospital pretty much washed their hands clean of her once the PRA was discovered.  Oh, here's another similarity...my mom is orignallly from North Carolina!  My parents don't live in NC but my hubby and I are thinking of moving to the Raleigh suburbs next year....my mom's entire family are diehard UNC fans.  So, I hope Carolina is good to you!  We were so happy to find Cheerwine at our local WalMart.  Nobody has heard of it but the addiction is spreading fast in the VA suburbs...lol...good luck and I hope to chat with you again soon.


Beth

[Jill D.]

Hi Beth - so glad you had a chance to read my posts and hopefully give you some info! I cannot say enough good things about Mayo...I love that place so much that I actually looked forward to my 4-month checkup and am looking forward to my 1-year checkup (despite the 9 hour drive, the 24 hour urine catch, the biopsy, blahblah!!!) I felt very lost when I found out that I couldn't have my transplant in Michigan as planned in 2005....Mayo has been a lifesaver! I feel fantastic and everything went so smoothly. Is your mom seeing Dr. Gloor? He is so nice...and funny, too - but you have to bring him out of his shell as he is very quiet. I told him that I had googled his name to find out more about him, and he never heard of that before so he googled it while I was in his office and couldn't believe it! He is very humble, but I told him that I so much appreciated his interest in antibody research so I could have a transplant.
Anyway, I'm so happy that your mom is being evaluated at Mayo, and please feel free to ask me any questions you may have!

[kidney4traci]

My antobody count is 99%.  I live in Houston and they said they were working on different ways of getting transplanted, but so far nothing.  I have been on one list for 12 months and another for three months.  Is Mayo the only hospital that will do the crossmatching?  I had read about the plasmaphoriss and when I mentioned it to the dr.s they said it would only work if the right donor was available.  Well I have had over six people tast to be a potential donor but none of their blood were a match.  One is very close, but they said at the end, the antibodies fight each other.  Sorry I am rambling, but it is all confusing.  Thanks.

[Beth36]

Thank you, Jill!!  We're just now getting our flow crossmatch stuff done today and will know as of Thursday (day after tomorrow  ) who is the better match between my hubby and myself.  Then, we have to wait for my sister's results, she's a week behind us in the blood thing.  So far, my mom has had all her records transferred to Mayo and all her bloodwork is done.  I guess we're basically in the waiting stage.  We'll know for sure who will be going to Rochester in the next coming weeks to be evaluated.  Mom hasn't actually "seen" a doctor yet, since they are out of state.  I guess once we get closer to the big day, she'll go up there?  So far, all she lacks is the Hep B vaccine.  She had her first dose last month and will have her second dose later this month.  That's the most irritating thing, I guess since it takes such a long time to finish it.  We're looking at late this year/early next for the transplant time, if we are able to donate to her.  The one thing that is the absolute most nerve-wracking thing is if we can't.  I didn't know that the T cell and B cell numbers were so important when I was doing research.  They make it sound like you just get tested and voila! plamapheresis and transplant.  Right now, we're just in a holding pattern but I know I will ask you lots of questions once it all goes down.  Your story is such an inspiration and I am so grateful I found this site.  I'm not as nervous after reading your story.  You are truly an inspiration to me!  I hope that you continue to stay happy and healthy!

Beth

[Beth36]

Hi Traci!  They do plasmapheresis at Johns Hopkins, Mayo in Rochester, and University of MD but they could do this at other places, those are just the main 3 I have read about.  I know that Mayo does ABO Incompatible transplants as well.  They are similar to the High PRA Rescue Protocol in that you have plasmapheresis and IVIg but you also have your spleen removed.  I will say that the people at Mayo are the nicest people I have ever talked to, ever.  We started with the regular testing--blood type compatability, antigen match, and crossmatch.  Since we had positive crossmatches (because of the antibodies), we now have to have a flow crossmatch.  That is a more in-depth crossmatch and will tell us more about how strong my mom's antibodies are sensitized to us.  If she is really sensitized to us, whoever that person is can't donate.  So, we're hoping for someone to have low T cell and B cell numbers.  This is something that has been done since 2000 and is relatively new and some consider it experimental but we are taking the chance, if we can.  We're also trying to get registered with Paired Donation, so we'll see.  I wish you all the luck in your quest for a match and I pray that it comes soon!!

Beth

[kidney4traci]

Thanks Beth for the reply.  I appreciate the info, and will talk to my director.  They are helpful, but I just don't fully trust md's anyway.  What you said about the ABO sounds familiar.  Hope they can clear this up tomorrow.

Praying for you and your mom too.  She is lucky to have such awesome support!

[Beth36]

Thanks, Traci...I don't trust MDs fully, either and had to be MY own advocate when I was trying to get pregnant but that's a WHOLE other subject/message board...that's why I got on the internet and found Mayo Clinic when the first transplant hospital my mom went to pretty much dropped interest in helping her after finding out she had high PRA.  It just makes me so mad when I hear about people with high PRA say their doctors either don't know what to do or won't help...ugh...it makes me so mad because these are people not situations!  If only doctors knew or wanted to know.  This experience has taught me that you need to fight for yourself and your loved ones, that's for sure!  Anyway, let me know if I can help and if I ever come across ANY info you might be interested in, I'll post it for you.  I spend LOTS of time (well, as much as my 2 year old will allow) reading up on kidney disease and treatments (when I have a question and it's like 10pm and no one to call.... ).  If anything, I'm here if you want to vent or need support....I may talk alot but I'm a good listener 

Beth

[paris]

Beth, you were definately meant to find IHD. Isn't it amazing how people respond on this site?  We have even more in common--I read your Mom's PRA as her age, but realize now that we are almost the same age. My Beth is my youngest child, but she is the one who worries about me the most.  Must be something about the name "Beth".  And guess what?  I live in
Raleigh!!  I love it here. Lived in several other states, but this is a good place to call home.  I am hoping for good test results for all of you and your Mom can have the transplant. We are not having luck with donors matching.  It is a very emotional rollercoaster.  We feel such hope and surgeons are telling us this can be done soon and then we hit another road block.  So, I am trying not to let it take over my life and be all I think about.  One surgeon told me it might be easier to find a non-related donor that matches since we wouldn't share the same blood. I am going on and on---but am so glad you joined IHD.  Let your Mom know that we are all thinking of her and she has a kindred spirit in North Carolina that truly knows what she is going though.

[Beth36]

Thanks, Paris!  And yes, this can take over your life even if you aren't the one with the bum kidneys.  I have also gotten started with Paired Donation and am having info sent to my mom and to myself so we can get listed with them, if need be.  It is just so frustrating and I can sympathize with you 100%.  Since I am the oldest child, I feel like I am responsible for fixing everything and being in charge, which I have no problem doing whatsoever because my younger siblings are busy and/or can't handle the emotional aspects.  They have never been faced with any sort of medical issue, such as my hubby and I and I feel like I am better prepared for handling my mom's situation because of that.  Anyway, you are very lucky to have a supportive family and people willing to help you and I am hoping everything works out for you as well!!  My husband has a big project coming up in Raleigh and we will be there for 7 years at least, so next spring will be when we start getting our house on the marked and looking seriously for homes.  We haven't decided if we want to build or not.  Building might be a pain but who knows?  Anyway, I am so happy to have found this site and all of you wonderful, supportive people.  I am much more at ease with my mom's situation and feel like we can overcome any challenge, we just have to put our minds to finding the solutions!  Tomorrow, I will know who (between my hubby and me) will be the better match (or if neither of can do it) and then my sister goes up against whoever has the lowest numbers tomorrow in what we call "the lightning round" to see who will be the ultimate donor.  Sorry if that sounded "Survivorish" but I am totally into reality TV...I guess my IQ has dropped significantly since my addiction to it. Please keep me posted on your situation as I am genuinely interested and pulling for you and everybody else with high PRA!  I'm hoping we call all kick this 

   Beth

[Jill D.]

May the best kidney win! 
Your mom is so lucky to have you as a daughter. Not only are you trying to help her find a kidney (including your own!) but you have taken the bull by the horns with your research and seeking a solution. We're so glad you're here. 

[Beth36]

Awww thank you....you're gonna make me cry!  My youngest sister called me today to tell me that she did have a positive crossmatch but we expected this with the antibodies.  She did say that the nurse told her that my mom has 10 antibodies and my sister only has one in common with my mom.  I don't know what that means.  I wasn't told anything about antibodies my mom and I had in common, just that we were a 3 antigen match--as was my sister AND my hubby (which I thought was cool).  I don't know.  I need a beer after thinking about calling the Mayo Clinic tomorrow for the results of my flow crossmatch.  I am so nervous, I could seriously eat an entire pan of brownies...oh wait, I did that already today    Oh well, better get my fat butt to the Y tomorrow and ride that bike until it falls off.....will post results tomorrow!  Hope everyone is doing well tonight!!

Beth