The c word.....

[paris]

Thanks Michelle and Aleta 

MM no he doesn't get counseling...except for when him and I have our long chats in the car. We probably both need it actually, maybe I ask him to sign up with me somewhere?!

Just like the dominant form of PKD, the recessive has no cure either. You can test for the condition invitro though...

Right now he is on the list, but his PRA is 99. So if he gets a call it will be like winning the jackpot! He needs to get that treatment plasmapheresis to lower his PRA. He says next summer 2013 we are going to make a road trip to the MAYO clinic....

My uncle facebook me about a week ago asking who he needs to contact about donating his kidney to Neil, but I am unsure how steadfast and committed any of my extended family would be about donating....with the PRA lowering it is going to be a journey to match Neil....I don't see any of them being able to commit to donating that long....

Thankfully all he needs is a kidney right now...no liver...yet......but we both are evaluated for liver transplant from year to year....

love,
R

Just wanted to give you some hope regarding PRA.  Mine was at 99 or 100 everytime it was tested.  No one matched and the surgeons said it would be like winning the lottery if one ever did.  So, I stayed on the list, but wrapped my brain around "never getting a transplant". I did go through infusion treatments; IVIG and Rituxin for a month to help lower the PRA.  The number never went down at all.   5 years later, my co-ordinator called and I was number 5 being called in for a potential donor.  Hmmmm!  I went throught the motions, knowing it wouldn't match.  This donor didn't have 6 different antigens, he only had 3. Highly unusual. But, easier for me to match.  Although, there were a couple who could have received the kidney, I was the hardest to match and this was my one shot. So, it was mine.  My miracle, my once in a lifetime and I think it was so I could give hope to others with extremely high PRA's.   I will be watching and looking for new updates.  And keeping you both in my prayers.  Hope- it is what we always need to have. 

[MooseMom]

Yeah, whenever I read a story about someone who feels hopeless because of having a high PRA, I think of you, Paris!  Our IHD miracle!

[rsudock]

THANK YOU Paris for sharing your story...so true there is always a kernel of hope. I needed that wonderful story today...I'll always hold out hope for Neil. 

Neil has still been in and out of the hospital....last saturday I picked him up from Cleveland his hemoglobin level was down to 5. He hasn't been getting the fevers but he is still having bleeding. THey made him swallow this little pill camera and referred him to see a hematologist for a bone marrow aspiration to see if he is not producing the red blood cells or what not....he doesn't want to do the bone marrow aspiration if he doesn't have to...(he has had one before so he's a bit nervous) so he is going to wait and see if the pill camera shows anything....

Thanks for all the kind words!!

xo,
R

[MooseMom]

Oh man, you two kiddos have really been through the wars...

[chook]

  from me as well.