Transplant quest frustration

[paris]

I am having a very "down" day and need to let go of some of this frustration.  Many of you probably have read bits and pieces of my adventure with tranplant teams. I have 100% PRA so even though I have been on the "list" since 10/05, chances are extremely slim for a cadaver transplant. So, I have been trying to get into a sensitized program at Johns Hopkins and Carolina Medical Center. My son and I have had blood work at Johns Hopkins and they called saying he matched 5 out of 6 antigens. We were thrilled. It still meant plasmapheresis, but not as many treatments as first expected.  Yesterday, I had a full day at Carolina Medical Center going thru the routine visits with co-ordinator, financial, social worker, routine labs, etc.  They will get our blood workup from Johns Hopkins. It was a great day and for the first time in awhile, I had hope. They are ready to schedule my sons tests and appointments, scheduled my appointment with the surgeon, so we were smiling when we left Charlotte.  On the drive home, Johns Hopkins transplant co-ordinator called on my cell  to explain that after futher testing it has been determined that my son is pre-diabetic. Of course, he can't donate a kidney.  When I was talking with him, he started crying --- he is so disappointed and feels like he let me down. As the Mom, I am more concerned for him. Strange thing is, he is the most fit person - 9%body fat, eats healthy, works out an hour every day.  The testing they do on the blood is so fine tuned, but I am glad he has this information early (34).   So, finally I find a sensitized program that will take me, and now I am without a donor. Do you feel like you just can't win some days? Today, I would just like to pull the covers over my head and forget this stupid disease.   Oh, the good news is that I have great insurance coverage!! $500 deductible, 90% payment and no lifetime cap.  I am tired and can't even think of where we go from here.  Feeling just a little sorry for myself today and I am tired of being optimistic.

[Sluff]

Aww Paris hon I feel your frustration and especially for your son. Can they redo the test to determine if maybe there could be any mistakes?

How can you tell if someone is pre-diabetic? Never heard of that, unless it is the same as borderline diabetic which means your son should get screened asap.

Sometimes I wish I was God and could fix everything but I can't. I pray that someone comes forward that will be the perfect match, you deserve it.

[jbeany]

Sorry to hear this - time to time a knot and hold on tight!

 

[Rerun]

It is OK Paris.  Do it!  Just pull the covers over your head and stay in bed for a day and forget about this disease.  For a day.  Then get up.   

[kimcanada]

I am sorry to hear this 

Kim

[paris]

Thanks everyone for your posts. The second part of my stress starts tomorrow morning. My mother died 3 years ago and my stepdad has never let us back in her house (she bought it years before he was around). He is putting it on the market and we have the next few days to get her things. He has already moved his things out. He has contacted the local police to make sure they know we are not trespassing.  Trespassing in my own Mother's house!!  It gets better - only the four siblings can be there; no spouses. My oldest sister hasn't spoken to me in 12 years and my youngest sister is MUCH sicker than I am (just ask her!!!) and has had little to do with me since I was diagnosed. Fortunately, my brother and I are very close. So, I fly to Ohio tomorrow to spend 4 days with my siblings. My daughters keep saying that they (the sisters) are going to kill me in my sleep! (it would solve the transplant problem!). I am going to be Switzerland --- just try to keep the peace.  I forgot, I have one more brother, but he couldn't be bothered to come to the funeral and isn't coming for this fiasco weekend.  Now, we may sound like a sorry little group, but my Mother was a very big person in the camping field across America. She was a pioneer in creating camps for the blind, deaf, handicapped, etc. She was a single Mom of 5 and made a great life for herself. She is even in Who's Who of American Women.  So for us to be treated this way---well, I don't need this stress. But I do need to walk through her house once last time and hopefully we can all focus on the years of good memories we had there.     Back to the transplant topic, before I am moved to another topic!!!!!   Johns Hopkins did every test known to man on Adam's blood. Amazing what all they can find out.  They said it was more extensive than DNA testing.  They redid what ever test they were concerned about and had the same results. His local doctor will now work with Adam. But, Johns Hopkins says no for donating.  I haven't even told my best friend or co-workers about this new bump in the road. You are the only ones who can truly understand how I am feeling.  I will be gone until next Wednesday. If any one in the Columbus, Ohio area hears about siblings killing each other in their dead Mother's house --that would be me!!   On the bright side, I can get Donato's Pizza and White Castles!!!!!!!  Yummy --- I know, not on the renal diet. I could care less today!!!!!!  Thanks again -- you all are great

[Jill D.]

Paris, I'm so sorry to hear about this turn of events - for you, and for your son. Sounds like you will have a "distraction" from these problems for the next few days...I certainly hope your siblings can be civil enough to you to not add to your troubles!
I will keep you in my thoughts and prayers....

[anja]

   So sorry for your strife, Paris, that is a whole lot to bear at one time.  Hopefully all will go well at your mother's house and you can come away with some good thoughts, no matter what the circumstances...  Best of luck on your trip~ and finding a donor!   

[Pianolion]

Please know you'll be in my thoughts...family strife is so hard to deal with, not to mention all your medical difficulties and stresses.  Just take care of yourself first and foremost, that's most important right now.  Also, have some red wine - the cure for all that ails you!  

[kelliOR]

paris,

just read your posts.  Sorry to hear about Adam and the transplant news.  I hope things get better for you.......and hope you had some White Castle burgers..Haven't had one in 20 years!  No one in OR that I know has ever had one.

Peace,  Kelli

[Sluff]

Hope things are a little better today. 

[paris]

I am home and the first thing I read is about Bill. My problems are small in comparison.  Strange how you can miss someone you have never met. He made us a family.  Thanks for the supportive posts. You are all great.  The Ohio adventure was extremely bad -- will post that in the proper thread!   Johns Hopkins wants to redo some of Adam's tests-- so, we shall see.  I have learned not to get my hopes up.  Wish we could have found  a kidney for Bill. He was a hero and deserved a long life.