Oh well the "List" isn't so bad

[lola]

Kim, Otto has been on the list 2x's. The first time he only waited 4 months but we never "waited", when the call came it was a shock. He has been on the list this time now for 15 months and again we don't wait by the phone since they said we probley will never get one because of his antibodie level. We have had over a dozen people tested and at first we ALWAYS got our hopes up but now we tell people not to get THERE hopes up because they always feel so bad when there told sorry you don't match. I feel your pain It's so hard but please keep the faith and when someone offers to test let them you just never know where your "HERO" is.

[okarol]

Hi Kim,
I am sorry to hear this but I agree with lola. You never know where your miracle will come from. Each disappointment is just a step toward your goal. Have they explored doing plasmapheresis? Hang in there and don't give up. 

[stauffenberg]

It is important not to confuse antigens with antibodies.  Every human being has antigens, which represent the immunological signature of all their tissues.  While the life expectancy of a transplanted kidney is improved if there is a good antigen match between donor and recipient, for live donors antigen matches are relatively unimportant, since very good results can be obtained even if the kidney is a poor or even a zero antigen match for the recipient.

Antibodies in the context of renal transplantation refer to pre-formed antibodies to the kidney of the potential donor.  If a cross-matching (as opposed to antigen matching) determines that there is a high level of pre-formed antibodies to the donor kidney, there is a danger that if the organ is transplanted into the recipient, there could be an acute or hyperacute rejection.  Plasmaphoresis can help reduce the level of pre-formed antibodies, but if these still remain high, immunosuppressive induction treatment using dangerous drugs like OKT3 or some of the monoclonal antibodies can overcome this hurdle and allow the body to accept the organ.

If anyone tells you that your potential live donor has been turned down because of a problem with antigens (as opposed to antibodies), they are lying, since a zero antigen matched kidney from a live donor can still offer good results.  As absurd as it seems, the ethical consensus in transplant medicine is that the morally proper response for a transplant testing team to a situation in which a live donor who is a medically suitable match suddenly loses the courage to donate is to LIE TO THE PATIENT and make up some bogus medical reason why the potential donor could not donate.  This is all done to spare the potential donor any embarrassment or moral opprobrium, which for some reason is considered ethically more important than being honest with the patient to whom the transplant team owes the highest duty of care.  This is yet further evidence of how stupid the medical profession is with respect to issues of medical ethics.

[okarol]

I assumed you meant antibodies Kim, not antigens. Is that what they told you?

[kimcanada]

I am 90% sure they said antigens, some "new" test... this is the second time I have heard this.

[okarol]

I would ask for clarification. A donor can have a O out 6 antigen match and this is no longer an obstacle to donating.

[paris]

I am sorry, Kim   Today someone asked me how the donor testing was going and where was I one the list.       I replied that I just don't think about it much anymore. No new potential donors to test (6 down) and I can't focus on something that may not happen.  I understand so much about not wanting to get your hopes up. The let down is really hard.  So, we'll just keep hanging out together and I'll keep praying for your turn to be next.  Shall we learn to knit or crochet while we are waiting?  Or take up oil painting?   I am so very sorry this one didn't work out.  I am here any time you need someone

[rookiegirl]

Kimcanada,

You are not alone.  I'm on the same boat as you.  No living donor.  I just did make the list last month.  I'm very thankful that I made the list after waiting 8 months.  Now, I'm praying and waiting patiently.

[kimcanada]

I have to tell you all something, you all have a great way to put things into perspective.  When I wrote this I felt so alone and the only person in the whole world that would be going through this...  thank you all for your kind words,  they helped so much... Paris we are going to do this "waiting" with class my friend

Kim

[Romona]

 

[Psim]

we are going to do this "waiting" with class my friend

You are both incredible.

[MyRenalRomance]

Hello my Canadian hockey friend,
I'm so sorry to hear about your disappointing news.  You are in my thoughts, and I will be hoping good news for you EVERY DAY!
Keep your chin up . . . you never know when the phone will ring with some terrific news on the other end!!!
 

[kimcanada]

Thanks Psim & MRR,
I feel better already, well getting there, I mean you know how you should feel, and why you should feel the way you should, just sometimes your feelings get in the way of that

[kellyt]

kimcanada, keep thinking positive, we were told the wait was 5-6 years and Len got the call in 11 months, so you never know. I pray for quick. 

That's is encouraging!