finding out your anti-body's

[marlinfshr]

I keep reading posts where people know their antigens, antibody's or whatever and where they stand as far as possibility of getting perfect match. Not worried about placement on the list as I understand that comes with time and a perfect match will go to a newly listed candidate over one who has been listed for years if it's not perfect for him.

I have been active only since January of this year so I still have plenty of time. I do remember them saying at my initial evaluation last year that there is about a 3 to 5 year wait for my blood type.

My question is how do I get that info? All I ever get is a letter from them monthly or by-monthly which reminds me to have my clinic send my monthly blood draws to the transplant and states that my status is active. I guess I should call and ask as perhaps this hospital doesn't automatically send out that info.

I called after I had the bypass to let them know and gave them my info of where it was done so they could get the records. I thought I would receive an update putting me on hold until a stress test or something but I did receive another blood test reminder today with current status active.

[iolaire]

All I ever get is a letter from them monthly or by-monthly which reminds me to have my clinic send my monthly blood draws to the transplant and states that my status is active.

I'd love to get that frequent of info to confirm that I'm still active. 

I got a letter to say I was listed and talk about the labwork three years ago.  Then after that the lab boxes and tubes each quarter and a reminder if I'm late but otherwise nothing.   So now three years later I get a letter from my insurance co re authorizing a transplant for three years!  Luckly since last nov. I've started to get some calls, so they talk to me a tad about my status, and I know that I've moved from about number six to number three or so.  For the longest time there was some worry about if I was active and they had me in the right status, it would have been nice to get a periodic letter.

So to answer your question I don't know my antibodies, but I am told the level of my alternate staus when they call.  In three and a half years they have not asked for any additional tests.

[rocker]

We've always had to ask.

[Angiepkd]

I asked specifically what my antibodies were during my pre-transplant testing.  I got a kind of vague answer like 3-5%.  My coordinator acted like it was odd for me to ask.  She said if they were high enough to be a problem, I would be told.  So, in my experience, if they haven't mentioned it, then it probably isn't an issue.  After my transplant, I was put in the moderate rejection risk category because my husband was my donor, and we have children together.  They worry that I could have developed antibodies to his DNA during pregnancy.  I have to admit the whole antibody thing is still a little confusing for me.  Call and talk to your transplant coordinator.  They should be able to tell you.  Best of luck to you!  Hope you get the call soon!