feeling a bit down

[karen547]

My transplant coordinator phoned me this morning, and I'm still not active on the list, even though I had my blood test for my latex allergy. I know she needs the results, blah, blah, blah, but I just hate thinking that my chance at a kidney might be missed, even if its only been a few months. I mean I realize the wait time is usually 3-4 years but I guess I'm feeling like she doesnt care as much as she should, after all it is my life that is in the balance here!

[okarol]

I don't blame you karen, it is very frustrating. Call her every week and ask her what's happening and how soon you can expect to finish. If we had to do it over again I would be more involved. We kept politely waiting, thinking they were doing "something" but it turns out they had some staff changes and Jenna's file sat for a couple of months!

[karen547]

I just keep thinking if a kidney becomes available they will go ''oh shes not 'active' '' skip her! and that seems so unfair to me

[boxman55]

they take their sweet time stay on them but don't be overly pesty you want you coordinator on your side. Boxman

[paris]

It is a slow process and it seems like when I thought all tests were done, suddenly they would figure one more thing to test.  Then, I went to a second center and they had a different set of tests.  I know it is for my benefit.  This disease teaches us patience. Stay in touch with your co-ordinator, but keep on their good side.  They are part of our lifeline.  Some tests take a long time to actually get the results.  Hope you hear something soon.

[Sluff]

Hang in there karen.

[goofynina]

I just keep thinking if a kidney becomes available they will go ''oh shes not 'active' '' skip her! and that seems so unfair to me

Sorry to hear that Karen but even if you do get on the list, isnt there a waiting period?  Dont you want to make sure that they get EVERYTHING fixed now  (or just make sure that everything is ok) so that way when the time comes there will be no delay?  I'd hate for you to be waiting for one now and if one comes up they find a problem and then cant give it to you, i dunno    just my 

[Joe Paul]

Last year, I went through all testing. I kept receiving letters from the transplant team saying they never got results for any of the tests I had been through. I was assured then it was just a paperwork shuffle, but, come to find out now, the Neph I had at that time was thinking of jumping ship,(which he did) and although he had the test results, they were never forwarded to the transplant team. I have decided to go through another hospital for the transplant and being its over a year, have to get another evaluation and have their required tests done again. Back to square 1 - So I feel your pain, but hopefully things will work out for the 2 of us....Hang in there!

[fluffy]

They never seem to care asmuch as they should. the most important thing is to be persistant and if they still dont care give em an earful of shit. just take it a day at a time

[angela515]

Yes, if one becomes available and your not on the list, your correct, you will NOT be offered... that's the point of being on the list... you get offered.

I would keep calling at least once a week to ask if the next step is done yet, b/c they do have other patients and can forget about you for a little bit.. they are human.

[Joe Paul]

Yes, if one becomes available and your not on the list, your correct, you will NOT be offered... that's the point of being on the list... you get offered.

I would keep calling at least once a week to ask if the next step is done yet, b/c they do have other patients and can forget about you for a little bit.. they are human.

Human yes, BUT ITS THIER JOB for Gods sake!

[carolynt]

I am meeting tomorrow with the transplant team at Columbia Presbyterian in New York City.  I have come to the terms that they may say no after they meet with me since I also had a quad bipass for my heart 6 years agao.  If it happens and they say I can go on the list - I will be thankful ..if they don't then at least I know I tried.  I didnt realize from all the notes I read that it can be a log process.  Let's hope for the best.

[angela515]

Yes, if one becomes available and your not on the list, your correct, you will NOT be offered... that's the point of being on the list... you get offered.

I would keep calling at least once a week to ask if the next step is done yet, b/c they do have other patients and can forget about you for a little bit.. they are human.

Human yes, BUT ITS THIER JOB for Gods sake!

 , And they do their job.. the point was is they have LOTS OF PATIENTS, not just one.. and some get put to the back burner when other's come in..

[vandie]

I was little Miss Patient when I started the listing process.  After a few times of someone dropping the ball, I became little Miss captain of my own ship.  I called the coordinator weekly.  If I knew I needed a test, or was waiting on results, I would call.  If they had to arrange things and it was taking longer than I thought it should, I would call with a reminder.  My coordinator became my friend.  I never nagged or was bitchy, but I was on top of things. 
These people have dozens, if not hundreds, of cases.  Unfortunately, if we don't take control of our care, they might. . .sometime, when they find the file. . . You get my point.

[okarol]

I was little Miss Patient when I started the listing process.  After a few times of someone dropping the ball, I became little Miss captain of my own ship.  I called the coordinator weekly.  If I knew I needed a test, or was waiting on results, I would call.  If they had to arrange things and it was taking longer than I thought it should, I would call with a reminder.  My coordinator became my friend.  I never nagged or was bitchy, but I was on top of things. 
These people have dozens, if not hundreds, of cases.  Unfortunately, if we don't take control of our care, they might. . .sometime, when they find the file. . . You get my point.

Well said, Captain Vandie! 

[goofynina]

I was little Miss Patient when I started the listing process.  After a few times of someone dropping the ball, I became little Miss captain of my own ship.  I called the coordinator weekly.  If I knew I needed a test, or was waiting on results, I would call.  If they had to arrange things and it was taking longer than I thought it should, I would call with a reminder.  My coordinator became my friend.  I never nagged or was bitchy, but I was on top of things. 
These people have dozens, if not hundreds, of cases.  Unfortunately, if we don't take control of our care, they might. . .sometime, when they find the file. . . You get my point.

Now THATS the way to do it    YOU GO GIRL 

[angela515]

I was little Miss Patient when I started the listing process.  After a few times of someone dropping the ball, I became little Miss captain of my own ship.  I called the coordinator weekly.  If I knew I needed a test, or was waiting on results, I would call.  If they had to arrange things and it was taking longer than I thought it should, I would call with a reminder.  My coordinator became my friend.  I never nagged or was bitchy, but I was on top of things. 
These people have dozens, if not hundreds, of cases.  Unfortunately, if we don't take control of our care, they might. . .sometime, when they find the file. . . You get my point.

Very well said vandie.. that's what I was trying to say... you go girl