"You canNOT be SERIOUS!"

[MooseMom]

Had my first transplant eval in '04.  Wasn't sick enough, so they filed me away.  Second eval in Feb this year.  Was really clever and brought lab results from '04 visit along with results from recent tests like mamo/Pap.  Given 3 months to complete all required tests;busted a gut and completed everything in 1.  Got call yesterday from transplant coordinator asst saying they didn't have Pap smear results.  Told him I gave those to coordinator in Feb.  He found them and said he now had everything he needed.  Get another call this AM saying he didn't have cardiac test results.  I called cardiologist and talked them into faxing them to transplant center.  Called coordinator asst to tell him that results were on the way;they appeared as we were talking.

THEN he told me that he didn't have ABO results.  I was gobsmacked.  Told him that I was tested back in '04 and had had 13 vials of blood taken back in Feb, that ABO would have been one of the most important tests.  He faffs about on his computer and says that he had a whole shedload of results but not that one.  I couldn't believe it.  The most important test, but no.  The transplant team meets next on 15th, so time is a factor.  I'm not going to wait an extra two weeks because someone FORGOT to test/confirm my blood type.  So he faxes an order to my PCP, and I run down to the lab to have the blood drawn.  I couldn't believe it.  Do you all ever feel like you have to do everybody's thinking for them?
And I was waiting for the cable guy who never did show up....                Rant Over.

[jbeany]

I think you get today's Golden Hoop Award, for jumping thru the most hoops the fastest! 

Just in case you need some more practice - here's a few more.. .0000000000000000000000000   

[paris]

That is all I do --- always making sure A has what they need from B and then reminding them what they need to do!  And after a year on the list, you will have to renew tests -- and the next year, the next year............    It is such a visious circle and never ending.  Well, hopefully, one day it will end with a transplant      It truly is up to us to keep on top of all the doctors, co-ordinators, etc.  No one cares about us as much as we do!!   

[kellyt]

Boy do I know what you're going through.  They are busy, I'll give them that, but come on!  This is important stuff - to YOU at least, right?  Stay on them.  Apparently, all transplant staff go to the same training school because they all appear to be similar.  They did this kind of stuff with my testing donors too.  My brother had to go in early for all the blood draws.  Got to work late and all.  Then they called him a week later and said "Sorry, we didn't draw enough blood.  Come back".  He was so mad.  I don't blame him.  He had to drive all the way across San Antonio to do this and was late to work AGAIN.

I had all my testing done and then they told me I had to have a tooth pulled.  I went to the dentist and come to find out that my dental insurance was maxed for that year so I had to wait to have the tooth pulled in January.  Luckily we were in December.  Once that was done I went to the committee.  But prior to that, I thought I was on the list, or at least being processed.  I got a letter that said I was placed on the list but I was "on hold" or something like that until the tooth was pulled.  I was accruing time, but I would not be eligible for "the call" until the tooth was done.  I was finally activated on Feb 13, 2008.  I started my testing in Oct in 2007.  Hang in there!  Keep your calm.  From what I understand there is a lot of "mental testing" going on.  They watch to see how you handle stress, problems, etc.   

[MooseMom]

Yep, I've heard that I will have to jump through the same hoops this time next year, which is fine because now I know what to expect.  The hardest part really is the bureaucracy; since I'm on an HMO, I have to have referrals for some of the tests, and it was a bit of a challenge to find out for which procedures I need referrals.  Next year I will know.

I also understand that these people are busy and that I am not the only patient they are trying to list, but really...to call me and tell me that they are missing one set of results only to then find it, and then to call me back and say that they are missing other results, and then to call me again to tell me that they forgot to test me for my BLOOD TYPE..it doesn't exactly inspire confidence.  Fortunately, I'm still in reasonably good shape and can handle these obstacles, but what if I were really ill?  They shouldn't expect ill people to do much more than show up for tests and appts.  I know I should keep on top of people, but I do expect a modicum of competence.

But the asst coordinator was very nice and finally got his ducks in a row, so hopefully all is well.  I can take whatever they dish out as long as they are doing their job properly.  I can be very patient. 

[Chris]

Welcome to our club MooseMom of idiot medical personell screw ups. I'm kinda surprised that they didn't want a more current ABO test when you saw them in February just for extra comfirmation. Hope you get your cable working.

[Sluff]

Hope you had a lot of practice with a hoola hoop as a kid cuz the experience will come in handy now!    It isn't getting any better either.

[Romona]

Oh yea, know this song and dance. I was lucky, my nephrologist hand delivered things for me. I fortunately got copies of all my results mailed to me. I would fax it to him and he would take it to the coordinator. They "lost" so many things.

[Marsh]

Been jumping through hoops for the last eight months.  Finally, got everything to the transplant center, then my insurance wanted additional tests!  Now, just waiting for my official letter.

[MooseMom]

Been jumping through hoops for the last eight months.  Finally, got everything to the transplant center, then my insurance wanted additional tests!  Now, just waiting for my official letter.

OMG, it if takes 8 months, I'll just go hang myself.

[okarol]

Yes, it's a moving target. The first transplant hospital Jenna was listed at lost stuff, postponed stuff, then didn't tell us they were "between coordinators" for a couple of months so Jenna's file sat in someone's desk file until I called to find out what was taking so long. The next place she listed was a dream come true. There's definitely a big difference from one center to the next.

[paris]

You can do this, MooseMom, even if it takes 8 months!   After you are listed at one center, it is a breeze getting listed at a second one.   It took me 9 months for the first center.  We were able to start donor testing during that time, so that helped me get through the waiting period.   Again, you can do this.  You are strong and intelligent.  And the days you aren't strong enough, come here and lean on all of us. 

[MooseMom]

I lean a lot...

[Marsh]

MooseMom, the 8 months was worth it.  Got my "official" letter yesterday.   I'M LISTED!!!