Lots and lots of purrs, best wishes and very gentle hugs,
Polonca and Soncek

Sounds like they are lacking some good administrative staff. They may be
excellent doctors, but may not be so skilled administrators. I know, I
work with scientists. ;o)

Anyway, purrs ongoing, Kili. Hang in there!

That is unusual for the Mayo Clinic proper, that's for sure.
Maybe what you are experiencing is a fluke in the
satellite facility.  Have you mentioned this to your
main doctor there?  They have a certain pride in their
reputation there, and they (the staff) will likely be
seriously abashed if they get taken to task by their
own doctor.  On the other hand, if it's the doctor
who is making decisions and not properly informing
the correct staff, you might need to ask to speak to
someone in their office management about having one
person assigned to you as some form of primary
coordinator.  Then there would be one person whose
responsibility is to pull all that stuff together for you,
and whom you could call if anything like this keeps
happening.  If different departments are involved, it
might be a case of too many cooks in the kitchen.

They certainly should be understanding of such a request
when you remind them that a five hour drive and a
husband taking leave from work is involved.

Also consider the possibility that once you are past
the postop stage, if you are given the green light
for a clean bill, you might be able to find a closer
university hospital where you can seek a good
hematology group capable of handling the
hemochromatosis diagnosis.  If you don't need
any type of medical or hormone therapy postop,
then you should be like any other patient when
it comes to dealing with the iron issues.  And
the nutritional consults, etc.  (I'm sure they have
at least told you to avoid red meat and liver, by
now haven't they?)  Also, if they haven't told you,
don't be too concerned if they mention the
possibility of needing transfusions during or
immediately after surgery.  Normally they aren't
good in hemochromatosis, but if they are
necessary for recovery from actual blood loss,
then it's a case of iron-out/iron-in and your
actual iron balance won't be too badly
disturbed.

E-mail me directly if you have any other
questions, my addy is unmunged.  If you
let me know where you are, I'll see if I know
any good groups in the area treating
hemochromatosis.

--tension

Oh boy, I would be so upset. You don't need surprises like this when
you're sick and have been waiting by the phone for 2 weeks. I'm so sorry
that happened.

I hope they can get you in quickly next week. Hope it's behind you soon!

Rhonda

Seriously, become the squeaky wheel.  Believe me, sometimes you have
to, and this is serious stuff!

FWIW, John Hopkins is the same way. I was rescheduled more than once
(and we had plane tix!)  I had to track down my results and had to call
3 times before they'd release them to me.  Ridiculous!

Hope all goes well with your surgery, Kili.  Please let us know in RFC
when it is scheduled.  I don't read here often.

-L.

Am sending healing thoughts and asking the owners (as if I have to) to
continue to send purrs for you and your family to make it through this with
flying colors.  Please give my sympathy and best wishes to your hubby.  We
also have to play the motel/missing school game whenever Rob has to go up to
Chapel Hill.  Its is a 2-3 hour drive depending on conditions and I can't
drive after dark.  So a motel room is a necessity for us too.

Pam S.