Monday, May 12, 2014

AAAAAAAaaaaaaaaaaaaaaaahhhhhh !!!

Walked for about 25 minutes, but was just too tired to keep going.  Came back to the room and passed out.

Woke up when the phone rang.  It was Mayo, telling me that Internal Medicine has referred me back TO the SAME Chief of Allergy that I saw ten days ago -- the guy who didn't want to run tests to figure out what drug tried to kill me.

That's special.

But that's not why I'm screaming out.

When I stopped in the lab to pick up my P450 DNA saliva specimen kit, I asked for help tracking down my lost stool sample test results.  

After a series of phone calls, the very helpful lab tech found out that the results HAD BEEN ready since my b'day (5/2), and in the system for the doc to review.

I've asked the doc three times if she's seen the results.  Nope.  The third time was this morning, before chatting with the lab tech.

This afternoon, I received the following reply from the doc:
I don't see any stool result. As a matter of fact, I don't see orders for stool.

Yes.  THIS is what I'm screaming about.

I called the Lab Tech.  Can you please tell me who ORDERED the stool test ?  Sure.  It was Dr. Yan Bi, the Fellow in Gastroenterology.

I told her what Dr. Bi wrote to me.  

Chris was very frustrated.  She's going to call Dr. Bi, and explain to her how to look up a lab result in their system.

I said ... "Chris ?  Somebody ordered this test, right ?  I mean ... you guys didn't just hand me a random specimen container, and ask me to give a stool sample, right ?  Somebody DID order this for me, right ?"

She laughed.  "Yeah," she said, "Dr. Bi ordered it.  I'll have to call the doctor and have a little chat with her."

Thanks, Chris.  Thanks a lot.

Mayo is a big system.  Big systems are imperfect and disorganized.  I know that.

But this piece has been hugely frustrating.  Dr. Bi is a student, and she's making some pretty rookie mistakes at my expense.

I also mentioned to Dr. Bi that I'm a bit disappointed that -- as the patient -- I have to self-refer to Internal Medicine, in order to get a more thorough approach to getting the correct diagnosis.

To that, Dr. Bi responded
Usually it is easier and faster for patient to get Internal medicine consult than referral from a specialty clinic.  
You have been evaluated by our allergy department who recommended checking HIV and IgG for you. You have also been evaluated by our genetic department who does not feel like you have a mitochondria disorder but recommend a pharmacist consultation. 
[Yeah.  I know what HAS happened.  We don't move the ball forward by telling me what I already know.]

What I don't know is .....

  1) Why nobody seems interested in finding out -- for sure -- which drug did this to me, when it seems infinitely possible and relatively simple

  2) Why a guy with a diagnosed IgG Subclass Deficiency isn't being evaluated when his total IgG level (the sum of the level of all the subclasses) dropped 15% through this liver crisis

  3) Why I wasn't given an appointment with somebody to 'manage' my care, from the beginning

  4) Why she doesn't think I ever took an anticonvulsant

  5) Why I NEED to self-refer for something (like DRESS Syndrome or Anticonvulsant Hypersensitivity Syndrome) if it fits the facts.  I can't believe a cancer patient has to decide that he needs to see radiation, oncology, surgery, infusion therapy, etc., for themselves, and then call each of those departments, try to convince them that he has cancer, and then beg for an appointment

  6) Why I have to work so hard to get HER the results for the test that SHE ordered, particularly when she swears she never ordered the test in the first place 

  7) Why the Genetic/Mitochondrial doc and the PharmD guy had to suggest the P450 testing (instead of Allergy or Gastroenterology/Hepatology).

Actually, Dr. Bi .... what HAS Gastroenterology/Hepatology done, so far ?  Told me that it was a Drug-Induced Liver Injury (I don't think so), and that I should go to North Carolina ?

So far, this is a very frustrating experience.  Let's hope it gets better as things move along......

Doing this medical thing is hard enough, Folks.  Fighting the system .... well ... that takes a fire in my belly that's been absent for too long.

Stay tuned.......

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