Diary of a Crohn’s Flare: Someone’s ego is more important than my health

I have a weakness or strength (depending upon the precise situation) in regards to my Crohn’s Disease: I like to know every detail, see every lab result, understand the purpose of all tests, understand the nuances of my treatment, etc.

Recently the doctor sent me for genetic testing to determine whether I had enzymes for metabolizing thioprine.  This required a special package which included a cold pack for shipping my blood sample.  When I got to the lab to have the blood drawn, the person taking the blood asked me whether I had refrigerated the cold pack (I hadn’t).  I mentioned that no one informed me of any special handling required of the Prometheus pack (by Quest Diagnostics) so I hadn’t provided it with any special care.  The phlebotomist informed me that my handling was incorrect but that it’d probably be OK.

It turns out my doctor had ordered the wrong test, so I got to repeat this process.  I got the same Prometheus package but when I picked it up, I asked the doctor’s staff about the proper care and handling of the Prometheus pack.  They refused to tell me how to handle the package and said if the lab technician had questions, she should call the doctor’s staff.  I wheedled them a bit for some information but realized they were not going to provide me with the information I sought.

Anyway, the seen at the lab repeated in every detail my prior experience.  The lab tech told me the cold pack should have been refrigerated.  I told her she should call the doctor’s staff for more information if she had questions.  She refused to do that.

After getting the blood drawn, I researched the handling of the Prometheus packages and found that the type of handling of these packages changes based upon the type of test being administered.  My test did not require refrigeration, some of them do.  Some of them don’t require refrigeration but do better if the sample is refrigerated.

Why my doctor’s staff wouldn’t/couldn’t tell me this, I don’t know.  However, I am going to have a word with them.  They may be the medical professionals but ultimately my health depends upon me.  In order to make good choices, I have to know these things.  I have no tolerance for health care professionals who can’t be bothered to tell me what I need and want to know.