Alison's MRIs

Here is the happy ending of this story:  I was informed this morning by a nurse at the Duke Brain Tumor Center that my recent MRIs show the tumor to be "rock solid stable"--in other words, it hasn't grown a bit.  This is exactly what I wanted to hear.  Great news, and a huge relief.

Here is the crucial lesson I've learned that has helped me to find my way to this happy ending:  I'm not responsible for administering or interpreting my own MRIs.  I am, however, responsible for every single other thing in the medical process required to monitor my post-surgery health.

Starting around June 10, I have been in contact with my main go-to nurse at Duke almost every day (not including weekends) either via email or phone (she is, fortunately, a very nice person).  I got in touch with her because the calendar on my phone got wiped out, so I needed to know when my follow-up appointment at Duke was.  Our initial conversation triggered a series of epiphanies for me.  I gradually learned

  1. That it's my responsibility to keep track of how often my MRIs are supposed to happen.
  2. When it's time for the next MRI, I need to contact the folks at Duke and have them fax an order to the folks at MUSC (so this means I need to have the fax number at the ready).
  3. The next day I call the folks at MUSC and set up the appointment.
  4. Then I go and get the MRI.
  5. After I have the MRI, I need to go stand in the medical records office for thirty minutes or so to make sure that they send the MRI back to Duke.
  6. Even after they promise they've sent the MRI back to Duke, there's a pretty good chance they didn't, so I need to call Duke to find out if they received it.
  7. They probably didn't receive it.  For instance, I found out June 23--when I asked--that the Duke folks never received the MRI from April 6.  Which means that no one had examined any of my post-surgery MRIs.  And no one had apparently noticed this fact.
  8. So the best idea is to go back to the MRI folks at MUSC and get my own CD of the MRI and then Fed-Ex it to Duke.  With a tracking number.
  9. Then call again to make sure they got it.
  10. Once they've gotten it, I need to let them know that I'd like to have it read.
  11. Then contact them again, to see if they've had the opportunity to read it.
  12. Then contact them once again, just to see if by chance they've gotten around to reading it yet.
  13. And then the happy email arrives, with news about the reading of the MRI.
Now that I know what my role is, I can do it.  But I was a bit surprised to find how important my own assertiveness is to this process.  I have loads of resources at my disposal--time at work to make calls and send emails, interpersonal skills that allow me to be friendly and sympathetic but just the tiniest bit pushy, good insurance, excellent scheduling software, the ability to keep track of lots of tasks--and I wonder what would be happening if this weren't the case.


Trey said...

So much for customer service. That's absolutely horrible.

Aaron said...

strange, strange world of health care...

Did you wait 2 months before you checked up on the mri's?

Kenneth said...

Congrats on the wonderful news! I am so happy and relieved to hear it.

The Mom said...

That's really good news, Alison. I probably could have told you that you'd need to be on top of things yourself, but I guess you'll probably remember it even better learning it as you did. Your experience is pretty much what I'd expect from the medical community. And knowing that we're responsible is actually a very good thing, and the best way to get the care you actually want, vs. what someone else thinks you need. You need to be very much involved in the dialogue, not just taking "orders". I think you knew that before, but maybe just not to this extent.

I love you!

Biffle said...

this is the best thing i've ever heard. period! the love of my life has a clean bill of health. I can't ask for more.

Dr. Strange Love said...

what an excellent update, Alison. From a mental health perspective, I'm in a very similar boat. And given that my disorder and its medications have changed my relationship to my ability to concentrate, it's been a very useful challenge indeed to keep track of everything. (Handwritten to-do lists ftw, that's all I'm sayin')

Congrats on your epiphanies regarding your process. Hoping and wishing that continued good news comes your way.

my word capture is "brairant" so I'll leave it at that. we don't need brain rants, we need to continue our good self-care practices. :)

Quiche said...

Yay! So glad you are free and clear! Infinite blessings, and much love to you! I admire your proactive stance- the only way to be!