Hospital Land Part III

Thankfully, being an advocate for myself paid off and Tuesday morning I met with a neurologist.  Well, he was the intern for the neurologist.  As I rapidly fired off questions of cerebellar herniation, CSF levels, and the possibility of going back in to do another decompression with a shunt I almost felt sorry for him as it was clear he was in over his head.  Within an hour, Dr. D (the neurologist) came in to talk with me.  I knew a little about him from being a frequent Bassett visitor both inpatient and out, though I didn't really know if he was a progressive or conservative regarding pain management.  I quickly relaxed when he went out and got a chair to sit in so that we could talk.  The fact that he clearly was willing to and planning on spending time with me put me at ease immediately.
We discussed my unusual genetic makeup and my non-reaction to any opiates or narcotics.  He seemed calm and brought a sense of serenity that I had not felt before.  He answered all my questions, agreed that more surgery was extremely unlikely to be beneficial and discussed with me using DHE (Dihydroergotamine) to bring down my pain.   I liked that he never said they could get rid of my pain (that is a dead give-away that the person has no clue) but that we could bring it down to a manageable level.  The DHE was a 48 hour treatment which could be extended to 72 hours if it were helpful.

It took us a couple of doses to find the right order of things (DHE causes severe nausea as well as some other side effects that were able to be minimized by timing the medication just so) and it brought my headache down from a 10 to a 7.  Huge progress.

We continued the DHE through Thursday evening and decided that a few extra doses would be good.  I had moments where my pain was a 6, which for me, is usually unimaginable.  I left the hospital on Friday after an 8 day stay.  Throughout it all, I believe that my ability to advocate for myself is what led to finding the right doctors and the correct medication.  Mine is not a simple case and finding a group of doctors and nurses willing to work together was the important piece of the puzzle that I gladly (and rightfully so) give them credit for.  The nursing staff worked tirelessly to ensure that I had a chance for sleep (no blood pressures at 3 a.m.) and they did everything they could to keep my room quiet.  The doctors wrote the orders but the nurses carried them out with compassion and professionalism.

This experience affirms things I already knew but feel important to share.  1.  You have to be your best advocate.  If I had not asked for neurology to be brought in to consult on the CT scan, I never would have met Dr. D and never would have had his input and expertise to try DHE.  2.  You need to know your illness.  Read everything you can so that you know the questions to ask.  3.  Use your nurses as advocates - mine were amazing and I cannot thank Bonnie and Christina enough for their tireless work, constant support, and true advocacy.  4.  Know your limit on pain and speak up when you are nearing it.  Don't wait until it is a 10.  I still have a tendency to do this as I am always convinced that this time it will magically go down and I will be able to continue doing what I want when I want - this is not the case.  5.  Don't be afraid to offend your doctors.  Yes, you need them on your side but you also need them to know you are aware of options and are going to advocate vociferously for yourself.   I am sure that the pain management team was not pleased that I called their imitrex solution a "first year medical student prescription" but I got their attention and made them think harder, re-read my file and either admit that they didn't have any suggestions or bring back a better one.

Our medical system needs an overhaul - which almost all of us agree upon.  However, I am proposing that one of the most important aspects of change that hospitals need to implement are the use of patient advocates.  Nurses who have 10 and 12 patients to care for cannot adequately advocate for each of them.  Patients are in pain or medicated or both - none of which lends itself to advocation well.  Until we ensure that every patient is heard and cared for, we are not doing the job we should be.  I was able to advocate because I had been down this road many times.  However, Tim could not be at the hospital like he usually is and I was often alone.  Imagine how differently this story would have unfolded had I been alone AND unable to advocate for myself.

If more doctors (and hospitals) remembered the words of the Hippocratic Oath as re-written in 1964 by Dr. Louis Lasagna, there would be less suffering and more understanding of chronic pain and invisible illnesses.

 I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.