GRAND ROUNDS PART II

I could get very used to speaking in front of medical professionals, residents, fellows, and any other labels that society has placed on these humans who have been called. to FIRST, DO NO HARM.

Recently, I spoke with a few hundred of them and explained how and why HARM had been DONE to me, not on purpose, but through a series of unfortunate missteps that nearly cost me my life.

Luckily for all you poor bastards out there, my work on this Earth is not quite finished. This means that ALL of you who care to do so, will be listening to me spit mad game until such time as I am fully silenced. In leaving this blog behind, I’ll NEVER truly go away. You’re welcome. Thinking of that is good for my ego. HAHA.

So, a bit of background. I have made friends (yeah yeah, I know….good for me) with a wonderful pulmonologist (lung doc) who practices at Nationwide Children’s Hospital in Columbus Ohio. Years ago, while we were at a muscular dystrophy conference, run by PPMD, this doctor asked me to come to his hospital and “do grand rounds.” I pretended to know what that meant and played it all cool. Great, I loved the Ground Round in college. Decent steak and good burgers. (I’m up to 32 this year BTW).

Fast forward to now as we finally set this up with planning begun in August. I searched this Grand Rounds thing on the Google Machine and found that it started a long time ago at hospitals kind of like a TED talk but with patients on display, sometimes with rare conditions, while doctors and other professionals used the patient for others to study, diagnose, learn about, and treat.

Then all kinds of privacy laws were written, HIPAA came along, and we couldn’t have anyone knowing too much about anyone else, unless you have and use a cellphone. Then you are tracked, marketed to, studied, and so on, but I digress.

So no one wanted to make anyone feel bad about themselves or others, so Grand Rounds became a thing where medical people speak about medical things. At many hospitals, Grand Rounds are held weekly, early in the morning, and NOT something that is eagerly awaited by hospital staff. I had memories of attending my music history class in a poorly lit college recital hall, which took place three times a week at 8AM with an old professor who looked suspiciously like Gargamel from the Smurf’s cartoon. This prof. told us that he held his class early on purpose to weed out the slackers. We listened to Gregorian Chant while he sipped coffee and rambled on about the origins of written notation. It was brutal. If you showed up at 8:01 the door to the recital hall was locked….with a chain. I’m not kidding.

So I needed to make sure that my Grand Rounds talk did not go like that. I briefly entertained the idea of having Gregorian Chant as my welcoming music, but it felt a bit “Monty Python and the Holy Grail,” so maybe not so much.

Instead, for an hour, I told my story. I mixed life, illness, marriage, kids, jokes, tears, kindness and discrimination of the disabled. I spoke about how ER and ICU doctors are always facing families that are in crisis, and need to be aware that people in crisis cannot always think clearly.

I spoke about the need to treat the person first, and the diagnosis second.

I spoke about the fact that doctors are not God and it is ok to ask outside medical experts for advice and guidance when dealing with a rare disease.

I spoke about how it is paramount to get to know the family, as they are the experts of what the patient is like at home, in the community, and are the BEST source to paint a true picture of the quality of life that the patient is used to.

I spoke about the need to better communication between working shifts of hospital personnel. Everyone is always “charting” and “making notes” but when I was sick, the night people often had no idea about changes that had been made that day in my care. Vanessa took to hanging signs on my hospital window and medical gear that were written in sharpie with notes for staff to read. Unacceptable. Needs to improve.

I spoke about how devastating it is to someone in the ICU who is experiencing terror at every noise only to hear an IV or some other machine suddenly beeping loudly at 3AM only to find out that it had a low battery or had run out of dripping medication. Dear Medical People: You need to tell us that. An alarm goes off on a machine, and I thought my heart was blowing up. TALK TO US PLEASE.

I spoke about how I was on all kinds of drugs, but have a pretty clear memory of doctors speaking about me in my room like I wasn’t laying there. Careful. Patients can hear you.

I spoke about how wonderful and professional the vast majority of hospital staff was, is, and will continue to be. I know that all of them are in this for the right reasons: to help people.

Between the conference room and the online feed, my talk reached over 300 people. I tried to educate, entertain, take questions, listen, and learn.

I’m told that a video will be made available and when it is I will share it with all of you. I need feedback. Although this was my first time speaking at Grand Rounds, I don’t want to it to be my only time.

Also, at heart I am a musician, which means I will work for food.

Let’s talk. I like to talk. I’m talking now. To myself. Thanks for reading. I’ll be here all weekend. Please try the veal and be sure to tip your waitstaff.

Stay safe, stay awesome, and stay tuned.