Required Reading

Thursday, February 25, 2010

Reflections from a Thursday at Grady and Beyond: The Advocate



Three reasons to be a patient advocate. . .Daddy, Zachary and Isaiah
"Camp Pa-Pa" - California Summer 2009

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"I did a 10 mile walk to mark ten years," my dad told me when I asked him how he celebrated the New Year. I knew exactly to what he was referring.

"Wow, Poopdeck," I replied, "It's been ten years already? Dag."

"Yep, ten whole years on December 31. And I've never felt better."
_____________________________________________________________

Cleveland, Ohio ~ December 1999


In December of 1999, I was a senior resident rotating in the Cardiac Intensive Care Unit. Less than a year away from completing a 4 year residency in combined Internal Medicine and Pediatrics, I finally felt like I was coming into my own. Call wasn't so scary any more, my pager no longer made me feel nauseated, and overhead sirens signaling an unstable patient felt as every day as a telephone ringing. December 30, one of my many nights on call, was no different.

My pager went off a few hours after dinner time, and I noticed that it was an operator number. This almost always suggested an outside caller. It had been pretty slow that night, so I was sitting at the nurse's station eating leftover holiday snacks and goofing off with the staff between admissions. I secretly hoped it was a personal call. (Yep, this was back when you kept your cell phone in your locker and used it only for emergencies.)

"Operator. This is Drema. How may I direct your call?" a polite voice said on the other end.

"Good evening, this is Dr. Draper. I was paged?" I gave my most cheerful greeting to the operator while doodling on an index card. Maybe the call was social, but I knew that it was also a very good chance it could be an outside hospital calling for an emergent transfer. Ugggh. I hoped for the former.

"I have Mr. Draper holding, Dr. Draper. I'll connect you if that's okay." I looked at the clock, and it was nearly 9pm where I was in Cleveland, Ohio. 6pm on the west coast meant Dad was home and off work. I loved hearing from him on my call nights--he was interested in anything I told him, no matter how common. ("Sickle Cell Anemia? Wow! That's interesting.")

"Okey dokey," I replied feeling relieved that it wasn't an admission. Then I remembered my manners. "You doing okay tonight, Drema?" (Yes, I still remember the Operator I spoke to that night.)

"Sure am, Dr. Draper, thanks for asking. Here's your dad, hon'."

When Daddy got on the phone, he sounded a little bit funny. He immediately started telling me about a pain that he'd been having in his left shoulder and back. "I played 36 holes yesterday," I recall him explaining, "but it really is hurting pretty bad. I've been taking ibuprofens, but it just doesn't seem like an 'ibuprofen' kind of pain."

"Well, what kind of pain is it then?" I queried while still drawing on the card. Dad called me to ask about minor aches, pains and health-related concerns all the time--his and that of his friends, siblings and acquaintances-- so this was nothing unusual. I yawned and kicked off my clogs under the counter.

"Hmmmm. I don't know how to describe it. It's been going on for several hours now, I know that. I mean. . .it's not like a pain like in your joint.. . .like when I move it, that doesn't change it." I imagined him moving his shoulder, which I am sure he was doing as if I could see him. Dad sighed. "I told you I don't know how to describe it."

"36 holes is a lot, Dad. Did you hit the range first?"

"Yes. . . .but it just seems like it would hurt more when I move it, don't you think?" (I'm pretty sure he was moving it again for me.)

"Yeah . . . . .it really should if it is an overuse injury." I had an idea. "How 'bout you do your best to compare what the pain is like to something you've felt before. Sharp like stepping on a pin? Dull like a toothache? Stabbing like. . .uh. . .a stab? Just describe something that you've felt before to give me an idea." Deciding to multitask, I reached into my lab coat to look over the list of patients on my cross-cover sheet that night and yawned again. So far, everyone was behaving. Maybe I would get a few hours of shut-eye in the call room before morning rounds. I lay my head down with my ear on top of the receiver waiting for Daddy to go on.

"It's like. . . . " I could tell his wheels were turning," . . . it's like. . . .kind of like somebody sprayed something cold inside my shoulder and between my shoulder blades."

I immediately bolted upright. "Like what?" I firmly interrogated. He repeated the statement, but this time he added "kinda like accidentally biting a piece of ice, but in my shoulder and back." Shoot. I jumped up, stuck my feet into my Birkenstocks and started pacing with the phone. Like something cold? Shoot! This sounds visceral, I thought referring to the indescribable pain associated with internal organs. Shoot!

"Daddy! How long has this been going on? When did it start? Are you sweating?" I blasted him with questions feeling my anxiety grow. After spending an entire month taking histories from all kinds of patients experiencing sho nuff and bonified heart attacks, I was very much in tune with the significance of these kinds of subtle complaints. I wanted more information.

"Most of the day," he replied. "I saw my primary doctor earlier and he gave me the ibuprofens. It just kept hurting so I thought I'd see what you thought." I tried not to sound worried, but I was. I really, really was. I could feel my heart beginning to pound in my chest, and place my hand on it in an effort to calm down.

"Listen to me, Daddy. Listen to me, okay? I want you to have JoLai take you straight to the nearest emergency room. When you get there, tell them you have high blood pressure, high cholesterol, and that heart attacks and strokes run in your family. Then tell them you have chest pain and that you're sweating."

"But I don't have chest pain, and I'm not sweating," he countered.

"I know, Daddy, but I'm worried about this pain and I don't want anybody to blow you off." I knew it was a white lie, but I also knew the cold hard facts about black folks being turned away with atypical cardiac complaints. Fortunately, I knew Dad would do whatever I said. I immediately called my younger sister on the three-way who promptly headed over to pick him up. They called me as soon as they reached the ER, and promised to keep me posted.


Several hours later, I learned that my father was found by the ER physicians to have a very abnormal EKG that even a first month first year medical student would recognize as an acute myocardial infarction (heart attack.) They admitted him to the Cardiac Intensive Care Unit at our local community hospital, and early that morning his nurse let me speak to him. I still remember the sounds of beeping IV pumps and monitors in the background.

"My shoulder is a little better but it still hurts in my back some. They have the glass bottle pain medicine at the maximum, but my nice nurse just gave me some morphine and it helped a little." I could tell he was being brave so that I wouldn't worry, but my medical knowledge was sounding alarms in my head. I didn't want to scare him, but I am pretty sure I did with my silence.

What? He is maxed out on nitroglycerin and STILL is in pain? He is STILL in pain twelve hours later???? Shoot! Shoot! Shoot! "Daddy, let me speak to your nurse."

As soon as she got on the phone, I learned that Dad's first cardiac muscle injury/enzyme marker blood test (troponin) was 4.6 in the emergency department. (normal is less than 0.04) His repeat troponin 4 hours later was 22. (Yes, medical students and residents--you read that right: my father had a repeat troponin of TWENTY frickin' TWO!) "Beg pardon?" I gasped, needing her to repeat it as I was sure I'd heard wrong. "Oh, I'm sorry. It's twenty two point one," she read from the computer. Whaaa?

I thought that I would vomit. I hung up the phone and, like a lifeless zombie, I rejoined post call rounds with my team in the unit. My attending, Dr. Biblo, saw that every bit of color had drained from my face, and thoughtfully asked what was wrong. I burst into tears and told him my father was in a CICU in L.A. with a troponin of 22, the highest I had ever heard or seen in my life. I also told my attending that the cardiologist had not reached the hospital to do a cardiac catheterization yet, and that I was terrified. He excused me from rounds to go cry in a call room, which I appreciate to this day.

Dr. Biblo sat beside me when I called the west coast cardiologist after rounds. That absentee cardiologist left me holding for several minutes listening to monotonous recordings with the operator, and once he took my call, he nonchalantly told me that he was in the parking lot and preparing to cath my dad. He also told me that "things in residency aren't the same as real life." I'll never forget the way he trivialized my concern for my father. (I vowed then never to do the same.) After the catheterization, he called me back and, with a snarky tone, informed me matter-of-factly that my dad needed bypass surgery. "There was nothing I could do in the cath lab anyway," he added with a smug chuckle. "See? It isn't always like you see on tv and in residency." In other words, naaa nanny boo boo. Jerk.

By this point I'd managed to secure a plane ticket to leave for L.A. that evening. Ironically, I'd been angry all month that I didn't have plans for the big Millenium New Year's eve that year. Fickle fate--now I did. So much for partying like it was 1999--I needed to be about my father's business. A few hours later, I sat in the airport where my mother called me on my cell phone from the unit after Dad's cardiac catheterization.

"Daddy's groggy, but he's a trooper!" she tried to sound cheerful. At this point, I was 100% business.

"Is he still in pain? Ask him, Mommy," I ordered. I overheard her ask him.

"A little in his back still and between his shoulders, but he says the morphine helps." Still in pain? Still??? Now I was sure I would throw up.

"Mommy, let me speak to his nurse right now. Hurry up, Mommy." She sounded puzzled at the urgency in my voice as she called for the nurse. When the nurse came to the phone, I demanded to know what time he was going to surgery and if his blood pressure was stable. When she told me it was "on the low normal side" and that "I think the surgery was scheduled for tomorrow afternoon as an add-on"-- I completely lost my cool. Even more infuriating than what she said was the patronizing voice she was using. (I promised myself then that I'd make every effort not to do that, either.)

"Are you kidding me, ma'am? You cannot be serious about his blood pressure. What the hell!! He is actively infarcting as we speak! Don't you know that time is muscle? This is crazy! Where is his cardiologist? I need to speak to him right now!" I felt like I was in the twilight zone or on a very bad episode of that show "Punk'd." By this point, all of my etiquette, professionalism and manners were black history. The nurse defensively backpedaled and explained that the cardiologist was gone for the day, but that "the cardiothoracic surgeon, Dr. Z., was aware of the case." The case? The case?!? This was my father. My world. My hero. Not a damn case! I erupted into tears and hung up in her face.

Unsure of what to do, I called my CICU attending Dr. Biblo again, and did my best to explain what had happened. I was crying so hard I could barely speak. All I could think about was that my dad was an active guy, extremely active, and that this delay would leave him likely with disabling heart failure, or worse, death. I could tell that Dr. Biblo knew I was right. "I'm so sorry, Kim," he offered.

"I should overhead page that surgeon in California and talk to him myself. I know his name. They told me." I sniffled to my attending through the phone. I felt so helpless.

"You've nothing to lose by doing that," he responded sounding completely serious. I was actually speaking a bit tongue in cheek, but his vote of confidence was all I needed, no matter how crazy the suggestion. If I didn't at least try, I had something big to lose--my dad. I threw caution to the wind and called the hospital operator where he was admitted. I identified myself cryptically as "Dr. Draper" and nothing else. Before I knew it, I was connected to a man with some kind of Latin sounding accent.

"Hello, this is Dr. Draper. Is this Dr. Z?" I asked anxiously.

"This is," he cheerfully answered. I already liked the sound of his voice. He sounded trustworthy and like he'd at least listen. I launched into my presentation of my father, Mr. William Draper, a 56 year old African-American man with hypertension, hyperlipidemia, and who'd had an ST elevation myocardial infarction the day before. I gave as much detail as I could, down to his last set of vitals and then implored him, "My dad is so active, sir. He cannot wait until tomorrow to have his myocardium (heart muscle) perfused. He cannot. Please." I felt my voice wavering and I tapped my foot, begging myself not to cry. It was the most important patient presentation of my whole life; all over a cheap cell phone in the Cleveland Airport terminal.

"Aaah," he said and then paused. I held my breath until it felt like I was going to faint. "It's your lucky day, Dr. Draper. My scheduled patient had a lunch tray. I will call for your father now if he hasn't eaten." I heard him say a few things to the OR crew.

"He hasn't! He hasn't eaten!" I screamed, "Let me call my mom now to make sure he doesn't! Oh my God. Thank you! Thank you! Thank you!" My voice was quivering and my hands were shaking as I hung up and quickly dialed my mom's phone. As fast as I could, I replayed our conversation and confirmed that Dad hadn't eaten. Divine intervention--they had just brought his tray--but he hadn't touched it. "Thank you, Lord!" I uttered aloud. I hung up, and boarded a plane to Los Angeles. . . . .praying the whole way there.

***

Dad did well in surgery, and recovered in cardiac rehab like a champ. Ten years later to the day, my father briskly walked ten miles in celebration of a decade of health and life--post myocardial infarction and post bypass surgery. To this very day, he gets up at 5 am and walks 5 miles every single morning, and sometimes, if he feels like it, a little bit more. I still get a wave of nausea when I think about that terrifying day, the same day he celebrates.

Many days, I still ask myself:

What if my Dad didn't have a daughter who was a doctor?
What if I hadn't been hearing chest pain/heart disease stories all month long?

What if he'd waited until the next day to get his vessels bypassed?


I shudder at the thought and then thank the Lord that it remains a "what if" and not a reality.

***

Yesterday in the Grady gift shop


"Excuse me, doc, can I ask you a question?" a young woman asked me as I sifted through the granola bars.

"Sure," I replied assuming she was lost in the hospital.

She showed me a bottle. "What is this medicine, doctor?"I leaned forward and read the label. Lisinopril. I wondered why she was on it.

"This your only medication?" I asked. She nodded. "You have sugar?" I added on. She shook her head no. "A weak heart?"

"No, ma'am. Just borderline high blood pressure." I stood up and faced her to give her my full attention.

"How old are you?" I studied her twenty-something year old face. No more than twenty five was my guess.

"Twenty-seven." I squinted my eyes and then noticed a tattoo on her right upper arm with a name that started with a "k."

"Your baby?" I asked with a smile, aware of the practice of many young urban mothers of inking the name of their children on their skin. She quickly looked over at her arm and grinned. She nodded, but I could tell she was wondering what I was getting at. "You had your tubes tied?" Again she shook her head and looked confused.

"This medicine may not be the best choice for you. Women who still can get pregnant should avoid it because if you are on it when you get pregnant it can affect your baby. I suggest you head upstairs and ask your doctor about it, okay?"

"Okay. . . " she replied staring at the bottle. "Wow thanks. . . .thanks. 'Preciate you, doctor."

The clerk behind the counter chimed in. "Oh yeah, that's Dr. Manning. She take care of all of us. Member when my foot was hurting?" I looked over at the friendly shop attendant and chuckled. She helped me diagnose her with plantar fasciitis (a common musculoskeletal foot malady) in that very shop a few years ago. I managed to get her a clinic appointment that same day--all while chomping on a granola bar.

"You know I got your back," I teased. I looked back at the young woman. "Go on and take this up to the clinic and ask to speak to one of the senior doctors. They can help give you something different for your blood pressure. I'm sure they won't mind, okay?"

She repeated her earlier statement--a common one at Grady-- before disappearing through the glass doors. " 'Preciate you." (Grady code for "Thank you.")


So today, I guess I am reflecting on what a blessing it is to have someone advocating on your behalf when you are sick or even when you aren't. It's amazing how many folks are out there clawing and fighting just to "get it" and how different the outcomes can be without someone in your corner--especially someone with a medical background.

All of this has made me try just a little bit harder to be an advocate for my family and my Grady patients, now more than ever. When I walk through the hall, I try to look approachable. . . .I smile at people, say "Good Morning" or "You doin' alright?" in the lobby, creating a climate for someone to hand me a bottle or piece of paper or to even show me a rash on their hand. (Crazy, I know.) I am even more careful with the intonation of my voice when taking phonecalls; I want to sound as welcoming as Dr. Z did that day when he answered my overhead page back in 1999. Realizing the awesome responsibility given to me--not just being a doctor, but a Grady doctor--has changed me. It's made me more patient with people's stories and there littlest concerns. It's made me take pause in the hallway when someone stops me instead of feeling annoyed. Now I know-- I might be all they have.

One week ago, I talked to my brother Will--a busy Veterinary surgeon and business owner--about severe wrist pain he was experiencing. A few questions later, we'd quickly reached a diagnosis of DeQuervain's tenosynovitis (a wrist injury from overuse.) Two days ago, I met him in his Decatur office to check on how he was doing. Turns out, it was a super simple diagnosis, but one that could have taken him several steps--a referral, missed work, and hassle-- to get. He was so appreciative.

"You know I have your back!" I told him as he helped me load the kids into the car. He smiled and gave me a big hug.

As I drove off, I felt warm inside. I thought about being afforded the opportunity to be a doctor by my parents, and how good it felt to be able to help out. I stopped at a red light and sighed. I listened to the ambient noise of my kids chattering behind me in their seats. Wow. Glad to have my brother. Glad to have my father ten years later and glad he is alive and well enough to know and enjoy his little grandsons. And glad God saw fit to make me a doctor and lead me to Grady, where I get the chance to walk in my purpose every single day. I looked skyward and sighed again.

" 'Preciate you," I whispered as I pulled off. " 'Preciate you."



". . . .From everyone who has been given much,
much will be demanded;

and from the one who has been entrusted with much,
much more will be asked.
"

- Luke 12:48

*Written with Dad's permission

9 comments:

  1. Wow, that story about your dad made me cry! It's so sad to think that he needed a physician in his family to get the right care :(

    Sameera

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  2. Dad says he is having trouble getting his comments to post correctly, so I will relay his message: He was reminded (and so was I) when he looked at the pictures and read this story what he would have missed. His two grandsons and two more of his six grandchildren if he'd had a different outcome in 1999.

    Dad, I'm glad you thought to come up with that vivid description of your symptoms and so happy every person who played their part, down to the hospital operator who connect our call. :)

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  3. Thanks Dr. K.D. for your interpretation. You did good as usual. Life is good. I love you more than you can imagine...

    Poop-Deck

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  4. Thanks, Poop-Deck. . .Life IS good. :)

    (BTW, I call my dad Poop-Deck as in "Pappy Poop-Deck" from the old Popeye cartoons.)

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  5. I stumbled upon your blog... I just have to say your story about your dad was really touching. I felt like I re-lived it with you. You know it's so sad and so true that African American people are not perceived the same as white people (even white trash) in the ERs, let alone heaver forbid their unique symptoms be known... I read this book called "Mama Might Be Better off Dead" by L.K. Abraham about an African American family in the Chicago suburbs. It hurts to read it, but it was so eye-opening. It's awful to read about a city so near you yet apparently so far away morally.
    And about lisinopril. Funny, you had written that... I was put on Lisinopril at age 18 (I'm 27 now) for high blood pressure by my nephrologist after a million and one tests and caths with nothing to rule out, primary HTN it was. Nothing else worked for me... You are SO right about it being a teratogen... a documented one at that.

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  6. Wow, wow, wow, wow. Wow. What a story. I'm digging into some of your archives now and I am so, so glad to have discovered your blog. I have many thoughts about this blog post, but I'll narrow them to these: 1. I'm so glad your dad is okay, 2. You are a fantastic writer; I feel like I am right there next to you when I read your posts, and 3. I so admire your courage, your grace under pressure, your ability to recognize the ills of our society and work within them despite the emotional toll that must take sometimes, and your willingness to use your personal experiences to inform you as a physician. So cool. :)

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  7. Tammy posted a link to your blog on her Facebook page and now I've been up all day and night reading it! This story really hit home as both of my parents were diagnosed with cancer during my fellowship...the nerve of them getting sick as soon as I move literally 1000 miles away! Those phone calls to those far away stranger-doctors are never quite satisfying. Glad your "Poop-Deck" is still here--makes you wonder what would happen if he didn't have an MD for a kid! My folks are doing well thanks to God's mercy.

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  8. Thought of this blog entry on your site when I recently read this: http://healthpolicyandreform.nejm.org/?p=14705

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  9. You are so right that a patient advocate can be crucial to recovery. I owe a lot to Sister Sally at St. Joseph's who stepped in for me during a very scary time.

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