The Waiting Game
Marya Pulaski
Please note that names and places have been changed to protect patient confidentiality.
When I first met Mr. McCready, I was on week one of my first third year clerkship, starting out on the inpatient gastroenterology team. I was told the team had a lot of “liver patients” with a bit of a groan from my resident. I went to Mr. McCready’s room to introduce myself and found a sallow-appearing man with sunken cheeks with his bedsheets pulled up to his chin and what looked to be a pillow underneath his blanket. He appeared much older than the 68-year-old designation in his chart. When I proceeded with the physical exam, I realized the mound under his blanket was his own stomach. He had the belly of a pregnant woman but it was bruised and discolored, jaundiced with purplish bruises along both sides. His admission at that time was spontaneous bacterial peritonitis. He was no longer encephalopathic, but his persistent hyponatremia and hyperkalemia had him stuck in the hospital.
I think we first connected simply because I pronounced Mr. McCready’s name correctly. As someone with a difficult-to-pronounce name, I always remind myself that when someone pronounces my name right, it is usually a sign that they have encountered me enough times to get to know me and/or that they care. I tried to explain the patient’s name to the intern working with Mr. McCready, but the intern continued to pronounce it wrong day after day. The pronunciation was really not a big deal in the grand scheme of things or in the scope of Mr. McCready’s treatment, but as I came to see this summer, these small details really do make an impact on a person and their family.
Mr. McCready’s hospital problem list was long and notable for hemochromatosis, hepatocellular carcinoma, and alcohol-induced cirrhosis. His liver was shot and he was scheduled to start being worked up for a liver transplant. The last two years had been especially challenging: he had received both his cancer and cirrhosis diagnoses. He stopped working as a security guard and spent more time at home. He had his last drink on the weekend of this year’s Super Bowl and had become accustomed to weighing himself daily: he kept his stats listed on a big whiteboard in his kitchen.
Mr. McCready still lives in the triple decker in Worcester where he grew up. He lives on the first floor, his younger brother and sister-in-law live on the second, and his daughter and 11-year-old grandson live on the third. He divorced his wife when their two kids were young and he does not see her much now: “we didn’t agree on much, but we agreed on the kids’ names.” His grandson runs up and down the stairs in and out of rooms just like Mr. McCready did with his brother as a boy. The house had changed throughout the past several decades, little projects through the years and a swimming pool in the back, and locks on the front door. The locks had been placed when Mr. McCready was away at war in Vietnam: “it felt like everything had changed when I came back.” He had toured in Japan, the “East Indies,” and Taiwan: “I saw a lot,” he told me one day quietly with his eyes focused on something not in the room. He said those years both felt like a blur and felt like the most impactful of his life. He longed for home and thought he would never return to see it. He told me, “If I knew I’d live this long, I would have taken better care of myself.”
Throughout the summer, I rarely saw Mr. McCready alone. His son or younger brother was usually with him, sometimes both of them. I also got to know his daughter and daughter-in-law. Mr. McCready’s family often joked that they had learned more about the liver and heart and kidneys than they ever wished to. “I feel like I’m getting a free medical degree,” his brother would laugh.
Each time I saw them, they shared the challenges of Mr. McCready’s health problems and time in and out of the hospital. “It’s the communication that really drives me crazy,” his son told me one afternoon. “I feel like we’re told so many different versions of what to expect and what’s going to happen throughout the day. Someone comes in from ‘his team,’ and then there’s someone from the ‘liver team,’ and then the ‘GI team,’ and then sometimes there’s a ‘kidney team.’”
“I agree,” Mr. McCready shared, “especially when they have it so you can’t eat.”
“Oh ya, that’s the worst,” said the son. “He’ll go all day not eating because of some scope they’re planning to do and then they say, ‘oh sorry, it’s going to be tomorrow now.’ I don’t understand how that helps him get any better.”
“And I always get a kick out of when they ask you how you’re feeling: they ask, ‘how’s your mood lately?’ I tell them, ‘you’d be crazy to not be depressed in here, lying around in bed all day, waiting for the next thing to happen.’”
In early June, I accompanied Mr. McCready to his hospital follow-up appointment. His brother was there with him. As Mr. McCready slowly checked in with his swollen legs and struggled to get his wallet out of his pocket, he made one of his typical jokes: “If George Washington was checking in, do you think he could just show you a quarter?” It was a busy day at the liver clinic and appointments were running 45 minutes behind schedule, so we had a chance to catch up. Mr. McCready was doing well at home overall. His only real complaint was his lack of appetite from his abdominal distension. He was getting paracenteses every other week, but he said he usually only had about two or three good days after receiving one of them before he started to feel bloated and uncomfortable again. Mr. McCready kept track of all of his medications using a pillbox and his kitchen whiteboard, where he also tracked his daily weights and blood pressure readings. He had a consistent daily routine down. His brother and son helped him keep track of appointments and questions they had for the care team. One main concern that came up time and time again was Mr. McCready’s MELD score: “It seems like a lose-lose,” he told me and other members of his care team, “When it’s high, you’re feeling real lousy and in the hospital, but you’re high on that list, and then when it’s low, you feel slightly less lousy, but you could be waiting for a liver until you die.”
Fast forward to late July, and Mr. McCready was back in the hospital on 7 East. “They won’t let me eat any watermelon now,” he told me. This was now his third hospitalization of the summer (he’d end up having five). This time he was in for hyponatremia. This week had included his big slew of appointments as part of his work-up for a potential liver transplant. He had met with transplant psychiatry, gone through a pre-transplant education class with his son, and received ABO typing and imaging. When his routine bloodwork came through, they found his sodium was 117, down from his chronically low baseline in the mid 120s. He was walking over to the parking lot ready to go home after a long day when they called him and directed him to the floor. He did not even have to worry about going through the emergency department, they told him, his only relief at the situation. He had been carefully monitoring his fluid intake at home, as he had been recently put on stricter fluid restrictions. “I don’t know, I never thought watermelon could get you into trouble. It’s the summer! I thought I was being healthy. You know, I have to admit, sometimes I miss a cold beer on a hot day. I don’t even want to finish a whole one, I just miss being able to hold a cold beer. But there’s none of any of that for me anymore.”
He spent over two weeks in the hospital that admission. When I checked in on him he was two days shy of his sixty-ninth birthday. He was frustrated, sitting in bed with a plate of slightly picked-at food and a little beanie baby animal from his grandson on his table. “It’s hard because sometimes I feel totally fine—well a little lousy—but lousy is normal for me now, and then next thing you know, they’re sending me to the ICU because my blood pressure’s so low or my sodium is tanking again. Sometimes I feel like I’m stuck in here.” We looked out onto Lake Quinsigamond together—he was happy to have a window view this time—and noted the different colored sailboats and swan boats that went by. He had excellent vision. “I just want to be outside. Do you think I’ll be able to get out of here for my birthday? Eh, don’t answer, I already know it’s going to be a no.”
In early August, during my last encounter with Mr. McCready this summer, he was not the only patient checking into the Transplant Clinic. His son was checking in as well. After much careful thought and consideration, and many meetings learning about the transplant process, his son decided he wanted to be worked up as a living liver donor. Mr. McCready went to get his vitals checked with his brother and I sat out in the waiting room with his son and his daughter-in-law. They each had dark rings tattooed around their ring fingers, his a double band and hers a neat bow. They used their waiting time to go through their to-do list items, planning for what might be ahead: how much vacation time had she accrued? Who would be likely to offer her coverage on evening shifts? Who would drain the pool? Who would do the shoveling in the winter? Could they afford a vacation to rest somewhere warm? Would any of this even happen in the winter? They went through each question calmly and purposefully, laughing and occasionally patting each other’s hand or thigh.
I then sat in with Mr. McCready during his appointment with his liver doctor. A nurse practitioner first carefully reviewed how Mr. McCready had been doing with his diet and vital signs at home. He still checks his weight everyday—takes his robe off, “just me to start the day.” He has a morning Carnation, banana and peanut butter sandwich, something different for dinner, if he has an appetite that is, and one canned soup a month as a little treat. He still keeps track of his medications on his big whiteboard. His paracenteses are weekly now: nine liters off usually. Again, he has about two decent days and then feels lousy without much of an appetite. His nurse practitioner emphasizes the importance of good nutrition and protein intake and she applauds his efforts. He appreciates this. His potassium keeps running high so his spironolactone is cut for now. His MELD score is down to 24 from 32 earlier this summer. Over the course of the summer, Mr. McCready has changed his mind about getting a “higher-risk” liver, for instance from a hepatitis C donor. He seems more and more open to that option.
He expresses his concerns about his son coming forward as a living donor: “I can live, I mean I am living, with the choices I’ve made in my life, but I don’t know how I could live with myself if something happened to him on the operating table or afterwards. I just don’t know how I could live with that.”
Mr. McCready’s transplant doctor replies, “I’d encourage you to think about your son and his perspective. What if he feels the same way? What if he won’t be able to live with himself if he doesn’t offer you this?”
I have long been interested in a career in pediatrics, but the patients I encountered on my first week of UWards surprised me. Lying in bed, eager to chat, the adults I spoke with seemed childlike to me: vulnerable, curious, playful, eager for human contact. I understand this description may make the patients sound dependent on me and I do not intend for that. Yes, I can see and feel a power dynamic of sorts at play sometimes, but seeing my patients like this actually humbled me. Our interactions reminded me of our shared fragility, our simultaneous eagerness to learn and inability to fully understand the complexity of the human body and the human experience’s effect on it, our lack of control over many of the events of our lives.
Getting to know Mr. McCready and his family felt like a huge gift in my training. I got to be witness to their stories, their remarkable ordinary love for each other, and their planning for a future steeped in uncertainty. They emphasized the importance of details and thoughtful communication. Mr. McCready’s life is dominated by details right now: every sodium measurement could be the difference between being at home and being in the hospital for two weeks, every new MELD score brings him closer to or further from a new liver, every slice of watermelon on a summer day can feel like a risk. Acknowledging the challenge of this reality for Mr. McCready seemed to bring him great comfort. His family expressed gratitude for someone who really took the time to listen to their experience and hear what a day in the life felt like for Mr. McCready and his family members in his present precarious state.
And communication: good communication was what Mr. McCready and his family seemed to value and long for most. Mr. McCready loved his entire transplant team because they were truly a team. The members were all on the same page and care felt very well coordinated and integrated. “I don’t feel like I need to repeat myself every time I see them because they know me. And I know I can always call them and someone will always call me back right away. All my questions get answered,” Mr. McCready assured me. Working with Mr. McCready and his family strongly motivates me to work on building relationships with my patients even if I do not have the chance to follow them over a period of several months. The small details are what can both inform clinical care and make a patient feel seen and understood. Finally, I want to work hard with members of my team and other teams to make sure clear communication and clear plans are shared with our patients. I want my patients to feel like they can really trust me and know that I am above all else, an advocate in a health care system that can sometimes feel chaotic and overwhelming.
Marya Pulaski, MD is a 2021 graduate of UMass Chan Medical School and created The Interstitium while in medical school. She wrote this piece during her Medicine Clerkship as a third year medical student. She is currently serving as an Internal Medicine Resident at the Hospital of the University of Pennsylvania. She will be applying to gastroenterology fellowship next year.
