I met her towards the end of a busy clinic day. I was rushing around trying to finish up things for my other patients, and she was laying in a bed with blood pressure of 210/120. At that pressure, she could have a stroke or a heart attack at any time. She had chronic kidney disease, with function of 24%, so we couldn’t give her just any medication, and we had to be careful because her body couldn’t process most medications the same as other people. I took away some of the medications that were likely damaging her kidneys, and started her on a short-acting blood pressure medication that should help her without too much danger. I prayed that she wouldn’t die before I saw her again, she was just so fragile.
I met her again at the end of the month. She was again laying in our urgent care bed, this time with a blood sugar of 32. At that level, she could fall asleep and not wake up. She was on some long-acting insulin, and it seemed like her slowed kidneys weren’t processing that, and it was causing her risk for both high and low sugars. I reduced her medication to a medium-acting insulin, and talked to her about diet. At least her blood pressure was down to 155/91, but that wasn’t helping her kidneys, which were functioning at 21%. I wrote her kidney function on the front of her chart, reminding doctors to make sure that all medications given were healthy for her kidneys.
After that, I became her specialist doctor. We met every two weeks, then every month. Sometimes her sugars were high, and sometimes she had swelling in her body, but her pressures were coming under control and her family was taking care of her with a very customized insulin schedule based on her measurements. She traveled far to come see me, and when we met, her family members sat in the room talking with me. One of her family members was our clinic staff, so I felt a particular responsibility for her.
I added medications for the swelling, I increased medications for her pressure. Her sugars climbed a bit, and we increased the insulin, but never so much that she had a low value again. I smiled when we talked about diet and nutrition. She was 77 and wanted to eat the starches she liked. I told her I would try my best to adjust the medication to her sugars. It wasn’t easy because the most easily available insulin had unreliable absorption, and then her kidneys processed it differently at different times. We talked about options for a kidney specialist at the central hospital. We talked about buying expensive long-acting insulin. We talked about the possibilities of dialysis. In the end, I helped the family as they decided to continue with the current treatment. She was enjoying her retirement home with her grandchildren. Her kidney function reduced to 15%.
We talked about cholesterol medication and how it might help protect her heart, but she decided she didn’t want any additional medications or additional interventions. She started to get low blood pressure, so I started reducing her medication. She had anemia, but with the kidney failure that was expected and there wasn’t much we could do about it. She ran out of her blood pressure medications entirely, and her pressure went up, but not as high as it had been, just 160/90. Her kidney function decreased to 12%, but her swelling was better and her foot wound had healed. I talked with the family about her likely trajectory, I helped take care of her knee pain. On our last visit, I gave the family my personal phone number, because her kidneys were at a level that things could change quickly, and some doctors aren’t prepared to take that into consideration. I booked to see her in a month.
When I called to check in about the appointment, her family member answered the phone. They told me she had died the weekend before. I was away that weekend, and my phone was off. But the family didn’t call me anyway. She had come to our clinic and though she had been found to have anemia, went home without a transfusion. Then she went to another clinic, and she died there. The clinic staff were shocked, saying that she had been sick, but she looked healthy recently. The family thought it could be the sugars, she always had high sugars. But I didn’t think that high sugars could have killed this woman. Low sugars could have, and high pressures, and any number of therapies that were not quite rightly in balance with her kidneys. I wondered if I could have helped her more as a doctor. I wonder if I could have helped prepare her and her family more for the progression on this illness.
Yes, I thought she could have died that first week after I saw her, and she almost passed on before that second visit when her sugars were so low. I did keep her in balance for a while, and she had eight months with her family and with relatively comfortable health. But I had hoped that she would be like one of my favorite kidney failure patients – he was ten years younger than this patient and not on insulin, but he had already had a stroke and came to me with a blood pressure of 200/96 and a blood sugar of 400. His kidney function was 7% when I met him. His sugars and pressures came under control with minimal medication, and he increased his kidney function to 13% in the time I knew him. That patient and I met a few times per year, and he did all the hard work managing his lifestyle and even starting to exercise as best he could. He never suffered from swelling and he lived for 4 years. I know that not every patient can be a miracle patient, and not every patient wants to make radical lifestyle change enough of a life focus to reverse disease.
There is a part of me, the western-trained specialist part, that grieves that she couldn’t invest in pursuing the gold standard care - dialysis and cholesterol medication, medication to help with anemia and medication to improve her sugars. We discussed these options and considered the cost, in time and money and family stress. There is another part of me, the people-pleasing part, that wonders if I did enough for this patient and her family. Did I meet their expectations? I might have talked more often and more directly about end-of-life plans and comfort care if I was in the US. In Malawi, there is a fine line between trying to prepare a family for the future and cursing them by telling them they will die. There is another part of me that regrets that she was not a “miracle patient.” I wish that all my patients could recover in ways that can’t be explained by western medicine. Many of my patients do, and yet I begrudge those who do not as if I was the one who could bring life and prevent death.
So I struggle with these different parts of myself. I struggle with thoughts about whether I could have helped her by making sure that she wasn’t prescribed medications that would shift her out of balance. That was one of the last things I did for her, recommending that she not take a kidney-toxic pain medication recommended by someone else. I know that the family didn’t reach out to me or ask me. But could I have helped if they had?
I’ve been a doctor for almost 12 years. I’ll never forget my first patient, a couple years before that. And I’ll never forget the first patient who became my friend, and I’ll never forget the first patient who passed away. And this patient, and the anxieties and compromises and reassurances and doubts of my eight months’ journey with her, that will stay with me for my entire life as well. I wish I was a better doctor. I wish I had more resources here. I wish that I could know the future and prepare people for it. I wish I had the power to bring healing and keep away death. I struggle with the way I expect myself to do these unrealistic things. I struggle with the “what if” and the “if only.” I carry the uncertainty and the self-doubt into other areas of my life.
I tried my best to support another patient with kidney failure yesterday. His levels just decreased slightly from 30% to 29%. He is feeling good and satisfied with his health, and I plan to do my best to control his blood pressure and help him prevent another stroke. But what will that journey be like, and what will I do if he doesn’t have a miraculous recovery? And why don’t the three kidney tests I ordered match up? I try my best with the resources I have. I am thankful to be a doctor. But seasons like this I do struggle and I do need some time to rethink my expectations and to process my experiences.