By Amanda Anderson, a critical care nurse and graduate student in New York City currently doing a graduate placement at AJN.
Everybody, myself included, thought he was going to die. Another nurse on another floor had administered his stem cell transplant a few weeks prior, but as his primary nurse I was now in charge of managing its aftereffects.
Ben (not his real name, and some details have been changed) was one of the many young patients I’d cared for who suffered from a violent course of complications following allogeneic hematopoietic stem cell transplant (allo-HSCT). Intractable diarrhea and skin sloughing led to graft-versus-host-disease’s usual sequelae: wounds, drug-resistant infections, looming sepsis. The walls of his bladder, scarred and irritated by the myriad of toxic drugs he’d been given, bled. One day, while I slept at home between night shifts, he lost so much blood that they rushed him to the OR. The treatment—never before performed—stopped the bleeding. But it left him in excruciating, around-the-clock pain.
Between regular doses of Dilaudid and PCA pump pushes, he cried out to me, “I can’t do this. I don’t want this anymore.” I couldn’t blame him—his cancer fight raged on endlessly. Watching his boyishly handsome face grimace with so much pain, I remembered other young allo-HSCT patients’ faces, some of them peaceful only in the postmortem.
As it turned out, Ben survived his ICU stay. I heard about his discharge to the bone marrow transplant unit after I returned from a vacation. I lost touch with him, in the way that most ICU nurses lose touch with their patients (as though the unit is earth and the floors are outer planets, foreign and unknown, impossible to visit). I hope he’s home now, though, and a part of me believes he is—living, joining the growing population of allo-HSCT survivors.
As I read Kara Mosesso’s November CE article in AJN, “Adverse Late and Long-Term Treatment Effects in Adult Allogeneic Hematopoietic Stem Cell Transplant Survivors” (the first of several articles from Memorial Sloan Kettering Cancer Center about cancer survivorship care), I thought of Ben and was glad to be reminded that people like him do survive. While the current population of allo-HSCT survivors is fairly small, it’s growing, and by 2020 may reach around half a million worldwide.
It seems that all nurses—whether caring for allo-HSCT patients in the acute phase, like me, or in the chronic phase in an outpatient setting, must become familiar with the multifaceted long-term care of this population of patients. The table below, from the article, lists various late and long-term allo-HSCT treatment effects and their risk factors. Visit the article link above for more context, sources, and more.
Ben may well be celebrating his four-year allo-HSCT anniversary this year. But, according to Mosesso, if I were to meet him on the street, there would be a good chance he’d have some bone density loss, which affects 50% of allo-HSCT survivors, and might not be able to zip around town on the skateboard he used before he got sick. His chance of hypothyroidism would be around 20% to 40%, and he might suffer from reproductive issues usually uncommon among 20-something men.
Many allo-HSCT survivors also battle chronic metabolic syndrome, which, because of elevated cholesterol, blood pressure, and glucose levels, puts them at a higher risk of dying from cardiovascular disease.
But whatever long-term effects of allo-HSCT treatment he’s dealing with, it’s Ben’s smile that I remember, and his funny voice, which poked through even during the darkest of moments in the ICU. And there’s a part of me that knows that, even if all of these treatment-associated comorbidities afflicted him, he wouldn’t care.
Life, for him, was always worth the risk. I just hope that he has primary care doctors and nurses who implement strategies appropriate for allo-HSCT recipients—like the strategies Mosesso describes in this CE article—to help him live the healthiest, longest life possible.