It was a morning like any other in the gastroenterology ward at Ziauddin North Nazimabad, when I was asked to follow a new admission from the night before - Mrs. Sarah, who had been admitted from the OPD with the complaint of shortness of breath. I smoothed out my lab coat, grabbed the patient's file and entered the semiprivate ward to find an elderly, overweight, dyspneic lady. The first thing I noticed about her was her face - strapped to it was the CPAP face mask. Her face was pale and swollen. Accompanying her was her visibly anxious daughter awaiting the arrival of a doctor to explain her mother's symptoms.
I introduced myself as the ward duty doctor and began the usual process of taking her history. Her voice was muffled by the mask and talking made her visibly uncomfortable. Her NIV (non-invasive ventilation) was necessary - she was desaturating without it - so I turned to her daughter instead. The daughter began to tell me about her mother's chronic pulmonary illness - she was a patient of pulmonary sarcoidosis, on home oxygen support. Although it had cost them a lot of money, they had saved up for a home oxygen machine which she would use for fifteen hours of the day. She is also diabetic and hypertensive. At first she seemed compliant with her home medications, but on further questioning I discovered she wasn't taking her Lantus (glargine) injections as was prescribed in the OPD. "She doesn't like the needles," her daughter said, "but her sugar seems to be under control on her oral medicines". Her sugars during admission were uncontrolled.
On further inquiry, I found out Mrs. Sarah had been admitted in the hospital barely two weeks ago for a UTI but was DOR (discharged on request) before her cultures came back. "She seemed better, so we requested to be discharged early. We're private patients, so lengthy admissions are difficult for us."
I asked why they didn't come sooner for an OPD follow up. "It's so hard for her to move around, between struggling to get an appointment and her physical disability, it took us two weeks to come for a follow-up".
I looked at the elderly lady, short of breath and lethargic, and empathized with their predicament. Few patients and attendants understand the need for thorough treatment during admission, but we as physicians tend to overlook the financial burden it places on their families.
I chased the urine culture from her previous admission, and found E. Coli resistant to the antibiotic she was previously being given. We sent new cultures, adjusted antibiotics according to sensitivity, and began treatment for sepsis secondary to UTI.
Over the course of her admission, Mrs. Sarah's condition improved significantly. She increasingly spent more time by herself - her attendants were notably absent - but it didn't seem to bother her. She was maintaining saturation and no longer needed the CPAP during the day, so during my morning rounds she greeted me with a cheery smile. By her last day of admission, she was using the washroom and freshening up unassisted.
During my morning examinations, she would often spend fifteen to twenty minutes eagerly talking to me about her children, about her illness, about the one lac cost of their oxygen machine and how much it helps her cope at home. She described how her admissions used to be once a year at most, but now are happening every two to four weeks. About the emotional and financial burden that places on her family.
Mrs. Sarah seemed to be acutely aware of the impact her chronic illness had on her loved ones. It saddened me to see that, despite her physical affliction and requirement for lengthy holistic treatment, she was putting their needs above her own. "My general physician told me I need to increase my dose of Pirfenex (Pirfenidone) to 6 capsules per day, but I'm already taking 4! How can we afford to do that, when each capsule costs so much?". I thought to myself - how do I explain to her that Pirfenex is supposed to be titrated to a maintenance dose of 9 capsules per day? I shared in her frustration; frustration at having the tools to improve her quality of life, but lacking the accessibility to the means to do so.
Eventually Mrs. Sarah was discharged - this time being fully treated for her UTI, and with adequate counselling about her need for follow-up and adequate sugar control with Lantus injections. "Now that you've told me how important it is, I will try to make more of an effort with the needles," she responded cheerfully, "and fewer gulaab jamun too." I chuckled. It was comforting to watch her leave in high spirits, and without a mask.
Note: Names have been changed to protect patient confidentiality.
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|Article Type:||Personal account|
|Date:||Jun 15, 2018|
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