The Sword of Damocles
The San Francisco Bay Area is home to the largest concentration of technology talent in North America. Every weekday more than 400,000 technology workers get ready for work – either remotely, commuting to their employer’s facility, or some combination of the two – the so-called hybrid work schedule. One individual in this talent pool is 35-year-old Deepti Bahel, who recently started work as a data analyst for a leading eCommerce firm in the Bay Area. “I’m enjoying the challenges my job is throwing at me,” she says. Her arrangement requires that she works in person twice weekly.
What sets Deepti apart from the others is that her day begins after nine hours of self-administered, home-based nocturnal Peritoneal Dialysis during the night. Deepti has end-stage renal disease (ESRD). She needs daily peritoneal dialysis and will die unless she receives a kidney transplant soon. According to the National Kidney Foundation, the average life expectancy for a patient with ESRD on dialysis is between 5 and 10 years. Deepti is living with a death sentence hanging over her head, like the proverbial sword of Damocles.
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Meet Deepti Bahel
Deepti grew up in Ghaziabad, on the outskirts of Delhi. After receiving a bachelor’s degree from Netaji Subhas Institute of Technology in Delhi in 2011, she worked in Mumbai and Bengaluru. She came to the US in 2016 to pursue a Master’s in Business Analytics at Purdue University, worked briefly in the LA area, then moved to the Bay Area in 2019. She has one sibling, a brother in Canada. Their father died in 2013 of kidney failure stemming from other health conditions; their mother continues to live in India and visits her children when she can.
Outside of work, Deepti spent time with her friends, and volunteered for organizations such as the Drishtee Foundation supporting farming families and development of livelihood in villages, where she helped with marketing and event coordination. She led an active social life typical of adults in their 30s, enjoying hikes and going to the gym – until her life changed in a flash.
April 2, 2024
Deepti felt very ill on April 2, 2024, and was taken to the ER of a local hospital, struggling to breathe. She was examined and admitted to the ICU. That’s when she first learned of her kidney disease. Tests showed that both kidneys had atrophied – shrunken to less than half the normal size – and were no longer able to function normally. Our kidneys act as a filter system for our blood. They eliminate waste products, regulate the body’s fluid balance, and remove excess water and dissolved substances from the bloodstream. Physicians speculate that her condition could have resulted from a birth abnormality, perhaps rooted in genetics.
Deepti spent 12 days in the ICU, followed by three months of hospital visits for hemodialysis three times a week. With both kidneys irreversibly damaged, a kidney transplant was her only viable option. She learned to manage the peritoneal dialysis system that she now uses, in which blood is filtered inside her body instead of using a dialyzer machine. This enables her to live a more normal lifestyle, without multiple weekly hospital visits. She sets it up at bedtime, typically 10 pm, and – on occasions that it beeps for attention – she’s learned to fix the issue before returning to sleep. “I have to make sure to maintain a two-week supply of the solutions needed for its operation,” she told me.
Kidney Transplants
Dialysis is not a cure, nor does it perform all of the kidneys’ normal functions. The only hope for an extended life for ESRD patients is a kidney transplant from another human. 92,000 people are currently on a transplant list in the US waiting for a deceased donor kidney. The list is managed by the United Network for Organ Sharing (UNOS), a private, nonprofit agency that works under contract with the federal government. The US is divided into 11 regions and 58 local organ-procurement organizations (OPOs) that UNOS uses to find matches for a transplant.
Deepti was placed on this list in June 2024 through the California Pacific Medical Center. The average wait time for Deepti’s blood type (B+) is six to eight years. About a third of kidney transplants in the US come from living donors. Only one kidney is needed for good health; a person can donate a kidney and still live well. There is a complex, well-defined process for matching a donor kidney – diseased or living – with the recipient. Solutions such as a bioartificial kidney – a device implanted in a patient’s body that mimics the functions of a kidney, or transplanting a genetically modified pig kidney are at least a decade away from reality.
What Deepti wants you to know
“I see a lot of ignorance in the community about kidney disease and transplants,” Deepti told me, “I want to change that. 1 in 7 adults in the US are estimated to have some form of kidney disease, and 90% of them do not know they have it!” Diabetes and hypertension are the most common causes of kidney disease. People may not feel ill or notice symptoms until the disease is advanced. It is the 8th leading cause of death in the U.S, with more deaths annually than breast or prostate cancer.
“Most of my friends are unaware of these facts, and do not get their kidneys checked,” Deepti says, “I am now on a mission to change that.” She has just obtained certification as a Kidney Health Coach from the American Kidney Fund and plans to hold community education events on kidney health and managing kidney disease. As a first step to building awareness, she summarized her story on UCSF’s Kidney Project website.
In the meantime
Deepti has a determined and pragmatic approach to her situation. “It’s a life-or-death question, and there are only two outcomes. No matter how difficult or bitter it is, that’s my reality. I have accepted this.” Her mother is currently visiting her. Even so, “I try to be as independent as I can. I need to be prepared to handle any situation that will arise in the future.”
Deepti does not drive. She uses delivery services for groceries and day-to-day needs, and friends help out occasionally. Since public transport is not advisable given her high risk for infection, she has qualified for paratransit services. These are provided by the county to eligible individuals with disabilities, who cannot use conventional accessible bus and light rail transit service due to physical, visual, or cognitive disabilities. Paratransit enables her to get to work twice a week and manage doctor and pharmacy visits without depending on others. When necessary, she calls an Uber. She has connected with other ESRD patients through WhatsApp and Facebook groups and finds strength among others like her.
“What can others – I, or the readers – do for you?” I asked her. “Help yourself and get educated about kidney disease,” Deepti replied, “and help me lead a normal life.”
