The meeting was scheduled for 4 p.m. in the Shapiro Campus Center. At first glance, Dania Khandaker, 27 and the department coordinator for the Brandeis National Committee, did not particularly stand out from the other interview subjects in the Einstein’s crowd. Once recognition gave way to introductions, she stood apart from other interviewees. Because of her Lupus and immunosuppressant drugs, which make her the constant victim of being sick, the typical handshake was not an option.
Khandaker’s experience with dual-kidney failure did not have a toll on her sense of humor or optimism—a feat considering what she deals with on a day-to-day basis. Despite what it seemed, her life with kidney failure is a challenge. The torment that is life without functional kidneys is not necessarily apparent on the surface.
“No one sees my catheters,” she said as she pulled her shirt forward and exposed the catheter on her chest. This was just the start of Khandaker’s internal struggle with kidney failure that one would never know just by looking at her.
“Dialysis feels like jail,” she said. Khandaker’s has to go in for dialysis, medical treatment for kidney failure, after work for four hours every few days. For the process of dialysis, a needle must be inserted into her arm and connected to a large medical machine. “I don’t have a choice,” she said, since dialysis is her only treatment option.
She asked me to imagine what this does psychologically to people, when they must be strapped to a machine for four hours with a needle stuck in their arm and there is no other option. Medical jail is not a bad characterization.
The imprisoned feeling, however, is just one of the many ways that dialysis affects Khandaker. According to Khandaker’s website, “Dialysis takes a physical toll on my body, leaving me tired and weak. I am not living my life anymore as other 26-year-olds do. I used to have a 40-hour work schedule and would then take care of my household.” Furthermore, Khandaker’s, whose family is from Bangladesh, used to be an avid traveler who enjoyed “traveling to new and exotic locations.” Traveling, Khandaker’s said, was a “huge part of my identity.” But with dialysis, and with a set treatment center near her home in Newton, Khandaker’s cannot “just hop on a plane.”
Forget exotic locations; Khandaker’s can’t even go home to Bangladesh. She worries that if one of her older parents, who are in Bangladesh, gets sick or is in need, she would not be able to travel back to see them.
Catheters and dialysis are just the start of how living without functional kidneys affects Khandaker’s life in ways that the average observer cannot possibly know, given her seemingly well spirited demeanor. Khandaker stressed how the infringement of little things, life’s pleasures most people take for granted, is a major factor that makes having kidney failure so radically life altering. “I haven’t showered in [months]. I have to take scrub baths like an old person,” Khandaker said. When Khandaker found out she could not take showers, she cried.
Consider how many cups of coffee you drink a day. Or orange juice. Or water. “People don’t think twice” about the simple pleasure of drinking. Khandaker’s is on a strict fluid limit and cannot enjoy a drink whenever she likes, let alone have a bottle of water whenever she wants.
The immunosuppressant medicine that makes her unable to shake hands, the catheter in her chest, the routine necessity to attach herself to a machine for four hours of blood filtration. The inability to drink. The inability to travel. The inability to be oneself. The inability to even shower. All summed up in six powerful humanizing words by a young, hopeful and helpless victim:
“It’s not a way to live.”
Fortunately, there is light at the end of the tunnel for kidney disease, for unlike other debilitating diseases, kidney failure has a salient cure: transplant. And since everyone has two kidneys, live donation is a feasible option. Khandaker’s is currently on the national waiting list for kidney donations, but is desperately hoping to find a live donor because, on the national waiting list of 121,678, she expects a wait time of seven years.
If she has to wait for that long, she would be 34 by the time she had a donation and will have to spend all the interceding years with chest catheters, fluid limitations, scrub baths, identity-stripping travel restrictions and routine trips to the treatment center after work for four hours to be connected to a machine through deep needles just to survive. She would have to spend the next seven years in a way that she feels “is not a way to live,” instead of comfortably raising a family and living a vibrant life.
In searching for a donor, Khandaker needs someone 18-45 with blood type B or O, regardless of if the blood type is positive or negative. If someone gets tested and does not match her, a national matching kidney swap program is available, so that someone who wants to donate to Khandaker, but does not match, can donate to someone else they do match with. The person who wanted to donate to this other patient, but cannot and is a match to Khandaker, will donate to Khandaker. Two lives will be saved.
Donating a kidney is scary and may not be for everyone. However, everyone can help and can find Khandaker (and so many other patients in need of a kidney) a donor. Khandaker said she searches for a donor by asking everyone she meets. She never knows who would know something or someone, be willing to help or even be willing to donate.
When asked the biggest way that others can help, other than donating, she responded that people can tell everyone they know. Since it only takes one donor to save Khandaker’s life and so many other lives, if everyone tells everyone they know, it is likely one donor will be found. So please, tell everyone you know about Khandaker’s story and kidney disease in general. Share with everyone you can the personal struggle of kidney patients such as Khandaker.
Also, consider doing some advocacy with the National Kidney Foundation on important legislation. Read about donating your kidney when you pass away, and perhaps even while you are still alive. Watch some of the wonderful TED Talks on YouTube about kidney donations.
And perhaps even consider giving Khandaker and many others the gift of life. Because as one donor, Allyssa Bates, has said in her TED Talk, “I recognize that [saying yes] to donating a kidney may be terrifying for you. But please know that ‘no’ is terrifying for those people on the waiting list.”
Khandaker went to college with the hope of “working in a field where [she] could change the world,” and works now in research administration where she helps students change the world everyday. Please do all you can to help change her world, whether that is just learning more and telling everyone you know or donating.
For more information on Khandaker, see her website: http://www.danianeedsakidney.com/my-story.html