The Kidney TRUST

Keeping Chronic Kidney Disease Under Control

Dialysis Patient Advocate Has Been Living with Kidney Disease for 19 Years

Elizabeth Jones first learned that she had kidney disease in 1991 when a routine pre-employment blood test showed that she had protein in her urine.  Elizabeth was 25 years old at the time and was about to go to work at Methodist Hospital in Houston as a social worker after earning her Masters in Social Work from Virginia Commonwealth University.

Elizabeth and her husband and daughter at a Virginia Tech alumni event

The doctor who told her about her test results was not very knowledgeable or reassuring about kidney disease.  Elizabeth remembers him saying, “Eat whatever you want.  Don’t worry about putting that dialysis machine in the garage just yet.”  She was deeply troubled and not reassured.  What did this diagnosis mean for her future?  She didn’t have to wait long to find out.

Elizabeth’s new job as a social worker was focused on helping dialysis and kidney transplant patients at the hospital.  Within just a day or two of hearing about her own kidney disease diagnosis, Elizabeth was visiting the dialysis ward for the first time:  “I remember the elevator door opening and immediately seeing a man with an amputated leg hooked up with all sorts of tubes.  My stomach was in my throat.”

The new co-worker who was showing Elizabeth around the ward noticed her discomfort and put it down to a new person’s squeamishness at being in a hospital for the first time.  But Elizabeth wasn’t put off by the patients, instead she was overwhelmed that she had this mysterious disease and might find herself as a patient on a ward like this in the not so distant future.

When the initial shock wore off later the next day, she was able to confide in one of the social workers that she had just received a kidney disease diagnosis and was deeply upset about it.  A week later she was in the office of a nephrologist at the Baylor College of Medicine.

Elizabeth's daughter Julia helps out at a community education booth.

The nephrologist ran a series of tests and explained the results to Elizabeth.  Her kidneys were not functioning as they should and she had “idiopathic proteinuria,” which means that she had protein in her urine and swelling in her legs.  There was no easy cure for this condition, but there were things she could do to control it, including adopting a special diet, limiting stress, and getting as much rest as possible.

The nephrologist also told her that he thought that while pregnancy was very stressful for women with her condition, that he could probably get her through one pregnancy okay.

Elizabeth was in shock.  She had moved out to Houston to be close to her boyfriend, but she was not thinking about marriage at this point.  She was 25 and just starting out on a new career.  Suddenly she was dealing with kidney disease.  “I would go home every night and cry.  I was alone in a strange city.”  But she plunged into her new job and learned more about her new condition every day.

Elizabeth met with a dietitian and learned about how staying on a low protein diet would help alleviate her condition and keep her kidney disease from progressing.  It was a hard diet, but she gradually got used to it.  And living productively with kidney disease became a way of life.

Fast forward to March 2009.  After working as an outpatient dialysis social worker for 14 years, Elizabeth is now the Facility Administrator for a DaVita Inc. dialysis center in Fairfax, Virginia.  She is married to the boyfriend she followed to Houston and has a 9 year old daughter named Julia.  Elizabeth is a member of the Board of Directors of a national patient advocacy group called Dialysis Patient Citizens (“DPC”) and has told her story to federal legislators and policymakers many times.

Elizabeth has been living with kidney disease for almost 19 years.  During this time, she has had open heart surgery, cervical cancer and cataract surgery, but through it all has kept her kidney disease under control.  She is focused on maintaining a healthy lifestyle, which includes a special diet and medication to keep her blood pressure under control.

Elizabeth reunites with former colleagues, including Dr. Juan Olivero (at her left), who counseled her re kidney disease in the early 90s.

Elizabeth’s passion is to get the word out that there is a great deal that can be done to prevent and/or delay kidney disease.  When she was diagnosed in 1991, the medical community was focused on treatment with the specter of inevitable kidney failure and dialysis lurking in the diagnosis.  Elizabeth says that “I think the first time I heard prevention of kidney disease discussed was in 1997 or 1998.  Before then it was all about treatment.”

Looking back on her life history, Elizabeth feels like she has learned a lot.  “I was so lucky that I happened to be going to work for some of the leading nephrologists in the United States, who were already focusing on the prevention of kidney disease rather than just on treatment.  My story shows how important it is to detect kidney disease early - if you have risk factors or symptoms go to see your doctor.  Dialysis is not inevitable.  You can often control your kidney disease if you catch it early enough.”

Elizabeth also talks about how important it is to achieve balance.  “I try to keep my life as normal as possible.  My work has given me a lot of fulfillment and a focus outside my illness.  My husband has been incredibly supportive.  In terms of managing my kidney disease, it’s not just one thing - diet, keeping stress to a minimum, taking the right medications - they all play a role.”

As a patient advocate, Elizabeth is passionate about the need for the public health system to pay for prevention of kidney disease as well as its treatment.  “It’s great that the federal government pays for dialysis through the Medicare program, but wouldn’t it also make sense to pay for less expensive preventative care that would keep many people off of dialysis and save the government hundreds of thousands of dollars per patient?  That’s the message I bring to Capitol Hill on behalf of DPC.”

Elizabeth’s work is also informed by her experience.  “I’m responsible for seeing that the dialysis patients in my charge receive the best possible care.  I could easily be the one in the chair receiving dialysis.  It’s second nature to treat my patients in the way I would want to be treated.”