Even though there are more than 200,000 Americans living with a kidney transplant, the National Kidney Foundation says on average, 3,000 new patients are added to the kidney waiting list every month. And 13 people a day—or 4,745 people a year—die while waiting for a kidney.
Dean Wolf has spent his entire working life as a social worker in the field helping others. Now he is asking others to help him, and said it is not an easy thing to do.
“As much as I have empathy for people, I need a kidney,” he said it is not an easy thing to do. Wolf, 67, was diagnosed with Type 2 diabetes in 1997. He was diagnosed as having kidney failure about 10 years ago, and he had robotic heart bypass surgery in 1997. He now is in end stage renal disease (ESRD) but is not on dialysis.
He’s still working every day at his family practice, Rhizome Connections, although he says he’s tired a lot, sometimes suffers from nausea and doesn’t have the stamina he once had. Some days he “feels like a wet noodle.”
Wolf is on the United Network for Organ Sharing list, a waiting list for deceased kidneys that the federal government operates. Neither Wolf’s wife nor his 25-year-old son, nor any other relative, is a match for living kidney donation. Because of his background, Wolf believes a living donor would be best for him.
It wasn’t until he connected with Harvey Mysel, founder and president of the Living Kidney Donors Network, that Wolf gathered the courage to go public with his need.
“A lot of people don’t know what to do,” Mysel said. “People don’t want to ask. I tell people it’s like networking. Even if you don’t ask, tell your story. If you’re effective, people know what you need.”
Wolf is among hundreds of thousands of people in the U.S. who are waiting for kidneys or other organs.
The National Kidney Foundation says on average, 3,000 new patients are added to the kidney waiting list every month, and 13 people a day—or 4,745 people a year—die while waiting for a kidney.
Nephrology Social Work
Social workers who work in this area say they fill many roles, such as educating patients and their families, providing counseling, developing care plans and focusing on a good quality of life for their patients.
Andrea Dekam, a nephrology social worker at the University of Michigan Dialysis Clinic in Lavonia, Mich., describes her job as being a “Jack of All Trades.”
“Nephrology social workers do a little bit of everything” and are an integral part of interdisciplinary teams, she said. “We work with both adult and pediatric populations depending on the position. We often follow patients from the beginning to the end of their disease process.”
That includes performing routine psychosocial assessments; developing care plans; and providing screenings, counseling and referrals to address mental health concerns, Dekam said.
“Patients often experience difficulties with adjustment to illness, sometimes resulting in feelings of depression or anxiety,” she said. “Many NSWs are utilizing skills learned in the Symptom-Targeted Intervention program to help address issues related to mental health and adherence.”
They also educate patients and their families on treatment options, advance directives and resources, said Dekam, LMSW, NSW-C and executive committee chair of the Council of Nephrology Social Workers.
“We provide ongoing support and encouragement to help patients maintain a good quality of life,” she said. “I think an important issue that often comes up is one’s coping or adjustment to illness. Research has shown that at any given time, 20 percent to 40 percent of the dialysis population is experiencing some level of depression. NSWs are the ones equipped to address those feelings.”
Other tasks include helping with fluid control, dietary issues, medication compliance, adherence to treatment regimen and end of life. They support the patient’s vocational goals, encouraging them to stay working, and they can serve as an advocate with employers as needed, Dekam said.
“We also help with tangible concerns related to housing, transportation, financial problems and prescription issues like coverage and cost,” she said. “Dialysis and transplant social workers work in collaboration in helping patients navigate the transplant process.”
“We solely provide the psychosocial support necessary for many patients to cope with their disease and treatment. NSWs have the ability to develop long-term, therapeutic relationships with patients due to the nature of their disease. This aids in building rapport, proper assessment and individualized interventions.”
Besides numerous duties with each patient, one long-standing challenge is high caseloads, Dekam said. Although a model from several years ago supports a caseload of 75 patients, “many NSWs have well over 100 patients, with some having 150 plus.”
In addition, some cover patients in more than one clinic, and that involves travel time. Another challenge is paperwork: Clerical tasks like faxing, filling out forms and assisting with travel arrangements are being designated to social workers instead of clerical staff, she said.
“A challenge likely encountered in all areas is lack of resources,” Dekam said. “As a nation, we know there are limited mental health resources available to patients as well as a lack of insurance coverage for them.”
With all the work comes many rewards, though. Dekam asked some of her colleagues about the rewards they found in their work. Their answers include: the ability to establish long-term, therapeutic relationships with patients; being part of the process with dialysis patients as they move to transplant; being witness to a patient receiving a successful kidney transplant; the opportunity for research and piloting new interventions; and working in a setting that reminds us that life is short but you are aware of what is truly important.
Dekam, who has been an NSW for 14 years, said she loves her job.
“It brings its challenges, but it also brings satisfaction. My caseload includes patients who have been at my clinic as long as I have,” she said. “It is rewarding to share these years with them.”
“Yes, we share sadness, but we also share joy. That is a part of life for anyone, regardless of whether you have a chronic illness. I feel blessed to be a part of their journey.”
Anyone interested in nephrology social work must have an MSW, and internships are possible while completing studies. Local CNSW chapters can provide assistance with job opportunities and continuing education, Dekam said.
When it comes to receiving an organ transplant, minorities and those who are economically disadvantaged do not fare as well as whites. African Americans, Hispanics and American Indians, all of whom are disproportionately affected by kidney failure, are less likely to receive organ transplants, the National Institutes of Health states.
Social workers—those in hospitals and dialysis centers as well as educators and researchers—are helping to turn that around even as they help those going through dialysis and transplant procedures.
While Teri Browne was working as a dialysis social worker for 13 years, she noticed a “phenomenon.”
“It was pretty common, actually,” she said. “There was a very high African American population, and patients just did not understand the process of what it means to get a transplant. Numerous patients thought they were on a transplant list because they talked to a doctor or went to a dialysis clinic.”
They were having a difficult time going through all the necessary steps in the process, said Browne, BA, MSW, Ph.D., and now associate professor at the University of South Carolina College of Social Work in Columbia, S.C.
“Research in that area shows it’s definitely a multi-faceted social problem,” she said. “There are a lot of things going on. Some of it is economic — they need insurance, they have to pay for transportation and drugs. There are some psychosocial barriers to getting a transplant, too.”
Those include arranging transportation, child care, family issues and getting off work,” Browne said.
“There’s also the issue of distrust in the medical community,” she said. “An understudied issue on this would be discrimination and less adequate care. It’s worse here in the Southeast. We may give them some information, but we don’t do a great job of helping people get kidney transplants, and that’s particularly true in the Southeast.”
The area’s transplant network has the lowest transplantation rate in America, Browne said. “It’s definitely a public health and social work crisis for some. There also is disparity in the health care system.”
While a doctoral student, Browne learned it’s critically important to use theories to examine and explain social problems.
“We know African Americans are less likely to get transplants or give organs, and we know there are racial differences in social networks,” she said. That’s the social problem.
So, if African American transplant patients had someone in their social network who donated an organ or received a transplant, if they had more information, they would be more likely to donate or receive an organ, Browne said.
The theory, then, is if dialysis teams give more information, those patients are more likely to receive a kidney transplant, she said.
“Those findings were reinforced by doing work in the Southeast,” Browne said.
When one patient said “It takes a cheerleader to get a transplant,” she thought dialysis social workers are perfectly positioned to be those cheerleaders.
One “huge” concern Browne noted was seeing the caseloads and salaries of caseworkers across the country.
“That, unfortunately, is what we find,” she said. “A lot of social workers are burdened with high caseloads and paperwork tasks. That’s a problem throughout the country, due, in part, to the fact most transplant organizations are two large companies.”
“However, that does not discount the fact that this should be done by dialysis teams,” Browne said.
One of the primary efforts of the Council of Nephrology Social Workers is to ensure social workers can advocate for themselves around issues like caseloads and inappropriate tasks, she said.
“One of the biggest issues in our country is we have these two corporations that control almost all of the dialysis units in our country,” Browne said. “That’s a problem.”
Social workers are the right people to help patients because they can aid them in several ways, she said.
“They’re instrumental in providing social support, like helping find child care or a ride to the store,” Browne said. “They can help with the day-to-day tasks in life.”
Social support tasks are important because getting a kidney transplant “is really a roller coaster,” she said. “It’s ups and downs. There’s a long time on a waiting list, so getting support from a social network is very important.”
“Information on getting a kidney transplant is also very important. If you have somebody who knows the ropes, it can really help you.”
Recent nationwide data show African Americans are 24 percent less likely to get a kidney transplant, she said. Factors include race, income and access to health care.
Connecting People and Information
With the goal of helping ESRD patients find living kidney donors, Mysel, of the Living Kidney Donors Network, has spoken to or presented training programs to patients; peer mentors; conventions and conferences; nurses; and social workers, including those working in hospitals and in corporate-owned transplantation centers; the Society of Transplant social workers; and the National Kidney Foundation of Illinois.
A transplant recipient, he started the nonprofit Living Kidney Donors Network in 2006 to provide information to patients, donors and those who work with them.
“For those in the profession, it’s kind of a training program for them,” Mysel said. “I’m hoping they can grab onto a nugget or two because they don’t have the time to pass on all the information.”
Getting out word of a living donor need works, he said. Recently an area superintendent of police fainted during a televised press conference, he said. The word got out he was in ESRD, and within a few days, “I got 250 phone calls from people wanting to donate.”
“He was in a position to have exposure,” Mysel said. “That’s why I encourage people to write a story about themselves and talk to news organizations, schools and groups to get the word out.”
“The more people you reach, the more likely you’re tapping an angel on the shoulder. People don’t know of your need, but you can help your donor find you.” His website is www.lkdn.org.
Julie Kaus is a private practice social worker in Frederick, Md., and she is friends with Wolf. She is also a living kidney donor.
Kaus, BSW, MSW, LCSW, said her sister has a very rare disorder, Wegner’s Disease, and she first received a kidney from their mother in 1987. In 2010, Kaus donated one of her kidneys to her sister, who needed her other kidney replaced.
“When her kidney started failing, I volunteered,” she said “She didn’t ask me for it. It’s a really hard thing for a recipient to ask, and my sister didn’t. I think it’s harder to receive it than it is to give it.”
The process is much more involved for the recipient than it was for her.
“The surgery was laparoscopic, so there was a very small incision,” Kaus said “I spent three days in the hospital, and within a couple of weeks, I was feeling pretty good.”
She said she has experienced no adverse effects, and she shares her story whenever possible.
Kaus said if anyone is interested in being a living donor and wants more information, they can contact her through her practice website at www.livingbalanced.org.
“I am happy to be available to anyone,” she said. “I think it’s just the most wonderful thing. If you’re in good health and you really want to make a difference, why not? It’s not that difficult, really. It’s uncomfortable, but it’s a generous thing to do. I don’t think there’s anything more noble than to give the gift of life.”
(Anyone interested in talking with Dean Wolf can contact him at 443-732-6172.)
Facts About Kidney Disease and Transplants
- The American Kidney Foundation’s website reports 26 million adults in America have Chronic Kidney Disease (CKD) and more than 90 percent of these people do not know they have it.
- As the ninth leading cause of death in the U.S., CKD causes more deaths than breast cancer or prostate cancer. Heart disease is the major cause of death for all people with CKD. More than 675,000 Americans have irreversible kidney failure, or end-stage renal disease (ESRD) and need dialysis or a kidney transplant to survive. More than 475,000 ERSD patients receive dialysis at least three times per week to replace kidney function.
- African Americans, Hispanics, Pacific Islanders, American Indians and seniors are at increased risk. Compared to whites, African Americans develop kidney failure at a rate of nearly 4-to-1, and Hispanics at a rate of 2-to-1.
- More than 200,000 Americans are living with a kidney transplant.
- The American Diabetes Association reports on its website that 9.3 percent of Americans, or 29.1 million, had diabetes in 2012 and 1.4 million more are diagnosed with the disease every year.
“Unfortunately, there are too few kidneys for all the people who need them,” the association states. “Not enough people sign up to be organ donors.”
- The association states federal law requires kidneys to be given out in a fair and efficient way. A national list contains the names and HLA types of people needing cadaver kidneys. When a donor’s kidneys are available, HLA types are checked for the best match. If more than one match equally well, the two people who have waited the longest get the kidneys. Some have to wait years before a kidney is available to them.
- As of Feb. 24, the Health Resources & Services Administration, an agency of the U.S. Department of Health and Human Services, said 118,487 people were organ transplant waiting list candidates.