Dave & Leroy: Providing HOPE for a Better Way To Manage Dialysis Pain

Dave is a Patient Advisor and steering committee member for the NIDDK-supported HOPE study

Dave had a difficult decade during his 40s. Not long after he retired early from his high-pressure job, he found himself hospitalized with end-stage renal disease (ESRD), also known as kidney failure. The dialysis he received then saved his life, but the three 4-hour maintenance dialysis sessions per week he required thereafter presented difficult hurdles for him: apart from being very time consuming, even getting to the clinic was a challenge. He took public transit as far as it would go, but walking the remaining blocks was surprisingly strenuous, as he was weakened by anemia (i.e., his blood could not carry enough oxygen throughout his body). Getting home was even harder, because the procedure itself was also draining, so he was exhausted all the time. Then there was the discomfort. When Dave was asked by health care providers at the dialysis clinic if it hurt, “I’d say ‘yes.’ When they asked me where, I couldn’t pinpoint a spot. I’d just say it hurts all over.” He notes that the experience is not the same for everyone: some people treated with dialysis do experience localized pain, while others have relatively little discomfort. For Dave, dialysis kept him alive, but also meant living with generalized pain. This was particularly true during dialysis itself because the procedure required him to sit for hours in a single position.

Unfortunately, the exhaustion and pain led him to miss some dialysis appointments. After about 6 months of this, his care team called him and his wife to a meeting that would change his life. They asked why he was missing appointments and worked with him to help solve some of the logistic and financial issues that were making dialysis such a challenge for him. They also told him if he kept missing dialysis sessions he wouldn’t live much longer. It was the nudge Dave needed to take ownership of his own health: he took it as a challenge to get to every appointment on time. After a couple of months of regular dialysis, he began to feel better. “Perhaps ‘less crappy’” would be a better way of putting it, he says. Soon he began making other healthful choices— quitting smoking, eating better, exercising, and becoming stronger.

Not long thereafter, Dave accepted a role on a kidney patient advisory committee that was seeking volunteers. He says “a lightbulb went off,” as he knew some things could be done better, and so began a role in patient advocacy that continues today. Dave had also experienced firsthand the transformative moment when his care team listened to him, and he listened to them. As an advocate, he has had the chance to help ensure such moments happen whenever possible for others living with ESRD, and to make a difference for people in his community who need dialysis; he feels he’s “had a pretty good run as a patient advocate.” In 2015, after almost 6 years on dialysis, Dave received a kidney transplant. Since then, he has become healthier still. And—more than a decade after he retired and soon thereafter got his ESRD diagnosis— Dave was able to accept a paying job proofreading documents for a law firm.

Dave says that during his years receiving dialysis he was invited to join several clinical trials, participating in most. He says he would have been more receptive to one he declined to join if they had done a better job answering his questions about the study. So, when a scientist who had heard about his advocacy work invited him to join the steering committee for a new study to improve pain treatment in people who are receiving dialysis, he was keenly interested. (A steering committee plays an integral role by setting priorities for and overseeing research studies.) The scientist said that as a Patient Advisor and member of the Steering Committee, Dave would have a major role in ensuring the study meets the needs of its participants. Dave realized this might be another opportunity to make a difference for people with ESRD. He agreed to join, and Dave—along with others from the community of people living with ESRD—soon became an integral part of the Hemodialysis Pain Reduction Effort (HOPE) research team.

“The HOPE trial exceeded my expectations…. And my expectations were high,” says Dave, speaking about how the HOPE study has prioritized including the patient perspective in all its activities.

Dave recalls that at the first Steering Committee meeting, the NIDDK project scientist, Dr. Paul Kimmel, insisted Dave and the other Patient Advisors sit at the table with the scientists—as equal members of the team. “He always looks out for us. Any opportunity to make the patient voice felt, he... makes sure we have that opportunity.” Indeed, Dr. Kimmel also “challenged us [the Patient Advisors] to champion” the patient perspective. “The HOPE trial exceeded my expectations in that regard. And my expectations were high.”

Another thing he remembers from that first meeting was seeing how valuable it was to hear the differences between the perspectives of the other Patient Advisors and his own. “Not all dialysis patients think the way that I do…. I have to keep that in mind when I think about how to approach people and how to make [study] processes go better.”

“We’re all proud to be living proof of what can be done when we’re given the opportunity to contribute,” says Dave, speaking about how patient engagement has benefited the HOPE study.

As promised, the Patient Advisors are helping ensure that the HOPE study is patient centered and patient friendly by serving not only on the Steering Committee, but also the Patient Advisory Committee and the Recruitment and Retention Committee, among others. Indeed, they have played a major part in helping to guide the participant recruitment process. In a key effort, Dave and two of the other Advisors are featured in a 5-minute recruitment video on the study website, www.HOPEHDTrial.org, explaining the trial. In it, the Patient Advisors provide their own perspectives on what it is like to experience pain from dialysis, and the value of the HOPE Study. “Between the three of us we had really different takes on it, but each take was really personal—you could tell that it was just us telling our stories,” Dave says. Notably, HOPE recruitment has been faster than expected and is meeting its goal of having 50 percent Black participants (as of the time of writing). Many of the participants cited the video as one of the reasons they joined the study. “That video has been well received,” Dave adds with understatement.

“We’re all proud to be living proof of what can be done when we’re given the opportunity to contribute.” Dave agrees with the NIDDK’s philosophy about patient engagement in research, saying, “if you want studies done well, we have to be at the table.” By never giving up his own hope, Dave has improved his health and life in countless ways. Through his ongoing advocacy and patient engagement work, Dave is also giving HOPE to others living with ESRD for better health and quality of life.

Leroy’s Story: Helping Fellow Kidney Patients by Participating in the HOPE Study

Leroy participated in the NIDDK-supported HOPE study

Leroy has led a life of service to others. A veteran, he retired to take care of his aging mother after years of driving a school bus, among other occupations. Leroy continues finding ways to contribute, such as by serving in the tenant council in his apartment building and being an advocate for other former servicemen and women and area seniors. He’s a consensus builder who prides himself on patience and common sense.

His mother had kidney failure, so he was familiar with the routine of dialysis. But his own diagnosis still came as something of a surprise. He had missed an appointment with his social worker at the Veterans Affairs (VA) clinic because he hadn’t felt well. When he came to the rescheduled appointment, the social worker thought that he still seemed ill. She called in a doctor—a kidney specialist who told Leroy that he had kidney failure and needed to go on dialysis right away. Leroy told them he needed to “get things straightened out” at home first, and the doctor replied “well, you be here first thing in the morning.” When he arrived the next day, the staff wasted no time starting hemodialysis.

For Leroy, like many people, dialysis was a painful experience. He recalls that when he first started going to dialysis “they would ask me about pain…. Every question has to have a scale, you know, from 1 to 10. But if you look at the question… there is no scale to it. Pain is pain…. So, when they asked ‘do you have pain? What is it from 1 to 10?’… I have to say a 10 because there is nothing else but 10.” What hurt in particular? “I was never afraid of needles, … but the needles hurt.” (Needles are a necessary part of receiving hemodialysis, and not all methods to reduce the discomfort of insertion work for all patients.) Leroy says that it wasn’t so bad for him at first, but the repeated procedures made the area where they insert those needles sensitive. He also noted that much of the pain—especially in the shoulder of the arm with that needle in it—comes from the many hours of having to sit very still to avoid serious bleeding that could result from dislodging the needle. Eventually it wasn’t just hurting during the procedure—it was also bad enough to wake him in the middle of the night. He says that he would sometimes take over-the-counter medicines to help with pain management.

Leroy had learned from his mother’s experiences when she was on dialysis, so he knew that it was important to pay close attention to his health care providers, and to be knowledgeable about what was going on. “I have very, very good people taking care of me there” at the VA clinic, he says. “I trust them.”

That trust is one reason why Leroy was open to participating in a clinical trial that he found out about during one of his dialysis sessions at the VA clinic. One day, as he sat in the center, he was approached about participating in NIDDK’s Hemodialysis Pain Reduction Effort (HOPE) clinical trial. Leroy found out that he was eligible for the trial and was glad to participate, knowing it might help not only himself but many others with kidney failure who were undergoing dialysis and experiencing pain.

“If something got on me—whether it was physically or mentally—I would stop for a minute and just take some deep breaths and blow it out…. And when I did that, my mind seemed to clear,” says Leroy, describing one of the strategies he learned about to help manage dialysis-related pain through participating in the HOPE study.

As part of the HOPE study, Leroy was randomly selected to receive a novel pain coping skills training intervention that provides a non-medical option to manage dialysis-related pain and involves one-on-one coaching sessions. He said that his participation began with a questionnaire about his experience with dialysis—his pain, and his quality of life. Later, a coach suggested strategies for dealing with pain and other challenges. Leroy says when he tried one of these strategies, “it worked, and I gave them feedback.” One of the strategies Leroy has found most helpful has been deep breaths. “This program got me doing it more. If something got on me—whether it was physically or mentally—I would stop for a minute and just take some deep breaths and blow it out…. And when I did that, my mind seemed to clear.… That helped me mentally and physically.”

He also found that the questions study staff asked him during his trial participation got him talking more openly, helping him reflect more clearly on his own needs and experiences. “Psychologically, I learned some things,” Leroy says, relating it to the Parable of the Mustard Seed, where what starts as a tiny speck grows to become so large an entire flock of birds can nest: the various HOPE pain management skills work together, becoming larger than their individual parts, and working together to combat pain. When asked if his participation in HOPE has improved his quality of life, he replies “Yes.”

Would he encourage other people to participate in clinical research studies like HOPE? “Oh, definitely. I would give [the study] an A plus…. Give it a try.” He also said he enjoys talking to HOPE staff.

When asked if he would encourage other people to participate in clinical research studies like HOPE, Leroy responds: “Oh, definitely. I would give [the study] an A plus.”

Leroy says that his perspective on his dialysis treatments has changed. “I don’t look at it as going to dialysis, now. It’s my job…. I go 3 days a week, I work 4 hours,” referring to the 4 hours that he spends on the dialysis machine at each session. On those days he is on a strict schedule: he gets up at 5:00 a.m., is out of the house at 6:30 a.m., and is on the dialysis machine at 7:00 a.m. At 11:00 a.m. he heads back home.

Dialysis is medical care that Leroy must do to stay alive because of his kidney failure. However, his decision to participate in the HOPE study represents another way that Leroy has continued his lifetime of service to others—people treated with dialysis stand to benefit from future HOPE research findings thanks to him and other HOPE study volunteers.