Precious McCowan was diagnosed with end stage renal disease (ESRD) a decade ago and has since devoted her life to advocating for patients with the illness. She currently serves as a member of the ESRD Network 14 Patient Advisory Council (PAC), the Medical Review Board (MRB), the National Patient and Family Engagement-Learning and Action Network (NPFE-LAN) and the Kidney Community Emergency Response (KCER) team.
1. Can you tell us about your decade-long battle with end stage renal disease?
At the age of nine I was diagnosed with type 1 diabetes, but as a young adult I didn’t take care of myself the way my health care team expected. As I became older, I began to have issues with hypertension and later acute kidney deficiency. In 2009, I was diagnosed with stage 5 end stage renal disease. I was placed on emergency dialysis at the beginning of 2010 while also receiving both a kidney and pancreas transplant four months after starting in-center hemodialysis. For the first six months, both transplanted organs worked perfectly. I was excited about this new journey of health, I was compliant with orders from my health care team and was feeling great.
Seven months after the transplant, my two-year-old son passed away. We decided to donate his organs to help prolong the lives of others waiting to receive a transplant. Unfortunately, four days later, my body rejected the transplanted kidney and pancreas I’d received, so I had to start emergency dialysis immediately. Since then, for the past nine years, I have been on in-center hemodialysis. Having to restart dialysis was very challenging, physically and mentally. It was difficult for me to accept that dialysis was once again part of my life.
I was hospitalized a total of 34 times between 2011 and 2013. I remember being very sick during that time, without realizing that I was also dealing with hidden depression because of my circumstances. For two years I struggled on dialysis and was disconnected with my health, family and life. In mid-2013, I woke up in the hospital and decided to get on board with my health care team — to take charge of my health and live.
2. How has ESRD changed your perspective on health care?
ESRD is a chronic condition that affects millions across the United States. From a young age I depended heavily on health care, and at the time, viewed it as a service provided to those who needed it. Now, as an advocate for ESRD awareness, I perceive health care as a network of health professionals working together to advance the quality of care and produce better outcomes with chronic care management, health literacy and patient and family engagement. As an ESRD advocate and patient mentor, I have learned that chronic condition management is at its best when health care professionals collaborate with each other, include the patient and/or family in every aspect of their care, and speak the language of the patient to assure that procedures, treatments and care are all understood.
3. What work have you done advocating for patients with ESRD?
To encourage ESRD advocacy, I proudly serve as a member of several organizations including the ESRD Network 14 PAC, MRB, the NPFE-LAN and the KCER.
Some of the most memorable collaborative work consists of the Network 14 Patient and Family Engagement Calendar, which includes an ESRD- or dialysis-related educational topic each month that is simplified and speaks the language of the patient. Since the development of this calendar, ESRD patients across Texas, as well as CMS leadership, have said the calendar has been a very effective ESRD health management educational tool. This vibrant and visible calendar is posted in every dialysis unit in Texas.
With the PAC, I have assisted with developing a Help on Processing Everything Dialysis (HOPE) tool that consists of ESRD patient experiences, motivational and inspirational literature, ESRD education, and resources for coping and thriving on dialysis. This was created to serve as a guide to make the transition from chronic kidney disease (CKD) to ESRD and dialysis better understood by patients and their families. I have also met with Texas state representatives to advocate for money to continue a preventative program for CKD and ESRD that was started by the Texas Renal Coalition. As an ESRD patient advocate, I have learned that proficient work and results take time yet change only comes when voices speak loudly.
4. At the 2019 CMS Quality Conference, you urged attendees to make health care more patient-centered. What success have you seen in making sure the patient voice plays a part in improving health care delivery?
In the ESRD community, patient advocates favor the saying, “nothing about me without me,” meaning the patient needs to be included in every decision and discussion. This tagline is introduced to ESRD patients in most educational and patient-mentoring sessions. The motto elevates patient engagement, and when it’s utilized by providers, helps to develop a health care team that encompasses the patient.
Since the implementation and practice of the motto, I introduced this concept to the MRB, which consists of ESRD clinicians and nephrologists. Because of this, their patients are more involved with their health and ask more questions pertaining to their care and medication management.
I also learned from other ESRD patients that the “nothing about me without me” mindset has helped to break communication barriers between clinician and patient and allow patients to feel more comfortable being honest about their health experiences and practices. The motto has also been prominent in my own life, enabling care that takes into account my concerns when making decisions about my health.
I was able to share this motto and its objectives with health care professionals at the 2019 CMS Quality Conference in Baltimore on January 29 during the patient and family engagement panel on day one, and am looking forward to feedback from people practicing it over time.
5. Anything else you’d like readers to know?
Being an ESRD advocate and mentor is dear to my heart. It is a volunteer position that I am eager to do daily. I thrive when patients are engaged in their care and are aware of the disease and what it entails.
Advocacy for the ESRD population is progressing across the country, but we need the commitment of health care professionals to evolve patient-centered care and health engagement. As patients, we look to care providers and leaders to make living with a chronic condition more manageable and achievable. Despite the challenges endured by health care professionals, on behalf of the ESRD population, we appreciate your continuous care and commitment.