Dolores A. McGrath, CHES®, NKF Advocate, Former Home Hemodialysis Carepartner, Living Donor
On November 30, 2018, I was very fortunate to have been in attendance once again for the NKF KDOQI Home Dialysis Controversies Conference. Last year I was a bit intimidated not knowing what to expect and feeling insignificant compared to so many others in attendance, but it turns out that my input was taken very seriously. This year I had the great pleasure of seeing some issues being addressed regarding the care partner of a home dialysis patient and watching those wheels in motion to make improvements. Addressing the needs of the home care partner (emotional, financial, stress) is a large part of helping to improve the number of patients doing dialysis treatments at home and helping them stay at home instead of spending multiple hours several days a week in a dialysis center.
Some people who assist home dialysis patients are care partners in that they may be required to perform a small portion of the duties, whereas some are truly caregivers in that they carry a very heavy load of responsibilities even doing all of the cooking, housecleaning, driving, all of the dialysis treatments and such. Regardless of the level of involvement, these home care partners may find themselves under a great deal of stress, and they may even keep it to themselves leading to care partner burnout. If the home dialysis patient does not have the support they need, they may find themselves unable to keep doing treatments at home, not to mention the stress with which a caregiver/care partner may be left to cope with possibly on their own.
Hearing stakeholders discuss statistics and new ideas that have been developed since last year was thrilling and reading the article in the American Journal of Kidney Diseases titled Exploring Barriers and Potential Solutions in Home Dialysis: An NKF-KDOQI Conference Outcomes Report on the plane ride on the way home brought some tears of joy to my eyes both as a former care partner and as a public health professional. The individuals that put this report together not only listened, but they acted.
I came to the conference this year to hopefully contribute what I could from personal experience as a care partner for my husband who was on home hemodialysis. Additionally, I was able to use my educational background in health education to convey how the care partner may need help from the patient’s healthcare team and may want help, but for reasons that will be unique to each person, may not be forthcoming about it. I spoke into the microphone a few times feeling my throat tighten and my heart pounding so hard I thought it was going to crack a few ribs, but I did it. What I realized at this year’s conference was that my input may not be from the medical side, nor did I write a report based on previous data and research, but what I am able to add comes from experience. I lived it – the good, the bad, and the ugly. What I and others like me can offer is the missing pieces to the puzzle of why more patients are not doing home dialysis. I can offer insight that may not exist in medial books, medical journals, or other evidence-based research yet available.
The entire experience as a home dialysis caregiver showed me what I am capable of achieving, such as overcoming a fear of needles and blood, and inspired me to go back to university to earn a degree in Public Health Promotion/Health Education and become an advocate, so I am rather passionate about the entire world that is dialysis and especially home dialysis.
Being a member of the NKF’s Kidney Advocacy Committee and being invited to take part in the NKF KDOQI Home Dialysis Controversies Conferences has allowed me to share my experience in an effort to help others be successful and supported on home dialysis in the hopes that their lives will be that much better moving forward. Attending conferences like these allows me to continually learn, and I thank the NKF for the opportunities they have and continue to provide me.