Patient Voices: One Patient's Journey to Dialysis
"I was 21 years old when I experienced a persistent headache that prompted a visit to my primary care physician (PCP). During this visit, it was noted that my blood pressure was high, my urine had a significant amount of protein and the blood vessels in my eyes suggested signs of hypertension. These findings required a battery of tests, referral to an eye specialist and kidney specialist (nephrologist), and daily monitoring of my blood pressure. The tests confirmed that I had hypertension and signs of Stage 2 kidney failure. I was placed on medication and a special diet for my hypertension.
As a registered nurse (RN) I religiously followed my physicians' advice and observed healthy lifestyle habits; e.g. good nutrition, adequate sleep, sufficient exercise, avoiding stress, preventing infection, maintaining social support and so on. My blood pressure was well controlled, but as the years progressed, my kidney function showed gradual and persistent deterioration. Peritoneal dialysis, hemodialysis and A-V fistula placement were discussed during each part of each visit with my nephrologist, but I never arrived at a decision. It has been nearly 30 years since I had the signs of what is now known as End Stage Renal Disease ( ESRD).
In February 2016, my nephrologist informed me that it was time for me to begin dialysis. Upon hearing the word "dialysis" I cried uncontrollably. I kept asking myself "How will I tell my family?" and "What about my job?" The following days involved the placement of a catheter and tests to begin the process of having a fistula placed. I began out-patient dialysis within a week. I decreased my work hours and feared the worst of effects of dialysis ahead. But then I met other patients at my clinic who were working full-time and others who had just returned from vacations. I listened to their stories and realized I can still live life to its fullest with dialysis as a part of my life. In August I transferred to a clinic closer to my home. The staff encouraged me to consider home hemodialysis and I am happy to report I began training this November.
Reflecting on my journey to dialysis, I want to thank everyone who directly or indirectly cared/advocated for my well-being. Nurses, techs, nurse managers, nurse practitioners, social workers, dietitians, administrative assistants and most especially my nephrologists. As a patient receiving dialysis, I believe patient engagement is paramount. I want to encourage dialysis patients to:
- Actively participate with your own care: ask questions, share your thoughts, feelings, and concerns. As patients, each of us may have the same diagnosis of ESRD, but none of us are the same - we require individualized and culturally sensitive care.
- Follow the advice of your dialysis team members. These medical personnel have chosen this specialty to advocate for us.
- When you feel down, talk to someone. You will soon realize that you are not alone.
- Share your unique experience as a patient by serving as a patient representative at your facility or as a Network 3 Patient Advisory Committee Subject Matter Expert (PAC SME). The PAC SME description and contact information can be found at http://www.qirn3.org."
Submitted by "J" with thanks for your time in reading her ESRD journey.