Life through my lenses: Living with ESKD

Kenedy Anjejo, 38, from Kenya, suffers from end-stage kidney disease (ESKD) and undergoes hemodialysis twice a week. To address the challenges of kidney disease, he dedicates part of his journey to kidney health promotion and education in Kenya to support patients who are going through the same experience.

My journey as a kidney disease patient is a tale full of tales. I was diagnosed with chronic kidney disease (CKD) in October 2019 after shuffling through hospitals to manage high blood pressure which was becoming a routine exercise. Potential risk factors such as diabetes and obesity had been ruled out, but we still didn’t know why I was hypertensive. After several visits and tests, the kidney connection was finally made after my creatinine and urea levels were found to be very high. Then, I was diagnosed with stage 4 CKD and started taking medication for about six months, but my kidneys continued to deteriorate (eGFR below 15). My nephrologist decided that I needed an alternative treatment, and the option of hemodialysis came up. We scheduled surgery to build a fistula in my left arm in June 2020, and a month later, I started using the dialysis machine. I have dialysis twice a week.

I distinguish my journey into three phases.

The initial phase was marked by confusion and despair, the second by learning and adapting through pain and treatment, and finally, the third by regaining control and creating space for ESKD.

In the early days after my diagnosis, I went through a period of asking questions with no answers coming through. It was pure disillusionment, everything seemed to be close up. One needs the best support system around to wade through this. It helps a lot as you make critical adjustments. This period can be longer or shorter depending on how it gets managed, and many can fall off here if not properly cared for.

In the second phase, I wanted to know everything about everything, and a lot of things came my way. I didn’t know much about kidney disease and kidney failure, which made me feel insecure. I tried to read, but it was rushed, and a lot of it didn’t make sense. All forms of advice, opinions, and explanations poured in as well, and I was left with a long “to-do list.” The key is to sift through and make the right decisions about your health and well-being. Above all, listen and learn and develop an interest in wanting to know more about your illness. This also helps with management. You are your first doctor, and your decisions about the course of your treatment will be greatly influenced by the knowledge and evidence gathered during this phase. The hospital is now my second home, and the nephrologist and nurses are my close associates.

For the third phase, it’s time to restart and start mobilizing my legs and hands more and more to continue living while managing the treatment. There are times when things get tough, and I miss out on buying medications on time, good meals and fruit, and some prescribed tests just because my pockets are dry. Sometimes the body crumbles from fatigue and pain, but you always have to find that all-important reserve of energy and willpower to keep going.

Kidney failure tests your inner self and your external relationships. On the inside, it tests your resilience, patience, faith, and life goals. On the outside, the walls and bridges that bind marriage, family, friendships, and kin are hit by the tremors and storms. My friends have been my greatest support. They have stood by me through the most difficult times.

Currently, I am involved in raising awareness of kidney disease and risk factors through local radios and TV, social media, and public forums in and out of my community. There is a serious knowledge gap to fill. I also advocate for the plight of renal patients by engaging relevant government entities to push for better and quality renal services and in protecting the gains already realized in renal care and management in the country. Early this year, I co-founded Network for Dialysis Patients in Kenya to offer a national platform where dialysis patients share and support each other as they go through treatment. It’s no longer about myself. I am already in, and all I do is lend my contributions to nurturing a healthy society. Our kidneys carry life, let’s work to keep them healthy.