My journey with End Stage Renal Disease (ESRD) has included much suffering, but it has also shaped me into a stronger, more loving man. Throughout all of it, I’ve adjusted to a “new normal” with ESRD and found that life can still be fulfilling and full of possibilities.
I worked as a chauffeur and ran a public transportation Limousine service business just before the COVID-19 pandemic began in 2020. Once the pandemic hit, most of the businesses were shutdown with an executive order and therefore I, like many others, also lost most of my customers and could no longer work. The financial stress of the pandemic proved difficult enough for me and my family.
However, during the pandemic I also experienced strange health symptoms like high blood pressure and shortness of breath with other deteriorating conditions including fatigue with loss of appetite, nausea, vomiting, and body pain. During COVID-19, these symptoms worsened and in November of 2020 I ended up in the emergency room. There, I learned that I have End Stage Renal Disease (ESRD), or kidney failure, and that I’d have to endure an arduous and frequent treatment called dialysis to survive.
I was shocked. Would I survive? Would my life ever be the same? Amid such widespread suffering during the COVID-19 pandemic, would I be able to get the care I need? I worried for my wife and my 14 years old child, who relied on me to keep the family afloat.
Finding any healthcare appointments during the pandemic, let alone appointments for surgery or dialysis treatment, proved difficult. I needed the surgery required for peritoneal dialysis (PD), or the filtering of blood through a surgical opening in the stomach, and consistent dialysis itself. That November, I began my dialysis journey, my “new normal.” This was also the new way of living together for the whole family too.
Peritoneal dialysis, all things considered, has been essential for my health. It is the healthiest form of dialysis for my heart, relaxes me a bit, and has since improved my mental clarity and physical strength. However, during those initial months of treatment, I lost weight and found myself vomiting often. Fortunately, I recovered and reached an equilibrium with continued treatment and improved eating habits.
Today, like every dialysis patient, I continue to experience financial and physical difficulties. But I have found that my life is still incredibly rewarding and full of potential. As I adjusted to my new normal, I gained a deeper appreciation for my family and faith.
Since I began my dialysis journey, my family and I have grown closer than ever. I have found myself lucky to have my loving wife, Munira, and my son, Kaysan, beside me. Now, I have more time to help my child with schoolwork and help my wife around the house. My family has supported me through this difficult time with grace and love. Kaysan in particular has been by my side learning with me more about life and growing into a young, compassionate, and caring human being. He was the one who encouraged me to become a DPC patient ambassador, which is why I am writing to you today and telling my story.
I belong to the sect of Ismaili Muslim community and because of my strong faith and spiritual education beliefs, I am a better man, father, husband, and a survivor. As I have adjusted to my new normal, I’ve also come to rely on God, which has strengthened me in ways otherwise impossible.
My involvement with DPC has provided me with a community of people from whom I can learn. I connect with others on the same journey in their pain and triumph. I advocate for our needs on Capitol Hill, and DPC’s meaningful work encourages me to keep going as I wait for a transplant.
My “new normal” brought with it a fear of change and a fear of death. However, I discovered that while my life might not be the same as before my diagnosis, I could still live a happy and fulfilling life. With my family, faith, and DPC community, I enjoy life more every day.