When the going gets tough, the tough get going

Samiir Halady, 49, from India, recounts how he transitioned from being a patient in need to supporting other patients during the COVID-19 pandemic and beyond. Following his transplant surgery, he felt compelled to assist kidney patients who were experiencing difficulties.

My kidney transplant was scheduled for the next morning. My life on dialysis had been nothing short of a rollercoaster ride. Memories of those years were fleeting in my mind one after the other when I went to bed. I felt restless and spent a sleepless night.

I had been diagnosed with membranoproliferative glomerulonephritis (MPGN) [Editor’s note: a form of glomerulonephritis caused by an abnormal immune response].  in 2001 and started dialysis the following year. My first session itself was a harrowing experience as I suffered from a bout of cramps and writhed in pain. During the second session, I experienced rigors. What a way to enter the world of dialysis, which I endured for 17 long years!

Those were times when I really felt the need for a mentor, someone to guide me, not as a doctor, but as a friend. But there was no one to fill that role. On the career front, I had been pretty successful, until I revealed my disease. Overnight, I lost my mid-senior management job.

Not one to give up, I decided to pursue my passion for advertising and set up my own business. Even while successfully completing assignments for top corporates, I struggled with my treatment. I often felt physically weak, and there were occasions when I nearly fainted on the road.

Meanwhile, I had to wind up my business due to losses encountered as a result of some inadvertent errors on my part. That was the time social media was nascent and I got active. My content gained popularity, and I got an offer from an interactive agency for a full-time job. Although the offer was for an entry-level position, I seized the opportunity and took it up. Working during the day, I got my dialysis scheduled for late-night sessions.

Despite my busy schedule, I made time to pursue my passion for hiking and photography. I founded a hiking group called V Hikerz that has more than 700 members today.

I advanced quickly in my renewed career as well and headed a small foreign boutique agency in India within six years. I was primarily into Digital Strategy and had learned most aspects of the subject hands-on. Being a pioneer, I got the opportunity to design the curriculum for a B school and some short-term courses.

I have also been doing peer counseling for 17 years now, using my experience to guide, encourage and support patients in facing their disease with a positive attitude. I have fortunately managed to overcome obstacles at various stages during my journey with dialysis. All through the years, my mother has been my source of inspiration. She constantly encouraged me to stay positive and active, and at the age of 70, she was going to donate her kidney to me!

My transplant surgery was successfully performed on June 27, 2019. It gave me a new life and filled me with the energy and determination to do something more for the cause of kidney patients.
Within a year of my transplant, the pandemic struck, and the country went into lockdown. It was a tough period for everyone, especially for patients who had to commute to the hospital regularly for dialysisI felt it was my duty to help them.

I created conveyance options, including a carpool of volunteers to ferry patients to the hospital and back, and wheelchair taxis at discounted rates. Due to my efforts, both national app-based taxi operators were influenced to create a product purely for patients to reach hospitals and back. I feel contented that my efforts have been instrumental in saving a few thousand lives.

Yet, there is a lot more that needs to be done and I hope to contribute to resolving some issues that other kidney patients in India face. I wish to persuade the government to implement the following for the benefit of my fellow patients. 

  • Schemes to take care of the enormous expenses involved in CKD treatment.  
  • The process to disseminate information about transplant guidelines and processes to facilitate transplants 
  • Create a database of patients looking for swap donors 
  • Make cadaver donations default with an opt-out clause for people who don’t wish to donate their relatives’ organs 
  • Encourage dialysis clinics to provide nighttime dialysis services. This will enable more patients to work during the day in order to meet expenses 

I hope and pray that I can be of more help to fellow patients and the world at large.