Be that person, be the Change!
I was diagnosed with FSGS at 5 years old and have been working with nephrologists my whole life, I always knew that at some point I would require dialysis and a transplant. I moved to Los Angeles in 2016 after spending the past 12 years in Hong Kong and working myself into the ICU. I came to Los Angeles, to take a breather, focus on my health, go back to college and re-evaluate life.
Shortly after moving here, I was blessed to meet Dr. Rastogi, in our first meeting something he said drastically changed my perspective. I had gone to the appointment expecting him to say we will monitor you and you will need to go on dialysis and then wait on the list for a transplant, this was the standard plan. Dr Rastogi asked me if I had considered a living donor, I mentioned to him that I only have one brother and he has health issues so it won’t work out, Dr. Rastogi told me to go to social media. He mentioned that he has seen too many cases in which friends and family members would have been happy to donate if they knew it was an option and they only found out when it was too late, and this isn’t fair to either party. Now that’s food for thought.
I then met one of Dr. Rastogi’s team mates and he told me about a story of a person about my age who didn’t have a donor and so he went to Facebook, initially the response to his request was negative and he gave up and stopped checking his account. A few weeks later, he logged in and he had received several messages from someone wanting to donate their kidney to him, he called them skeptical about the intention and the lady on the phone said that she wants to donate her kidney to him, no strings attached. It turns out that the lady lost her mom to kidney disease because she couldn’t find a donor on time and she and her sisters were under the age of 18 so they couldn’t donate, but they did make a pact to donate their kidneys at some point in their lives.
I knew what I had to do, asking for help doesn’t come easy for me, all the more reason to step out of my comfort zone and ask. I had my brother record a video of me explaining my situation and making my request, I had over 8,000 views in a week and several people came forward. A lot of them haven’t qualified or changed their minds, however, there are still a few being tested at the moment so I am optimistic that I will have my kidney shortly.
After going through this journey, I went to meet Dr. Rastogi and his office Manager Christina Lopez and asked them what I can do to help their efforts in raising awareness for Kidney Disease. Through these discussions, we decided to re-ignite the Green Ribbon Campaign, and I assisted them in arranging for thousands of Green Ribbons, as well as Green Ribbon metal pins, have become an ambassador for the program, arranged for a booth at the LA marathon to help spread our word, gave a speech and helped out with the organization of the Kidney fair and attend numerous functions and meeting all with the mission of spreading awareness of Kidney Disease.
Dr. Rastogi and his team including Dr. Kamgar and Dr. Nobakht are truly amazing, I have never met such a supportive compassionate group of doctors who work so closely with their patients,
Having kidney disease is extremely challenging, and as a patient, I feel very blessed to be in a position to give back and help others that are in my shoes. Thank you Dr. Rastogi for making this possible.