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.
My story, it all started with an idea, "...be the change you want to see in the world." - Mahatma Gandhi
I think we all dream of different things..ideas, concepts, trips, the future, but we don't act on them. I had a vision. Do something to help someone, not a friend or a family member, but someone I didn't know, a complete stranger. I had heard of someone donating a kidney to a friend years ago, and I remember thinking, "Hmm, I would do that." I thought of it again, but this time, I decided to act on it.
In July of 2017, I made a choice to look into kidney donation. I registered with the National Kidney Registry. They contacted me and the process started. They had me choose a hospital from a list of locations near me, and I chose UCLA. I couldn't have imagined how this would change my life. My first appointment was in August. Everyone in the Connie Frank Transplant Center that I came in contact with was more than wonderful. I met people that, I'm confident, will be lifelong friends. It's not just about them "wanting" your kidney; they genuinely care about you as a person. You're evaluated as a potential donor, and you're also educated on the whole process. Education. Awareness. Huge concepts in the would of kidney disease. Who could imagine that, once a person is on the list for a kidney, they wait an average of 8-10 years! Years. Not months, but years. There're over 103,000 people that are registered and waiting for a kidney. Many people die before they receive one or become too sick to get their transplant. I didn't know.
On November 1, 2017, I gave a gift to a phenomenal, kindhearted man. I donated a kidney. He calls me his guardian angel. In all reality, he's mine. He allowed me to discover something in myself, I guess it was that something that I needed to find. It's one of the best things I've ever done. People talk about having a "bucket list", I don't need one anymore. I now have a sense of joy inside, you might think it sounds crazy, but I'm truly content. I'm sure that somehow, our paths were meant to cross, and our bond is undeniable.
A quick summary of me...I'm a 53 year old, single mom. I have three amazing children (Brynne 22, Cole 19, Riley 16). We're definitely a pet household, which the 4 dogs and 2 cats can attest to, if they could talk. I love to run which helps my mental health as well as physical. I also have two full time jobs, all of which keep me busy. My point Six weeks after donating, I'm back to doing everything I was before, except I do them with a little more spring in my step. No limits, except I was told to refrain from participating in contact sports, as not to risk damaging my other kidney. If you've ever thought about donating, but thought you wouldn't be able to do the things you used to, rest assured that you can!
One thing that I want to add...ultimately, I would hope to inspire others to donate or, at least, encourage others to get the word out about how important kidney donation is. During my donation process, I met the most astounding group of individuals, who each have their own part that add to the cohesiveness of the group - the UCLA CORE Kidney Program, Dr. Rastogi and his team and the Green Ribbon Campaign. When people talk about Dr. Rastogi, I hear the words amazing, caring, genuine, kind, great..honestly, in my opinion, there are no words to describe him. It's more of a feeling that you get when you're around the doctor and his team. Passion. True, sincere passion to help others. You feel a bond, and, at risk of sounding cliche, you just know they're there for the greater good. And then, you want to be a part of that bond, that family. Their mission - "to go where no man has gone before", well kind of..actually, in their own words "Our mission is to improve healthcare delivery to patients with kidney disease by implementing our CORE values of Clinical Excellence, Outreach, Research, and Education." Through education and awareness, you can fight kidney disease and make a difference. I have to say that it brings me such inner joy to be able to be a part of it. My journey didn't end when I donated a kidney, it just started.
Be that person. Be the change.