Aryana Motlagh is a high school student and CKF volunteer from Miami, FL. Aryana’s father was recently put on the transplant waitlist for a kidney transplant. CKF Program Manager, CC Cunningham, interviewed Aryana to discuss her dad’s situation and how it’s inspired her to take on advocacy work in the world of organ donation. Transcribed and edited for publication by CC Cunningham.
My dad was diagnosed with PKD (polycystic kidney disease) early on. When he was first diagnosed, the doctors really didn’t tell him much about kidney health and how to prevent the need for dialysis later down the road. He’s gotten to a point now where he’s end-stage for PKD, the last stage, and his kidneys are severely damaged and failing. Right now, less than 20% of my dad’s kidneys work. PKD is a genetic disease: my grandpa passed away from it before I was born, my uncle currently has it, and there’s a 50% chance I already have it, but I won’t know until I’m older…or if I take a genetics test. There’s no real cure for PKD. Once it causes your kidneys to fail, a kidney transplant is usually required. Dialysis and transplant are really the only two options, once your kidneys can’t function to a certain extent.
My dad did his own research on maintaining proper kidney health and learned that there are a bunch of foods you’re restricted from eating if you have a kidney disorder, like salt and certain foods with potassium. He began restricting his diet to certain foods that won’t make his condition worse. He changed his diet to an ovo-vegetarian diet: the only animal protein he can have is the white part of eggs—even the yolk is bad for his kidneys. That’s something that has affected us as his family members: he can’t eat the same foods we eat. We have to eat separate meals…so, even the small things end up affecting the family of someone awaiting transplant. But, it’s really helped and, with consultation from his doctors, he’s been able to keep his kidneys functioning at around the same levels for the last two years.
He got on the national transplant waitlist last summer, in 2020, to receive a kidney transplant. The whole time, it felt like we were always surrounded by doctors, social workers, constant phone calls, in and out of hospitals. I also learned how many people are actually involved in the organ donation process. It’s not just a doctor, a recipient, and a donor. There are all sorts of people involved: social workers, hospital workers, nurses, transplant coordinators, organ donation specialists. That was really interesting. I learned a lot over the summer. I went to the grocery store with my dad one time and we had to stand in an aisle for 20 minutes because his social worker called him. It’s just always very time-consuming: every day, it seems like something different is going on.
That said, it has been a huge relief for our whole family to know that our dad is officially listed on the transplant waitlist now. There are so many conditions a patient has to meet in order to even qualify for the waitlist. And it’s not just physical conditions—you actually have to meet mental health standards too. They want to make sure you’re in a good place mentally before giving you a spot. After so much work to get on the list and now, he’s finally there…it just feels like all the work paid off, for all of us.
One of the biggest reasons it was so hard for my dad to get on the waitlist in the first place was because he wasn’t on dialysis. Most people on dialysis get a priority spot on the waitlist for kidney transplant. That also impacts his wait time for a new kidney: he’s on the waitlist, but he’s not listed at critical need because he isn’t on dialysis. That means his wait time will likely be longer. One thing I’ve learned since I started advocating for organ donation is how many people actually pass away while waiting for transplant. An average of 17 people in the United States die every day while on the waitlist. That means there are people listed on the waitlist who need a lifesaving transplant right now.
With the COVID-19 pandemic starting in March of last year, that became another obstacle for my dad and his health. I don’t think it had a huge impact on him actually getting on the transplant waitlist, but it has definitely affected his life. As someone with end-stage kidney failure, my dad is at a high risk of contracting COVID and having really bad symptoms if he does get it. And again, as family members of someone awaiting transplant, our lives were affected because of the possibility we could give it to him. On top of that, my mom is a teacher, so the chances of her contracting COVID were really high, so that was a big concern. When the pandemic first broke out, even before the CDC (Centers for Disease Control and Prevention) told us to wear masks, we were already wearing them. We weren’t going outside. Thankfully, both my dad and my mom got vaccinated a few weeks ago, so that’s helped relieve some of the stress. I haven’t received my vaccination since it isn’t available to people my age yet where I live—I’m 15 years old.
This past year was my first year of high school, so almost immediately after my dad got put on the transplant waitlist last summer, I started my freshman year. I was introduced to Life Alliance Organ Recovery Agency—they’re an organ procurement organization here in Miami—and I expressed interest in getting involved with organ donation advocacy. They asked me what my goals were and, since I’m a high school student, they connected me with SODA (Student Organ Donation Advocates), a nonprofit that raises awareness for organ donation through student-led chapters at high schools and colleges around the country. So, I got some friends together and we started a SODA chapter at our school. Then, through SODA, I learned about the Chris Klug Foundation. It’s been amazing—I got introduced to this whole world of organ donation advocacy and discovered that it’s really what I want to do.
For people like me who have a family member going through the transplant process, I would encourage them to advocate for organ donation in their own way. You don’t have to start an organization, you don’t have to do something super big—you can start by registering yourself as an organ donor, you can start by educating yourself on organ donation. It’s not an experience that a lot of people have—having a family member go through the transplant process. It’s a huge process and it’s anything but simple, even to go through it as a family member. You might not be the transplant recipient, but your life is going to change. And that’s okay! Take away as much as you can from your experience. You learn so much in the process and you can use what you’ve learned to share your story. When I tell people my story, it really touches them. It has an impact and it’s given me the ability to help people learn and better understand the concept of organ donation as a whole. Use your story and the situation you’re in as a platform to teach and inspire others who may not know the whole picture of organ donation and, hopefully, provide encouragement to others going through similar situations.