Patient Stories

Hi, my name is Tara Marashi and I am currently in my fourth year of undergrad at the University of California, Santa Cruz. My story begins all the way back to when my dad was diagnosed with Alport Syndrome. He was in his mid-40s and I was about 3 or 4 years old and didn’t know much about what was happening to him. He went to his routine physical and was told that protein was found in his urine and also that his blood pressure was higher than normal. He then went on to get a biopsy which later confirmed that he did have Alport Syndrome. It was a shock to us all that this happened because no one else that we knew of had Alport Syndrome in our family. The only person on my dad’s side of the family who had a kidney disease was my dad’s uncle, who passed away a long time ago due to kidney failure, however, it was never known if he had Alport syndrome. The doctors told my dad that he would eventually need to go on dialysis, but not until he is about 65 or 70 so he didn’t need to worry about it yet.

As the years went on after my dad’s diagnosis, he gradually started to lose his hearing, which is one of the symptoms of Alports, and I remember him getting hearing aids and starting to take more medications to help with his kidney function. My dad was a very active person who always played soccer on the weekends with his friends and coached me in soccer in his free time. It was hard to watch him start to get weaker and less active as his kidneys started to get weaker.

Fast forward to May of 2010 where my dad was suddenly hospitalized because of major pain in his stomach. I remember that day like it was yesterday because I was coming home from school and my aunt had to watch my brother and I while my mom took my dad to the hospital. I was so scared and worried for my dad, because I still didn’t know too much about what his condition was and the severity of it. After he came home from the hospital he had to start dialysis, which became a part of his normal routine for the next 6 years.

After my dad came home from the hospital my parents were a bit worried about my brother and I because Alport Syndrome is a genetic disease that can be passed down to your children. My brother showed no sign of having Alports, however, ever since I was little I had always had blood in my urine which can be an indicator of Alports. Because of that, I started seeing Dr. Yadin, who is a pediatric nephrologist at UCLA. I would then visit her once a year to make sure my numbers were good with urine and blood tests and I would also get a special hearing test twice a year to make sure I don’t have any signs of hearing loss.

Once my dad started dialysis, my mom tried to get tested to see if she would be a match for a kidney donation. Unfortunately, she wasn’t a match and so we had to wait as my dad was placed on the transplant list. He had to go to dialysis 3 days a week and because of that he couldn’t coach me in soccer anymore or be able to attend some school events such as orchestra concerts and soccer games because it would be the same time as his dialysis.

My family also never travelled because it is pretty hard to transfer to a dialysis center that is somewhere else. A few years into dialysis, my family went to Utah for a week and my dad had to drive 2 hours from where we were staying just to get dialysis and after that trip he got really sick again so we didn’t attempt to do a long vacation again.

When I was in high school, I played soccer and all of my games were on the days my dad had dialysis. He always loved to come watch me play and so he would make sure that every home game he was there even if that meant he had to move his dialysis time later in the day and come home much later at night.

Every night when he came home from dialysis he would look tired and he had to wake up super early for work the next day and it was a never-ending routine. There was nothing I wanted more than for my dad to get a transplant so he wouldn’t have to go through it anymore. Our miracle came in July of 2016 when my dad was about to go to work and we got a call from the hospital that told him that they have a kidney for him and that he needed to get to the hospital as soon as he can to prepare for surgery. It was a crazy day for us all and it was so surprising, but my mom drove him to the hospital and he had a successful surgery and 4 years later he is doing better than ever.

After my dad’s transplant, I was still seeing Dr. Yadin yearly until I would turn 21 which was then the time I would have to start seeing an adult nephrologist. Back in March of this year, I had my last visit with Dr. Yadin and she referred me to start going to Dr. Rastogi for my future care. In August I had my first ever appointment with Dr. Rastogi and as he was getting to know me I was telling him about how I am interested in working in genetics and going to grad school to possibly become a genetic counselor. He started telling me all about the CORE Kidney program and how I should get involved as well as applying to be a part of Bruin Beans. Just from my one visit with Dr. Rastogi, I now have all these new opportunities to get involved with outreach and education about Kidney Disease and I am also planning on working on a children’s book about Alport Syndrome.

I am so grateful to be volunteering with the CORE Kidney program and to have met Dr. Rastogi and there is so much to look forward to in my future now because of it.

(2021)