Patient Stories: Dena Y.

Interview by Joanne Batt

I was diagnosed with FSGS – focal segmental glomerulosclerosis, a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood – during my first pregnancy, when I was 20 years old. My main issue was spilling of protein (a lot of protein in the urine, which is often a sign of kidney disease). I had another baby four years later, and after that, my creatinine started going up. That’s when my doctor got concerned and referred me to the University of California, San Francisco Nephrology clinic.

For many years, I had been seeing a local nephrologist for my kidney disease in the suburb where I live, about 90 miles from San Francisco. About 3 years ago, when my creatinine started going up, and kept going up, my doctor said he wanted a second opinion. He said UCSF has some of the best doctors in the area, so he referred me there to see what they could do to help me with my treatment. He said they are knowledgeable about different types of medications that might be able to help me.

I made my first appointment with Dr. Leticia Rolon, and before I saw her, I was nervous. I was used to seeing my local doctor in my small town. I didn’t know how it would go, if I was going to see a bunch of different doctors, or what they would say. I was afraid that maybe they were going to say that they couldn’t help me. Maybe my condition was worse. I just didn’t know what to expect. When I met Dr. Rolon, she was very caring. She made me feel comfortable and made me feel that she actually cared about me. Although both she and my local doctor are both amazing, Dr. Rolon had additional knowledge about different medications. She suggested a couple of new medications based on my diagnosis and my symptoms, which worked to slow down the progression of my kidney disease. It has been a few years with a tough kidney disease and I’m still not on dialysis, and I am thankful for that.

My kidney disease, FSGS, makes me feel tired, and worried about the future. I worry that I will have to start dialysis. I wonder who will help care for my young kids. I wonder if it will get worse and how it will affect me. I hope I can fight this disease for as long as I can so I can be here to care for my kids.

I appreciate that I can contact Dr. Rolon day or night. Her office is easily reachable, and responsive. If I have concerns about my health, if I am not feeling well, I message her. For example, when I was feeling very fatigued, she checked my labs to make sure that my levels were in normal ranges. She always helps me when I contact her with concerns.

Over time I have noticed that I get more tired as my kidney function has lessened, but I’m a fighter. I do my best to eat healthy, work out, and be the best that I can be. I take it day by day.

My doctors didn’t give up on me, and tried different things. I have been able to try different medications to see if what they could do for me. I think that they have helped prolong the progression of my disease. I was very nervous about whether the medications would work for me, and what would happen next. I am grateful that there are other medications out there that can help slow my disease.

At one point I was crying because I felt like it was the end of the world for me, when I felt that I wasn’t the same as I used to be. I didn’t want to be on dialysis, I didn’t want my kidneys to fail. My mother passed away from complications of kidney disease when I was 1 year old, and I have another family member who also has kidney disease, who has been on dialysis for over 15 years. So I know how kidney disease can progress.

Both my local doctor and Dr. Rolon made me feel reassured that when the time comes to possibly have a kidney transplant, they will take good care of me and help me with that process. I know they are there for me and I’m not alone. It feels good to know that they are there to help me through it when it is time for me to go through that experience.