Rachel S.

Adult, FSGS

It was May of 2014 when I first knew something was wrong. I was 23, and I was working as an assistant at a busy salon. I drove a really nice car, had lots of friends, and the hardest decision I ever had to make was what bar my friends and I were going to go that evening or which color to paint my nails. Life was pretty easy; in fact, I had it all planned out, the typical type of big dreams and aspirations any 23-year-old would have.

When my feet started swelling in August of 2013, I tried brushing it off, but I knew something was wrong. My primary care physician discovered protein in my urine, claimed it was a bladder infection, and put me on antibiotics. By Christmas of 2014, the edema had gotten so bad that it was in my knees and hands, and even in my face. That was the final straw. I paid a visit to the emergency room.

During my four-day stay at the hospital, I had a ton of tests done, as well as an ultrasound and kidney biopsy. I was diagnosed with Minimal Change Disease. My doctor started me on 80 mg of prednisone a day, blood pressure medication, a water pill, thyroid medication and a lot more. Though it was difficult, the plan was set and I could see the light at the end of the tunnel. My life would go back to the way it was. Unfortunately, I was wrong. After blood work and a urine analysis, we realized the numbers didn’t budge. But my doctor just wanted me to stay the course.

I got back into the swing of things at work. Physically I was feeling better, but mentally I was struggling. One day in February of 2014, I went to work and had an anxiety attack. I decided to leave early, and I never went back. From February to July of 2014, I laid on my couch, my head spinning. The steroids were making me cry all the time. I even started therapy. I couldn’t provide for myself anymore. I felt worthless. I shut out my friends and family because I didn’t want them to see me. I was sad, sick and lonely. It wasn’t until I had a full blown panic attack that sent me to the hospital that my doctor realized the severity of the situation. It was then that my doctors and I made two big decisions. One: I needed to get off steroids, and two: I needed to go to a bigger hospital that better understood my disease and offered other forms of treatment.

My mom and I decided I would see Dr. McCauley at Jefferson University next. During my first appointment, his assistant asked, “How long have you known you had FSGS?” That was when I discovered that it was not Minimal Change Disease. I had tip-lesion FSGS, and it was most likely idiopathic and resistant to steroids. I was shocked, and I felt angry because I spent so much unnecessary time suffering on prednisone. During the same appointment, we decided that I was going to taper down to a low-dose steroid and have it work in conjunction with Tacrolimus. As I tapered off steroids and began using Tacrolimus, my anxiety disappeared. I was doing more with my friends and family, and as my self-worth increased, I became less depressed. I got a part-time job at a little art studio in Doylestown, and I was even filling in at the salon that I left. I had my independence back. Things were going great.

In January of 2015, after a few shifts in medication, another trip to the hospital, and a blood transfusion due to complications with my menstrual cycle, I realized that I didn’t feel like the doctors at Jefferson had my best interests in mind. I was 24 now and I didn’t feel like a priority. I wasn’t someone in their 70s dealing with kidney failure due to old age. My kidneys were still in good shape, and I wanted someone to do a better job at preserving what I had. I decided that I was going to find another new doctor who specializes in FSGS.

I found Dr. Hogan in August of 2015. Starting at square one, we decided to go with another kidney biopsy. He also told me that being on that high of a dose of Tacrolimus can do more bad than good, so we have been weaning off of it. My biopsy revealed some good results. Sadly, I still have FSGS, but on the plus side, my kidneys only have 30% scarring compared to the 80% we expected. And that brings us to today.

Today, I am on low doses of all of my medication in a partial remission. It’s been a really long journey so far, and I know it’s only the beginning. But I feel good. And I really think Dr. Hogan is great. I feel very safe being one of his patients, and I truly trust him with my life. I might not be able to change the whole world, but maybe I could change someone’s perspective on living with a chronic illness, therefore changing their world. Almost two years ago, I was in a dark place and I made a lot of sacrifices. Now I’m happy and I have my own hair business. The way I can help people is to share my story, let people know that they aren’t alone, and let them know things get better. By doing what I love, maybe I could start a few fundraisers and do haircuts for donations.

I used to spend a lot of time trying to put my kidney disease in the back of my mind and pretend that I didn’t have it. I used to be so hard on myself and thought about how much I hated my body. But one day I decided to embrace it and love myself. I hope that I can help other people do the same.

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