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Kevin Flesch - Journey with FSGS

Real World Evidence
11/07/2022

When I was nine years old, I woke up one day with heavy swelling in my face. At first it was sporadic, but when fourth grade began, the swelling happened more frequently. Teachers thought I was just tired: “You need to go to sleep at a decent hour—8:00pm, right after MacGyver.” My mother took me to our pediatrician. He took a urine sample and found that I was spilling large amounts of protein. We were referred to a nephrologist at the Children's Hospital in Chicago.

The nephrologist performed a biopsy, and the result revealed my diagnosis: FSGS. FSGS stands for focal segmental glomerulosclerosis. Focal segmental glomerulosclerosis is a rare disease that is named because of the appearance of affected kidney tissue under a microscope. Each kidney contains about 1 million small filters. These filters are made of a tuft of small blood vessels called a glomerulus. Some, but not all, of the glomeruli (focal) are affected in one part of the glomerulus with the formation of a scar. After the scarring occurs, the filters do not work properly. Proteins are lost in the urine, and excess fluid may be retained and lead to swelling, which can cause symptoms of kidney failure.

After the diagnosis, my physician quickly put me on a high dose of prednisone. Only 20% of patients respond to steroid treatment, and a large portion of steroid-resistant patients eventually require dialysis and a kidney transplant. Unfortunately, I was one of the 80%, so when I was 15, I received a kidney transplant after only being on dialysis for three months. My older brother, only 19 at the time, made a great sacrifice by donating his kidney to me.

After about 10 months of leading a normal life thanks to my brother’s sacrifice, the FSGS returned. Depending on which studies are referenced, recurrence happens anywhere from 30% to 50% of the time. I was quickly put on an aggressive treatment called plasmapheresis. Plasmapheresis is similar to dialysis in that it removes your blood via a needle or catheter and separates and discards the plasma, which is replaced by an albumin solution. I did this three times a week for two weeks with great success; unfortunately, the protein returned within a few weeks, so we repeated the same treatment regimen. Once again, the protein in my urine returned shortly after. We tried this regimen another couple of times until we decided to do two plasmapheresis treatments per week indefinitely. This was extremely difficult for me because I had to take off school to receive the treatments and I got various infections that took me out of school for a couple of weeks. In the middle of my senior year, for some unknown reason, my hemoglobin levels dropped considerably to the point where I had to take a break walking from class to class in the hallway. We eventually stopped the plasmapheresis and my hemoglobin levels returned to normal, but my kidney function began to deteriorate more rapidly.

When I was 19 years old, I was put back on dialysis. My doctor and I thought it would be worth it to try for another kidney transplant. I received the new kidney when I was 20 years old, but the FSGS came back more quickly and aggressively than with my first kidney transplant. It only lasted a year and a half.

When I went on dialysis for the third time, I oddly was relieved because I had felt sick for so long. As the kidney deteriorated, I had constant stomach problems and had to sleep with my head propped up using pillows so my face wouldn’t get so swollen before going to work. Also, I accepted my situation and tried to carry on with my life as a normal 21-year-old. I went to school and had a job.

When I was 25, I developed a dangerous illness called sclerosing peritonitis, which is often fatal. This disease happens for a small majority of people on peritoneal dialysis, which is the form of dialysis I was on.  I received the diagnosis in my physician's office and was told I would have to go on prednisone and cyclosporine—two posttransplant drugs with significant side effects. As fate would have it, as my doctor was explaining the treatment plan, I received a phone call from the same hospital I was sitting in, and they told me they had a kidney for me—a perfect match.

The decision to undergo another transplant was the most difficult decision of my life. Should I get another kidney and risk losing it again to FSGS when that seemed like the probable outcome? Although I had received plasmapheresis with my other transplants, I had never gotten the treatment before the transplant or directly after. We had been in contact with the leading researcher of FSGS in the U.S., Dr. Virginia Savin. She was a strong advocate for getting at least one plasmapheresis treatment before a transplant and nine treatments after. She had a study to back up this recommendation, and I showed this to my doctors. There was a lot of pushback when I said I wanted a treatment beforehand, but I remember my brother quoting Einstein: “Insanity is doing the same thing over and over and expecting different results.” That was exactly right. I told the doctors I was not going to do the transplant unless I had one plasmapheresis treatment beforehand. Thankfully, they agreed. I did one plasmapheresis treatment before the transplant and nine treatments after.

I went through with the transplant. That was in October 2006. As I write this in October 2022, I have the same kidney and normal creatinine levels. I strongly believe that I have a working kidney only because I advocated for myself. I looked at how plasmapheresis had success and made sure it was administered in a timely manner. Learning to advocate for myself helped save my life and definitely improved my quality of life. It is my hope that my story empowers you to advocate for yourself.

  • Blog written by Kevin Flesch
Matthew Horsnell
Matthew HorsnellTREND Community Director
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