Kevin Flesch - Journey with FSGS Relapse
“You might have to go on dialysis again—I don’t want to sugarcoat it for you,” my doctor said to me as we spoke in the inpatient nephrology wing of the hospital. Weeks earlier, I had started spilling massive amounts of protein in my urine, and my creatinine level skyrocketed. I was inpatient because I was getting a drug called Rituxan. Rituxan is a drug normally used for non-Hodgkin lymphoma. Out of desperation, my doctor and I decided to try a round of Rituxan because it was discovered that treating cancer with Rituxan improved the focal segmental glomerulosclerosis (FSGS) in patients who had both diseases. I have found that discovering new treatments in this manner is the rule, not the exception, when it comes to chronic illness.
I was just under 2 years post-transplant. I thought to myself, ‘this was probably my last shot at a kidney,’ as I had lost the 2 before from [FSGS] recurrence. I had been admitted a lot over the past year. Just to give you a sense of how much, If I didn’t get a room with a view of 294 going downtown, I was devastated. The other view was of a courtyard. I remember looking out the window that night and seeing the dialysis clinic I received treatment at before my last transplant. I had the 5:00am shift. I couldn’t imagine going back there, but I knew it was the likely outcome. I tried to make the best of what I thought my fate was: going back on dialysis. I felt worse for my wife of less than a year than I did for myself, honestly.
My proteinuria was under control before this current bout of aggressive recurrence. I had some spillage after my transplant but not enough to affect anything. It began with an internal infection. The infection seemed to bring the FSGS out from under the surface. Could it be that if you have controlled FSGS and you contract something unrelated, such as an infection, it activates severe recurrence? It certainly seems so.
Unfortunately, the Rituxan didn’t work. Based on my 2 previous failed transplants, I knew that time was short. Once FSGS takes hold, the kidney scars fast. I remember with my first failed transplant, I said to my doctor, “but my native kidneys took years to fail,” and he said, “but Kevin, you only have 1 now.” I had just finished a 2-week, 6-treatment plasmapheresis regimen. My doctor called me after it was complete with my lab [results]. He said my creatinine wasn’t much worse, but I was still spilling a ton of protein. He said the plasmapheresis wasn’t helping and I should discontinue it.
Seemingly out of options, I was pretty hopeless and resigned to the fact that I would be losing my third kidney. Ugh! I was seeing my doctor the next day. I decided to take another look at my labs. I noticed that I was spilling massive amounts of protein consistently during this bout of recurrence, but during the weeks that I was receiving plasmapheresis, my creatinine level stabilized. Desperate for anything that might save my kidney, I presented this information to my doctor.
“I don’t want to prescribe a treatment if it’s pointless,” my doctor said the next day. I made my case. I said, “but the creatinine level seems to stabilize when I’m getting the plasmapheresis. Can we just try it for a few weeks and see? I’m desperate!” He agreed to let me continue with the plasmapheresis treatments. I started doing it 3 times a week indefinitely. It was a grind doing those treatments—3 times a week in the morning—but it was better than dialysis, and it turned out, by the grace of God, to be the right call. Slowly, my creatinine level came down and then the protein in my urine started to come down. We weaned off the plasmapheresis. We started with 3 times per week, then 2, then 1, then once every 2 weeks, then once every month. Today, I am not getting any more treatments and haven’t for some time.
I wondered why my controlled chronic illness appeared with such ferocity after an infection. Also I wondered if plasmapheresis could work as a stabilizing treatment for a primary illness while the secondary illness works itself out (in my case, FSGS and an infection).
If I had not convinced my doctor to continue getting plasmapheresis, today I would probably be on dialysis or maybe even worse. Instead, I am healthy, with a wife and 3 children. Sometimes you have to be your own champion. Although patients don’t have the education, we are intimately familiar with our own stories and better at getting the word out to other patients, doctors, and professionals within the field. Also, statistics are more widely available now than at any other time in history. What I love about the TREND Community is our mission in tying it all together with real-world data that can help create new therapies and treatment options.
- Written by Kevin Flesch.