My Journey
In 2017, I was diagnosed with a fairly common, non-life threatening condition called Minimal Change Disease (MCD). MCD is usually managed successfully with high-dose steroids. Unfortunately, I was unresponsive to treatment and the disease rapidly progressed into a rare autoimmune kidney disease with no known cure called Focal Segmental Glomerular Sclerosis (FSGS),
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By 2020, I began dialysis after my kidneys finally lost their ability to clean my blood. There are two kinds of dialysis - peritoneal dialysis (PD) and hemodialysis (HD). I began with PD, a treatment for kidney failure that uses the lining of your abdomen, or belly, to filter your blood inside your body.
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Unfortunately, I soon found out PD was not going to work because fluid was migrating to my lungs. Thoracentesis removed almost 1.5 liters of fluid from my right lung and later nearly 1 liter from my left. ​I then switched to hemodialysis, a process by which a machine pumps the blood out of your body from a fistula or chest catheter, cleans it, and then pumps it back in. Unlike PD which is performed at night while you are sleeping, HD requires three treatments per week at a dialysis center lasting four hours each, not including my two hour round trip commute to the clinic.
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Because of the sudden need to switch from dialysis methods, I received a chest catheter or central line that entered my right upper chest and went directly into my heart via the superior vena cava. It was only after 5 months that my chest catheter was replaced by a 6” artificial “fistula”, placed under the skin of my left upper arm to reduce infection risk.