In September of 2002, Marcus, at the age of 3, started waking up with puffy eyelids. It was first thought to be a sinus infection and treated with antibiotics. Then it was diagnosed as allergies to mold. Finally on November 18, 2002, Marcus was diagnosed with Nephrotic Syndrome and placed on steroids. After several weeks with no response, Marcus had a kidney biopsy. At the end of December, it was confirmed that he had Focal Segmental Glomerulosclerosis (FSGS) and was started on Cyclosporine, a commonly used anti-rejection drug.

In the meantime, Marcus was in and out of the hospital from November through the beginning of February. He would spend four days in the hospital receiving IV treatments of albumin/lasix and urinate about ten pounds of water weight before going home for ten days and then back in the hospital again. Ten pounds doesn’t sound like much until you consider it was 1/4 of his body weight. After our hospital stay at the beginning of February, we seemed to have the right combination of about ten medications that kept Marcus “stable”, but he still was urinating extremely high doses of albumin. Albumin is the protein in the blood that keeps fluids within the blood vessels. Without albumin in the blood, the fluid or water leaks into other body tissues like the eyelids and abdomen making them puffy and susceptible to infection.

While we were learning to deal with peritoneal dialysis, we were also continuing the albumin/lasix treatments through his port-a-cath until January when he got an infection in it. We treated the infection with Vancomycin, a very strong antibiotic, but the infection became imbedded in the plastic of the port. This forced us to make the decision to give him a medication that would actually shut his kidneys down. It was better to have no kidney function than to urinate out so much protein. After several reoccurrences of the port infection, we had the port taken out in April 2004.

From April 2004 to December 2007, Marcus remained fairly stable. We had a few ups and downs, including a couple of hernia surgeries, but overall he remained stable and out of the hospital. Then on December 3, 2007, our worst nightmare came true. Marcus developed peritonitis, an infection in the peritoneal membrane that is used in his dialysis. Even with heavy doses of antibiotics, the infection would not clear and we were forced to remove his peritoneal dialysis catheter. This meant that Marcus had to be put on hemo-dialysis where his blood would be drawn through a machine to be cleaned. This involved driving to Madison, a 2 ½ hour drive, sitting through 4 hours of treatment, driving 2 ½ hours back home and then doing it all over again three times per week. We did this for six weeks while we treated the infection, had a new peritoneal catheter placed, and gave it time to heal. The peritonitis and the hemo-dialysis were very difficult on Marcus, especially since his fluid and diet were very restricted.