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This
is Marcus's Story
 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.
 After several months of cyclosporine treatment, the doctors classified Marcus as having treatment resistant FSGS. They said it was now just a waiting game for Marcus’s kidneys to fail. There was nothing else they could do. We went to Mayo Clinic for a second opinion and received the same grim news. So from May through November, we were in the waiting game with weekly blood draws. In July, Marcus ballooned to 45 pounds and we ended up getting a port-a-cath put in so that we could give him albumin/lasix treatments at home. After about a week of home treatments, he was down to his dry weight of 33 pounds. Just imagine losing nearly 1/4 of your body weight in a week.
In November of 2003, almost exactly 1 year after diagnosis, Marcus had a peritoneal catheter installed into his abdomen. On December 19th, 1 year after his kidney biopsy, we started nightly peritoneal dialysis at home. Peritoneal dialysis consists of having a sugar solution placed within the abdomen, the solution draws wastes and extra fluid from the blood through the membrane lining the abdomen, and then this solution is drained off and thrown away.
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.
 Thankfully, Marcus has been able to go back on peritoneal dialysis and get back into a fairly stable state again. We know that we will have a limited amount of time that the peritoneal membrane will effectively clean Marcus’s blood. What we don’t know is how long it will last. So for now, our family goal is to keep Marcus looking and acting as “normal” as possible for as long as possible on peritoneal dialysis (PD). With the way that Marcus’s disease attacked his native kidneys, it is expected that the disease would reoccur in a transplant. The risks involved in transplantation are very high, so we have chosen to wait as long as possible before attempting a transplant. We hope to wait until technology can provide him with better odds of success. Until then, being hooked up 11 hours each night is just part of our family routine. We pray nightly for advancements in kidney research and for a cure. We pray that we can keep him healthy until then.
Marcus lives at home in Greenville with his parents, Joe and Mary Uchytil, and his siblings, Michael, Mikayla, Matthew and Maria. He loves to play video games, ride his bike, and go fishing. |
