My daughter Kathleen is nine years old.  She has suffered from MCNS since age two.  She started out steroid dependent and became steroid resistant after six years.

When oral steroids stopped working, Kathleen was put on high-dose IV solumedrol (Tune-Mendoza Protocol) with no results.  Then she was given Cytoxan IV but after 2 months she became very ill with vomiting, diarrhea, anemia and hair loss.  It was discovered after several months that she had adrenal insufficiency due to the large doses of sterords and required treatment for that condition. Her kidney biopsy at that time stilled showed MCNS.

However, in March 2004, Kathleen’s kidney function started to slowly deteriorate. Her diagnosis was changed to FSGS, but not confirmed by biopsy. She was put on the transplant list in November and in January 2005 she went into total renal failure. She was given hemodialysis for two weeks while her peritoneal dialysis catheter site healed and was on peritoneal dialysis until April 20, when she received a kidney from a deceased donor.

After Kathleen’s transplant, her nephrosis came back with a vengeance and in one week she gained 20 pounds. Ten days after her transplant, with the use of antirejection drugs and plasmapheresis, she exhibited diuresis and and a lower protein loss.  Five weeks after Kathleen’s transplant, her urine protein is 1+ and her albumin level is at 4.8 (the first time in more than two years!).

Kathleen’s incisions have healed well, she has had no signs of rejection, her appetite has improved, she is gaining weight, her anemia is improving and she is feeling very good.  Unable to spend time outside with other people as a result of her immunosuppression, Kathleen complains of being bored. Other than that, we couldn’t ask for a better outcome at this time. Our plan is to continue plasmapheresis indefinitely.  We hope to drop from three days a week to two days a week soon and eventually to one day a week.

We are grateful to Dr. Cutler and Dr. Sahney, the nephrologists at Loma Linda Medical Center, for the wonderful care they have provided to Kathleen over the past eight years — and to the great team of transplant surgeons who work so hard to help our children live better and longer lives. We understand that Dr. Yorgin from Stanford, who has done extensive work with FSGS, has joined the nephrology department at Loma Linda. We look forward to meeting him and welcome his expertise in treating and working for a cure for this disease.

Love, MOM
xxx 000 

Frances Plott
Mother of Kathleen