My daughter Kathleen 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 two 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 steroids 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 Nephrotic 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 dieresis and a lower protein loss.  Five weeks after Kathleen’s transplant, her urine protein was 1+ and her albumin level was 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.

Kathleen is now doing extremely well.  I believe she is in the best health of her life.  She is 3 years post transplant.  She is healthy, active and becoming a teenager.  She will be 13 in September and will be entering the 8th grade.  She enjoys dance class at school, swimming and hanging out with her friends.  She was on growth hormone for a year and grew 6 inches.  Due to the rapid growth, her legs grew uneven (one longer than the other) and she had to have eight plates put into the growth plate to straighten her legs.  This has also worked well and her legs are perfectly straight and even now.  She has been through a lot but has been come through her experience with flying colors.  Even though we know that things could always change, we are very grateful to the donor family for the gift of life and what it has meant to our family.  Kathleen has never had a rejection and is very responsible taking her medications daily.  Together with a healthy kidney (thanks to her donor) and being responsible she is leading a happy and healthy life.

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 — and to the great team of transplant surgeons who work so hard to help our children live better and longer lives.

Frances Plott
Mother of Kathleen