Laura is a wonderful wife and mother of four boys. She gave birth to our fourth son on November 27, 2012. Laura was perfectly healthy but in February 2013, three months after giving birth, she started feeling sick.
Laura had severe joint pain and swelling. Doctors couldn’t figure out what was causing it and she was misdiagnosed a few times. It wasn’t until they found that she had 28,000 miligrams (28 grams) of proteinurea that she was sent for a kidney biopsy. 0-80milligrams is considered normal proteinurea.
In July 2013, she had a biopsy which showed mild collapsing FSGS. She has tested positive for Parvovirus B19 and it is suspected of causing the FSGS. This is actually a very common virus that mainly affects children. It is also known as fifth disease and “slap cheek” disease. The most common symptoms are fever and rosey red cheeks and after a few days, the body will get rid of the virus. In Laura’s case, it is believed that her body was unable to produce the correct anti-bodies to fight off the virus. This normally only happens in people who have compromised immune systems so she was tested and retested for HIV, lupus, and other various immune disorders and all came back negative.
She was started on a 80mg daily of prednisone. It didn’t seem to help and the high dose caused pancreatitis. They lowered the dose to 60mg and decided to try IVIG on her. The first treatment was five days at 20mg and a couple of months later was given 60mg for two days.
In September 2013, a second biopsy showed collapsing FSGS as well severe tubular damage. Our nephrologist referred us to a doctor at the Mayo clinic so we spent Thanksgiving week in Rochester, MN. There was no change in proteinurea so the Mayo Clinic suggested 14 consecutive sessions of plamapheresis. This brought her proteinurea down to 10 grams but it slowly started to go back up. At this point, she was prescribed tacrolimus. Unfortunately, she seemed to have an allergic reaction to it and it caused Reversible cerebral vasoconstriction syndrome (RCVS). This put her in the hospital for 20 days (6 of which were spent in the ICU).
She was taken off the tacrolimus and put on 720mg Myfortic daily. We went back to the Mayo Clinic in January of this year, but her kidney function continued to decline and as a last resort, the Mayo Clinic suggested Acthar gel injections twice a week for six months. She started the Acthar gel injections in March 2014 and three months later her proteinurea came down to 6 grams. However, even though her proteinurea had improved, her GFR continued to declined and is at 13. This is considered stage 5 renal failure (complete kidney failure).
Our nephrologist has now referred us to the transplant hospital.