Michelle's Story


    In early November 2010, Michelle went to see an endocrinologist for a possible growth imbalance.  Michelle was hoping she would be a candidate for growth hormones because, at the time, she was 4’7″, 80 pounds and had a kid shoe size 2 at age 14. After plotting out her parents and brother’s present sizes, her physician felt there was a concern; although, she never thought or indicated that it could be a kidney disease. Three weeks later, the endocrinologist called to say that Michelle’s serum creatinine level was three times the normal limit at 2.9.  She was immediately sent to Children’s Hospital of Philadelphia, and with further testing, Michelle was shockingly diagnosed the next day (Thanksgiving) with having a very rare, genetic form of Chronic Kidney Disease called Nephronophthisis (NPHP).   

    Looking back at that time, the only subtle signs of Michelle’s disease, looking back at that time, were fatigue, polydipsia (extreme thirst), polyuria (excessive urination) and anemia. There were no overt signs that had indicated she was suffering silently with this chronic illness.  Her nephrologist said that many people with this disease would have a routine lab draw, like Michelle, showing an elevated creatinine levels.  Without obtaining this basic lab draw, she could have gone into complete renal failure!

     Michelle was then followed as an outpatient every eight weeks in 2010.  She was treated with multiple meds to counteract the negative effects that is associated with kidney disease; including meds to treat her anemia, bone disease and altered metabolic state.  She also had lab work taken at each hospital visit in order to monitor her worsening kidney function.  At the time of transplantation, Michelle’s creatinine level climbed up to 4.8 with only 10% function.  Once her father was cleared as her donor in January 2012, her nephrologists felt it was time to schedule her surgery.  Michelle had her very successful kidney transplant on May 23rd, 2012 and was given a second chance at life without the need for dialysis.

          Michelle has had an amazing post-operative recovery following her successful transplantation.  She was able to recover most of the summer after missing a few weeks of school and learned all her new medications to prevent rejection of her donated kidney.  She was able to start cheering for her varsity squad in mid August with minimal restrictions at first.  As her recovery continued, she resumed all her physical activities such as cheering and playing indoor winter lacrosse.  She is now gearing up for her high school lacrosse spring season and is expected to go into this year with a higher energy level now that she is playing without chronic kidney disease!  She was even able to ski for the first time since surgery, using her protective kidney shield, just a few short weeks ago. She is looking forward to driving with her learners permit very soon. 

    image003 What is amazing about Michelle is that despite the last few years of failing health, she was able to maintain good grades and kept a very active social life despite her chronic fatigue and frequent headaches.  She has amazed even her doctors because of her very active and physical lifestyle despite having NPHP and end stage kidney disease.  Michelle also grew two inches on her own and added ten pounds to her petite frame. By looking at her, one would never know that she has been through all that she has.  Things are only looking up for Michelle as she enters into the next chapter of her life with a very positive mindset!