Story about Medullary Sponge Kidney .

Coping with Cacchi Ricci - Medullary Sponge Kidney Survivor

Jul 31, 2018


Shannon grew up in Dearborn Heights, a city in the Detroit metropolitan area in Michigan. She grew up in a family who actively participated in church functions such as singing in the choir, teaching Sunday school and performing in church plays. Shannon was a “busy bee” She kept her grades near perfect, maintained her first-chair clarinet concertmaster position throughout high school while being in the marching band, gymnastics, cheerleading, indoor soccer, softball, drama club and French club! Shannon had big dreams of becoming a music teacher and traveling to France.

However, after Shannon lost her father to suicide at the age of 18, her dreams seemed to fade fast. She lost the spark that once burnt strong. This spark kept her motivated and busy, which helped her to cope with the chronic pain she had been suffering with for many years. Shannon also comes from a family that has a medical background. They decided that if Shannon is “broken” there must be a medical reason of why and sought answers on how to “fix” her. She turned to her family Urologist Dr.Nutting to have him figure out why she had been passing small kidney stones for so long and to answer the question “would surgery be in her future?”

In 1997, Dr. Nutting ran many tests on Shannon. He was excited to show her the results of her first test; as it made him smile ear to ear. “Look at the beautiful bouquet of flowers you have in your kidneys! Your IVP (intravenous pyelogram) clearly demonstrates Cacchi-Ricci Disease and nephrolithiasis. You also have a Primary VUR (vesicoureteral reflux) that may be contributing to your chronic flank pain and constant infections.” He explained.

Fast forward to 2004, Shannon decided not to return to college and start a family. She married Jamie and created six beautiful babies with him. She suffered a few miscarriages. Her family and friends speculated that Shannon’s body could not handle the pregnancies. Her kidneys could not take on another pregnancy therefore her body rejected them. In 2004, during Shannon’s first pregnancy, she went into preterm labor from having pyelonephritis and hydronephrosis. Dr. Nutting had to perform a ureteroscopy basket extraction to remove the blockage and save her baby. Shannon spent many days in Antepartum with all six pregnancies due to infections, passing kidney stones and from having issues with stents. In between pregnancies, Shannon had an ESWL (Extracorporeal Shockwave Lithotripsy) performed by one of the other urologists in the same group as her family urologist. This was a disaster and almost killed Shannon. Not only did this urologist make incorrect medical comments to her about her condition but he also caused a renal thrombosis and sent her into urosepsis. This was the beginning of Shannon suffering PTSD from how the other urologists in the group treated her. Shannon started seeing a psychiatrist and therapist to help her cope with all the stress and anxiety. She also started seeing a physical medicine and rehabilitation physician Dr. Bandemer through Beaumont. He is one of the many doctors who have been able to return Shannon towards a better quality of life and help her gain streangth to be able to tend to her 6 children! Shannon also participates in physical therapy for SI joint dysfunction and back issues from years of gymnastics and the impact from a bad fall during her last pregnancy. One goal Shannon aimed for was to prove to every doctor that the hematuria and chronic renal colic was indeed from having Medullary Sponge Kidneys. She started collecting all her stones she would pass weekly as evidence of what she endures.

Eventually, Shannon found a place that understood Medullary Sponge Kidney Disease and wanted to help her get better! That place is the University of Michigan where Dr. J. Stuart Wolf performed ureteroscopic laser papillotomy on Shannon a few times. She has participated in the Stone Clinic at Michigan Medicine under the direction of Nephrologist Dr. Patel. There she is treated by the Stone Clinic’s urologist, nephrologist and nutritionist. When Dr. Wolf left for Texas in 2016 he referred Shannon to Dr. Ambani who has now performed three surgeries on her with great success!

Shannon is Administrator of http://www.facebook.com/copingwithcacchiricciofficial

http://www.facebook.com/kidneystonehalloffame

Moderator Cacchi Ricci France for Eric Andre https://m.facebook.com/groups/1379141182319029

Instagram https://instagram.com/copingwithcacchiricci

Twitter @copingwithCR

WordPress CopingWithCacchiRicci.Wordpress.com
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