Organ Transplant Stories

Judi’s Fight Like a Girl Story (Polycystic Kidney Disease aka PKD)

Dec
31
2011
Judi's Story (PKD)

In brief I was born with polycystic kidney disease and began suffering symptoms when I was in my late teens. The cysts are in my kidneys and liver which caused both organs to be enlarged. When a cyst itself enlarged and became engorged with blood or infection they became extremely painful. Eventually they would rupture and cause internal bleeding for which the only "cure" was to lie flat on my back for weeks at a time. I once figured out that if I added my "down time" all together out of 16 years in my twenties and thirties I spent an entire three of those years flat on my back in bed and/or on the sofa trying to get the bleeding to stop. It was disabling and caused me to limit and exclude many activities I wanted to do and it also meant that I couldn't wear many types of clothing that I wanted to wear because I could have nothing touch my waist – ever. It would cause the cysts to act up and bleed if I did. In spite of all of this my husband and I did adopt ( because we didn't … [Read more...]

Jessica’s Fight Like a Girl Story (Nephropathic Cystinosis, Kidney Transplant)

Jul
21
2011
Jessica's Story (Nephropathic Cystinosis, Kidney Transplant)

When I was 22 months old, my parents were in the middle of a fight to find out what was wrong with their daughter. My mom (my fight-like-a-girl role model!) visited doctor after doctor and endured multiple misdiagnosis' before finally hearing the word "cystinosis". When she and my dad looked it up (the old-fashioned way – in a medical book at the library), they found that it was an extremely rare metabolic disease that primarily affected children who died before reaching adulthood. With this prognosis in mind, my parents were very relieved when the eye doctor looked into my eyes (one of the ways of diagnosing cystinosis) and declared me free of the disease. After breathing a collective sigh of relief, my parents and doctors went back to the proverbial drawing board. My mom, though, noticed that an ocular diagnosis of cystinosis had to be done with a slit lamp, as the cystine crystals that typify the disease cannot be viewed with the naked eye. Being the fighter that she is, my … [Read more...]