Kathie’s Fight Like A Girl Story (Polycystic Kidney Disease)

May
13
2013
Green Ribbon LR

My name is Kathie, and I am 57 years old. I am a mother, a grandmother, a daughter, a sister, and an aunt. I am also living with an incurable disease  autosomal dominant polycystic kidney disease (ADPKD). When I was 49 I was blindsided by the diagnosis. This is what I have learned by living it. Normal kidneys are the size of a fist, mine are the size of a football. Having 2 footballs in your body where 2 fists belong means a lot of moving  around of other organs, especially the colon. Fun times there, let me tell you! Yes, I know I look pregnant, you don’t have to tell me and pain is my constant companion. I don’t want it around, but it is stubborn and will not go away. My urine can be anywhere from yellow to red and every variation in between, but I know when the urine is red it means I’m in trouble…and it hurts! I have also learned that even though I have no control over this, I do have control over my life. I can sit and worry about having to go on dialysis and … [Read more...]

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...]