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My story begins on March 13, 1998, when I went in for a pelvic ultrasound at Castle View Hospital, in Price, Utah, for lower quadrant pain thought to be a hernia. While the pain turned out to be something else, the technician caught the edge of my kidney in the scan, and saw the cysts. She quickly left the room to talk to the radiologist, then returned to scan the kidneys, telling me the Doctor would be in touch with me. Thus it was found very early during the course of the disease.
No one in my family has Polycystic Kidney Disease. None of my biological siblings or parents has PKD. This is called De Novo, which means I am a new or first mutation of the disease. It was a complete surprise. In the years since, there has be a slow progression to End Stage Kidney Failure which have included bleeding blood for eight days and Angina from a hardening heart muscle caused by 20 years of hypertension.
I am now dealing with Vitamin D deficiently or the adult form of rickets, because I can’t convert vitamin D into its active form. Muscle cramps, toe neuropathy, nausea, fatigue, constant back & flank pain, a bulging abdomen, transient headaches, migraines, chronic urinary tract infections, and hemoglobin in the urine are other symptoms of my 18% kidney function and football sized kidneys. I deal with most of these symptoms every day
I hope that after my Kidney transplant I can return to the things I love to do with more energy and a longer life. I have missed hiking and Geocaching, Dutch oven cooking, traveling and touring, and working with the youth in YWMIA Girls Camp, the Pokémon League, and Scouting.
I have always admired the Boy Scouts for its citizenship training and program. And have enjoyed the volunteer experience long before my sons became Eagle Scouts, back before the uniforms changed from green to khaki. During my 34 years of service I achieved 23 awards but I am most proud of my Silver Beaver, District Award of Merit in Carbon District, and my Scoutmaster’s Award of Merit for my 5 years as a female Scoutmaster.