Kristy Vos, Age 42
Propionic Acidemia
I’ve been meaning to write an update for a long time. I was actually waiting/hoping for something good to report. Alas, it is not meant to be.
I have been diagnosed with Kidney Disease. They believe it to be Polycystic Kidney Disease. I have cysts and stones inside my kidneys, my kidneys are working at 20 percent, and my creatine level has hit 4.0. I have recently stopped working and gone on disability. I am in the process of waiting for approval from state disability. I do know they have a program for when I start dialysis. I will be getting a fistule soon in preparation for dialysis. A fistula is an access vein which they will attach to a vein in my arm. This is what they use for dialysis. My husband would like to donate a kidney to me I was just informed by our insurance company that he cannot be considered until I am on a transplant list. We are on a HMO. I have been seen by a specialist at UCLA, Dr. Stephen Cederbaum, to see if any of my problems could possibly be related to my having propionic acidemia. However, it is believed by kidney disease stems from overuse of Advil. I have always been a migraine sufferer and Advil works! Beware please because it can work to mess up your kidneys later on. My doctors have switched me to Tylenol and Maxalt for the real bad migraines. I am also taking Riboflavin for my headaches and surprisingly my headaches have lessened a bit. I would be very interested in communicating with anyone else who has PA and kidney problems. I am on too many medications to list for you and have numerous problems along with the kidney disease, among them, I have low thyroid (I think, the one were you gain weight and become exhausted), high blood pressure, high potassium, and as previously mentioned, I am a headache sufferer. In good news, I am very thankful that my husband and I chose not to have children and I am very thankful and grateful to have a supporting husband who is willing to at least try to give me one of his kidneys. It will be a miracle if he is a match! My blood type is A Positive. In my free time, which I have a lot of now, I have written a children’s book which I am trying to get published. I also enjoy spending time with our 13-year old dog, Buddy, our tortoise, Zeus, and our new kitten, Firepie. I wish everyone the best of health.
Kristy Vos
6651 Kiwi Circle
Cypress, CA 90630
From the Winter 2007 OAA Newsletter
