Hi there! Thanks for taking the time to look at the page I've created for my cousin Marla Jacobson- here is her background story:



In 1996, after my youngest daughter was born, I felt a lump to the left of my belly button. It was tender, but not painful. When I went to my ob-gyn for my checkup, she said it was probably "stool" and not to worry about it. Fast-forward two years later: I made an appointment with a surgeon, who determined that it wasn't stool, and ordered an abdominal ultrasound. The results: Autosomal Dominant Polycystic Kidney Disease. The doctors said it was genetic and one of my parents must have it. They were tested (as was my sister) and no one had it, so I was told I had a gene mutation. The prognosis was scary, as 50% of ADPKD patients have renal failure. I found a wonderful nephrologist at Evanston hospital, and for many years he has been treating my high blood pressure, chronic flank and back pain. In 2005, he predicted that in ten years, I would be facing dialysis and/or a kidney transplant, and he has been pretty spot-on with predicting lab results, and the progression of the disease. Dialysis/transplantation is generally required at a GFR (glomular filtration rate) of 10-15. I'm at 19 currently; down from 24 one year ago. My doctor wants me to prepare for dialysis, but I will do everything in my power to avoid that, so my primary goal is a preemptive kidney transplant with a living donor, so I can live a long life and annoy my children and grandchildren for many years! I currently take several pills to manage the disease, and a new drug has been added to lower my phosphorous levels, and this regimen may "buy" me a year before my kidney function decreases. My immediate goals are to eat healthy , exercise when I feel up to it, and find a suitable kidney donor. I'm being evaluated for transplant and having prospective donors tested. My blood type is A, so a donor must be A or O to be a potential match.

My new normal: Chronic pain, fatigue and nausea - filing for social security disability, due to my inability to work more than 10 hours/week, and spending most of my time in bed with my heating pad.

My long-term goal is to increase awareness of PKD, and raise funds for a cure, because my daughters each have a 50% chance of having this insidious disease.


New York Times- "Great American Kidney Swap"