Penny Kubik

I started having trouble with swelling in my legs in May of 2003. I went to a clinic and a urine test indicated a large amount of protein in my urine. I was referred to a Nephrologist who rapidly completed a biopsy and thank God, asked for the appropriate lab tests and I was diagnosed with Primary Amyloidosis with Nephrotic Syndrome. My Nephrologist referred me to a Oncologist and from there I was treated with Chemo. in hopes of decreasing the protein loss and minimize damage ultimately awaiting my kidneys. Various medications were tried with no good effect. My protein levels in my urine became dangeroulsy high with my Nephrologist awestruck. He had never encountered such a high protein in the urine. My Nephrologist and Oncologist were both familiar with Amyloidosis. I am very lucky. I was referred for a Stem Cell transplant evaluation at Strong Memorial Hospital in Rochester, N.Y..

I did receive a Stem Cell Transplant in Jan. of 2004. Since that time my urine protein continues to decrease. I didn't respond as well, as quickly as the doctors in Rochester would have liked, but to me, I am doing well. I returned to work 6 weeks after my transplant and continue to work full-time to date. I am the mother of 3 with my youngest being 5 years old. I continue to experience fatigue and sometimes lack motivation. I do suffer from memory problems, more so with names and word finding, but not to the point that this is dangerous, just annoying since I work with people.

I believe I am truly blessed by having a Nephrologist who acted so quickly and is aware of Amyloidosis. At this time I do not exhibit any involvement in any other organs. I live every day to the fullest and thank God every night for the day I have been given