EDUCATING AND SUPPORTING BAY AREA KIDNEY PATIENTS
In December 2005, I accidentally discovered that my blood pressure was high when I tried the drug store's blood pressure monitor. I thought it's temporary because my blood pressure usually was normal. A few months passed, my blood pressure remained high, so I decided to take the medicine prescribed by my primary care physician; the drug controlled my blood pressure well, and I went on to lead my busy life. By Fall 2015, the lab report showed that my kidney function fell below the normal range. I was told to see a nephrologist. A kidney ultrasound was performed, and the results demonstrated that both kidneys were enlarged and had numerous cysts. The diagnosis was Polycystic Kidney Disease (PKD), a hereditary disease. I probably inherited it from my mother who passed away at age of 39 when I was 11 years-old. (Thinking back, my high blood pressure was the first symptom of PKD.)
Unfortunately, there was no medicine to treat PKD at the time; all I can do was to stick to a kidney-friendly diet and a healthy lifestyle. Even so, my kidneys continued to deteriorate; the GFR had dropped from 50-60% to 30% after a year of being diagnosed. "You have a very progressive type of PKD," my doctor said, so I was referred to PKD center at UCSF, hoping to participate a clinical trial for tolvaptan - a promising medicine to slow down the cyst formation for PKD patients.
By the time I met with Dr. Park, director of PKD Center at UCSF in January 2017, she told me that there were enough volunteered patients, so they stopped recruiting. I continued to see Dr. Park, anyway. In March 2018, when I saw the lab results, my GFR decreased to only 20%. I decided to quit my beloved job as a clinical lab scientist because I needed more time to pay attention to my health and made plans for dialysis and kidney transplant. At Dr. Park's suggestion, I applied for the kidney transplant program at UCSF; after being interviewed and completing many tests, I was on the waitlist!
By November 2018, I began to feel ill. I was very anemic and tired, and nauseous from time to time. I knew it's time for dialysis. Since I wanted to go to a local dialysis center, I needed a local nephrologist to get help if something happened. Dr. George Ting at El Camino Renal Group became my nephrologist. He was very experienced, knowledgeable, and kind. He told me that I needed dialysis as soon as possible. I chose WellBound Dialysis Center in Mountain View. I decided to do peritoneal dialysis because it preserves your remaining kidney function better than hemodialysis. It is also gentler to the body. After finishing PD training, I started doing PD at home in February 2019.
I learned from BAAKP's support group that one could sign up with a second transplant center in a different OPO region. At a BAAKP sponsored education event in March 2019, I heard Dr. Huang speak about the UC Davis transplant program, and I decided to apply for that transplant program as well. Once more, I went through all the necessary interviews and tests, and eventually, my name was on that waiting list as well.
On Feb. 10, 2020, near noontime, "the call" came. Melisa at UC Davis transplant center told me there was a potential kidney offer for me, and the kidney was in Louisiana. If I accepted the offer, they would arrange to transport the kidney to UC Davis. Initially, I was a little hesitant. It would take 5-6 hours by air to deliver the kidney to UC Davis transplant center. I wondered if being on ice so long without perfusion might damage the kidney; also, the KDPI score was not as ideal as I liked it to be.
On the other hand, I realized my situation: 1) I was 66 years old and was on dialysis for a year. I should get a kidney transplant soon while I was still relatively healthy, 2) I had a high antibody level (83%), and it was hard to find a match for me. So I accepted the offer, then I called Dr. Ting and my dialysis nurse, Judy, right away. They both urged me to accept it. With their encouragement, my husband and I felt more confident and soon headed to UC Davis Medical Center.
The next morning at 3 am the transplant operation started, and it was very successful. Dr. Perez, my excellent transplant surgeon, was very pleased. I recovered well. However, after three days, my kidney function still had not improved. I was experiencing a case of DGF (delayed graft function). I became worried, although Dr. Perez assured me that it was a good kidney, and it matched well; it just needed more time to wake up, and I needed to be patient. Fortunately, a week after the kidney transplant, my creatinine value started decreasing a tiny bit. And as days passed, little by little, my creatinine level continued dropping, and finally, my GFR reached normal range. What Joy!
Life without dialysis is so wonderful. So many people helped me on my way to regain my health. I am forever grateful to my kidney donor, Dr. Perez, and the UC Davis transplant team for giving me a new kidney ( and a new life). I appreciate deeply my dear husband, who supported me through this journey to gain my health back. From the bottom of my heart, I also thank Dr. Ting, who took good care of me, prepared me well for a kidney transplant, and gave me excellent guidance.
I thank the staff at WellBound in Mountain View, especially Judy, who helped me a great deal while I was on dialysis, and my wonderful family and friends. Last but not least, BAAKP, which offers support for patients in all stages of chronic kidney disease. With its help and valuable resources, my kidney transplant journey to health was not lonely. Thank you, BAAKP!
By Pearl Su