On June 15, 2017 I received a liver and kidney transplant at UCLA due to Polycystic Kidney and Polycystic Liver Disease. I knew for many years that as the disease progressed, it would result in kidney dialysis and eventually a kidney transplant. There is no treatment for the disease so it is a waiting game. I would constantly search the internet for any information I could find on PKD and PLD. In the summer of 2013, I noticed that UCLA had started a study on the disease. I e-mailed Dr. Anjay Rastogi the same day. The next morning he responded!! My husband and I met with Dr. Rastogi within a month. He is an expert in this field and had so much information to share about the disease. Our family attended many different discussions that Dr. Rastogi held in regard to kidney disease, specifically to PKD. We attended kidney fairs and PKD walks. He was at every event, surrounded by his patients and their families. The care and compassion that he has for his patients and their families is amazing. While my condition was advanced and I was not eligible for the clinical trials, I did learn that there were studies that my son could join. He met with Dr. Rastogi and was started on a study medication to slow the growth of the cysts. In November of 2013 I had to start kidney dialysis. My sister offered me the gift of one of her kidneys and I was overwhelmed and excited by her offer. To know that she was willing to undergo a surgery, and the risks involved, so that I would have a healthier, improved life was humbling. In May 2014, we contacted Dr. Rastogi and he guided us on the journey to eventual kidney transplant. My sister sent her letter requesting evaluation to be a live kidney donor and I set up my appointment for kidney transplant evaluation. During my examination by the kidney transplant team, the size of my liver became a concern. Some of doctors felt that there may not be enough room for the new kidney. About 6 months later I received a letter that I was not a candidate for kidney transplant and was being referred to the liver transplant team. The liver was now the priority. In the meantime, we again contacted Dr. Rastogi. Following his advice, we made an appointment with Dr. Sammie Saab for evaluation of the liver. It was Dr. Saab’s opinion that I should have a liver transplant in addition to the kidney transplant. I was devastated and very scared! I was looking forward to being free from dialysis and now I am faced with the real possibility of a double transplant. Emotionally, it was a roller coaster. It was difficult to deal with the fact that I was now going to need a cadaver liver and kidney. One year after staring my transplant evaluation, I was accepted for liver and kidney transplant. However, due to a high MELD score it would take about 6 years for me to be eligible for a liver. Dr. Saab strongly believed that I would qualify for a MELD exception due to the size of the liver, but the liver coordinator disagreed. Again we reached out to Dr. Rastogi and I began sending e-mails to Dr. Gritsch, Dr. Danovitch and Dr. Busuttil to see if perhaps there were other options.
I had consultations with all 3 of these gifted and amazing doctors and they all agreed that a liver and kidney transplant would provide the best and safest outcome for me. They also agreed with Dr. Saab that I would qualify for the MELD exception. We returned to Dr. Saab and he submitted the necessary paper work to UNOS. He was right and in February 2016 I did receive a MELD exception for Polycystic Liver Disease. This meant UNOS would review my case every 3 months and points would be added to my MELD score helping to get a score that would allow for the liver transplant to happen much sooner. At every visit Dr. Saab was so positive and encouraging telling me that I was going to feel so much better. Thank you, Dr. Saab! One year later I received my transplant. We were so excited and anxious when the call came. I was not afraid though. I felt very confident that I was in the best hands considering all the time these doctors spent in making their decision. I know that not everyone who needs a transplant gets a transplant and I am blessed and humbled by this. Dr. Rastogi, every day I think about and am thankful for you, my amazing husband and children, my organ donor, the family of my organ donor and the doctors and nurses on the 8th floor who cared for me at UCLA. Special thanks to my liver transplant surgeon, Dr. Farmer and kidney transplant surgeon, Dr. Gritsch. While I had met Dr. Gritsch prior to the transplant, I had not met Dr. Farmer. I met Dr. Farmer for the first time in the hallway on my way to surgery. He spent some time with me and my family and helped to ease a little of our anxiety with humor, confidence and compassion. Dr. Farmer, my son and I looked forward to your visits so early each morning while I was recovering in ICU. I want you to know that I am following your advice and making it my job to stay healthy. Dr. Danovitch, who is in charge of the kidney transplant department, and Dr. Busuttil who is in charge of the liver transplant department, are highly skilled and compassionate doctors who have shared their gifts and knowledge with other doctors around the world. I am so thankful to have benefited from their advice and expertise. Surgery is an emotional and anxious time and from the moment we arrived at UCLA Emergency Room to check in for transplant surgery, my family and I were treated with care and compassion by the employees, nurses and doctors. I continue to meet amazing, compassionate doctors and nurses at the Connie Frank Kidney Transplant Center and Pfleger Liver Clinic during my post-transplant care. It is also important for me to thank the people who choose to be organ donors and those who have made the decision on behalf of their loved ones. It is the ultimate gift. Dr. Rastogi, I don’t think we could have made this journey that included so many twists and turns without your guidance, compassion and care. I believe my prayers were answered the day I came across your name while looking for information on PKD. I know how busy you are, but there was never a time when we asked for your help that you weren’t there for us. I also know that we are not the only ones who feel this way about you. I honestly don’t know when you sleep! I am forever grateful to you and am so pleased that my son is now under your care. I am confident that he will have options that were not available to me. I pray that with your help there will be an end to dialysis and transplants due to PKD. With love and gratitude, Deborah
