Vanessa-Adult Living with ARPKD/CHF
 

Hi everyone! My name is Vanessa Runner, I have ARPKD, and I am a kidney transplant recipient. I was diagnosed with ARPKD, an enlarged spleen, and associated liver involvement as an infant. I am now a healthy, happy, 22 year old independent female with a college degree and a steady full time job, my own apartment, and a bright future.

In November 1999, (age 15) my creatinine levels reached 5.0, and our family knew that a kidney transplant was on the horizon. All of our family went through the testing procedures, and it was determined that my oldest sister Suzanne (age19) was the best match and she volunteered to donate one of her kidneys to me.

(During this same testing procedure, my other older sister Jennifer - age 18 - was matched to my younger sister Rebekah who also has ARPKD.)

Although I wanted the transplant to happen, I was also frightened of the unknown. I was so tired of being tired, and wanted to be healthy and be able to do the things I saw other kids doing.

My transplant took place on January 27, 2000 at UCLA Medical Center in Southern California. My doctors were great! The hardest part of my recovery was the strict no-sodium diet that I was put on for about three months following my surgery. In fact, that’s the only thing I remember being difficult. I had many clinic visits and medication adjustments, but before I knew it, I was feeling so much better than I ever had previously, and I was not tired all of the time. I still take daily medications, but fewer now than before, and it is such a small price to pay for a normal lifestyle.

About a year ago, we became aware that I should have been having yearly ultrasounds for my congenital hepatic fibrosis (CHF). Somehow all of our attentions were focused on the kidneys, and none of the doctors were focused on my liver. After we received the results of my ultrasound, we were all shocked. Three tumors were found on my liver. At the time, I was graduating from college, moving into my apartment, and starting a new job. What should have been one of the happiest times of my life turned into a lot of worry and anxiety. Because of my low platelets, I had been taking a medication, which, we later found, caused the tumors. I now am taking a different medication, and my doctors are hopeful that the tumors will shrink over time. My latest MRI seems to prove this is happening. I cannot stress enough how important it is to have ultrasounds periodically.   If we had given equal attention to my liver, and not just my kidneys, it would have saved us all a lot of stress.

The main thing to remember through all of it, whether you are the patient, or the parent, is that this process, the kidney transplant process, is just a small part of your life. The testing will fade away into your memory after awhile. The pre-transplant fears will be forgotten. I wish I could meet with every single person with transplant concerns, and tell them that; 1. The transplant itself is not hard. 2. The waiting is the hard part. and 3. Life after transplant is exhilarating!

It has now been seven years since my transplant and it is no longer the focus of my life. I graduated from California Baptist University last year, and now work full time as a Sheriff’s Service Officer for the Riverside County Sheriff’s Department. I have a very full, active life, and am currently taking additional classes to become a Criminal Analyst. I love my work, going out with my friends, and doing all of the things a normal 22 year old would do!