OHF Stories is a new initiative from the Oxalosis & Hyperoxaluria Foundation intended to heighten awareness of our rare disease through the stories of families living with it. Our first author is Kristi Ouimet, who many of you may know, mother of two children with PH1.
We invite any family with a story to tell to contact us. The more information available to the public, the scientific community & legislators, the better chance we have for more research, more understanding and, eventually, a cure.
By Kristi Ouimet:
Living in the Bay Area, there is a different meaning to “commute hours” then other areas of the nation. We live 50 miles from UCSF and in theory, it should only take about an hour to drive to the hospital from our home. Our dialysis time was set for 9AM, but it would take us over 3 hours to get to the hospital in time due to the morning traffic. Matthew always got car sick and since I was nursing him, I had to make every trip. I was very blessed to have a wonderful and very supportive family help me out.
Because Matthew’s care was so intense, our other two children, Molly and Patrick, had to move in with my parents. It was very difficult realizing that I just couldn’t take care of them and still take care of Matthew and his new treatment schedule. My family decided I would never go to dialysis alone, someone would always drive me. Mondays and Tuesdays my father would drive with me and my mother would get my older kids off to school. Wednesdays my mother would go with me to dialysis and my father would get the kids off to school. My husband worked nights and was off work Thursdays and Fridays so he went with me those days. Everyone took turns on Saturdays.
With each trip to dialysis, we learned more about Matthew’s heath and treatment plan. We would continue daily dialysis to clean Matthew’s blood which was keeping him alive. He would continue to be monitored to make sure everything else was working properly. We knew Matthew needed a kidney transplant because the kidneys no longer worked, but that he also needed a liver transplant because that is where the problem was located, causing this disease. Matthew would be listed for a transplant when he was big enough. He was only 8 kilos at the time and needed to be 10 kilos. Our nephrology team explained that there are different approaches and philosophies on double transplants with children with Primary Hyperoxaluria. The approach the surgeons at UCSF tend to take is a double transplant from one donor at one time. Since both organs were to come from one donor, it would have to be a deceased donor. A living donor could give a portion of their liver, or a kidney, but not both. It would be too difficult for the donor to recover from that. UCSF preferred doing both organs from the same donor because the antibodies and antigens would be the same and the patient only had to (in theory) undergo one major surgery instead of two. Other hospitals prefer to do a liver transplant and then later do a kidney transplant which is also very successful. In those cases, the recipient can have living donors. There are upsides and downsides to both transplant approaches. Since UCSF has success and experience doing the double transplant at once, we agreed that is what we would do.
After a few months of our grueling schedule, we had the opportunity to move our dialysis time slot to 7AM instead of 9AM. That meant waking up sooner, but less time on the road. Our new schedule began every morning at 330AM. I would wake up and prepare the daily medicines for Matthew. I would pack the car with all of our items (iPad, books, toys, phone and charger, several changes of clothes, snacks and a boppy pillow I used all the time to support my body in the crazy positions I had to get in to be able to nurse Matthew while he was hooked up to the dialysis machine.) I would drive to my parents house and pick up whoever was coming with me and we would leave town at 5AM to start our commute. We would arrive around 630AM and get hooked up to the machine (about a 20-30 minute process) then we would have a 4 hour session on the machine. If there were no complications or issues, we would disconnect (another 20-30 minutes) and be on our way home by noon and get home by 2PM. It was just enough time to pick up my older kids from school. I would spend time with my older children while at my parents house and help with homework or have play time. By dinner I would head home and get ready to go to bed and do it all over again.