Logan has a new website: http://bumpykidneys.blogspot.com
The National PKD Convention was amazing. They had a dedicated track just for parents with children with PKD. It was great/sad to meet other families who are struggling with this disease in their little ones. Dave and I walked away with a new understanding of what questions we need to ask our nephrologist for treatment processes/policies. This means we need to do a better job understanding how frequently do we look for abnormalities in his liver, his esophagus, his blood pressure, his urine tests, his blood tests, and, of course, his kidneys.
We walked away with a new found understanding of Congential Hepatic Fibrosis (CHF). This has been "explained" to us multiple times but Dr. Ryan Fischer really taught us the differences between, Caroli disease, Caroli Syndrome, CHF, and fibrocystic liver disease. These are all associated with PKD. Liver transplants are also common in PKD patients. We also learned from the other parents that height concerns are common in ARPKD kids. Dave and I have realized that Logan hasn't grown in four months. Our nephrologist responded to us while he was on vacation (I love our doctor) to setup an appt to get him tested. Dr. D would refer us to an endocrinologist to discuss options if they see he has plateaued. If Logan doesn't continue to grow while his kidneys are still growing it can cause pain in his back again due to a lack of room.
We learned a ton of miscellaneous information as well. We also talked to COTA (Childrens Organ Transplantation Association) on starting a savings account for Logan's hospitalization. It was explained to us that this can be used throughout his lifetime and we can use it as a mechanism to fundraise without getting taxed on it. :) Dave and I are still trying to determine the best use for this fund. We were shown how dialysis works for both peritoneal and hemo dialysis. We talked through if dialysis was needed we would go the peritoneal at-home route. We learned from a child social worker from the Kansas city Children's Hospital about how to transition care to your child so they can manage their own health concerns as an adult without it being "dumped" on them when they are 18. We heard from a gentlemen who had a transplant at 10, who did not transition his care into adulthood well, and ended up needing another kidney because he didn't take care of his first gift. It was heart wrenching.
We heard from the NIH (National Institute of Health) on how funding is distributed for research. The foundation is working on getting $1.5 Billion dedicated to kidney disease research over the next five years. The research going on today ranges from stem cell research to grow healthy kidneys, to cancer medications to reduce cysts in the kidneys and other organs, to understanding how the primary cilia communicates with the kidney, and many other areas within the kidney to improve function. These are exciting times.
The biggest take away from the convention was new found friends: a couple local to Cincinnati\Dayton area who were recently diagnosed, a mother who lost her son to ARPKD 3 years ago, and a father whose new set of twins had one diagnosed with ARPKD.
We are so grateful for the community of PKD families to help us figure out what we should be doing to advocate for Logan. We are grateful for our PKD in Children Chapter Coordinators who keep us connected and learning from each other. We are grateful for our family and friends who continue to love us and support us as we take this journey together.
Ann and Dave Wiesman
