Eliana is about to finish elementary school! It is hard to believe that she had one normal year during that time, which was kindergarten. First through third grade were spent in and out of the hospital, and fourth and fifth grades have been as normal as we could make them, given that she does dialysis every night. The lack of kidney function has affected her growth, and she hates being smaller than the other kids. She will start growth hormones soon and hopes to catch up in height somewhat over the summer before going to middle school. This was the last year that she and Parker will ever be at the same school again. Heartbreaking!
Last week, we had the chance to go to the NephCure Patient Summit. This is an event where patients, caregivers, advocates, doctors, and volunteers come together to support each other and learn more about managing kidney disease. While packing and prepping for the event, I realized that over the last two years since we lost the transplant, I have avoided talking about her kidney disease with most people. I also unplugged from the constant research I was doing to find a cure and tracking all the newest options. Going to the event was mainly for Eliana, so she could meet other kids with CKD and hopefully form bonds with them. Leading up to the event, I realized that I still had a full day of the summit to attend myself, and I became anxious, knowing that I might or might not leave with knowledge of potential treatment options and hope for the next transplant to be successful.
The first night’s intro speech renewed my hope. It was said that we are on the frontier, like in the 1960s when there was the race to the moon. With successfully transplanted pig kidneys and new genetic findings, drug companies are racing to provide a profitable solution the fastest. At the summit, I learned that there have been many advancements in treatment options for IgAN, but not as many for FSGS yet, though I am hopeful that it is coming very soon!
Another speech I heard emphasized the need to share our stories. Boomer Esiason has raised $200 million for the Cystic Fibrosis Foundation by telling his son’s story to anyone who will listen. We were all encouraged to do the same. Rare kidney disease is exactly that, RARE. To get the funding for research, we need to talk about it more to raise awareness. Hearing this made me realize that I avoid the conversation more often than I embrace it. I feel like talking about it brings a weirdness to relationships and a sympathetic tone that I do not like. My goal now is to talk about it more, but I must learn how to do so in a way that brings hope and inspiration instead of sympathy or sorrow. Since we haven’t reached that chapter of the journey yet that brings hope, it is a hard story to tell. I am open to any and all feedback on how I can improve on this—please message me if you have any suggestions.
Health update: Eliana is still doing daily dialysis. We are waiting for more options to be available to add to our arsenal in the battle she will have to fight in the next transplant. When it is time for the next transplant, she will do best with a living donor. Her dad is a match, and we hope to be able to line it all up quickly when the time is right.