After 3 years am I still in denial?

Logan's last appointment was March 3rd. His kidneys have grown to 15.3cm and 14.7cm. This is double the size of a normal kidney for his age and even larger than an adult kidney. They have grown almost one full cm in a year. I was shocked. I knew they were going to grow but I didn't think by that much. Not sure why I thought that. Maybe because he "seems" healthy. He acts like a typical 5 year old. It is easy to let myself believe that nothing is wrong. That his kidneys are going to be the anomaly and he won't lose function. He won't need a transplant or have to go on dialysis. He is going to somehow 'beat this'. This appointment was reality slapping me back in the face saying "Don't be an idiot".


It breaks my heart thinking about him having to go through what is sure to await him: magnitudes of doctors' appt, multiple surgeries, medicines every day for the rest of his life, potential dialysis, pain from ruptured cysts (which I have heard is so bad most end up in the hospital to get pain killers that are strong enough to help), liver failure, and a whole slew of other potential issues that will make me go crazy if I think about it too much.  Just like any other parent I want him to have the best in life, but this prevents me from fantasizing about his future they way that I want to.


Logan's personality has really taken shape this year. The kid is a kidder and is always looking for the laugh. With friends over he grabbed a microphone and started doing a stand up comedy routine. He was really good. (We need to work on him not laughing at his own jokes.) I know he will take the world by storm in whatever capacity he can.


There is so much research being done for PKD these days. It really does create hope. The PKD Foundation continues to fund 15 research grants, 3 for ARPKD, to identify a treatment. In addition to PKD research, other research areas are making huge strides that offer opportunities for Logan:

• Better criteria for matching organ transplantation donors to reduce anti-rejection and immune suppression drugs
• Better methods for extending the longevity of a kidney transplanted organ to 20 years or more (reducing the total # of transplants that Logan would need)
• Stem cell research that builds a kidney out of the individual's OWN stem cells - this means no DRUGS after transplantation (not certain if an additional organ would need to be grown or if it is a one time and done)
• Artificial kidneys - this machine kidney would eliminate the 100,000 person waitlist for kidney transplants. Should be up for clinical trials in 5 years.

Logan still has 100% kidney function. Dave and I are working with his nephrologist to begin testing liver function this summer. A dear friend of mine suggested that I focus on function and stop getting ultrasounds all together. I think this is sound advice. I can't do anything about how big his kidneys get, and his function is really the indicator for how he is progressing. So if we take out the growth of his kidneys, Logan is doing GREAT! His blood pressure remains around (105-110)/60 and he starts soccer in a few weeks.


Your love and support keep us going,
Ann and Dave