Latest Numbers are not trending well

We went to the doctor this week and Logan's kidney numbers are not trending well. His creatitine and bun levels are both out of the normal range which has caused his Bun/Creatinine ratio to be out of the normal range. These three metrics are all indicators of kidney failure. However, his GFR remains barely in the normal range. I have a question out to the doctor as to which of these is the best overall indicator for kidney health, but even with that answer I fear the decline has begun.

If you look over the last three years his overall GFR has dropped 41 points. If that continues he will have complete kidney failure over the next three years. Over the last 18 months the decline has been pretty aggressive as you can see from the chart below. The more cystatin C in the body the less the kidneys are functioning to remove it. He is still considered to have very high kidney function for now but I am bracing myself for the next 6 month appt.

Logan is still a happy, goofy 5 year old who plays tricks on us on a daily basis. He is excited about going to kindergarten at Mason Public in 2.5 weeks. He starts soccer again in a few weeks as well and loves playing defense. He is practicing so hard to ride his bike and hopes to have it mastered by the end of the summer. Logan took a break from piano this summer but will start back up in the fall. At a friend's house last weekend Logan swam the length of their entire pool. We may be putting both him and Ethan in a swim team this fall. 

The whole family is looking forward to the PKD walk this year on September 27 at 11:30 at Voice of America Park. If you would like to join our team you can sign up at the link below. While I am not coordinating the walk this year, I am still organizing the kids area. I may even be sitting in a dunk tank if you would like to take a shot at me. :) 

Walkin' with the Wiesmans team 

As always we appreciate your love and support. Your friendship does make us stronger.

Ann & Dave

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