Well Balanced

The last few months have been spent balancing high blood pressure with kidney function as well as balancing emotions of fear and thankfulness.

High Blood Pressure vs. Kidney Function
A few months ago Logan's kidney function dropped drastically due to PKD's relentless cyst growth and the high potassium blood pressure medicine he was on. After multiple medicines and blood work throughout the last few months we believe we may have found a winner. His blood pressure is currently not as low as we would like but we are still tweaking the dosage to pull it down further.

FEAR

Logan is in stage 2 kidney failure. There is no more denying this disease is in our house and is starting to have an impact on him. He complains about itching, headaches, stomach aches, back aches, and other symptoms common to this disease. The switching around of medicines has made him nauseous a lot. His body hasn't been able to regulate any one of the medicines because we keep putting him on something new every few weeks. We have actively begun talking about transplantation so that he can start to formulating his feelings around it. I have called Child Life at Cincinnati Children's Hospital to get a better idea on how to expose Logan to the hospital before he will be going under the knife.  More to come on this one.

I spoke with Ethan yesterday morning on his concerns for his brother. He said "I wish I could donate my kidney now. They are the right size for him." He also said he was scared to donate his kidneys because it might hurt. I am such a lucky mommy. Logan had his ultrasounds yesterday: renal and full abdominal. His renal showed that his kidneys have grown to 16 cm. I still hate the renal ultrasound as it is a constant reminder that this disease is taking over my child's physical body and there isn't a darn thing I can do about it.

THANKFULNESS

Logan is only in stage 2 renal failure. We have finally found a medicine that appears to be helping with blood pressure. Our pharmacist was proactive and flavored Logan's new medicine with lemon, because it is his favorite, without us asking. Logan's nephrologist has been gallivanting around the world including NIH conferences to keep up to date on all the latest in kidney advancements. He never once missed responding to an email within 2 hours while Dave and I tried to navigate the medicine whirlwind. Logan's full abdominal ultrasound showed that his liver is not fibrotic and that all other organs remain clear of cysts. The Duke Clinical Trial we are participating in for genetic mapping called me for an interview this week and our blood work has been submitted for testing. We should have analysis completed within 6 months. This will tell us if Dave and I have recessive genes that created this or if Logan was a "spontaneous mutation". 

The best news of all is that the PKD Convention in Orlando is in 2 weeks and I am so excited. We will get to hear from the scientist who created the artificial kidney and learn how it works. We will get to have private sessions with two PKD researchers. One of which has shown evidence of REVERSING, not slowing progress of, PKD.

I am, as always, thankful for my family and friends, near and far, who ask not only how Logan is doing but how I am doing. Your hugs and thoughtfulness continue to make me a better mom to my two boys and I sincerely can't imagine going through this without you.

Ann and Dave