This one is a little late. Last friday we had to go back to the doctor because his blood pressure was still not under control. We got put on additional medicine to help bring it down. We were smart enough this time to ask about side effects. This new medicine can cause a dry cough, increase in potassium levels, and a potential to worsen his kidney function. So we are still on the big gum medicine and this new medicine that requires us to go next month to check potassium and kidneys again. He said we are keeping our February appt to check kidney function too. The next ultrasound will not be for a year.
In addition Dave and I have been asked to coordinate the PKD walk for Dayton/Cincinnati for 2013. This will be in September. We are hoping to have it be even bigger than last year. We are very excited about this and will be going to Kansas City in Feb to meet the board of directors and Chiefs of the foundation for a weekend.
If you hadn't heard there was a break through this year for ADPKD with a new trial drug called Talvapan. It is NOT a cure but it seems to be slowing down the growth of cysts. This is only in ADPKD patients and we are still assuming Logan has ARPKD. We can do the DNS testing to find out but it costs $5000 and is not covered by insurance. This test would currently not help us as talvapan is not perscription ready. More tests will continue in 2013. So we are holding off on the test.
As always we appreciate you reading this and keeping up with what is going on with our family.
Love and hugs,
Dave and Ann
