We found out that my unborn daughter had a cyst in her right kidney. It was then that they questioned who she’d received it from, and we discovered that my husband had ADPKD. He was never screened for it even though his mother is Stage 3 ADPKD, and his sister is Stage 1 ADPKD. My now five-year old is Stage 1 ADPKD. My other daughter, who is almost one, will be screened sometime this year to see if she also has ADPKD.
This past February, we lost my husband’s uncle. He was Stage 5 ADPKD and passed away at the age 56. My husband and mother-in-law are planning on trying the ADPKD medication to see if it will help. If it helps, we can have options for when my daughters grow up.