I’ve been a member here for a year, and not written anything, Not sure why I just did want to accept it I guess. I would like to know if there are any mums out there in this community that have kids with PKD?
I have 4 children and 2 of my girls my youngest children have ADPKD At the time of writing this they are both 7 (not twins! Story for another day!) We found out when my oldest of them 5 at the time was rush into hospital for suspected apedix rupture, to find out she has numerous cysts in both kidneys one of which is 4cm and her little kidneys are only 9cm themselves. It scares me how many cysts they have in both kidneys, each time they go for a scan my anxiety hits the roof! What if there’s more scaring or cysts? How many more can fit in a 9cm kidney? For now their kidney function is fine and their blood pressure is at a good level.
It’s my husbands side that has it and after asking about in the family it’s been a problem for years but no one thought to tell him. He has cysts on his liver too, which the girls specialist has said they will need to be tested for before going on any contraception when they are like 90 and thinking about sex that is! It’s been a long road, the girls have had to make big changes in their life due to this disease: no contact spots at school etc.
I would love to have Someone in the same boat!