My daughter was diagnosed with PKD at 7 years old, she has numerous cysts on her kidneys. Will she be severely effected in adulthood?

[Niamh61]

I am wondering if having numerous cysts at a young age means she will be severely effected. Her father had an aneurysm at 38 and is now severely disabled both physically and mentally.

[johnspc]

Hopefully being diagnosed so early, close monitoring will prevent any catastrophic events

[atropa]

Best to discuss this with your specialist, as he'll have more information. Is it definitely ADPKD? And how it was diagnosed? Multiple cysts as such do not mean a poor prognosis. The cysts are always present from an early age, or birth even, but not all of them grow. It's usually the growth/size of cysts that causes symptoms. The course of the disease is hard to predict.

[picklemum]

I know you posted this a while ago but I'm in a similar position. My daughter's kidney cysts showed up in my antenatal ultrasounds. Our local hospital referred us to Great Ormond Street for follow up, they monitor her but there has been no change in the number or size of cysts and she is now nearly 5 years old. Kidney function is fine. Can I ask what led to your daughter being diagnosed? Most adults aren't diagnosed till they have symptoms, so would have no idea how long they've actually had cysts - many people could have developed them at an early age but wouldn't know about it.

All the best

Lexi

[Niamh61]

Hi

My daughter was diagnosed due to stomach pains which turned out to be a reaction to her father (also has PKD) having a severe brain hemorrhage resulting in extensive physical and mental incapacity. She is being monitored for BP 3 monthly and has a yearly check up. Cysts are thankfully not growing at the moment.

Does anyone know if pregnancy puts a strain on the kidneys of women with PKD?

[____paru in reply to Niamh61]

kidneys will have strain during pregnancy as they have to do double work..i was diagnosed withpkd before my pregnancy...i didn,t had any problem with that..but my bp was very high..190/90..and at the time of delivery 205/100..i was on medication for bp..6 tab a day..