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I’m 41 yrs old and I have ADPKD

By Jenny

I’m 41 yrs old and I have ADPKD. I was diagnosed at 15 after my father died suddenly aged 52 from an aneurysm and it was discovered he had it then. I am the only one of 4 siblings with PKD. A search of his father’s medical records showed that he had died in his 50s of renal disease. Back then they didn’t have the modern technology of today so there wasn’t too much information. One day I would like to trace the family history. I have an 18 yr old daughter who is clear so far so I hope it stops with me.

I have multiple cysts on both kidneys, they are completely covered. I have had lots of kidney stones over the years and blasting surgery with stents 8 years ago. I manage these now with sodium bicarbonate and it works well. Early in 2019, I found out I was stage 3a function sitting at 59%. I definitely knew something had changed. I have had a few burst cysts but luckily no major issues so far. Some days I feel very tired and mentally I have good days and challenge days. My BP is still perfect!! I try to be positive and speak well over my health and try my best to look after myself.

Unlike my dad and his dad, I have been blessed to have known early and been able to manage my condition. I get checked every 5 yrs for aneurysms and so far I’m clear. Also, I am eligible to start tolvaptan and hope to start this soon.

I had never met other patients face to face until I went to a PKD seminar recently. I finally felt like I wasn’t alone. I finally felt like it’s ok to share my story. For my whole life, it’s just been me and so I’ve never shared too far.

I was just so young when I lost my dad, it was a really difficult time growing up.

Who knows what the future holds, all I know is that I have an amazing partner who supports me and has a good understanding of PKD, we are getting married in March and I can’t wait. I have beautiful kids – we have a great blended family.

I’m rich in the things that truly matter.



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