I'm old but I'm new to this site......

[MrsKoch]

Well, not that old, I just turned 50 and was diagnosed with PKD/PLD at 21. It ran in the family so it wasn't a shock. At 47 I found out my eGFR had dropped below 60. I only found out because I'd switched GPs recently and my new one made a comment about it. Before that moment I had no idea my function had fallen at all.

I remember sitting there as she turned around in her chair, screwed up her face and said, "Stage three renal failure, wow". I didn't skip a beat on the outside but on the inside my blood ran cold. I was numb for a minute or two, the blood flowing out of my limbs towards my heart and brain.

A few weeks later I went back to her and was discussing my kidneys, liver and cysts on both. I recalled to her how I sometimes get sharp pinpoint pains in my back and in my belly. She proceeded to tell me that was impossible because my kidneys, liver and other internal organs were incapable of feeling pain like other parts of the body. I never went back and spent the next year finding a doctor (actually a group of doctors) that understand the condition and what we go through.

My outlook is good most days but when it's not I usually bottle it up because I have no one I can talk to that can relate. My husband is amazing and would do absolutely anything for me but when it comes to hearing about damage to my body and suffering he just can't take it.

Thanks for listening!

[tillymint16]

Hi MrsKoch

Welcome to this site! I’m not really old either 58!

Interesting reading... like you I was diagnosed with PKD and PLD at 16.. inherited from my Mum. She died of a brain haemorrhage sadly at my age now .. nearly 30 years ago.

The thing about us is we know what we have it can monitored with ultrasound.. regular blood tests ( yuk!) also in my case MRI, and medicine is coming on leaps and bounds. I’ve also just had a coiling for an unruptured aneurysm just 4 weeks ago which has hopefully saved my life unlike my Mum.

I’m active and have a healthy lifestyle. We understand about keeping BP good and being mindful of low sodium diets and not being overweight.

We’re the lucky ones! as it’s a slow developing disease and at least we know!.., which is a lot more than other people who never get tested or monitored until something goes wrong.

Like other invisible illnesses.. it often makes the sufferer feel isolated but you’ve always got a PKD buddy here who knows exactly how you feel😌oh and by the way GFR of 60 is great and only what it would be more or less at our age anyway.

Best regards and enjoy your day

Andrea

[terrysinclair311294 in reply to tillymint16]

I am 23 years old with stage 4 renal failure and a kidney function of 23 percent... I was diagnosed when I was 14 years old and as for this being a slow developing disease I find that untrue as in just under 10 years I have progressed from a kidney function of 93 percent to 23 percent. This is sadly not a slow developing disease and it is somewhat still misunderstood by a lot of GP’s in the field who have to follow guidance from specialist nephrologists at the hospitals in the area.

[Marie204060 in reply to terrysinclair311294]

I have found out this can be treated in China. Chinese’s hospital. I am considering this.

[PKDC-Admin Partner]

I'm always amazed to hear that GPs still don't understand pain in PKD. I'm pleased you have found a surgery that does however. Take care.

[scott123]

Below 60 is still a good amount of room, look at pkdiet.com,, keep your diet to low potassium, phosphates, get off acid foods like meat as much as you can, if you are a slow Progresser this can buy you more time