I was diagnosed in 2007, i'm now 40 with multiple cyst on both Kidneys and Liver, at what age does kidney failure normally start?

[123432]

[Twinkle30]

Hi there!

My husband was diagnosed in 2006 and is now 41. Last week he was told he had only 46% kidney function. Unfortunately he was silly and didn't go for his yearly checks so we don't know how long its been starting to lose function. All that a side I think I have learnt everyone's journey is different but it is important to be have ur urine and bloods done every year.

Do u have a family history of pkd/L in your family?

I would just like to add my husband has had no symptoms yet, he went as the loss of his mum shocked him to be checked and be more proactive.

[123432 in reply to Twinkle30]

I have been doing my annual checks, they don't really discuss the results they just tell me they will let me know if they have a concern.

As far as I know I'm the one in my family with Pkd. Neither parent have had it my siblings don't either.

[Twinkle30]

Well it sounds like you are keeping well and if your function was down they would tell you. Keeping a health lifestyle can delay the affects of the disease and keeping your blood pressure normal too which all goes hand in hand really. Where abouts are you in the country?

[Twinkle30]

Also I may add if you are unsure dont be scared to push for a scan or a referral to consultant. We have found in east kent you need to be super proactive and especially on the liver side of things.

[123432 in reply to Twinkle30]

I live in London. I had some pain a few weeks ago so my GP has referred me for a CT scan which I am having next week.

I do my best to keep healthy and keep fit and I find that I stay positive by not focusing on it but just getting on with life. In 2007 when diagnosed they made it sound so bleak and scary but I have had 6 years since if being fit and healthy. So my advice is not to worry until you need to and get on with life.

[Twinkle30 in reply to 123432]

Yes your advice is right to be aware but not let it consume your life. We are just finding around appointments it occupies our thoughts. Anyway I hope your scan goes well.

[PKDC-Admin Partner]

Hi, it's very difficult to predict when, if at all, kidney failure could happen in PKD.

Once you are diagnosed however, doctors can track your kidney function and other blood test results over time. This means they can alert you if they think you might need therapies, such as help with anaemia.

The charts can also help with timing discussions regarding dialysis or transplant, if they see that this might be likely.

Which hospital in London do you attend?

[123432 in reply to PKDC-Admin]

My Hospital is St Georges in London

[Hidden]

There is no set age. It depends on many factors including the agressiveness of your disease as this varies within families. What you need to watch is your blood test results. Low stress levels help. One called the EGFR is roughly a percentage of kidney function. The higher the better. You are in trouble if it reaches 20 or below and will be having many discussions with your renal team if that occurs. Until then dont worry and enjoy life the best you can and prepare for the future. Research the disease as much as you can as this helps significantly. There are many groups online and on facebook to join. The PKD charity has three inc this one.

[123432 in reply to Hidden]

Thanks all for your responses, great advice. The hardest one for me is keeping my stress levels down it's easier said than done, but I know it's important so I started accupunture for relaxation and I'm training myself to say 'NO' more often