FROM STORIES

Living in pain with a 3kg kidney

“we wanted to share a story from one of our community members that addresses the issue of pain and demonstrates the complexities of the disease. It prompted us to get in touch with our scientific advisory board for advice on dealing with pain from PKD”

By John

My eGFR kidney function number is currently at 27, so by renal clinics there is nothing to do here. Move along. The slight catch with this “one number check” is that it applies to the majority of renal failures. In these cases as the kidney fails it can shrink in size.

The condition I have is called polycystic kidney disease or PKD. This has a different result as the cysts grow the kidney gets larger as the kidney fails. So as described above, where the general 150g functional kidney gets smaller, the eGFR is a good gauge. With my PKD I have had one kidney removed and my original 150g kidney is now 3000g. Yes 3kg! So as any rational thinking person can see the eGFR no long becomes the only significant measure in the comfort to the patient.

Unless you are in a renal department, where the eGFR remains the only guide to treatment. Anything else is an inconvenience. As the kidney grows the pain increases dramatically. “But you are doing fine” they say “your eGFR said so.”

You’re in pain? Here, please keep taking fentynal slow release 3 day patches and top that up with endone each day. When pain increases we will just up the fentynal doses. And we will add no extra help. Please practice some mindfulness. Learn how to put the pain into another part of your mind so that you can lead a better life.

So in short. Keep suffering large amounts a pain caused by a massively inflated organ pressing against all the other organs. Keep taking dangerous and highly addictive narcotics because your kidney function number states that you’re not that bad yet. And wait. Wait for that eGFR number to say that you are sick enough for more treatment. But now because your body has been under strain from a crushing organ and your system is burnt out from taking massive quantities of narcotics you now have a low chance of a good recovery with treatment.

2 comments

  1. Vanessa

    on

    Reply

    ‘100% John. This really needs to be addressed. Size does matter!’

  2. Sharon Borg

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    Reply

    John,
    My eGFR kidney function number is currently 35 and some days I get so tired but yet I am told it is not due to the Polysistic kidney disease.
    My liver is 60% covered in cysts and I have lost 10% of kidney function in 4 months. I am sure I can feel the swollen liver up under my rib cage at times but yet there is nothing they can do.
    Surely with all this my tiredness has to be contributed to the disease BUT the doctors don’t agree.
    I am still working 4 days a week and at 55yrs of age I have a few years left of work.
    Doctor now talking about a new pill to try me on, let’s see how that goes.
    All the best John.

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