Mother has PKD, I have cysts, information

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Mother has PKD, I have cysts, information

Postby mollyrwhitewater » Fri Mar 11, 2016 12:00 am

Good afternoon!
My mother is 50 this year and has had renal failure for 5 years now. I have had ultrasounds that confirm I have cysts, but thats all they do. Confirm there are cycsts that are not growing. How can I prevent kidney failure? Am I destined to have to go through this also or can I have them and they never do anything?
Suggestions, tips, anything helps really.
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Re: Mother has PKD, I have cysts, information

Postby rheaybou » Fri Mar 11, 2016 11:55 am

You need to push the matter with your hospital or GP to get as educated as possible on PKD. Sounds simple but it's the best way to start.

Plus don't believe that a miracle cure is going to help you and repair the damage if you just buy a book for $49.99 plus postage.

I didn't get renal failure from PKD but another genetic condition, I know a few families who have PKD but that's the limit of my knowledge.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
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Re: Mother has PKD, I have cysts, information

Postby wagolynn » Fri Mar 11, 2016 10:44 pm

Hello mollyrwhitewater,

I am sorry to read of you and your mothers PKD.

At the stage you are at there is nothing to be done other than keeping your blood pressure low. How the PKD will progress in you, and how long it will take is unpredictable. I was in my 60's before my PKD became a problem, our youngest daughter ran into trouble in her late 30's, our eldest has it but so far it has not made any impact on her.

To date, there is no known cure or any reliable way of affecting its progress.

This link may help you to understand the condition http://www.edren.org/pages/edreninfo/po ... se-pkd.php
If, having read this information, you have any questions post them, and we will try to answer them for you.
There is a lot of information on the internet but as always, much of it is rubbish.

As I see it, you have two options, the first is to ignore it, and get on with your life. The second is to learn as much as you can, and then put it to one side until it cannot be ignored.

I would expect your consultant will monitor you in the mean time, at this stage perhaps once a year.

There is a lot of work being done on ways of correcting the faulty gene involved but this is not yet ready for clinical trials.

Best wishes.
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Re: Mother has PKD, I have cysts, information

Postby MandyA » Sat Mar 12, 2016 4:46 pm

The effects of ADPKD vary enormously within families, so it's impossible to predict how it may affect you in the future.

My father was adopted, so had no idea he had ADPKD.

When I was in my 30s, my sister had an ultrasound scan which revealed cysts on her kidneys and liver, and she was subsequently diagnosed with ADPKD.

My dad, my brother and I were then diagnosed, and recently my 13 year old niece has also been diagnosed with the condition.

However, I am (so far) the only member of the family who has suffered renal failure. Everyone else has (or had) kidney function of over 60%.

All you can do is attend hospital appointments or annual check ups at your GP surgery to monitor your kidney function, and keep your blood pressure well controlled, e.g.by eating a low salt diet.

The members of this forum are very helpful with advice and support.

Best wishes,
Mandy
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Re: Mother has PKD, I have cysts, information

Postby Dibs » Mon Mar 14, 2016 1:26 pm

Hi.

I knew from my late 20s that I had inherited PKD from my father. He and his two siblings died in their 40s. There was/is no treatment yet apart from keeping your blood pressure under control. I reached 54 without it affecting my lifestyle and now I am on dialysis. After you have had a series of blood tests over time (years), you should be able to see how quickly you are deteriorating.
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