PKD Charity for Autosomal Dominant PKD

Panic mode

Hi I'm new to this

I was diagnosed 17 years ago been relatively fit and well apart from an episode of kidney stones 10 years ago. Have been having serious pains for 4 weeks now have blood white cells and protein in urine but no infection present had ultrasound scan yesterday and was told unable to check kidneys because they completely covered with cysts I'm now in panic mode as don't know what that will mean for me .

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Hi. I myself don't have PKD, though my husband and daughter do. I posted on here for the first time, just a few days ago, and I found the replies I received fantastic, the support and information was great, and put my mind at ease. Really hope this group gives you the same reassurance. Sorry I don't know enough to help you myself. x

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Thank you for your reply. Sometimes just knowing that there is support helps , must be very stressful for your family . My thoughts are with you and thanks again for taking the time to reply xxx

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Hey. Those ultrasound people are not always that helpful and don't even know what they're looking at sometimes. You should find a nephrologist to advise you. They will likely do a urine sample and some blood works to confirm your Kidney function, which is most important to understand.

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Thank you for your reply I agree with you they do panic you sometimes ..

Lynn

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Hello Lynn-57,

I agree with the post above - you should see your nephrologist as soon as possible. I presume you're under the care of one? White blood cells and protein in the urine usually mean infection, so I'd ask why you were told it wasn't. Was this your GP? Infections should be treated with antibiotics at the outset as they can cause harm to the kidneys if left untreated. What's your kidney function? This can be checked by a simple blood test at your GP's, it's called the eGFR.

Hope you get it sorted soon,

Anke

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Was treat for infection but was no infection present when results came back I have white cells and blood and protein in urine still , have an appointment with consultant next week. Have had blood test done awaiting results. Thanks for your reply

Lynn

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Hi Lynn

I’m sorry you’ve discovered the numerous cycst through an ultrasound. I too have many large cysts on my kidneys and liver but my kidney function is not compromised at all and I still have no symptoms even though I was diagnosed at 16 and now I’m nearer 58 than 57! As mentioned on another post, blood tests are a good way of monitoring your kidney function which is what is monitored by the medics.. speaking of which a good nephrologist is a must to put your mind at rest give you any assistance on maybe a special diet or to start a medication try not to worry that you have lots of cysts. One of the main things is to keep a close eye on blood pressure.

Keep positive and if I can be of any help please just ask. There are many degrees of this very common disease.

Regards Andrea

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Thanks Andrea. Yea blood pressure was high but under control now I think because iv had it for quite a while with very little bother I was a bit took off guard. Have calmed down a bit now xx

Lynn

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That’s good ... there’s always ups and downs but it’s better to be onto of any changes

Best of luck😌xx

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Hi Andrea. Your post fills me with allot of hope. Was just diagnosed today.

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Hiya Digspin

Sorry to hear your news. Tell me about what they found and was it through a routine MRI?

Regards Andrea

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