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PKD Charity for Autosomal Dominant PKD

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Due to see a genetics councilor on the 6th October. Feeling scared and confused.

PurpleButterfly81 profile image

Hi I'm new here. I'll start with some background and I apologise as this may be long winded.

I came into contact with my long lost father 2yrs ago now. I was over the moon to find him but he had some sad news to tell me. My father has pkd and his father had it too.

I have for the past 5yrs or so suffered from recurring uti's/kidney infections. They have been more frequent this past 3yrs I would say. This year I suffered a bad uti that required a 3 week course of antibiotics. I have never had an infection like it. The pain in my right side was the worst and constantly going to the toilet.

Rewind 2 months ago when I had an ultrasound due to the pain. My results showed a fatty liver, my left kidney was OK but there where not able to see the right kidney properly. Everything else was OK too.

For the past 3 months or so I have been suffering from constant pain in my right side and back, just below the ribs. The pain will occasionally radiate to my right shoulder. I also have occasional pain under my left ribs but this isn't as intense as on the right side. I also have to pee more than usual and sometimes get a pain in my right side if I really need to go. I am tired all the time and don't have much of an appetite. My stomach is always bloated and when i get my period the pain gets worst in my side!

I've had full blood count and urine tests. My GFR 60. Urine test had 1-10 per cmm pus cells.

God i sound like a right moan bag!!

So my gp referred me to a genetic specialist. I have an appointment for the 6th October to have a genetic blood test done. I am so scared not for myself but for my two children.

I no the results can take anything from 2 months onwards to come back. I am trying to stay positive but I no my body and I just don't feel right. Maybe its just playing on my mind too much and I'm being silly.

6 Replies

Ok Purple butterfly, first thing let take a really deep breath, i truly understand how you feel, i did not get diagnosed until my sister located my father and the news was broken to me, i know just how scared you are at the moment.

2 question for you how old are you? (if you don't mind me asking. When you had the scan did this confirm cysts on you kidneys?

The reason I ask, is that there are 2 forms of PKD, PKD1 & PKD2, there is only a 50/50% chances that you have inherited this from your father, if you have not inherited the gene you cannot pass it onto your children. Only 50% of people who have PKD go into renal failure. Sometimes the cysts do not show up until after 25+.

Now if you do not have PKD, your resent kidney infections, which sounds really nasty could be the reason for the drop in your GFR, it is fantastic that they are doing a gene test to confirm one way or the other. Either way they need to get that kidney infection under control, because if you have PKD or not an infection that bad is not good for you kidney health.

You are not being silly, you have had a terrible shock, meeting your father is bad enough but finding out you could have a life effecting condition is down right scary.

On a positive thought if they did not find cysts during the scan then the gene test is just for clarification to confirm defiantly one way or the other, and it is possible you do not have this conditions, and i pray for you that you do not have it.

If you do have this remember that there is only a 50% chance of you passing onto your children, but please do not panic and go out and check them as it will have an effect on thing like life insurance.

Me and my sister were both tested, my sister always suffered with kidney infections, i had no symptoms, she was clear and I have the conditions, so having a kidney infection my not be an indication that you have this condition.

I hope this helps, if you do have this condition or you want to understand more about it, you can contact the PKD charity, they have a befriending program for anyone who is effected by this condition, even if its a family member and you want to understand more about the condition, there is a Facebook group who are also an amazing group of people who will be more than happy to help you at this time.




0300 111 1234

I hope this helps, all the best

Jan X

Thank you for your kind words and advice. I am 36 and also have costocondritis (I think that's how you spell it) this also affects my right top rib cage where the breast bone is.

They didn't confirm any cysts on the scan just fatty liver.

My father was diagnosed when he was 56.

So your age is important in this instance. Generally if you have PKD you'll have at minimum 2 cysts on each kidney by the age of 30. The cysts grow and cause your kidneys to become enlarged over time, and often there are other complications like hypertension, most commonly.

It's weird that they couldnt see your right kidney but if your left kidney looked ok it implies that: its not covered in cysts; it's not enlarged.

PKD by name is "poly" - which implies it affects both kidneys, not a single kidney only. So it doesn't sound like PKD is causing your issues because if it were it would definitely be visible on the kidney they examined.

Keep us posted on how the test goes!

PKDC-Admin profile image

Try not to worry about the genetic implications for your children at this time. It's important to find out what is causing your pain and reduction in kidney function. Genetic consultants are very skilled at communications and will explain the risks, and help you with talking to your children.

Hello Purplebutterfly81,

sorry to hear you are so worried.

If I might add something to the previous replies:

Please do not underestimate the dx 'fatty liver' While this condition is fully reversible, it can progress to something more serious.

As suffering from both PKD and chronic liver disease I have learned that constant tiredness, bloating and lack of appetite can (not must) be part of the symptoms of CLD. Same goes for RUQ pain. Tiredness is a typical sign fot liver disease.

If you have not had a liver panel done already, you should certainly ask for one.

Fatty liver ought to be counteracted by diet and exercise. Lifestyle changes.

Good luck,


Hi, thank you all for your advice and support. I had an appointment with my doctor yesterday and he has taken a urine sample to be tested and has also sent me for a diabetes blood test.

I forgot to add in my post that my father also has polycystic liver as well.

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