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PKD Charity for Autosomal Dominant PKD

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Deb_bie64 profile image

Hi all, new here. Just wondering are you automatically referred to a specialist after discovering you have PKD? GP gave me the diagnosis from CT scan results and was very flippant when I was shocked. I've asked the receptionist if I've been referred on and she said she can't see a referral on my records. I appreciate everything is crazy at the moment but feel a referral should have been made? I have no idea where I am with regards to PKD, except both kidneys have many cysts and one has a large 10 -12 cm cyst. I am on 2 BP meds.

I'm sure I am experiencing symptoms such as abdominal 'fullness' or 'pressure' and seemingly constant reflux- again my GP said these are not due to PKD, but from my reading they could be?

Just a little lost at the moment.

6 Replies
Susan_101 profile image

Hi Debbie. please reach out for support on one of the very active PKD Facebook groups or ring the PKD helpline 0300 111 1234.

Deb_bie64 profile image
Deb_bie64 in reply to Susan_101

Thank you

Your GP should automatically refer you but maybe it hasn’t happened yet due to covid-19. Most clinic appointments are postponed or being done by phone at the moment anyway. PKD is a slow developing condition so don’t panic you will be fine for now just chase up the GP when things get back to normal. The main ‘emergency’ with this condition is if you get a kidney infection or stone both of which you should go to A&E but it’s unlikely, so don’t worry.

The 10-12cm cyst dosent sound good, its damn painful when they rupture, hope you get referred soon take care x

You should be referred by your pcp. Don't worry, just ask your doctor for a referral and go to the pkd foundation for more information, I am a believer in advocating for my own health, if your doctor is not assisting you change and find a new one. Mean while research, research.

Thanks all. Spoke to my GP and a referral to a nephrologist has been done, the appointment is beginning of October due to Covid 19. He said all cysts are smallish apart from the one on my right kidney which is 16cm x 12cm. He has now agreed with me the stomach discomfort and side/back ache is probably this. He knew nothing about infected cysts or ruptured cysts. Do I need to be vigilant for this, how will I know? I'm very active, exercise and run. My abdomen now feels 'large' for me and I don't like that when I run, but is exercise okay?

I'm having bloods again on monday as my last one 5 months ago showed a decline to borderline normal - a big drop from the previous one.

Thanks for any advice

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