Who monitors you for ADPKD? - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Who monitors you for ADPKD?

PKDC-AdminPKDC-AdminAdministrator57 Voters

Please select one:

10 Replies

??? I don't think anyone "monitors" me, at the lower end of stage 4 with other problems as well. As I should have a written care plan, I can only assume it says "Ignore her."

I feel my last last answer was a bit ungrateful, as i do get to see consultants quite often, and my GP whenever I ask -- often quite quickly. But I don't get a sense of any "monitoring", just a quick flash of attention when I bob into view. I think this feeling is partly because there is never any follow-up "Take these pills" but never "How did the pills go, can we improve things?". Not even an assessment of the iron infusion I was given.


Thanks for your comments. It would be interesting to hear from others if their consultants or health professionals ever follow up any prescribed therapies or ask for feedback from patients.

Cisticola in reply to PKDC-Admin

I find the lack of a care plan rather troubling too. And right from square one it's been lacking. The day I found out about my PKD was by seeing the ultrasound screen myself and having the condition named by the radiographer. No one gave me any indication of the consequences of having kidneys that looked like a combination of Swiss cheese and an Aero bar until weeks later. In the days following I even stopped buying new clothes...

humpstump in reply to Cisticola

Cistacola, I feel the same way. But why did you stop buying new. clothes

humpstump in reply to PKDC-Admin

PKDC; where in HoustonTexas can I find a network in US like this.


I used to be monitored by my GP however since my mum died 2 years ago at the age of 41 I am now seen every 3 months my my renal consultant.


GPs are ok for basic stuff but due to most of them only having basic kidney training it isnt long before they start referring questions to your consultant. If they do not phone or contact a friend change your GP.