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Living with ADPKD

Appointment Tips

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These tips are to help you get the most out of your appointments with your GP, kidney specialist and other healthcare professionals. They are written for adults with autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD) and their families.

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ADPKD and Pregnancy

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This information is about pregnancy in women with autosomal dominant polycystic kidney disease (ADPKD). It is intended as a general guide for women and their partners about planning for pregnancy, what to expect during pregnancy, and what to do if you are already pregnant. We will briefly cover fertility issues for men with ADPKD too.

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Diet and Lifestyle

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No specific diet or lifestyle measures have been shown to prevent cysts developing in people with ADPKD. However, a healthy lifestyle may help to protect your kidney function and reduce your blood pressure and risk of cardiovascular problems, such as stroke. Keeping your blood pressure down is especially important, as high blood pressure can damage your kidneys if you have ADPKD.

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Coping

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Living with chronic kidney disease can be overwhelming, but life can seem especially challenging if you have ADPKD. You may well have seen how the disease has affected your relatives and worry that your own kidney function may slowly get worse or about your children’s future.

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Medicines to Avoid

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Many medicines are wholly or in part removed from the body by the kidneys. So it makes sense for everyone with ADPKD to avoid any medicines that could harm the kidneys or make other treatments less effective. This applies not only to medicines prescribed by a doctor or in hospital, but also to remedies you buy over the counter from the pharmacist or supermarket. 

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PKD Charity UK PKD Charity UK

PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit The Information Standard website
  • Visit PKD International website
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  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • National Voices Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website