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Warning-sign checks

Autosomal dominant polycystic kidney disease: when to get help

Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.

  1. 1

    Is any of this happening now?

    Call 911

    Seek emergency care for a sudden “worst-ever” headache, fainting, seizure, new weakness or numbness, confusion, trouble speaking, severe chest pain, or severe difficulty breathing.

    Other emergency signs, for anyone
    • Someone who is struggling to breathe, gasping, choking, or cannot get words out
    • Someone who has chest pain, tightness or pressure lasting more than a few minutes
    • Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
    • Someone who is unconscious, or cannot be woken
    • Someone who is bleeding heavily and it will not stop with firm pressure
    • Someone who has had a seizure that will not stop, or does not wake up afterwards
    • Someone who has lips or skin that look pale, blue, grey or blotchy
    • Someone who you believe has taken an overdose or swallowed something poisonous
  2. 2

    Is any of this happening?

    Be seen today

    Contact a clinician promptly for fever with side or back pain, painful urination, persistent visible blood in the urine, blood clots in the urine, sudden severe flank pain, repeated vomiting, or a major decrease in urine output.

    These symptoms may reflect infection, bleeding, a stone, or urinary blockage.

  3. 3

    Does any of this apply?

    Book an appointment

    Routine follow-up may involve a primary care clinician, nephrologist, or both.

    A nephrologist is a doctor who specializes in kidney disease.

    The timing of visits depends on blood pressure, symptoms, kidney function, progression risk, and treatment.

    These are not routine follow-up concerns.

The article also says

Monitoring may include:

Blood pressure checks

Creatinine, eGFR, electrolytes, and urine testing

Review of pain, infections, stones, and blood in the urine

Review of medicines, supplements, and possible kidney side effects

Imaging when it is likely to change risk assessment or treatment

Counseling about pregnancy, family testing, or genetic testing when relevant

Every sign above is quoted from the sofidex article on Autosomal dominant polycystic kidney disease. If you are not sure, err upward — it is always reasonable to be checked.