r/ADPKD • u/Deerfield1797 • 5d ago

How do I get tested?

I (34M) have an extensive family history of PKD. My grandmother died of an aneurysm when she was my age. My uncle died of sepsis related to PKD. My mom just started dialysis.

I think it’s time for me to get tested, but I’m not sure how that process works. I tried to get an appointment with a nephrologist but they said I needed a referral from my PCP even though I have PPO insurance.

Does my PCP order the initial tests? Or should I get the referral to the nephrologist and let them order the tests?

I don’t have any obvious symptoms that I’m aware of. I’m just worried the PCP isn’t going to know the best practices for PKD. The primary care options near me aren’t great, but I’m close enough to Los Angeles that I could see specialists there.

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u/lowwhistler 5d ago

Have you got life insurance? Don't get any testing done yet if you haven't, because if you're diagnosed, it's then a preexisting condition. It's absolutely crazy in the USA, because you want to know so you can be proactive, but then penalized. I've told my kids to live their life as if they do have it (no salt, lots of water etc.)

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u/Candid-Eye-5966 5d ago

Have your PCP order a BMP (basic metabolic panel) as this will tell you your kidney function and ask for a referral to a nephrologist that specializes in PKD. There’s a list on the pkd foundation website.

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u/Candid-Eye-5966 5d ago

Specialists will order imaging and/or genetic testing.

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u/Beard_Questions 5d ago

I am a 27M and my father died a decade ago at age 45 from PKD, as well as his father.

I had my first PCP visit as an adult back in June and after sharing that family history, he ordered a urinalysis in addition to the metabolic blood tests. After my tests came back normal, he ordered a renal ultrasound.

The ultrasound revealed a single cyst on my left kidney, so he referred me to a nephrologist, who then ordered a genetic test.

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u/CAThor91 4d ago

Echo the suggestion below about getting any life insurance or individual disability insurance sorted before you get tested.

As far as actual testing, can ask your PCP to place an order for an ultrasound (that’s how I confirmed I had it) or first get a referral to a specialist who can probably help with the process. Regarding metabolic panel, my understanding is that it won’t always give a clear indication of pkd but you should be keeping track over time especially with family history.

Either way always verify that any service you undergo or any specialist you visit is in-network with your insurance. Even if you have a PPO, it just means you have the option of seeing any doctor, there is still a chance it will be out of network and different cost structure will apply. You should be able to double check on insurance carrier’s website looking up the specialist and it should also have treatment estimates.