Re: Re: Intro and questions ...cpl more questions.

[Guest guest]

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Hi! I've been in the hospital for a bit and I'm sorry it took me a while to get

back to you. It sounds like the doctors aren't sure about Nick's PSC diagnosis.

Is that right or did they definitively diagnose PSC at this point?

Don't beat yourself up for not knowing the " right " or " specific enough "

questions to ask. All of this is hugely overwhelming at the beginning (and

sometimes after) and I can't even imagine how much more so when it's regarding

someone you love as much as your child! We all get a little brain-scattered in

the face of the docs, so let yourself off the hook a bit and just be doubly

prepared next time!

One of our members (Ross Heil) has compiled a list of questions to ask doctors.

They'll need to be modified a bit, but I figure at the very least they could

give you a starting point. Here's the list:

PSC Questions for New Patients

Should Ursodiol play a role in my management of PSC? If yes, what dosage?

Should I consume alcohol containing products?

If I experience itching from my liver disease, also known as pruritis, what can

I do to gain relief?

Is grapefruit juice ok to try?

Phototherapy with tanning beds?

Is it safe to smoke Marijuana with known liver disease such as PSC?

Are fish oils an acceptable supplement? If yes, what dosage would you

recommend?

How often should I follow up for an office visit?

How many cases of PSC have you managed in the past and currently?

What do you think about getting a second opinion?

At what point would you want me to call regarding symptoms, and for

which symptoms would you want me to go straight to an ER?

Can I have my routine labs drawn before my appointments so that we

may discuss the results in person?

Are any of my current medications problematic?

If I have a headache or musculoskeletal pain what over the counter medications

would you recommend? What should I avoid?

PSC Questions for follow up visits

Upon average, when does bile duct cancer (cholangiocarcinoma , aka the Klatskin

tumor) arise from the time diagnosed with PSC?

Does Ursodiol decrease the incidence of cholangiocarcinoma? What about

decreasing the chance of colon cancer?

If bile duct cancer is suspected and brush scrapings are done, will you send the

sample to Rochester Mayo for FISH staining?

How often do you recommend an ERCP or MRCP?

How often should I have a colonoscopy?

How often should I have an abdominal ultrasound? How did my gallbladder appear?

Any evidence of ascities? Any specious lesions?

How often should a CA 19-9 level be drawn?

How often should my INR/PT, Albumin, AST, ALT, Alkaline Phosphatase, Total

Bilirubin, and Direct Bilirubin be drawn?

What is my MELD score?

Can I have a copy of my blood and diagnostic test results?

How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D)

levels?

Should I take Fat Soluble vitamin supplements? If yes, what dosages?

How often should a bone density test be done?

What vaccinations are required since I have liver disease?

I hope these help!

Sandi in VA/Rochester