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PSC Treatment

Questions for Your Doctor

Questions for Your Doctor

Tips for a Successful Doctor's Visit

Communicating with your doctor can help you feel more comfortable and build a good working relationship with your medical team. Most people's questions do not end after diagnosis. Please remember, there is no such thing as a silly question. The doctors will likely have an answer for you or may research the answer. 

  • Bring a Family Member or Friend: Many people find bringing someone with them to medical appointments helpful. Your family member or friend will be another set of ears when your doctor relays important information. Your medical buddy can also take notes, which are helpful to review after you get home.
  • Be Prepared: Write your questions down ahead of time. If you have many questions, try to write the most important ones at the top of the list. It may help your doctor if you ask them questions at the beginning of your visit. 
  • Take Your Time: Try not to be rushed during your visit. If time doesn't allow you to finish all of your questions, you may want to ask for an earlier appointment or request that the doctor get back to you by phone or email.
  • Keep an Updated List: Type or write a list of your medical conditions, dates of diagnosis, medications (dosage and frequency), and allergies. Make copies and keep this list in accessible places, including your purse or wallet and at home. Update the list when your medications change. This list is a priceless tool when visiting both your physician’s office and the hospital. It reduces the stress for everyone involved in your care.
Questions Newly Diagnosed PSC Patients May Have for Their Doctor(s)

After your doctor has discussed your PSC diagnosis, you will likely have questions, such as:

  • What are the treatment options for PSC?
  • How often should I see you?
  • Can I have my routine labs drawn before my appointments, so that we can discuss the results in person?
  • What stage is my PSC? Staging may help you better understand your PSC. For more information about the stages of PSC, visit the Diagnosing PSC page on this website.
  • At what point should I call regarding symptoms? What symptoms require going directly to the Emergency Department? 
  • How many PSC patients do you treat?
  • Do you see the need for me to get a second opinion for this rare disease at this time?
  • Is there a support group in my area? Check out this support information.
  • If I felt the need for psychological support, could you recommend a psychologist who has experience working with patients who have chronic illness?
  • Did you know that the ICD-10-CM code for PSC is K83.01? Make sure to check with your doctor that they are using this code for your medical diagnosis.
Diet/Nutrition

Dietary questions you may have might include:

  • If I end up with Inflammatory Bowel Disease (IBD) (either ulcerative colitis or Crohn’s disease), what will be some dietary concerns?
  • I have heard that people with liver disease should avoid foods high in fat, sugar, and salt.  What do you recommend?
  • Should I eat additional fiber, like fruits, vegetables, whole grain breads, or cereals?
  • Should I avoid/limit alcohol consumption?
  • Does drinking 7-8 glasses of water daily prevent dehydration and help my liver function better?
  • Can I have grapefruit or grapefruit juice with my medications?
  • Do I need to check my fat-soluble vitamins to see if I need Vitamin A, D, E, or K?
  • If I have cirrhosis (scarring and hardening of the liver), how much protein should I eat? Should I have a protein snack at night?
  • If I have ulcerative colitis, should I be taking folic acid supplements? If yes, what dosage?
Medications
  • Now that I've been diagnosed with PSC, should I continue taking my current medications?
  • If I have a headache, joint, or muscle pain, what over-the-counter medications would you recommend? What dosage should I take? 
  • If I experience itching (pruritus) from my liver disease, what can I do for relief?
  • Do you think Ursodiol should be used to manage my PSC?

Advanced Questions for Follow-Up Visits

Cancer
  • How often do PSC patients develop bile duct cancer (cholangiocarcinoma)? 
  • How often do you monitor for signs of cholangiocarcinoma, such as checking CA-19-9 through a blood test?
  • If bile duct cancer is suspected, do you do brush scrapings? Do you also do FISH (fluorescence in situ hybridization) testing? When do you consult with other subspecialists, such as transplant and oncology?

For more information, visit the Cholangiocarcinoma Foundation site.

Questions About Tests
  • Can I have a copy of my blood and diagnostic test results?
  • How often do you recommend an MRCP? 
  • When do you recommend an ERCP?
  • How often should I have an abdominal ultrasound? How did my gallbladder appear? Is there any evidence of ascites (accumulation of protein-containing fluid within the abdomen)?
  • How often should I get routine labs, such as an AST, ALT, Alkaline Phosphatase, INR/PT, Albumin, Total Bilirubin, and Direct Bilirubin? 
  • How frequently should I be checked for fat-soluble vitamin (Vitamins 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?
  • How often should CA 19-9 levels be drawn?
  • What vaccinations are required, since I have liver disease?
  • How often should I have a colonoscopy? Do you take multiple biopsies to look for inactive disease?
Transplant
  • At what point do you start talking to patients about transplant surgery?
  • What is my MELD score?
  • If I need a transplant, where do you recommend having the surgery?
  • Post-transplant, who will manage my IBD and other medications? 
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