When diagnosed with PSC or if you are meeting with a new doctor, you may want to talk with a family member or close friend, and outline questions to ask your doctor. Having someone to brainstorm with helps ensure that you don’t miss an important question. 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. 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. You will likely have many different questions throughout the course of PSC.
TIPS FOR A SUCCESSFUL DOCTOR’S VISIT
- Bring a Family Member or Friend: Many people find it helpful to bring someone with them to medical appointments. Your family member or friend will be another set of ears when your doctor is relaying 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 give them your questions at the beginning of your visit.
- Take Your Time: Try not to be rushed during your visit. If time doesn't allow for finishing all of your questions, you may want to ask for an earlier appointment, or if the doctor can 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, as well as 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.
- Review the Legal Issues and Self-Advocacy page on this site.
QUESTIONS TO ASK DOCTOR’S OF NEWLY-DIAGNOSED PSC PATIENTS
WORKING WITH YOUR PHYSICIAN
After the doctor has discussed your PSC diagnosis or at future visits, 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 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 have?
- At this time, do you see the need for me to get a second opinion for this rare disease?
- Is there a support group in my area? Check out this list of local and online support groups.
- If I felt the need for psychological support, can 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? Share a printable postcard with your medical team.
You may want to ask your doctor questions, such as:
- 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 and vegetables, and whole grain breads or cereals?
- Should I avoid/limit alcohol consumption?
- Does drinking 7-8 glasses of water a day prevent dehydration and help my liver function better?
- Can I have grapefruit or grapefruit juice with my medications?
- Do I need to have my fat-soluble vitamins checked 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?
RECOMMENDATIONS ON TESTS
- I know that, in the majority of PSC patients, Inflammatory Bowel Disease (IBD, either ulcerative colitis or Crohn’s disease) is detected.
- How often should I have a colonoscopy? Do you take multiple biopsies to look for inactive disease?
- If I have ulcerative colitis, should I be taking folic acid supplements? If yes, what dosage?
- Are any of my current medications a problem?
- If I have a headache, joint, or muscle pain, what over-the-counter medications would you recommend? What dosage should I take? What medications should I avoid?
- If I experience itching (pruritis) from my liver disease, what can I do for relief? Are there any medicines I should avoid?
- Do you think Ursodiol should be used in the management of my PSC?
SOME ADVANCED QUESTIONS FOR FOLLOW-UP VISITS
- 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.
RECOMMENDATIONS ON TESTS
- Can I have a copy of my blood and diagnostic test results?
- How often do you recommend an MRCP?
- When do 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 a AST, ALT, Alkaline Phosphatase, INR/PT, Albumin, Total Bilirubin, and Direct Bilirubin?
- How frequently should I be checked for fat-soluble vitamins (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?
Review the PSC Partners’ page on Diagnosing PSC.
- At what point do you start talking to patients about transplant surgery?
- What is my MELD score? See more about MELD scores.
- If I need a transplant, where do you recommend having the surgery?
- Post-transplant, who will manage my IBD and other medications?
Share the Living with PSC brochure and other brochures with those in your support and medical team.
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