Questions for your Doctor
Upon diagnosis, it is important to sit down with a family member or close friend and outline questions to ask your physician. Having someone with whom to brainstorm helps ensure that you don’t miss something pertinent. As the saying goes, there is no such thing as a dumb question. Go ahead…Ask. It’s likely someone else has already asked that question, and the doctors have an answer for you or will research the answer. When you are open and communicate, you will feel better and develop a good working relationship with the medical team. Due to the degree of variance in progress and stages, your questions and concerns will change throughout the course of PSC.
TIPS FOR A SUCCESSFUL DOCTOR’S VISIT
- Bring a Friend: It’s a good idea to bring someone with you to medical appointments. This advocate can ask questions and be another set of ears when your doctor is relaying vital information. Your medical buddy also can take notes. Your advocate(s) becomes and stays educated about your prognosis and the progression of your PSC.
- Be Prepared: Write your questions down ahead of time.
- Take Your Time: Don’t be rushed during your visit. You need the information to maintain your health.
- Keep an Updated List: Prepare a list of your conditions, dates of diagnosis, medications (dosage and frequency), and allergies. Make copies and keep this list in accessible places, including purse and wallet, as well as at home. 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 these Legal Issues and Self-Advocacy
QUESTIONS TO ASK DOCTOR’S OF NEWLY-DIAGNOSED PSC PATIENTS
WORKING WITH YOUR PHYSICIAN
- How many cases of PSC have you managed?
- What do you think about getting a second opinion?
- What is the treatment strategy?
- How often should I follow up for an office visit?
- At what point would you want me to call regarding symptoms, and for which symptoms would you want me to go straight to the ER?
- Can I have my routine labs drawn before my appointments, so that we may discuss the results in person?
- What stage is my PSC? Staging may be helpful to know, allowing your physician to have a baseline for comparison with possible future biopsies. Staging also may be used to help determine the length of time until transplant. Check out the list of stages of PSC.
- Is there a support group in my area? Check out this list of local and online support groups.
- Can you recommend a health psychologist who has experience in working with patients and their families?
- Did you know that the ICD-10-CM code for PSC is K83.01? Share a printable postcard with your medical team.
- Are grapefruit and juice ok to take with my medications?
- Are fish oils an acceptable supplement? If yes, what dosage would you recommend?
- Is it ok to consume alcohol-containing products?
- Should I make any changes to my diet?
RECOMMENDATIONS ON TESTS
- I know that, in the majority of PSC patients, IBD (ulcerative colitis or Crohn’s disease) is detected. How often should I have a colonoscopy?
- How many biopsies will you take to look for quiescent disease?
- If I have ulcerative colitis (UC), should I be taking folic acid supplements along with Ursodiol? If yes, what dosage?
- Should Ursodiol play a role in the management of my PSC? If yes, what dosage?
- 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?
- If I experience itching (pruritis) from my liver disease, what can I do to gain relief? What about phototherapy with tanning beds for my itching (pruritis)?
SOME ADVANCED QUESTIONS FOR FOLLOW-UP VISITS
- On average, when does bile duct cancer (cholangiocarcinoma: the Klatskin tumor) arise after PSC is diagnosed?
- 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?
- Are there other ways in which you are monitoring for signs of cholangiocarcinoma, such as checking CA-19-9 and/or an Alpha-Fetoprotein through a blood test?
- What is my MELD score?
- If I need a transplant, where do you usually recommend having the surgery?
- Post-transplant, should I be put back on Ursodiol to help reduce the chances of colon cancer?
- Post-transplant, will you start me back on my IBD maintenance medication?
RECOMMENDATIONS ON TESTS
- Can I have a copy of my blood and diagnostic test results?
- How often do you recommend an ERCP or MRCP? (There are risks involved with an ERCP, so it is best to seek out an endoscopist with a good reputation amongst his/her clients, if possible.)
- How often should I have an abdominal ultrasound? How did my gallbladder appear?
- Is there any evidence of ascites? Any suspicious 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?
- 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?
Review the PSC Partners’ page on Diagnosing PSC.
Share the Living with PSC brochure and other brochures with those in your support and medical team.