ADVICE FROM PSC PATIENTS TO THE NEWLY DIAGNOSED
KEEP IT IN PERSPECTIVE
- Remember, there are people who have had PSC for decades and are still doing well.
- PSC doesn’t mean that you will only have a short time to live. Your diagnosis doesn’t mean that you will immediately develop severe symptoms.
- Some people are diagnosed with PSC and have no symptoms. Others may be symptomatic at the time of diagnosis and then improve. Everyone's journey with PSC is different.
"Be assertive and ask questions."
- Don’t be afraid to request clarification about your concerns.
- Many PSCers have a caregiver or friend who goes with them to appointments and, if needed, the hospital. That person is a second set of eyes, ears, and an extra voice for asking questions. When your head is spinning, your advocate can take the lead.
- PSC is a rare disease, and you may find some doctors or other healthcare staff who may be unfamiliar with PSC. Keep yourself informed and, when needed, inform those around you about PSC. Each of us can play an important role by increasing PSC awareness with medical providers, family and friends.
- Hand out PSC pamphlets to your doctors, and talk to your doctor about new treatments or alternative therapies you want to try.
FIND A GOOD DOCTOR
“Find a doctor who is familiar with PSC.”
- Some people see a hepatologist or a gastroenterologist, and some see both. Find a doctor who is familiar with PSC. If that’s not possible, be prepared to update your doctor about current PSC resources. Some people find it helpful to get a second opinion.
- Support groups and other PSCers can be invaluable in this regard. Symptoms get shared, medications and new research are discussed, and questions can be answered. Again, it's important to talk with your doctor if you want to change your current treatment or try a new medicine.
- Click this link for help in finding a physician.
DON’T ISOLATE YOURSELF. FIND OTHERS LIKE YOU!
“Bond through a great support system.”
- For many, the diagnosis can bring a feeling of isolation. Yes, PSC is a rare disease which can make it difficult to meet other PSCers, but that’s all the more reason for us to bond through a great support system.
- Don’t be afraid to tell people about your disease. Some of us are comfortable sharing that information, while some of us share it only with family and close friends. It’s a personal judgment call.
- Find others online at PSC Partners' Facebook group, and join others at a PSC conference.
- Become a mentor for someone in your peer group, or request a mentor. Whether you're a PSC patient, parent, spouse, caregiver, or another member of the PSC community, the PSC Partners mentor program can be a great source of support and information. Get more information on the Mentor Page of our website.
- Participate in our ZoomRooms. These virtual, peer-to-peer gatherings are a great way to speak with others who truly understand. Get more information on the EVENTS page of our website.
- Find more support and useful information about current research, clinical trials, past conference presentations, and more.
“If something doesn’t feel right, do not feel silly asking about it.”
- Some days your PSC symptoms will be aggravating and even seem intolerable. It is important to track your symptoms to help your doctors help you.
- Get a notebook and keep it regularly updated. Include the following information: insurance information, name of disease(s), medication lists, doctors’ contact information, emergency contact, advance healthcare directive, laboratory and test results, procedure notes, surgical reports, etc.
- Also include a PSC brochure which you can download and provide to your caregiver and your medical team. Check out the brochures: Living with PSC, Pediatric PSC, and PSC Partners Patient Registry.
“Keep an updated medication card with you at all times.”
- If possible, use one pharmacy, preferably one with branches that share information in more than one state. That way, when any new medicines are prescribed, the pharmacist can check for conflicts.
- Don’t leave refills to the last minute. Some medications for PSCers are not overly common (Urso for one), and may need to be ordered by your local pharmacy. It may take two to three days to receive the medicine.
- Keep an updated medication list or card with you at all times. Type up your medications and dosages, put your insurance information, doctors’ phone numbers, allergies, emergency contacts, and any major medical conditions (like the fact that you have PSC) on the medication card.
MAINTAIN GOOD NUTRITION AND EXERCISE REGULARLY
- Eat healthy foods. Avoiding saturated fat and refined sugar are often recommended. Try to maintain a healthy weight.
- Discuss dietary needs with your doctor, especially if you also have ulcerative colitis or Crohn's disease. If someone has advancing liver disease, it is important for them to ask if they need to eat more protein to help maintain muscle mass and if they should limit salt (sodium).
- Make sure you’re getting enough fat-soluble vitamins, such as vitamins A, D, E, and K.
- Drink adequate amounts of water, as dehydration can cause bile to thicken or flow more slowly.
- Avoid alcohol or anything else that can stress your liver and has no proven benefit. Tell your doctor about any herbs or supplements you are taking, since some can be harmful to your liver.
- Take your medications!
- Exercise is critical. Even if you can only walk ten to twenty minutes a day, do your best to make time to exercise.
- Read about PSC and nutrition here.
- Click here for our Living with PSC Podcast about Nutrition.
MANAGE FINANCES AND INSURANCE
“Keep the best insurance you can.”
- If you have insurance, do whatever you can to keep it. It’s important for anyone with a chronic disease to maintain insurance.
- If you don’t have insurance, look into options: Medicare, private companies, etc. Ask your doctor for a referral to a social worker or financial counselor to help you find insurance coverage. Be vigilant and protect yourself.
- PSCers can find themselves in need of some assistance as they become too physically tired or too mentally exhausted to work. You can apply for Social Security Disability Insurance (SSDI), or Supplemental Security Income (SSI.) Check out what your state offers and read through what your personal disability insurance covers. PSC is a recognized disease for SSDI.
- Keep the best insurance you can. Plan for not only regular expenses, but also for medications, doctor visits, and co-pays for both clinic visits and hospitalizations, etc.
PREPARE FOR A TRANSPLANT
- Some PSCers may need a transplant, but you probably won’t need it tomorrow or anytime soon, so you have time to prepare.
- Utilize good nutrition and consistent exercise to keep yourself in good physical condition.
- Find out about the stages of liver disease. Learn about MELDs and FISH. Don’t be shy; plug yourself in! Click here for the glossary of medical terms.
- Click here to learn more about transplants.
JOIN THE PSC REGISTRY
- Help researchers worldwide unlock the mysteries of primary sclerosing cholangitis (PSC) by completing your profile and joining the PSC Partners Registry. Your participation is important to advance research for PSC treatments and a cure! Click the Patient Registry link below to find out more about the registry, and to add your name and information to the registry.
Registry Staff are available to help you join the PSC Partners Registry.
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.