No matter where you are with your hepatitis B – chronically infected since birth, or recently learned you are HBV positive, you want to be sure you are surrounded by all of the right people to give you the medical guidance and emotional support you need.
Start with your primary care physician (PCP). You want a doctor that listens to you and is willing to work with your liver specialist. Your PCP’s office may be coordinating your annual or bi-annual lab work for HBV monitoring and is your first line of care .
HBV can be complicated when it comes to making decisions about whether or not you need monitoring, treatment, or monitoring for liver cancer (HCC). There are many phases of HBV, and you want to be sure you are followed through ALL phases. You need a liver specialist that has experience working with patients infected with HBV. This doctor is nearly always a Gastroenterologist (GI doc) or a Hepatologist. If the patient is a child, you need a pediatric GI doctor or hepatologist. Although well qualified, an infectious disease doctor is not really the best fit because of the involvement of the liver. Once again, experience with HBV infected patients is crucial. These specialists are often found at large, or University Hospital centers.
Check out this directory of liver specialists in your area. Keep in mind that living a couple of hours from your liver specialist should be fine. Visits are typically annual or bi-annual. Visits may increase depending on treatment you may require. Lab work can usually be coordinated with your local lab via your PCP.
Get to know your local pharmacist. They are a wonderful source of information on everything from prescribed HBV medications to choosing the best OTC cold medicines, or pain relievers. I am on a first name basis with my pharmacist, and try to visit when the volume of customers is low, so no one feels rushed.
Living with a chronic illness can take its toll on your mental health. Each patient is unique, but generally all patients cycle through initial fear or denial, isolation, worry, and acceptance. If you feel you are depressed and need help coping with your HBV, seek advice from your PCP, liver specialist, or a mental health expert.
Consider joining a support group. Sometimes it’s lonely dealing with a complicated, chronic illness like HBV. Support groups are a great forum for addressing the many concerns when dealing with various aspects of your HBV, from the best treatment protocols to sex and dating. I belong to two HBV support groups and I find the interactions extremely informative, and the list members caring and very supportive of members in all stages of their HBV.
Take a look at The Hepatitis B Foundation’s website. There’s a multitude of information from simple HBV basics to in-depth information from world-renowned liver specialists and researchers, along with personal stories. Ask away if you have any questions. HBF is here to help, and we hope to be part of your team.