Ask the Expert: Advice for the Recently Diagnosed
Hearing news of a hepatitis C diagnosis can be scary and overwhelming. Know you are not alone in worrying about your diagnosis. We asked our experts, Corinne and Barry, what advice do they have for the recently diagnosed, and here’s what they had to say below.
Some basic 101: Hepatitis C is a virus (HCV) that causes liver disease and inflammation of the liver. It can lead to cirrhosis (severe scarring on the liver) or even liver cancer. It is spread from blood to blood contact; otherwise, through blood contact with an HCV infected person’s blood. The liver is a vital organ, it removes harmful chemicals from your blood, fights infection, stores nutrients/vitamins and stores energy. Taking care of your liver is important. Seek medical care.
Being diagnosed with a chronic illness can generate a million different emotions, questions and concerns. Everyone’s experience is unique and it is important to seek support and medical care. First and foremost, I strongly believe that knowledge is power. Making sure that you start to understand your diagnosis, how it is transmitted, its symptoms and how it affects your body is important. Talking to your doctor and medical care team including: nurse, pharmacist, dietitian, social worker etc. is an important start; learn as much as you can from a variety of disciplines. Write down your questions and your doctor’s answers. Ask for copies of your lab results so that you know what labs are being drawn, and what the doctors are looking for. Bring a trustworthy relative or friend as a second set of ears. Do your own personal research, be cautious about what you find on the internet, but also recognize there are very valuable sites. Join a support group or talk to others who are living with the same diagnosis. No one needs to be completely alone in their journey; although each of our experiences is different, we are all fighting for a cause.
While learning that you are diagnosed with a chronic illness can be overwhelming and scary, hepatitis C is curable. Within the past few years, advancements in medications have proven to be safe, effective, and more tolerable then past options. Talk to your primary doctor about a referral to a Hepatitis C specialist, most often this includes gastroenterologists or hepatologists. And once again, remember you are not alone, nearly 3.5 million people are living with Hepatitis C, help and support is available.
DON’T freak out. Yes, hepatitis C is a serious illness requiring treatment medication, but panic only makes things worse. It will either freak everyone around you, or they might avoid you. When you freak out, those closest to you may start minimizing your situation, and you don’t want that.
DO remain calm. At least on the outside. People will treat you better. This requires nearly superhuman strength, but you can do it. Remember: There is a cure. If you have continuing problems with anxiety or depression, tell your doctor. Even a primary care doc can prescribe psych meds.
DON’T refuse psych meds if your doctor suggests them.
DO attend to your mental health. Trying to slog through it all with depression or anxiety doesn’t make you a hero. Nobody loves a martyr. Taking responsibility for your own mental health is crucial. Remember: Hepatitis C is known to cause personality changes.
DON’T try to go it alone.
DO seek out support, whether online, or in a group. Hearing other people’s accounts of dealing with hep C will help you cope.
DON’T ignore fatigue.
DO lie down and take a nap when you’ve had enough. Save your energies for your main responsibilities. Ask for help with your daily chores when you need it.
DON’T put too much on your spouse/partner/family. They have no idea what you’re going through.
They’re not trained in medicine or psychology.
DO take it easy on those closest to you. Your illness is not likely their fault. Usually, your family will give you emotional support. Be content with that. Also, it’s good to take a friend or family member along with you to your doctor appointments.
DON’T give up on getting the cure. Although Harvoni was developed for genotype-1, this drug has shown promise cross-genotype in the lab.
DO fight treatment denials. Sovaldi cures belong to the world. You have a right to treatment. Hepatitis C is best cured in early stages of disease. You may avoid illnesses secondary to HCV if you treat early enough.
DON’T despair if you are denied treatment.
DO keep at it. Check out our resources page. I highly recommend Help4Hep.com. In my opinion, they offer the most comprehensive care of any support organization. They will “hold your hand” throughout your battle with hep C. Their counselors are trained experts. Their services are free of charge. They do it all. They’ll help you get tested. They’ll help you find a doctor. They’ll help you with insurance denials, as much as they can. Whatever you need, you’ll find it here.
DON’T take Harvoni while standing over the sink, or outdoors. These pills cost $1,000 apiece, retail, so you can’t exactly count on your insurance to replace lost pills.
DO imagine you’re driving down the road and $1,000 flies out of your pocket and out the window. Same idea with your hep C meds. They’re more valuable than gold. It’s important for you to take all of your medicine as prescribed, as close to the same time every day as possible.
DON’T drink grapefruit juice or take St. John’s wort. They interfere with the metabolism of many drugs.
DO eat a normal healthy diet. There is no special diet for hepatitis C. Hot fudge doesn’t interfere with anything.
DON’T get down on yourself.
DO be good to yourself. Eat well, laugh whenever possible, take plenty of naps.
DON’T drink any alcohol, ever. Alcohol is a killer.
DO avoid alcohol, completely. Alcohol is a killer.
What advice do you have for the recently diagnosed? Share with us in the comments below.