Stand by Me with Hepatitis C and Liver Disease

You are going to need a lot of folks to support you with the Hepatitis C Virus. Think of them as your People who Stand by Me with Hepatitis C and Liver Disease team.   It will include family, friends, medical, and social media friends from the internet forums and groups. I got your back, but you are gonna need a whole tribe.  

Who will stand by me with Hepatitis C and Liver Disease?

Your family are the ones that were there long before you knew about the silent liver killer. They are connected to you for life. Some of those relationships may have been tested as you struggled with mental, physical and emotional difficulties. Also, coping with an illness may have brought out the worst in you. Anyway, for better or worse, they are your family. They may become your caregiver even while you deal with the harsh symptoms and side effects. Reach out and ask for the support that you need.

Talk with family members about the decisions you are making. Ask for their help when you need it. Protect those relationships by remembering that they have to deal with grieving the loss that they feel regarding your role in their lives. They may not always have answers, but you can ask them to research for you. Guide them to pages (like this one) for information about what you are going through.

Medical Backup or MASH

My doctor and staff were vital members of the team I chose to stand by me with Hepatitis C and liver disease. At first, they ran tests and scans,  and also knew the current treatment options and decide which type is best. Next, they monitored me after treatment. Finally, they become teachers and coaches. You have a lot to learn about lab values, viral loads, stages of cirrhosis, and nutrition. Find a doctor that you can place your trust in.

Hospital and Laboratory staff are members of your team. I had the same phlebotomist for a long time. I trusted her to get a good vein, even when they were collapsing. When my platelets and hemoglobin were low, she had to stick me a couple of times a week. She was my personal cheerleader.

The point is this: Everyone in your life is there to help you. The Magnetic Resonance Image (MRI) tech, the emergency room staff, the anesthesiologist, specialty pharmacy, nurses, nutritionist, insurance office staff, and the housekeeping staff all support to you. Most consider it a calling. There is a lot of compassion, education, and valuable support from these members of your allied health team. 

Insiders and Outsiders

Your Internet Family will become closer than you thought was possible. First of all, these peeps will cheer you on AND listen to your ramblings. In fact, they often end up telling you when to chill out, and when to get off the couch. Similarly, they offer a million ways to help with symptoms like varices or ascites. Some of those may be a little kooky, so talk to your doctor. Some of my favorite online resources are listed here.  Find chat rooms and forums and stick with them. They have been where you are in some form. Remember, they have their good and bad days too. Be there for them.

The things I discussed with a friend might not be relevant to my doctor or my internet friends. For example, the details I told to my family were sometimes revealed to the nurse, sometimes not. Choose the people on your team to share specific things with. If they cannot help you, maybe they will point you in the right direction.

At one time, I had literally dozens of people that touched my life weekly, if not daily. They were part of my inner circle of allies. Some of these overlapped, some did not. I learned that they would all stand by me with Hepatitis C and liver disease.

I am a member of YOUR Hepatitis C Support Allied Health Team. For sure, I don’t know everything, but I have connections with people like you. In fact, you all have helped save my life, and are also valuable members of my support group. Furthermore, you are the people I count on to stand by me with Hepatitis C and liver disease. Even now after the transplant and cancer mess, we’re still together. I love you with all my heart. XO Karen