Aftercare: Treatment Completion and Cured of Hep C

By Daryl Luster

2 min read

If you are one of the people like me who are now cured of hep C, there may be a need to have continued care. There can however, be long-lasting effects of living with hep C more than the obvious liver damage that some people experience.

The more advanced scarring of the liver (fibrosis) which results in cirrhosis is the most widely known effect that people with liver disease can be left with, even with a cure of the virus. Regular monitoring is still required and if you have been diagnosed with cirrhosis, your care team will talk to you about it.

This might include blood draws and/or scans at prescribed intervals. The type of scan you might need will be determined by your team.

As you may have read or heard about, the hep C virus (HCV) is not limited to its effect on the liver.

Cured but still having hep C issues

It is not uncommon in my work to hear a person share with me that despite being cured of hep C, they are still dealing with any number of issues. Some being quite challenging. Some are diagnosed while others are yet to have a diagnosis, and that can be for several reasons.

One thing I have seen is that a care team for hep C may not understand well or know of all the different health conditions caused by hep C that can have a lasting impact on your health and wellness. This is not unique to hep C and is not dissimilar to what many have described after having Covid and have identified themselves as ‘long haulers’ or having ’long Covid’.

Again, this refers to the lasting damage or effects of a virus. A holistic approach to health describes the best way to look at aftercare with hep C, in my opinion.

What treatment do I need for my hep C?

When to see your doctor for ongoing issues

Like what that old skeleton song says about how the hip bone is connected to the thighbone, and the thighbone is connected to the leg bone… you get the idea. An infectious disease like hep C and others can leave us with legacy health issues that may compromise our overall health.

If you are experiencing different symptoms that can include pain, fatigue, persistent brain fog, or any other different or worsening feeling of ill-health, it is important to follow up with your doctor, or the clinic where you received treatment for hep C.

If they are not able to provide the care that you need, they should be able to steer you in the direction of an appropriate specialist as needed. Do not be alarmed if you need to revisit your doctor.

Most people will see these things resolve in time and may never experience anything that requires extra care beyond the regular follow-up to assure that treatment has been successful, and you have reached SVR/Cure at 12 weeks after the end of treatment.

I think comorbid (other) health issues that have been diagnosed already, affect how much regular monitoring should occur. Aftercare is an important part of the hep C cascade of care, as much as any other step towards a hep C-free life and better long-term health and wellness.

That is what we all want, and what we all deserve.

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Leslie Anne Castro Member
I definitely agree that after care post hepatitis C treatment is important because there may be side effects that arise. I’m two years post hepatitis C treatment and I still maintain continuous care with a hepatologist/gastroenterologist quarterly because I still have liver disease that needs to be monitored more often than not for liver failure due to a correlation with my former congenital heart disease. Leslie (Community Moderator)
1. Daryl Luster Member
 <inline-mention username="Leslie Anne Castro" user-id="3505035"/> Do you have cirrhosis? In general that is the extent of care given post-treatment/cure. Of course there can be other liver-related issues like I experienced with lesions appearing years ago that needed regular/yearly monitoring to look for changes in size etc. After 10 years of monitoring my hep Dr suggested there was no need to monitor, as they are not. uncommon for older folks like myself. I think I may ask that the monitoring be done every two or three years. The congenital condition is something you have lived with your entire life I assume, but don’t now?and any co-morbid condition presents greater challenges for you as you know. Quarterly monitoring sounds great for you, given the additional challenge, and I hope that things are going well. Is a Cardiologist part of the care team?
2. Leslie Anne Castro Member
 <inline-mention username="Daryl Luster" user-id="3496179"/> I actually have Stage 2 liver fibrosis. My liver disease was in correlation to an experimental open heart surgery I had as a child. The liver disease, otherwise known as, FALD, or Fontan Associated Liver Disease was a so to speak side effect from the Fontan surgery I had in 1985. Little information was known about this liver disease because most children who had the Fontan surgery didn’t live into adulthood. I’m the oldest living survivor of my congenital heart disease, which is generally known as being a single ventricle patient, in the Pittsburgh area. Yes, I actually no longer have congenital heart disease. I’ve basically been in many case studies due to the complexity of my former congenital heart disease and even now, because I willingly accepted a Hep C organ. I’ve seen a pediatric cardiologist until I was 25, which I was basically grandfathered into the pediatric cardiology department because they didn’t have a branch into adult congenital cardiologist at the time. Not only that adult cardiologists didn’t have the knowledge or expertise in the single ventricle anatomy. In the mid to late 90’s, the pediatric cardiology department was subdivided if upcoming medical students wanted the best of both worlds so to speak in that the student could be a pediatric cardiologist and take a few more classes to be an adult congenital cardiologist. By the age of 30, I started seeing an adult congenital cardiologist until I had to go through transplant evaluations for a dual transplant-heart and liver. Luckily I didn’t need a liver, but I was informed that I would need to see a transplant cardiologist, neurologist, hepatologist/gastroenterologist, nephrologist, and endocrinologist f or the rest of my life. Some of them I see biannual, the rest I see quarterly unless something arises where I need more care. Leslie (Community Moderator)