for Veterans and the Public
Success Stories: Single Page - Hepatitis C for Patients
Sue, Navy Veteran
Maurice, Army Veteran
Knute, Army Veteran
In 2003, I received a letter from the VA urging me to get tested for hepatitis C virus (HCV). I was an Army combat medic and a Vietnam War Veteran, which put me at increased risk. I went in for the test and I was positive. When I found out, I was shocked and it was like a black cloud over me for many years after that. I spoke with my doctor regarding HCV treatment options available at the time. We discussed an interferon-based regimen, but I ultimately decided to forgo treatment as it could have had a very negative reaction with the medication I was taking for my PTSD. But I also knew that without treatment, my HCV could worsen and eventually cause liver damage.
New Treatments and a Cure
In the fall of 2015, my VA doctor called to tell me about a newly approved drug that could offer a chance for a cure with fewer side effects. I met with the pharmacist and my doctor, who told me what to expect. I immediately began treatment with a 12-week regimen of the medication. I did have some side effects - my appetite and sleep were affected, I lost some weight and had some headaches. After about 3 weeks, they did some testing and said my counts were going down. So, after that, I didn't pay attention to the side effects because I knew the treatment was working. I had support from my wife and my friends too.
After I finished treatment, I was told I was free of the disease and it made me break down with tremendous joy and relief. I keep reliving that moment every day that I'm cured.
My Advice for Veterans with Hepatitis C
If you value life, if you value your wife, family, and grandkids, then you need to try this program. It will extend your life and you'll have more time with your family, which is the most important thing. Never give up hope.
Leslie, Air Force Veteran
I have three grown children and three grandchildren. I am a graduate of the UCLA School of Law, and I retired in 2003 after a career that included working as a consultant for the California State legislature, and the County of Los Angeles. I am currently active in my community serving on the Citizen's Oversight Committee for the school board, and as an ambassador for Donate Life California and the United Network for Organ Sharing, advocating for organ, eye, and tissue donation.
I first became aware that I had hepatitis C in 2000, while volunteering to donate blood at a job blood drive. Before then I had no idea I had the virus. They refused to use my blood and referred me to my doctor to find out why. The doctor at the VA did a blood test and advised me that I had hepatitis C. At the time I was experiencing no symptoms and continued to work until 2003 when I began to experience the first symptoms. At first it was just tremors in my hands and joint pain, but the condition progressed steadily thereafter. Soon, due to cirrhosis, I was experiencing swelling in my legs, feet, and abdomen, and then as the toxins built up in my blood stream (hepatic encephalopathy) I began to experience confusion, loss of memory, and a kind of pain that I have never been able to describe. By 2004, I had reached end-stage liver disease. At that point Dr. Morgan, my VA doctor, initiated an evaluation and subsequently recommended that I be placed on the waiting list for a liver transplant. I was on the waiting list for 4 years and 9 months, and during that time, Dr. Morgan advised me that there was a possible treatment for my hepatitis C, which at the time was pegylated interferon injections, but he advised me that the success rate for my genotype (1) was only about 50 percent and the side effects were significant. Considering my physical condition at the time, I decided it was not in my best interest to take the treatment. In April of 2008 I received a life-saving liver transplant at the Portland, Oregon, VA Medical Center. I was fortunate to have the opportunity to meet my organ donor's family and thank them personally for the gift they gave.
To demonstrate the benefits of organ transplantation, and in order to help increase awareness about the need for organ donation, I have participated in the 2014 and the 2016 Transplant Games of America along with recipients and donor families from across the country. I've competed in the 20K cycling event, the 5K run/walk (bronze medal), and basketball (silver medal).
Although I experienced no ill effects after my transplant, i.e., no signs of organ rejection, in 2015, Dr. Morgan explained that the hepatitis C virus still existed in my system and could begin to destroy my new liver. He recommended me for the new, and more effective, 12-week hepatitis C treatment. I began the treatment in March 2015 and completed it in June 2015. The harshest side effect was from the ribavirin, which caused me to be listless and quite fatigued for much of the 12 weeks. Other than that, I experienced no significant side effects. At the end of the 12-week period, my blood tests showed no trace of the virus.
Being cured of hepatitis C has impacted my life quite a bit. It has given me the peace to know that the virus is no longer a threat to my new liver. It also significantly reduced my chance of getting liver cancer. Being cured improves the quality of my life. My energy level is up, my depression is gone. I can get out and volunteer. It gives me the opportunity to pay it forward. I want to help others avoid the things that I've gone through as well as encourage people to be donors.
My Advice to Veterans with Hepatitis C
I would like my fellow Veterans to know that, based on my own experience with hepatitis C, I completely understand your concerns as you weigh the pros and cons of taking the hepatitis C treatment. But when you consider the consequences of leaving your hepatitis C virus untreated, consequences that may include years of illness from the devastating effects of the virus, the probable need for a liver transplant, and even the probability of death, then I believe you can reasonably conclude that opting for the cure would be a no-brainer. Finally, remember that our Veteran families suffer right along with us as we battle this debilitating virus, and we must consider the relief it affords them when they know that a cure for their loved one is possible. So, I encourage you to make the decision to take the new hepatitis C treatments.
David, Army Veteran
Long before I was diagnosed with hepatitis C, I felt something was wrong but my doctor couldn't find anything. When I joined the VA, they asked if they could test me for a bunch of things including hep C. When I found out I was positive, I thought that was why I was feeling that way.
The first treatment I had was very hard. It was with the older drugs. The injections ... it got to the point where my hand would be shaking so bad that I couldn't do it. I had to have someone else give me the injection. It was awful. The treatment did cure me for a while but the hepatitis C came right back.
Keeping Hope for New Treatments
Dr. Morgan at the VA was telling me there is a new treatment on the horizon. So I kept hope. When I'd start to get depressed, it gave me hope. Now the second treatment, I don't even recall having any side effects. I was expecting them but there was nothing, it was very minimal. I thought maybe I was on the placebo because I was part of a study. Sometime after the treatment was finished I found out it was the real drug. I had more energy right away and I could do more things. It was very moving when I found out my hepatitis C was cured. You feel indebted to the person that saved your life. I do feel the VA saved my life.
Impact of the Hepatitis C Cure
I felt depressed before and the weight of that burden is now lifted off of my shoulders. I can ride my bike again, go backpacking. It is a great feeling.
When they told me a new drug was coming out, I was a little bit leery because of my past experience. I didn't ever want to do the interferon again. It was so painful. My advice to other Veterans feeling this way is: Don't worry about it, you will be fine. It was totally painless for me. Don't be afraid, go for it. Do it. You won't be sorry.
Mike, Marine Corps Veteran
I first learned I had hepatitis C when I was donating blood in 1990s and they said to get it checked. My only symptom at that time was fatigue. I didn't know what to expect or how it would affect me. I had three friends who had hep C and two passed away from it. I refused the older drug, interferon, because I heard horrible things from my friends. The side effects concerned me. I didn't want taking it to affect my work. I was working with heavy machinery. And I was feeling fine, so I thought it wasn't worth the risk.
Experiences with New Treatments
Dr. Morgan suggested I try the new medication in 2013. I took the medication for four consecutive months. I went into the VA every week so I could get the medications and get lab work done so they could track my levels. Being that I am a liver transplant patient, I was already on medication so I could take the new medication at the same time. It was easy. The side effects I was getting were ones I already had due to the liver transplant. It was basically fatigue and some nausea and dizziness.
After I found out I was cured, the big difference is that I don't get the chills as much. I would encourage other Veterans to try the new medications. You don't have to worry about shots. The way that I've been cured, it is a much better way.
My Advice to Veterans with Hepatitis C
Please don't wait. You've suffered long enough with the illness of hepatitis C. Four months from the day that you begin treatment, you can be cured. I went through the treatment and I have been cured for over 18 months. I cannot stress enough that this is less painful than the old treatment.
Try it. It is a commitment but don't give up. You will be less fatigued and your side effects are little to none. You can be cured.