One Mans Story of Working during Hepatitis C Treatment

One Mans Story of Working during Hepatitis C Treatment

I asked my friend to share his experience with working during hep c treatment. I wanted to add a male perspective for those of you who are going through treatment or making the decision to treat. He is an avid cyclist who used athletic training on his bicycle to prepare for the grueling 48 weeks. His story, and his tenacity are inspiring. Can you continue working while on Hepatitis C Treatment? Read on to hear one mans story of working during Hepatitis C Treatment. Click here for a quick read about my personal experience of working on treatment.

While in for emergency surgery to remove adhesions that wrapped around and shut down my lower intestine, I was in recovery for around 5 days.  During one visit from the gastroenterologist (GI) I received the very disturbing news that I was Hepatitis C Virus (HCV) positive.  My head began to spin and knew this was going to be a big challenge. I would have to deal this with in the near future, but needed to get back on my feet first.

Follow-up blood tests determined my viral load and genotype.  More bad news – genotype 1a, which meant a 48 week treatment.  I  began treatment just prior to the release and approval of the protease inhibitors (PI’s), which would have required a 24 week treatment, but with more side effects.  I was not given the option to wait, and sometimes look back wondering if that would have been the better option.   Very little was known about the PI’s then, so it was a big guessing game.  In addition, my GI had no experience with them, so his advice was to stay with the standard protocol. So, I began to make the decision.

One of my big concerns was how will treatment affect me, both internally and externally?  Will I have the energy to carry on?  Will people at work notice that I’m on treatment?  Will I be able to continue work?  The anxiety of these unknowns carried a big weight for me.  Reading the HCV forums didn’t make it any better.  Although the forums are a great place for information, support and guidance, they are heavily populated with those having a difficult time with treatment.  Reading about all the difficult side effects is frightening because you have no clue how you will respond.

Since I’m normally in pretty decent shape due to cycling, I tried to focus on getting myself back on my feet after surgery.  I also had a few important business trips and presentations coming up, so I put off the beginning of treatment around 6 months.  I continued getting myself in top form through exercise while the thought of starting treatment loomed in the back of my mind.  I wanted to go into this feeling strong since I knew it would be physically challenging.  And it was.  At around 3 to 4 weeks the Interferon and Ribavirin completely saturated my body. It affected my breathing and energy level.  I needed to back off the regimen of riding 4-5 days per week.  However, I continued to ride at least 2x per week, but at a much lower level.

Since my job is mostly administrative and does not require much physical activity, I wasn’t challenged on the physical side.  There were several days that I wondered if I would be able to manage due to the mental challenges of dealing with complex issues and group discussions on technical topics.  When you’re not feeling well, sometimes simple thoughts get muddled and difficult to process.   By the end of most days I was exhausted and came home to recline on the couch.  Going for a ride was out of the question – no energy.  I was just counting the days.

Choosing who to tell you’re on treatment is a very personal decision, one which many people struggle with.  I decided to tell only family members and those very close to me.  Since I’m the boss at work with around 30 employees, I didn’t want anyone’s sympathy and any change in their perception of me while at work.  Also, there’s so much stigma and misinformation, I didn’t feel the need to explain and educate.  I decided to only tell my employees if it was necessary.  If it became apparent, and if I needed to take a period of time off during treatment – then I would take the time to explain, educate and inform.  I know I would have had plenty of support, but I feel I didn’t need that at work.   There’s no right or wrong decision on who to tell.   This again is a very personal decision. Read here about the decision to tell your boss or not.

The first several weeks of treatment were a breeze for me, but around 3 to 4 weeks the side effects began to kick in.  At around 8 weeks I had a very nasty rash which covered my entire back, but was able to get it under control within a week or two.   The brain fog began to set in during this time and I frequently took short breaks, just closing my eyes, head in my hands, wondering how I was going to get through this.  Day by day.  I used Outlook’s calendar to put in the starting date and the critical dates throughout the 48 weeks.  It seemed like eternity at first, but after receiving the first “Undetectable” at the 4 week PCR, it gave me a renewed hope to carry on.  This proved there was a reason for this awful medication, and others on the forums gave inspiration to carry on.  The forums are a great support group that can be extremely helpful.

As time went on the side effects tapered, or maybe I just got accustomed to feeling like crap.  The “new” normal.  I forget what feeling normal was like.  Days turned into weeks, weeks turned into months, and time moved on.  Although I didn’t lose much weight at all, my physical appearance did change.  My wife said I look gaunt, my face thinner, a bit drawn, color a bit greyish.  I didn’t like looking in the mirror.  My hair thinned some, maybe a 20% loss.  Fortunately, I have a thick head of hair, and no one noticed the hair loss.  It did go from thick and wavy to thin and straight.  It didn’t bother me.  I was lucky compared to some that lose most of their hair.

Working through Hepatitis C Treatment was important for me in many ways.  It gave me something to focus on, rather than sitting at home letting the hours pass by.  The days went by much more quickly.   I didn’t miss any work time at all except for the occasional doctor’s appointments.  There are many that had a very difficult time during treatment, especially those that were severely anemic, so I sympathize with them.  If you can’t work during treatment, I certainly understand.  But for me it was helped to get me through.  It was not easy, but manageable on most days.

The last few months of the 48 weeks seemed to drag on forever, but once I hit the single digits, the reality of closing in on the finish line became real.  Once I was down to the final box of 4 shots, I knew End of Treatment (EOT) was just a few short weeks away.  The thought of no more shots and pills was so inviting: having more energy, no more shortness of breath, no more spontaneous coughing.  The 48 weeks seemed to drag on forever, but once I hit the single digits, the reality of closing in on the finish line became real.  It was so close, but seemed to take so long to get there.  Then finally, the last shot, the last week of pills.  It was over, thank God.

Recovery happened very quickly for me.  Several days after EOT the cough subsided.  It did take several weeks to feel the breathing return to normal.  I could feel a slight improvement in cycling, but I did lose considerable muscle mass which would take some time to rebuild.  No worries.  It gave me something to work toward and I knew it would happen in a matter of time.  The brain fog began to lift – clearer thoughts with more spontaneity.  It was so refreshing to be back to normal.  Actually, I sometimes wonder if I’m feeling better than prior to treatment!  Although I was asymptomatic, the HCV was silently attacking my liver and possibly other vital functions.  It’s hard to evaluate, but now knowing that I’m SVR, I can relax knowing its gone forever. 

Here is my Youtube video blog about working. I made it late on a Friday night and was just a bit giggly. I hope it encourages you. xo

I worked for the whole treatment missing only the days I went to my transplant doc or for a blood transfusion. Click here to read my survival tips.