My Hep C Diary
Discovering a Disease
In July 2014 my wife and I went for couple of weeks’ holiday in Queensland, having a break from the Tasmanian winter and catching up with friends and family in Queensland and northern New South Wales.
Somewhere along the way to our holiday destination, probably on the flight from Hobart to Brisbane, my wife picked up a very bad dose of the flu and was bedridden for a few days on our arrival at our eldest son’s house. Of course I ended up catching the virus too, not as severely as my wife but I was pretty sick for a couple of days.
About mid-August 2014, a couple of weeks after getting home from the holiday, I began to feel strangely fatigued. The fatigue coincided with the colour of my urine becoming noticeably darker and acquiring a rather strong and unpleasant smell. I knew something was not right but did not worry too much until I had a day when I could not raise myself from my bed. Then I started to become concerned. The thing that really got me thinking about going to the doctor was that my morning cup of coffee, a double shot long black, practically sent me to sleep. Something was wrong and I felt it was probably my liver.
Meanwhile my wife, who had started worrying sooner than me, had Googled my symptoms and insisted that I visit our family doctor, which I eventually did.
Our doctor ordered liver tests and when the results came back they showed liver enzyme levels 20 to 50 times higher than they should have been. Another set of tests showed that I was carrying Hepatitis C. virus antibodies and another set of tests showed that I was carrying live Hepatitis C virus. The enzyme levels and symptoms were indicative of acute Hepatitis (recently contracted) rather than chronic (had it for a long time).
Of course all this produced a mental and an emotional shock, a lot of shock; for me and for my wife.
The shock of learning I had Hep C was followed by a lot of questions because I knew next to nothing about Hepatitis C. I turned to Doctor Google and asked things like:
How did one catch Hep C?
How did one transmit Hep C?
Could my wife catch Hep C. from me?
Could my children catch Hep C from me?
What were the treatments for Hep C.?
What were the side effects from the Hepatitis C treatments?
On and on; there were so many questions. Thank God for good old Google!!!
However, even as I was Googling and all that new information was churning around in my head, the biggest question, and one that Google could not answer was: How did I contract Hep C?
A Bit Of Background
When I got the news that I had Hepatitis C. I was a very fit 60 years old (at the time of writing this I am 61). I had been given a liver function test a few years earlier (2011) as part of a routine health check and all my liver functions showed a very healthy liver with all enzyme levels in the best possible range. The only recreational drug I have used for many years is alcohol, mostly in the form of red wine and, whilst I did enjoy a regular glass or two, even the occasional glass or three or four at a party, I was not a serious or heavy drinker.
I had been in a happy, monogamous marriage for over 35 years. I was not bisexual and did not engage in any unusual sexual practices that involved blood. I had no tattoos or body piercings and had not had a blood transfusion; however I had used intravenous drugs regularly in 1974, mostly heroin. I gave up drug use in late 1974 and was clean for about six months then weakened and had one hit in early 1975. That one injection resulted in a severe overdose and me getting very close to being dead. After that I never injected drugs again.
So I had not used intravenous drugs for 40 years and during that forty years had had a couple of liver function tests that all showed a healthy liver and no sign of Hep C. although I don’t think that I was ever specifically tested for Hepatitis C.
So in August 2014 I spent many days and nights agonising over how I could have contracted this disease in my recent, clean lived, past. In the mean time my adult children and my wife all had tests to check if they had contracted Hep C and, fortunately, none had.
Whilst I was agonising over how I had contracted Hepatitis C. and spending a lot of time checking out the various websites related to Hep C, I underwent more tests. My doctor was concerned that the high liver enzyme levels might indicate liver cancer or advanced cirrhosis of the liver so he ordered liver scans. First I had an ultrasound, which indicated that there was no cirrhosis and no indication of tumors or lesions.
By late October I was able to see the nurse and doctor of the Hepatitis Clinic at the Hobart Royal Hospital and they ordered more blood tests, including for HIV and two other liver scans, a liver flexibility test and a CT scan. The doctor was not convinced by the ultrasound and still suspected that I might have liver cancer.
By coincidence at this point in time a good friend of mine was diagnosed with advanced liver cancer.
The liver flexibility test showed no problem and the CT scan confirmed that there was no cirrhosis and no cancer. All this seemed to indicate that I had acute Hepatitis C rather than chronic. That is to say the tests indicated that I had contracted the disease recently rather than a long time ago and that made no sense at all.
However there appeared to be no way that I could have contracted Hep C. other than through my intravenous drug use 40 years prior. Googling seemed to indicate that Hepatitis C could remain dormant in a person for about 20 years however there was not much to suggest it could stay dormant and undetected for 40 years.
Here I have to say that the nurse at the Hobart Hepatitis Clinic was amazingly helpful. I attended the Clinic with my wife and we discussed the mental turmoil we were going through because all the reading we had done suggested that, whilst Hep C could lay dormant for 20, perhaps 30, years there was nothing to suggest a dormancy period of 40 years. The nurse’s response was she had no problem with the idea of the virus lying dormant in my body for that period of time. She said that she had personally encountered cases such as mine with a dormancy period of thirty to forty years and that there was a body of evidence to suggest that an infection with another virus, such as a dose of the flu, could trigger the onset of dormant Hepatitis C, particularly when the carrier was getting on in age, like I was.
The other reassuring piece of information from talking with the Hep nurse was that she told us that she had never met anyone in a monogamous heterosexual relationship who had contracted Hep C from sex.
Hepatitis C Treatment Options.
So it seemed I had probably contracted Hep C back in 1974!
After driving myself nuts trying to figure out how I got it I was kind of relieved to accept that it was a consequence of my crazy teenage life that had come back to haunt me. The next step was how would I, could I, get rid of the virus?
Again reading the various resources on Google there was a general concensis which suggested that about 20% of people could kill off the virus with their own immune system, however there were some caveats: the chances of one’s immune system doing the job were much higher if one was:
1.Female 2.Young 3.In good general health 4.Pregnant
So I failed on three of the four and, as you might guess, my immune system did not kill off the virus.
So my other option was a treatment involving the powerful anti viral drug Interferon, used in the treatment of HIV, combined with a cocktail of other drugs. One injection of Interferon each week for about 9 months and a handful of tablets every day plus a nightmare list of side effects. Add to that about a 60% chance of the treatment being successful.
So I looked at natural therapy treatments for Hep C but found nothing convincing. The reading I did suggested that natural therapy approaches could help to manage the disease but I could not find any proof (outside the 20% mentioned above) that natural therapies for Hep C would get rid of the virus.
My last Hepatitis C treatment option was to try to manage the disease until a better treatment options became available, and there was chatter on the Internet about new Hep C drugs that might be coming soon.
It was not a difficult choice for me. I have never been too keen on the use of pharmaceuticals for treating illnesses, though they certainly have their place. I guess the terrifying list of side effects from the Interferon treatment was the decider and research showed that a high portion of people quit the Interferon treatment before completion of the treatment because the side effects were so bad.
Managing Hep C
So I chose to manage the Hepatitis virus rather than suffer the side effects with only a 60% chance of a successful cure. I would wait it out until a better drug therapy became available.
To manage the Hepatitis C virus meant giving my liver the least amount of work to do, that is I was going to take the pressure off my liver. So I gave up all alcohol, cut back on red meat (red meat gives the liver a lot of work), cut my coffee consumption from three or four cups of coffee per day down to about a half a cup a day and generally tidied up my diet. Plenty of fresh fruit and vegetables.
Within a few weeks of making these changes I noticed improvements and after a couple of months my liver enzymes dropped back down into ranges that were only four or five times higher than normal. Also the level of fatigue I experienced was reduced, though I still needed a snooze most days.
In the mean time I had been given a few more blood tests and discovered that I had Hepatitis C genotype 2. This was interesting because it is the rarer type of Hep C (about 5% of all infections) and (apparently) genotype 2 is easier to treat.