Len Minty has moderate haemophilia and had chronic hepatitis C until he was cured this year. He estimates that he was living with hepatitis C for 33 years. Here he tells his story about hepatitis C and the very different experience he has had with the new direct acting antiviral (DAA) treatment.
THE FATIGUE CYCLE
For 33 years, the perennial shadows of low level nausea, low levels of energy and brain fog have followed me constantly. Frequently they conspired and sucked the energy, both physical and emotional, out of my being to the extent that the will to complete tasks or even to commence them was brittle. Relationships with partner, family and close friends were compromised.
From the very beginning of the disease, I resolved to be “normal”. My long established commitment to physical activities as a counter to the possible debilitating effects of bleeds – such things as swimming, running, cycling and orienteering – I intended to maintain.
And I did.
I would push myself through the nausea and lassitude for the first 8-10 minutes of a run or cycle, knowing that after those 8-10 minutes the dopamine would begin flowing through my body and sustain me for 20-25 km of running or 45-50 km of cycling. I’d pay a price later with an afternoon crash or siesta, which would be followed by the return of the aforesaid nausea etc.
INTERFERON TREATMENT
In 1992 I took part in the nationwide trials of using interferon as a treatment. I drew the short straw and was on 3,000 units 3 times a week, which was tantamount to having three short bouts of flu each week.
In consultation with my then gastroenterologist, we soon found that the interferon treatment which was so demanding was suppressing the viral activity so I continued on it for the next 14 years! Eventually, it became apparent that the little nasty had learned to live with the interferon, so I came off it in 2006.
I was thrown back on my own defences until 2009.
Then it was that I went on to a dual treatment of interferon and ribavirin. This was the beginning of 62 weeks of daily horror: nausea, low energy levels, inertia, headaches, mouth ulcers, hypersensitivity to favourite foods especially curries and spicy foods. And depression. It was during these sixty two weeks that both my daughters married. I was at the weddings but I wasn’t.
THE NEW TREATMENTS
After coming off this regimen, there was talk. Much talk. Much promise of new Direct Acting Antivirals. Always being promised. Soon. Frustration. Disappointment. Desperation.
Until Tuesday 8 March 2016. At 1.30pm I took my first doses of Sovaldi® and Daklinza®.
By 7.30pm on that same day, I perceived a fog lifting; there returned a clarity of thinking that I had forgotten I once had.
On Friday 11th March, I felt a strength and power on the bike that I had not experienced for years. It was EXHILARATING.
This energy-filled experience has continued ever since. Though not clinically cured until December, I believed I was from the beginning.
The side effects? Nil.
How difficult to take? Pop them in your mouth at the same time each day and wash down with a glass of water.
Since starting treatment on interferon in 1992 I have had regular check-ups every month or couple of months with my gastroenterologist, and since 2006 regular ultrasound and blood tests.
In earlier days, I had biopsies and more lately, fibroscans.
With the six monthly consultations with my gastroenterologist, I had all that was necessary in the form of blood tests and ultrasounds and scans and was ready to commence the DAA treatment.
When I first drafted this account of my experience with the new hep C treatments, I had not yet had my final results, but I was confident from almost the beginning that I would be cured. Three blood tests during the 24 weeks of treatment (I needed 24 weeks as I had cirrhosis) all came back “Virus not detected”.
What would the ultimate test done twelve weeks after treatment ceased say?????
These were t w e l v e long weeks. I waited expectantly. I waited with frustration. I waited confidently. Why did I have to wait so long when I knew (sic) the result?
Thursday December 8th. I was handed the printout of results by my gastroenterologist’s assistant. The three words I knew would be there, were there:
VIRUS NOT DETECTED
I was cured!!!!
The new DAAs are pain free, side effects free and they worked for me.
If you have hep C and are hesitating, dithering or delaying, hesitate, dither and delay no longer. Just go ahead and as the ad says: Just Do It!
