Living Without HepC

So the expression goes - and one I keep reading on the Forum as people count off their way to the ending of treatment, till PCR and SVR. Well, it’s proving to have a meaning in my case too – different than I had anticipated.

On 3 April I had my blood taken for my 6 month end of treatment final appointment at my HepC Clinic. Yesss! Eight phials for various tests including the all-important PCR to establish whether the virus continues to be undetectable in my blood stream (as it has since Week 12 of treatment).

Soon it would be all over – April 12, last tests, last clinic app’t. Good-bye to Mynurse. Little present to say thank you for the help and support during treatment.

Mynurse suggested I telephone on 12 April to make sure the test results were back before coming in for my appointment. When I rang that morning she said she needed to see me – a reply which left me puzzled, a bit concerned then convinced, as I travelled to the hospital, that all was not well. By the time I arrived I had prepared myself for the worst – that the virus had returned. No, the test had come back negative – but had been diluted.

The Virology Report states: “HCV RNA has been diluted 1:2 Due to insufficient sample volume this specimen had to be diluted, which may give an inaccurate result.” Eight phials of blood taken but insufficient had arrived for this important test! The rest of the blood results are fine – back to normal ranges for ALT’s, Hb neutrophils, etc. Thyroid function is normal.

So back to the phlebotomist for another session. With my encouragement they took 2 phials of blood this time for the HCV RNA.

Mynurse suggested rather than book another hospital appointment she would tell me the outcome of the test over the telephone a week later – provided I proved that Carol was standing by in case it was a bad result. It is not her normal practice to give such results over the telephone and I think she was prepared to make an exception as she was confident about the outcome. Then it transpired she would be on holiday the following week, necessitating a further wait till yesterday. When I rang she hadn’t heard back from the lab and said she would ring me at 1:30. I arranged with Carol to be standing by then.

At 12:30, as I was leaving Marks & Spencer, Mynurse rang to say she had been in touch with the lab and the virus is undetectable – but the Virologist has not seen the specimens in that batch and signed them off. The lab is very busy and has no idea when this will happen. So it’s not official. I can call back next week and see if a report has been sent by the lab, but no promises. No, I can’t have a copy or a copy of the letter which will go to my GP – it is difficult for Mynurse to produce copies and send them to patients.

I did ask what would be sent to my GP – a letter stating that I have tested positive for HCV anti-bodies and tested negative on the HCV RNA. And a statement there is a 3% chance the virus will return.

So, is it over?? Doesn’t feel like it. Am I clear of the virus?? Sounds like unofficially yes, for the moment. But I should be aware, as will be my GP, that it may return. Should I celebrate? Well, not officially.

Not only is the fat lady not singing it feels like she’s still hiding in the wings.

This entry was posted on Tuesday, April 25th, 2006 at 4:04 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.