10 things I wish I'd known

[Dandelion_1]

These are ten things I wish I'd known when I was first diagnosed with Hep C:

I wish I'd known not to panic

I wish I'd known that I could live for a very long time with the virus

I wish I'd known how my liver was within a week of the diagnosis

I wish I'd known that there would be drugs with fewer side effects in the future

I wish I'd known about the Hep C Trust on the day I was diagnosed

I wish I'd known the best foods to eat to manage symptoms

I wish I'd known to choose carefully who I told

I wish I'd known to ask for a referral to a specialist Hep C Clinic

I wish I'd known not to Google for answers to my questions

I wish I'd known how to take my mind off having Hep C, to forget about it, to laugh

What are yours?

[Tess74]

I think this is where I was lucky...google brought up the hep c trust for me so I called them

[Dandelion_1 in reply to Tess74]

Yes, it eventually did for me too but not before the not so good sites at the time! After I found the Hep C Trust, I stopped Googling.

[Sillysausage234]

Internet and education although the only thing I new about computers was space invaders and PAC man .🤓I am still glad I waited for the epclusa as I know now that for my genome3a interferon and ribivarin,would of been a waste of time .

[Dandelion_1 in reply to Sillysausage234]

And you learned a new skill Alan, a rare bonus. When I got the diagnosis, I wondered why it hadn't been picked up a long time before. I'm glad now that it wasn't as the info and support would have been so hard to come by. No Hep C Trust, no forums, no sharing!

[Sillysausage234 in reply to Dandelion_1]

And you'de think a genome was something you put in your garden🤓.

[Tess74 in reply to Dandelion_1]

I have the same thoughts. I'm glad I wasn't diagnosed earlier.. .I count my blessings that I found out just as the new treatment was being approved

[Dandelion_1 in reply to Tess74]

I'd settled into a frame of mind to live with the virus for life as all that was available was the standard interferon and ribavarin. When talk of the new treatments came into the equation it was another rollercoaster of research, hope, disappointment and the long process to eventual treatment. I learned to mange my expectations and that's been good for me. I know that I still need to recover from the strain of it all as well as celebrating being free of the virus.

[Sillysausage234 in reply to Dandelion_1]

Me too, in respect that I had got my head around the idea that it was going to kill me. Some good stories on here now though about people getting the new treatment and quickly which can only be a good thing x

[Sillysausage234 in reply to Tess74]

How long did you wait from first getting told to getting treatment ?

[Tess74 in reply to Sillysausage234]

A year.. .they offered me the old school stuff straight away but I refused then got the new stuff...i was lucky I think x

[Dandelion_1 in reply to Sillysausage234]

From the day of diagnosis to the first day of the clinical trial drugs was just under 6 years.

[Dandelion_1]

A big lol to that! I thought a Fibroscan was a new laundry product.

[Sillysausage234 in reply to Dandelion_1]

That you put in with your viral load x

[Dandelion_1 in reply to Sillysausage234]

Le's spin this out!

[Sillysausage234]

I was going to mention cycles but I wont🤓

[Dandelion_1 in reply to Sillysausage234]

I glad you didn't, would have been too draining.