Liver disease or not ....16 weeks and counting

Found out October 3rd have Hepatitis C most likely from a blood transfusion when aged 10-11 years of age, Checked with hospital where I have been referred and 16 weeks minimum until first appointment to assess my status... Current symptoms are bouts of extreme fatigue, feeling physically weak, joint and muscle pain, poor memory/concentration, blurred vision.. Is this it? If it takes this long just to be seen to assess 'where I'm at' how long will it take before receiving any treatment? NHS letter mentions NHS Constitution which I imagine outlines waiting times - what recourse do patients have if these are not met or is just propoganda?

8 Replies

  • Hi, sorry to hear about your diagnosis, I am in the same boat due to a childhood transfusion. I was diagnosed in 2014 and started treatment early this year, hep c is very slow acting so they tend not to act as swiftly as they would if it was a more aggressive virus, I read it can take 20+ years before it can cause damage. It seems in the uk that treatment is given to those of us who are more 'damaged' from the virus, my fibro scan was 11.6 kpa which put me close to cirrhosis which enabled me to get treatment...(silver linings eh!! :/ ) regards to your symptoms it could be down to the hep c, have you checked out the hep c trust yet, they're really really helpful!! In regards to your transfusion please contact your hospital, gp etc to see if theres any records of it & if they're are get copies asap, then check out the skipton fund as you are owed a gratis payment, I hope this information is still on file for you because it seems for many people all records of transfusions have disappeared hence people being able to 'prove' they had treatment with contaminated bloods. Good luck

  • oh ffs...I've just realised I've already told you about skipton on another thread...ooops lol

  • Get your fibroscan done. The waiting list for treatment is based on how much your liver damage is. My 20.9 F4 fibroscan reading allowed me treatment within a few months. If you cant get NHS treatment consider spending about £1000 getting the drugs from India via Greg Jefferys. Google him and read his blog. Its amazing and gave me so much information. Also call the NHS phone line for HEPC calls are handled by people who have had HEPC so they know what your going through. I would have definitely done this if the NHS failed to treat me. It has taken me several months to get all the tests etc. I was first diagnosed in September so your a month behind me. Please phone the NHS number and read about Greg hepatitisctreatment.homeste...

  • Thanks for your reply, info very helpful. Have you started treatment then? From what i understand fibrosis is reversible with treatment, diet, etc so hopefully all will work out for you.

    I find the waiting quite hard to deal with, the not knowing what's what. Doctor is chasing up my referral to Manchester Royal Infirmary (MRI) so hope to be seen by end of february though am sure it'll be some time before i am given a clear picture of my 'status' so to speak. All so out of the blue isn't it, threw me at first, certainly put my plans to travel on hold but the world isn't going anywhere 🙂

  • I started on the 9th so i am into my 2nd week of treatment. Yes i have heard conflicting stories about how the fibrosis can reverse and my consultant said it has been known. I get the feeling none of them will actually confirm it but i have read blogs and forums where people said it can. Also I was told my my consultant that of all the tests the Fibroscan is the least reliable and it can vary even within a day. I believe the Virus is the cause of your cirrhosis once thats treated it will not get any worse and "might" get better. I managed to get all my tests on my private healthcare. Once all the tests were done I was referred back to same team but via the NHS. My Private Consultant also worked for the NHS so it was easy to go from one to the other. My GP wasn't involved once she had confirmed my diagnosis. If you haven't got private healthcare you need to start making some noise and tell them you will get your drugs from India if they cant get it sorted. Write to your local newspaper, radio station etc. Put pressure on them because its outrageous that some people are still waiting for treatment. There is a postcode lottery for treatment for HEP C. A set amount is allocated to each area. It makes me very angry but try not to stress because your in the system and your liver damage isnt really going to change much in the next year. Your damage like mine has occurred over many many years. Don't drink and watch your diet and put pressure on your health authority. Did you read the blog i told you about. Hes Canadian but his blog is still very interesting. It will put your mind at rest.

  • Thanks again for reply. Saw my doctor on Tuesday to ask her to chase up appointment at MRI and they rang this morning with appointment for 1st Feb though am sure it'll take time to get a clear picture.

    My anxiety mainly comes from not knowing what condition my liver is in, I do not drink. I know I have mild non alcoholic fatty liver (NAFL) as overweight but so far have lost 6kg, helped of course by intolerance to fat, sugar, dairy .. try to exercise more by walking 🚶 on days am not too tired so keeping positive but it certainly helps someone else being able to relate x good luck with your treatment, keep us updated 😊

  • The MRI will rule out liver cancer. Mine was OK. You have the fibroscan results so the only other tests i had were an ultrascan and a camera to check for varacies. Both mine were ok. Do you know your geno type yet? Yes stay positive because we have no choice.

  • also watch this

    Good luck!

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