Hep C Positive
531 members427 posts

Still no treatment

Today I had my long awaited hospital appointment..only to find that they weren't dealing with anything to do with Hep C they had me in to tell me that the CT scan I had back in October had shown I had a lump and some polyps in my bowel that needed removing and investigating and also I have diverticulitis...so I said what about the virus though and she went off to ask the gastroenterologist what was happening and was told my case is marked urgent and I am on rapid access but there is at least another 2 month wait I have been waiting since September and in November was told it was 8 to 10 weeks ..I just cannot believe it ...I am struggling with this now I feel defeated ...how long did most people have to wait ..I don't even know what type I have yet , I am going to my GP tomorrow to see if there is anything that can be done ...sorry to rant and moan but I feel lost xxx

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Hiya kaz,sorry to hear you getting messed about but you’re time is coming get your polyps sorted in the meantime youlle feel better for it then get your hep out of the way I waited 4 years appointments 6 monthly but rapid access means your top of the list now so get yourself prepared well,don’t waste energy on being miffed good luck .

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Thanks Alan just been feeling so unwell recently and I was so prepared for today so when I realised it wasn't going to be discussed I was knocked sideways....and reading up on diverticulitis it's not too pleasant either ..the symptoms are similar to symptoms in hep C so i dont really know where i am ..

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sort your bowel problems youlle feel a lot better 👍

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Hi kaz. Sorry for your disappointment and frustration. I am with Alan on this one, getting the other problems sorted out first. The consultants want you to be in the best of health before putting you on medication I presume. Does make sense. you will benefit from having the polyps removed and be in a much better position to take the medication to clear the virus. So disappointing I understand when you go expecting one thing and told something else. I personally have no idea but possibly 30 yrs having hepC First symptoms 11 years ago and dismissed since then until things got really bad last April. Eventually got diagnosed and had treatment end Nov. So in all an 8 month wait. You are not beaten. Push to get the polyps sorted then you can steamroller for the hep c treatment. best wishes and virtual hugs 😍😍

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Thanks I don't think she was aware of the hep C to be fair ..she was a new registrar and when she asked what I was expecting today as an opener to the conversation I immediately said well hoping to have some treatment for hep C she was taken aback ..anyway I know the lump and the polyps need gone but It felt like went up for one thing came back with another ...I'm trying to stay positive and succeeding most of the time xxx

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Hi Kaz1959

I was diagnosed in 2007 and thought it meant I was going to die from it! I had a great consultant who reassured me that my case wasn't too bad and to wait until they got better drugs. I was monitored regularly and he helped me manage a few other medical problems I had - wrote to other consultants on my behalf etc.

Eventually treated with Harvoni at end of 2016 when The fatigue was just unbearable so don't worry just get all the other stuff sorted so that you are as healthy as possible when the times right for you to get hep c treatment.

Lin

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I was diagnosed in 1996 and deemed too well over the years to need treatment, until now. So waited quite a while for the newer treatment as well. It sounds like a good idea to get you bowel troubles sorted first, and if you are on rapid access that's great and hopefully shouldn't take too long. It can be frustrating I do understand, but it's good to know that you are in the system and they will get back to you asap ☺️ all the best to you

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Thanks all for your replies ..Today is a new dawn and my glass is half full again ..I will get there I will beat this I will not let history repeat itself , I have a bucket list that I am still ticking off ..I am so glad I found this place I am so glad you are all doing well and when you are not we have this little community ....Happy Valentine's day to you all xxxx

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You too x

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I had a delay in starting mine because of a CT scan. Nurse said they need to know all and any treatments we are receiving BEFORE starting the HepC medication as some can react.

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Good look kaz x

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Hey Kaz sorry to hear you never got the answer you needed.Everyone is Right better to get the other stuff sorted. It will stand you in good stead and better able to go through treatment when it comes and it will!

I waited years as I refused the old treatment half the time I wasn’t being monitored. But when I got referred back the end of November everything happened so fast and I started treatment the end of December.

Your at the top of the list now so prepare your self by dealing with the other issues now.

Fingers crossed for you and wishes Cathy x

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Thanks Cathy ..I am not even worrying about it anymore ..what will be will be I have survived cervical cancer , skin cancer and leukaemia ( twice )I am probably on last of my 9 lives I lost my husband and soulmate due to hep C and it's complications I feel like my local hospital don't have a clear handle on my case as one department doesn't speak to another ...

I am just getting on with my life and trying to keep a healthy diet , work life balance and making sure I enjoy myself ...tonight I just watched Paul Weller in concert ...i have had a great life and I have no regrets..I have my lumpectomy scheduled for 6th March then I will deal with what comes next and if one day I get treatment then great ..if not well c'est la vie

Hope you are keeping well xxxx

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OMG you’ve been through a hell of a lot!! Your AMAZING! Terrible about the hospital unbelievable they are not communicating.Keep fighting your corner and don’t be letting them fob you off!

Happy to hear your still living your life such an inspiration💪

I’m doing fantastic lots of plans and nice things to look forward to 😊

Hope you have a lovely weekend you take care lots of love❤️💋💋

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