Hello peoples! : I gave blood for the... - British Liver Trust

British Liver Trust

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Hello peoples!

mherbie profile image
26 Replies

I gave blood for the 1st time ever in October, ticked the fit and healthy box..just a bit of a bombshell when last week I discover I have hep c. For how long I don't know, maybe 35 plus years..am now waiting for referral! From Gp to see a liver specialist..how long will that take? My diet is good and clearly the jolly nights at the pub can be jolly..but absolutely zero alcohol! I have been feeling very sad and under the weather lately..thought that was mild menapause.lol.or day to day added stresses....oh help....the thought of hospitals and meds..guess its one day at a time...

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mherbie
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26 Replies
Positively profile image
Positively

Hi,

I posted very recently that I had just had a positive HepC result and felt stunned and lacking in knowledge.

My test was done during some extra screening in clinic for my connective tissue disorders as lost weight without trying.The only time I could have been at risk would be 30 years ago during a transfusion so on a similar timescale to you.

So glad this forum was here.

I am referred as an urgent but Secretary said they are so overbooked it could be 4 to 6 weeks but that some folk are waiting 3 to 4 months.I think it depends on other results and which area you are in.

I had a reply pointing me in the direction of the Hep C trust ,sorrycant do a link, who have been very helpful so it might be best if you Google them and have a chat with them as they have all been through what you and I are now dealing with.

mherbie profile image
mherbie in reply toPositively

Thanks. Will contact the Hep C trust. In LAJ123 s reply he talks of a "two week rule"........worth looking at. Yes I too am pleased to have this forum!

LAJ123 profile image
LAJ123

If you have been referred using the "Two Week rule" you will see a consultant within two weeks.

I cannot speak for other areas - but when my GP ( West Sussex ) suspected liver disease I was placed on the "Two Week Rule" urgent referral protocol. If you look it up it seems to be dedicated for suspected cancer but it is also a route for urgent liver related illness. Ask your GP if you are on the "Two Week Rule " then you will have a better idea of when you will be seen.

In the meantime you are in the best place here for support and information from a lot of people with a huge amount of collective knowledge. For information guidelines in living with Hepatitis C, The British Liver Trust is the best available.

Jim

mherbie profile image
mherbie in reply toLAJ123

Thanks. I will speak with my GP on Monday.

Positively profile image
Positively in reply tomherbie

Did you call your GP ?

Any idea on wait times until appointment ?

Hope you stick around on here as I said before going through similar.

mherbie profile image
mherbie in reply toPositively

My GP tells me its about 8 weeks...so I can manage that. Lots and lots of water and healthy food..fantastic walk today..enjoy living!

mherbie profile image
mherbie in reply tomherbie

Its 4 -6 weeks now..but of course there's Xmas..so I guess 8!

Positively profile image
Positively in reply tomherbie

Ok .

I suppose you could phone Secretary and ask if there are any cancellations if you can attend but otherwise enjoy Xmas and start the new year off with answers and a plan of action I hope.

mherbie profile image
mherbie in reply toPositively

Thanks. Crazy as it may sound I am happy to wait until New Year. Taking even a paracetamol is uncommen for me..so the thought of heaps of drugs..and possable side affects... I am treasuring a few weeks of self healing. Unaware of the Hep C I had started an alcholol de-tox some weeks ago,plus eating well and supplementing..some of my liver function tests have massively improved already which inspires me! I know the drugs are coming and I will be grateful for the medical assistance..but I want to prepare myself!

susieanna profile image
susieanna

Hi, i think waiting times vary depending on area; as has been said 2 week rule applies if urgent referral is done i understand. I waited 4 weeks i think, non urgent, London. I know this is not about the menopause! But believe me, the menopause can bring on many things; what i mean is some of your symptoms may be related to menopause ; any, first things first, see what happens re liver specialist; good luck xx

I am waiting for 10 weeks for my first appointment in RBH, Reading.

mherbie profile image
mherbie in reply to

Oh dear! I hope to find out more this week, but in the meantime caring for my body as best I can! Lots of water, good nutrition, freash air and also plenty of rest. That's all I know about until I see the extent of liver damage I have or don't have. Thank you for reply

Catfishjumpin profile image
Catfishjumpin

You've found it in the nick of time. It sounds like you want to be treated soon. The new anti viral meds have saved many people before they had it long enough to cause cancer. I was not that lucky. I only cured it after 43 years and now have two organ cancers. Good good luck.

mherbie profile image
mherbie

Thankyou!

mherbie profile image
mherbie

I am so sorry. Not easy.

I am going to see my cons on 16th. Shaking a little bit. According to Ocy Health my viral load was over 1000000. No more details. What they tell me on Wed ?

Positively profile image
Positively in reply to

Hope your appt goes ok tomorrow .

Still not got my appt date yet.

My viral load is over 1,500,000 so considered high.

Please comeback and let us know how your appt went .

mherbie profile image
mherbie in reply to

I hope tomorrow goes well.

Feeling better already. Will shear with you what I find out new.

jennyjolly profile image
jennyjolly

You were lucky to find out as you can now have treatment.

Sugars feed the virus and reservatrol in grape juice etc enhances

viral replication

Red meat high in iron..not great for liver

Nuts/seeds high in arginine that also aids the virus

Lots of enjoyable liver friendly foods though

Could google best diet for Hep C.

All good wishes for your recovery

in reply tojennyjolly

Hmmm , all things I like...

jennyjolly profile image
jennyjolly in reply to

Good to google

You'll find you can eat lots of foods you enjoy

Some best to leave out if you want to help your recovery

And stop additional harm

All good wishes

Today I saw my cons first time. As expected they didn"t know anything about my genotipe and viral load because Ocy Health and GP not connected /hrrrrrrr/. Just took a blood sample and arranged US scan after 6 weeks.

However fibroscan shown up a very mild to moderate inflammatory in my liver. He assumed I am having this for 10ish or less years. Will see.

Positively profile image
Positively in reply to

Thanks for letting us know .

I do find it frustrating that with so much use of online in hospitals,GP surgeries that they can't access each other.I am under 4 different hospitals for my other conditions and despite all being in 15 Mile radius they can't access records from one to another.

I found out today that my urgent appointment is the second week of December.They can't manage a 4 week rule in this area alone a 2 week.Staff shortages and massive lists apparently.

Well at least I know when now.

Hope your ultrasound gives you some reassuring news.

mherbie profile image
mherbie

So I guess now you wait for US scan...Did you start any medication yet? My GP rang hospital re 1st appointment with cons..4-6 weeks. So in the meantime..don't know my viral loads or genotipe either!

in reply tomherbie

Not start till January.

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