Hep C results

[maggiem]

Hi Linda,
Went with my daughter to get all her Hep C results today (seems ages since the initial blood test) and the shock it gave us!! Well she has genotype 3 (moderate) and she has to have tablets daily and self inject weekly for 6 months.  There is evidence of some fatty tissue on her liver but not of a level to worry about, however she has to get her drinking levels down. Perhaps the detox that she is going into soon will help.
She is now on un supervised consumption, still at 60ml but doctor wants to start reducing her once she is out of alcohol detox.  She is still doing well and looks well but is a bit worried about the side effects of her treatment, we hope it works for her.
Fingers crossed, things are still looking good!!!
Love,
Maggie x

[Lelee]

Hi Maggie

Thanls for keeping us updated. You all must be relieved to know the results and know what you're dealing iwth and that your daughter is having treatment.  What a long way you've all come.

I'm not sure why the doctor is so keen to reduce her methadone so soon after her alcohol detox. She may need some breathing space.  Is it what she wants?

I'm off to Australia on the 20th April for four weeks to see my other son. I may dip into the forum now and again while away but if you don't hear from me you know why.

Take care and wishing you all the best,

Linda x

[maggiem]

Hi, just wanted to say thanks for all the support and advice given whilst going through our torment!!
I have found this forum to be supportive with good advice that has led us to make our minds up on the route to take. It might not have been easy but we are getting somewhere.  Talking honestlly is a first, Heroin is now a second!!  Ok, Hep C is an issue but at least we can deal with it. I have never had such a full on honest raport with my daughter but at least she is opening up about the pitfalls of heroin and being female! However shocking the world is out there we need this support.  Please carry on the good work.
It is a pity that the carers corner has not been used as well as it should have been, however if it has helped just one family it has worked!
Enjoy your break, you deserve it.
Love, Maggie

[Claire B]

Hi Maggie
I was speaking to someone last week who was genotype 3 and had undergone the treatment. Its not the easiest of courses, with many known side effects.. but this young lady had none of the side effects, and is now clear of Hep C.
While I am not saying your daughter wont find it hard I just wanted to say that it might not be as bad as anticipated.
Good Luck to her, and yourself
claire b

[maggiem]

Thankyou Claire b,
I hope she responds well to treatment but sometimes I think she does not realise the depth of her problems! She is a bit ad-hoc with her pill taking and I am sure she thinks it will all go away just with a flip of a coin!!!
Oh well we will see?
Thanks again for your encouragement.
Love, Maggie

[maggiem]

Hi all,
Well daughter went into alcohol detox and ended up reducing her meth as well!!  Found the whole episode to be theraputic and not as bad as anticipated, a year ago she would never had considered going relating to horror stories she had heard.  Apart from a few days of severe shakes and sickness the worst part was over and to this day is only drinking a couple of cans at the weekend and believe me that is a massive improvement.
When she was in there she asked to be reduced on her meth and came down from 60ml to 45ml in a few days but could not handle coming down further and I think they wanted her bed.  She wants to make arrangements to go into detox to come off the rest and go into residential rehab but that is later.
We are having problems with her hep c treatment, after given her bag of injections and pills and told to get on with it has not had any blood tests or check-ups!  This is her 6th week and does not see her consultant until July.  Is coping ok but suffers from 'ribo-rage' which is great for all!!
Things are getting better.
Love
Maggie

[Tony.B.]

Ah Bless you MaggieM
Your story and life is a constant on this site since you first joined. You update us and let us know how things are going. I find that invaluable. Thanks.
As for the reduction in both substances gosh i bet you feel like telling the world..... well done to your daughter and an absolute tribute to your care and love.
The hepC with geno 3 she is hopefully looking at not too bad a time with her treatment, it saddens me to hear that a young woman who is doing so well is being let down yet again in her treatment. Let's hope someone catches up and sees her before July.
Anyway great to hear your news MM.
My best
TonyB

[Lelee]

Gudday Maggie, well I'm back from my travels in Australia and seeing my other son and it was, in his words 'awesome'. I want to live there!

It's very uplifting to read your updates on your daughter and how well she's now doing. It sounds like she's being very realistic about her drug and alcohol treatment by not rushing things. I suppose it takes a long time for someone to reach rock bottiom so going uphill again is also going to be a comparitively long journey, but that doesn't matter because each step is towards a positive goal.

Shame to hear about her Hep C treatment. I don't know enough about that to comment yet except that it sounds quite negligent but will research it because I want to know more. Have you or your daughter contacted any support groups for Hep C?

Take care

Linda

[Lelee]

Hi Maggie

I've just been sent an email that I've copied and pasted below in case you or your daughter might be interested.
 

The 7th UK Hepatitis C Mentoring Conference will be held in the beautiful seafront town of Bournemouth on Thursday July 2nd 2009.

This conference is specifically targeted at those who are living with Hepatitis C and is designed to give you the most up to date information on treatment, support, care and well-being in a clear and straightforward format.

The theme of this year’s conference is Community Working: Links between Primary and Secondary Care. We are delighted to be working on conjunction with local services in Bournemouth to provide a full and interesting programme (see attached).

The day is split in two, with the morning taken up with presentations on subjects such as mental health issues and treatment pathways. The afternoon will include workshops on a variety of topics such as peer involvement and alternative therapies. We encourage everybody to get involved and participate in these workshops.

A delicious lunch, as well as drinks and refreshments will be provided during the day.

This event is free to those living with hepatitis C. A small fee will be charged for volunteers, carers and health professionals who wish to attend.

A full listing of costs is below;

£120         Healthcare Professionals

£20           Volunteers/Carers/Families

Free         Those living with hepatitis C

For more information or to book a place on the conference, please contact Ian O Sullivan on iosullivan@mainliners.org.uk or 020 7022 1890

 

[maggiem]

Welcome back Linda,
So pleased you had a great time, would love to visit Australia myself and new Zealand, oh and Canada!!!!
Actually have promised myself a trip somewhere when things have settled here.  Bet it was lovely seeing your son, how long has he been there?
I contacted the Hep C trust and they were able to give me some good advice, they were amazed with her treatment(or lack of it). 
I telephoned her consultant's secretary to be told that her notes had not been typed up so she could not refer to her treatment(last app was in April).  Told me to go to GP to have the blood test(they would know what tests to do) they didn't!! 
Gave me the name of the specialist nurse and ext. no, after I asked whether she should have access to one.  Was not a specialist nurse in Hep C but bowels!!  Apparently the locum she saw in April who gave her 3 month prescription was not a Hep c specialist either!
After talking to the so called specialist nurse she arranged for the blood test forms to be sent out and they arrived today!
GP was amazed at lack of monitoring also.
Someone has made a big mistake but I am hoping that she will be looked after in the future.  Or heads will roll.
Goodness my life has been taken over with daughters treatment, I never thought I had it in me.  Suppose when she is over this my life will seem very boring!!  Can't wait to find out though!!
Love , Maggie

[Lelee]

Hi Maggie

Well I've been back nearly a month now. I'm sorry to say that your daughter's treatment doesn't surprise me at all. It would be good to hear about a treatment process that went well. My oldest son is dual diagnosis and i could write several books about his treatment journey....or the lack of it.

Both my son's went to live in Australia years ago when their father moved out there. One was 17 and one 15. the younger one is now 29 and still in Australia and would never come back to England to live he loves it there so much. The older son is the more vulnerable one and came back for good about 7 years ago.

It was the usual story, life didn't work out as he hoped. His father threw him out a few weeks after he arrived in Australia, he began living on the streets but he wasn't equipped or wordly wise having had a sheltered upbringing brought up in a small village. He progressed to injecting speed which messed his head up. He then used heroin when he was 21 and felt all his troubles melted away but in reality all his troubles had just began. He began commiting petty offences to fund his habit and ended up in a maximum security prison in Australia and that did him so much harm mentally he's never recovered. On top of that he's experienced severe trauma since that has compounded everything. When he's well again his wish is to return to Australia.

My other son is really happy, living the life he wants in Australia. I'm proud of them both. Who knew when we had children what it would all involve? I didn't realise that I'd worry about them all my life. I thought once they got to a certain age that was it. How naive! My life does tend to revolve around my sons a lot, much like you and your daughter Maggie, but I think that's natural because if they're not okay then nothing is fully okay. I think as parents we have a natural instinct to protect our children no matter what their age.   

How is it all going for her and for you?

Linda x