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Hi LG

Im stoked you had a good MRI experience I sometimes work in MRI with children who need to have their brain scanned and require a general anaesthetic and adults too who for various reasons need to be asleep for the procedure.
YES the technology is bloody amazing as its so definitive as a diagnostic tool.

It must be reassuring for you to have confirmation that your lifestyle habits have been advantageous for the overall health of not just the liver but you as a whole.

Yep now it UND time for you and me, Ive got my next one coming up on the 24th March, when is yours? Edit that I have just got off the phone from my liver nurse and we are going to test VL tomorrow and again on the 24th

Wow my daughter is a tough cookie reading this thread
Since age 9 she's done epilepsy MRI and takes it easy
Anyhoo she just rang and is in ER for the second time in four days and yesterday I spent half the day with her seeing her doc
Soooo I have to get to the city again even though she said she can tough it out alone
She has more than epilepsy she has hashimotos and stuff so I want this resolved her recent issues
Just hung up when I was reading this thread all about MRI
Take care xxx
Ariel

All the best for your daughter and you Ariel.......

Take care Ariel hope your daughter is ok x

Hi Tina, Was just thinking of you

The MRI scanner is an amazing thing, but I didn't have a normal MRI, this is part of a trial that will hopefully reduce the need for patients with liver disease to have invasive diagnostics, It's tied up with a brilliant new system for getting precise fibrosis details, liver damage, iron and fat levels and also has a predictive element as to how the liver damage may procede. It could replace the need for many needing to have biopsies and is so far proving itself to be an exciting new option for patients with liver disease. There is also no need for contrast dye. The images produced are in full blown colour portraying the levels of fibrosis in the liver by different colours. Blue / green is mild Dark orange /red is bad and yellow sort of midway. I can't wait to see my report in writing

It's about time they did sonething for us liver patients and itt's already in use in that top Oxford hospital for patient benefit. I guess the trials (which are continuing) raise the hope that this new diagnostic could be extended across the UK and indeed the world. I do hope so. It's a much more visual thing for patients too, as with past fibrosis markers, we don"t get to see anything! So I guess, more reassuring that the test is correct. The Dr who invented it is a lovely man fighting our corner as he says liver diagnostics & treatment are 20 years behind other conditions and why he got involved. He's quite young, clever and I could tell 'thinks outside the box' with passion, a bit like Fix HepC - A pioneer.

Yes it was reassuring, more so that I didn't have cirrhosis! I was told by the Doc considering I have had HepC for so long, my liver was remarkably in good shape and he said no fat and iron levels pretty good too. Great, but I don't want those nasty little virus attacking it any further and stopping them now is the deal, as for all of us.

Glad your nurse is keeping a good eye on you and everything crossed for the desired result! I was talking to an infectious diseases nurse yesterday at the hospital, he cleared the virus on the Abvie tx not so long ago, He never went UND on tx, EOT 15, then a few weeks post EOT up to 50! then all of a sudden wham - at 12 weeks EOT - UND! Quite an emotional ride for him. This HepC business is just that, such a roller-coaster!
Thinking of you

Ariel, love also to your daughter, nothing pulls the heart strings more!

Wow Im well impressed with the MRI and its use in accessing liver damage and most importantly its a non invasive procedure. My hat is off to the Doctor advocating and proving its value in liver disease management.
Do you get a scanned copy of the images too as they would be cool to see.
I cant begin to imagine the relief you felt to be told you are not cirrhotic - big weight gone. Now just that UND...

My nurse rang me tonight and my Alt at 2 weeks post EOT is down from 14 to 12! so thats reassuring

Thanks to yourself and Darbara for posting up those threads from other forums - i had a read of them this morning. Yep is so true about Hep C being a roller-coaster ride and needing a will of iron - such a nice feeling to know we have this forum to help keep us up when we fall down from time to time. xx

Wow Im well impressed with the MRI and its use in accessing liver damage and most importantly its a non invasive procedure. My hat is off to the Doctor advocating and proving its value in liver disease management.
Do you get a scanned copy of the images too as they would be cool to see.

Yes, apparently I do - Waiting on report.
If I post it, you can't say I don't share everything with you guys


ps Great Alt !

How are you traveling LG? Xxx
Any updates from your side of the globe have you got any news in yet
Thinking of you xxx
Ariel

Hi Ariel, "For whatever reason I am a slow responder".
VL 32 at mid week 9.
Feeling alot better, but have to extend.
All other bloods good.
Got MonkMed Dr Debasis & Dr F on it.

Thanks for asking
LG

Hi there hun
Thanks for posting
I'm sure that's the best thing damned nuisance but maybe that bug you had messed things up mid tx and now you have cleared the infection your good to go for round two
I'm not going anywhere when I finish my EOT so I will still be supporting you on from the next round.
I'm glad you're playing it super safe we just have to do what it takes yeah?
Keep posting because we will all be backing you on this news
You got a good liver report that's another positive too big relief.
Are you adding six or twelve weeks? Xxx
You're in good hands that's the best thing too. We are all really the first global group after trials finished so I guess it's going to be a while before any really concrete data is available on tx duration, EOT outcomes etc on a large scale
Keep strong xxxxxx
Ariel

We are all really the first global group after trials finished so I guess it's going to be a while before any really concrete data is available on tx duration, EOT outcomes etc on a large scale

You ain't kidding - There's a little on treatment fails / re-treatment and options etc, I can't find anything at all on slow responders like me apart from patient experience on US forums.

All news in from liver meets seems to be about new drugs and sell sell sell
I 'hope' there will be more and more papers from the likes of London's professor Dusheiko and his kind, but I'm not holding my breath and anyway, I don't have time to wait, need to extend now.

Thank heavens I did not go NHS - I have support from MonkMed, FixHepC and good HepC friends and the opportunity to extend.

Thanks for your support Ariel

Everything Arial said!! And don't worry, MM & FHC will sort it.

Ah LG the eminent Geoff Dusheiko yes I had a referral to see him when I was considering a purchase through Alcura around fifteen months ago ..... but fortunately this marvellous site came up and my mortgage didn't wind up groaning even more under a trip to London and a 45 k pounds price! No price for health I say. But sometimes it is just too ridiculous and that option was beyond me for sure!
What a coincidence! I hear and read excellent things about Geoff. I was referred by my Sydney chap who wound up writing my script here, as I couldn't find anyone in Victoria to write one. I'm here now the rest is history! I was trying to find ledispivir in India before that too but couldn't I could only find Sofosbuvir so couldn't fly there and save my neck. Gawd we have landed in the best place that's right here.
I must say I really exhausted so many leads due to cost prohibitive and just being led up the garden path then bam this miracle happens here!
I'm glad you're backing up your tx with an extension its super smart choice making
I would do it in a heartbeat if any sneaky mutants from old tx pop up instead of SVR I already have a plan of attack. It's all about the cure here and we are just so lucky so very lucky.
Xxxx
Ariel

HI Ariel, yes, Geoff Dusheiko was my wonderful old consultant. Good old fashioned, hands on Dr who checked BP, heart rate, reflexes, eyes, hands, all bloods in detail (scribbling mathematical notes and equations etc) He was the head of the Royal Free for years and did awesome work - Loved him. Unfortunately, he wanted to semi retire and do part time, although still writing important medical papers on liver disease etc and lecture, speak at conferences etc - but the hospital didn't want to pay out to keep such a knowledgeable prof on (from what I can gather) - The nurses told me they were all in tears when he left. He answered my emails personally after he left and recommended I get an USound scan when I had a strange heart-beat thing going on center abdomen just below ribs and 'push for treatment'. He was replaced without warning by the blythe (to use dt's perfect word) young Dr who totally upset me and refused to listen to anything, just lecture me on how there was no hope of tx in the near future and no more diagnostics and left me very frustrated and upset after our 'consultation' - So I changed hospitals as I had chosen that hospital because of the Prof being there. The lovely Prof Dusheiko emailed me and said how sorry he was that he wouldn't be able to see me . He has written some excellent patient-centered articles which I have enjoyed over the time since being diagnosed. I believe he may be working PT at the other top London liver hospital Kings, but a not up to date re that currently. A great man and the Royal Free will not be the same without him.

LG xx

So pleased to hear about the great news re your cirrhosis, LG, woohoo! Definitely a great weight off your mind, that is awesome


Sounds like you are absolutely heading in the right direction now too Tina - anything downward on your VL is promising. Onward from here, have everything crossed for you