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Posted 2/7/2011 9:09 AM (GMT 0)

Hi everyone,

I am new to using a forum, although I have been viewing this one for several months now, and have finally taken the plunge to create a profile.  I have learnt so much from this website/forum.  Thank you to everyone that contributes.

I met my husband in 1997 and we have been married for four years.  He has been diagnosed with Hep C, and a severely decompensated liver, ESLD.  He has known about the Hep C since 1996, but never told me.  We have been fighting this terrible disease since mid 2010 when he became jaundiced.  I went to the Doctor with him and we found out that ‘you should not drink’ translates to ‘continuing to drink is a death sentence!’  He has been alcohol free since that day in June 2010.

After many appointments the specialist will now be recommending John for assessment for a transplant.  We just hope it is soon.  He will be going to our local hospital for tapping again on Wednesday, and is carrying a huge amount of fluid. 

We live in South Australia and I wonder if there are any other Aussie’s on your forum, or whether you know of any other forums like yours based in Australia.  It would be handy to chat to someone who may be in the same position a little closer to home, and who might share experiences of transplant in Australia.  Regardless of that, it is extremely comforting to know that there are others who are facing the same challenges, and my heart goes out to all the sufferers, care-givers, family and friends. 

Wishing you all good health...

Posted 2/7/2011 6:17 PM (GMT 0)

Goddess, hello, and welcome to the forum!  I am sorry that your husband is fighting this disease.  However, the very best thing he could've done was to stop drinking.  If you've been reading the posts on here, you probably know that in the USA, 6 mos. of documented sobriety is necessary for a transplant.  I don't know what the requirements are in Australia.  Has your husband been going to AA or another program, or has stopping the booze been easy for him?

Did your husband ever look into hep C treatment when he was first diagnosed?  I have to think that it was available in AU by 1996.

Unfortunately, I can't recall anyone on here from AU.  We do have some from the UK and one from S. Africa.  Also, I don't know of any liver forums specific to AU.  Have you checked out the Yahoo forums?  I believe they have a hep C forum and it's possible that it's more international...not sure.  You could also check out http://www.hepatitis-central.com/

Remember to take care of yourself in this journey.  Also, you might want to get tested for hep C, if you haven't already.  While the chances of transmission are slim, if you've ever used one of his razors or his toothbrush, there's always a chance that you could've picked it up.

Hugs,

Connie

Posted 2/7/2011 7:26 PM (GMT 0)
Hi Goddess,

Im from the UK - things are very different hospital, insurance, transplant wise over here than they are in the US.

However - whilst I have all the symptoms of decompensated liver diseas - and the alcohol history to cause it - I havent been to a doctor (fear factor).

This does not preclude me from directing you to an Australian forum - http://www.hepcaustralia.com.au/forums/ - I am sure the mods here will allow this - because you really need to be a member there for information relating to your country specfically.

Being a member here though aswell - will give you loads of support in other ways for certain.....  and liver disease is the same for everyone no matter where they live.

MrE
Posted 2/7/2011 8:26 PM (GMT 0)
Hi,

I am from Australia. One of the best Hep C forums around is http://hepcnomads.co.uk/phpBB3/index.php It has members from all around the world including Australia, it also has quite a lot of liver transplant patients.  The Australian forum mentioned above is not very active and I do not believe has anyone on it with experience of liver transplants. 

Posted 2/7/2011 9:00 PM (GMT 0)

Hey, Hepmom!  Didn't realize you are in AU.  Thanks for helping out Goddess!

Hugs,

Connie

Posted 2/7/2011 10:40 PM (GMT 0)
Hello Goddess,
I belong to a transplant forum with members from all over the globe. Most of the folks there have had transplants, though many are awaiting one. I'm not going to post the addy, but feel free to email me and I'll be happy to send it along. That goes for others here. Be well.
Posted 2/7/2011 11:12 PM (GMT 0)
Hi Goddess,

I'm one of the Crohn's moderators and tend not to be active on the liver forum, but I thought I'd pop over and say hello because I'm Australian too. If you ever want to whinge / talk about the health system, Centrelink, whatever, please do feel free to pop over to Crohn's and find me: I like to talk to our fellow-Australians.

I don't know if you've read "Tiger's Eye" by Inga Clendinnen? Inga C is from Melbourne and went through a liver transplant, and wrote about it in Tiger's Eye. You might like to read it, just for a longer first-hand account of what the process is like here (well, in Melb).

All the best to you,

Ivy.
Posted 2/8/2011 8:02 AM (GMT 0)
Thanks everyone for your quick responses. I will follow up the links and advice as soon as I can.

Right now, we have had a small setback. John was due for tapping tomorrow and had his bloods taken yesterday. His potassium is so high and his kidney function is compromised to the extent that they have flown him to Adelaide (a 40 min flight from here) for attention there. They are hoping to get his kidneys functioning properly and then do the tapping there. I will be joining him tomorrow. To add insult to injury, its his birthday today. Some present!! Lucky all the pajama's, dressing gowns and slippers came in handy.

We are in the midst of planning my daughters 21st on Saturday, so as usual, when it rains it pours.... I will have a bit of juggling to do.

Here's hoping for a good outcome and quick return home. I'll let you know how we get on. Thank you so much for your support. I had no idea there were residents of so many different countries on your forum. Congratulations on setting up this wonderful helpline! xx
Posted 2/8/2011 9:51 AM (GMT 0)
All the best, Goddess.

btw, have they given you forms so you can get assistance with travel costs?
Posted 2/8/2011 7:02 PM (GMT 0)
All the best, Goddess, and Happy Birthday to your hubby and daughter!

Ivy, thanks to you, also, for your help.

Hugs,
Connie

Posted 2/9/2011 8:49 PM (GMT 0)
Hi Goddess,

I'm an Aussie in living in North America. Welcome and hello ! Wishing you and your husband all the best :)
Posted 2/10/2011 2:28 AM (GMT 0)
will be thinking about you and hoping the best Sandi
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