New diagnosis

Hi. We just found out that my fiance has Liver disease. We knew something was up because his eyes and skin were very yellow and his ankles were swollen with oedema, but to have it confirmed is both a shock and a relief!

He stopped drinking immediately when given the diagnosis (13 weeks sober now). It wasn't easy but his stubbornness and determination to live carried him through. Now he is working on quitting the smokes. I am so proud of the strength he is showing right now!

Almost overnight I have become his carer and he needs me to do almost everything for him. I love him to bits and intend to spend the rest of his life with him but I must admit I am finding it difficult to remain positive. I am hoping that people in this forum might be able to help me to see the light at the end of the tunnel?

[Identity75]

Hi,

You'll find a great bunch of people on here all willing to offer help and advice and try to answer any questions you may have.

Has he been referred to a liver specialist yet?

It can be a long bumpy road but with your support and you will need your own support network too you can get through all this.

Wishing you all the best

[Hidden in reply to Identity75]

Hi thanks for your reply. We have seen the specialist who is closely monitoring my husbands health and we have a great support network of friends who I know will be invaluable once they recover from the shock themselves.

Thank you for your good wishes

[dianekjs]

I'm sorry for your fiancé's liver disease, and am glad to hear he is taking positive steps regarding his health. What is his exact diagnosis, stage, etc.? If he hasn't seen a liver specialist yet, getting to one should be top priority. There are different liver diseases with different associated prognoses and characteristics. What has your fiancé been told?

[jojokarak]

I know exactly what you mean about relief and worry all at the same time.

My husband was my carer for 5 years. I am not going to lie it hasn't been easy, but if you love him like you say you do it will be worth it if he needs a transplant, as you never know he may be able to turn this around the liver is an amazing organ and can regenerate if it is stopped being abused. And brilliant news he has stopped drinking, he will need to change his diet and exercise and 6 months down the line you could have a totally different outlook.

As has been mentioned you will need a support network of your own so if things do get rough you have people to help you out so you get a break.

Just check with his consultant what stage he at x

[Hidden in reply to jojokarak]

Hi Thank you for your reply. We have seen a Heptologist who has told him he has Cirrhosis with a CP score of 9 and a 65% 2yr survival chance. He was also told that he would be considered for transplant if he gave up smoking, which he is working on.

It all sounded very dark and scary when the Dr first told us but we are trying to stay positive and think at least it is the right side of the 50% mark so there is some hope.

We are planning our wedding for September of this year too so that is another positive to focus on.

[jojokarak in reply to Hidden]

I gave up smoking, started again, stopped lol smoking is worse than drinking to give up, I ended up just cutting right down to 3 a day and I was honest with consultants and I still received a liver.

Congratulations on your wedding 💒 x and rightly so it's something to look forward too.

Which hospital are you under? Where do you live?

[Hidden in reply to jojokarak]

Hi. Thank you for your reply. That is good to know with regards to the smoking, my fiancé has cut down from 30 a day to 5 in just 3 weeks. We live in Hampshire and he gets his treatment at the Royal Hampshire County Hospital in Winchester

[Identity75 in reply to Hidden]

Hi Swinka, are you certain your other half is being seen by a liver specialist? For someone in your area you should be getting a referral to Kings in London.

Forgive me if I'm wrong or have my facts incorrect but it's important that your partner receives the correct treatment from the right people.

[Hidden in reply to Identity75]

Hi. Thank you for your reply. I know that the doc we see is a Heptologist so I thought that was where the buck stopped, I didn't know that there was another avenue to go down. (I am learning so much so fast!) Thank you for your advice I will talk to the medical team we have and see if we can get a referral.

[AyrshireK in reply to Hidden]

If it's a hepatologist you're seeing that's fine and hopefully they get things under control for your fiance BUT if he deteriorates further and no one mentions transplant do push for a referral to one of the London centres for another opinion or to get him on the radar of the transplant teams.

At the moment with only 13 weeks abstinence he wouldn't yet be considered for transplant .... they require a minimum 6 month proven abstinence period before they'd consider transplant but he'll give himself the best chance of reversing some of the current liver damage if he maintains his alcohol free lifestyle.

All the best to you both,

Katie

[Hidden in reply to AyrshireK]

Hi Katie thank you so much for your advice. I am new to all of this and I am learning a lot about liver disease but I know there is so much more that I DON'T know! It is great that there are people out there who can help to educate me because I want to do everything possible to keep him alive. We will make sure that he stays away from alcohol so that he can have the chance of a transplant (we are even planning an alcohol free wedding!)

Thanks again for your help.

[Ruthy1973 in reply to AyrshireK]

Hi, my hisband was diagnosed 15 years ago and has gone through every symptom and been on deaths door and pulled through. He quit drinking 6 years ago, changed his diet, and has now been put on the transplant list but the liver is marvellous. It stablised itself for a couple of years but he gets enceolapathy after having a TIPS operation on his liver so still needs a transplant. The waiting is awful though

[Hidden]

Hi,

A warm welcome to the forum.

As the followers have already said, it is important that your partner is seen by a heptologist soon.

You may find The British Liver Trust publications useful to look at, here is a link to them;

britishlivertrust.org.uk/pu...

We also run a helpline which is open 10-3pm Monday to Friday on 0800 652 7330

We hope you find the forum a supportive place to visit,

Rebecca

[Hidden in reply to Hidden]

Hi and thank you for your welcome. Thanks also for the link to the publications, I will certainly read through them all and learn as much as I can.

I have only been registered on this forum for a couple of days and the people on here have already given me so much advice and support. Thank you again.

[Kl61]

Hi, my partner was diagnosed 15 years ago after a bleed collapsing and being in a coma for a week! He stopped drinking and had 13 years of good health, followed by a couple of hospital admissions for problems. He is now being assessed for transplant. He still has a good quality of life. So don't despair things can get better.

[Hidden in reply to Kl61]

Hi and thank you for your reply. What you have said has given me so much hope. I was beginning to believe that I would lose him almost as soon a we were married! But now I know that (may) not be the case I have hope again that he will get the transplant he needs and deserves and then we can live a normal life together, Thanks again.

Good luck to you and your partner, I hope you get some good news soon.