Bad news????

[craigspooky]

Hi all. Hope everyone is well. I haven't been on the site lately because last time I saw my consultant, everything was progressing reasonably well. Had my first face to face appointment yesterday since the corona virus outbreak. Talk about a bolt from the blue, I was told I was going forward to the transplant programme. When I asked what had changed, I was told that initially my progress was going really well but as is quite common, it has plateaud and now showing signs of getting worse. I haven't drank alcohol for 3 years and honestly don't miss it. Whilst I have accepted the situation with my usual what will be will be attitude, my wife is worried sick. I have a few misgivings about whether I deserve this chance as my cirrhosis is self inflicted. I was told that without a transplant, I am looking at a 5 year life expectancy. Any tips to help me get my wife through this would be greatly appreciated. Thanks in advance C.J

[Laura009]

Hi Craig.

I asked that exact question of the consultant of my dying husband when he said he would need a double transplant (liver and kidneys) ...

" This is a self inflicted illness, aren't there more deserving cases of these rare precious gifts?" He smiled at me and said hes a very sick man and whatever the cause it's our job to try to save him. From then on l felt that if our NHS is prepared to do whatever it takes to keep him alive then who am l or anyone else to judge? There are so many successful transplant cases on this forum, a whole list of them mentioned on a previous post just a few days ago which I'm sure will give your wife a boost and you both a whole new lease of a much longer life. All the very best to you going forward.

Laura

[craigspooky in reply to Laura009]

Thank you for your kind words xxx

[Laura009]

See .... Liver transplant success stories... whatdowedo post ... 4 days ago

[Hidden]

Hi Craig,

It must be very overwhelming to receive the news that you may need a transplant. However, there are some amazing members on here who have had the transplant and will support you throughout it.

We have some useful publications on liver transplant you may want to take a look at:

britishlivertrust.org.uk/in...

Keep talking to us, you are not alone.

[TT-2018]

It definitely comes as a bit of a shock to be told that you need a transplant. I am nearly two years post transplant and have gone through loads of emotions. To be considered for a transplant assessment is a step forward and means that you have listened to and followed all the advice the doctors have given you. With an alcohol diagnosis, the criteria is extremely rigorous.

I think that it’s fairly common to blame yourself but nobody chooses to get poorly. Healthcare is not determined by lifestyle choices.

It is definitely not an easy journey but I wish you every success and a positive outcome. You will definitely receive the very best care and nobody will judge you.

Best wishes,

Mark.

[hells456]

It's natural to feel guilt over this, but I firmly believe that if someone needs a transplant it should make no difference WHY they need it. I have an autoimmune disease and will probably need a transplant in a few years and I will feel just as much guilt because we will always think someone else is more deserving.

You didn't choose to become ill. You did choose to not drink, and at a time when you need support you are thinking only of your wife. You definitely deserve this. I really hope you will have as easy a journey as possible.

[Rugby50]

I Craig hopefully you will be on the mend soon , have you got decompensated cirrhosis I stopped drinking 10 months ago at the minute I’m Advanced compensated cirrhosis what ever that means I had a fibroscan result of 75 kPa not long ago , just wondered anyone out there know when fatigue subsides and does compensated go to decompensated when not drank for 10 months any advice would be great instead of googling information.

[Hidden in reply to Rugby50]

At the start did you have decompensated liver.

[craigspooky in reply to Hidden]

Yes I did

[craigspooky]

Thank you sincerely for all the great advice,encouragement and kindness. It really does mean a lot xxx

[Hidden]

Hi what stage cirrohis do you have ?

[Hidden in reply to Hidden]

That's for Craig spooky

[Lam1e]

Hi Craig

I know this will be a big shock to you but I cried many tears as at the same time I got told I was on the transplant list a younger woman was told she was not going into the list! My liver nurses were great helping and supporting me ( I used to have to go to have drains a lot so I spent days in the hospital)!

Look on this as a new start and it is an amazing gift 💝

Love yourself for who you are and not who you are not🙏

Lesley

[Dogbot]

Hi Craigspooky

What wonderful news you will get a second chance to maybe make your wife happier than she was when you were drinking, enjoy the life you have been so lucky to have been given a second chance , do things that the two of you have wanted to do 😃. Alcoholism is a sickness that can get anyone I know I was one now the wife and I are moving from our family home which is a bit sad because of the memories we have to a nice little bungalow that we are starting our retirement faze another stage in our happy life 😀. You and your wife deserve happiness enjoy 😉.

Stay Safe All

Dogbot 🐶🌈

[craigspooky in reply to Dogbot]

We are doing exactly the same. Just going through moving from our family home (23 years) to a bungalow on the coast in North Wales. Can't quite retire yet so money is a worry as I realise I will be out of action for a good while. But I'd rather be broke listening to the sea than listening to traffic. Thank you so much for the encouragement and support. The kindness is truly humbling xx

[mattymoo33]

Hiya craigspooky. I was where you are in February 2019. I was accepted into the list after my progress plateaued and I had a couple of emergency admissions. I decided to get fitter to help with recovery. I was called to Addenbrookes last September (2nd time) to be told I was "too well". At Christmas I had 3 admissions with HE and then re-listed. Which is where I am now.

Advice for your wife;

Talk as much as you need to, to whomever will listen. You, family, friends, liver nurses, forums...

It's a difficult process, but both of you will be supported as much or little as you need. You will be given lots of opportunities to ask questions...start writing them down.

I wish you the best of luck and happiness.

Stay strong 🌈😊

[Epolenep]

It must be a huge shock for you both - but you are blessed to have the opportunity to have a transplant

It’s natural for your wife to worry - she obviously cares about you .

The transplant teams are amazing and know what they are doing , just believe in them .

You do deserve a second chance . You maybe not able to change the past but you can look after tour new liver in the future

Good luck

[Splodge60]

Hello dear wife of craigspooky

I know you may be worried or concerned right now but, I hope you don’t mind me saying that just be extremely thankful that your hubby has got this wonderful opportunity. Some of us have never drunk alcohol at all yet cannot even be considered for a transplant. He is one very fortunate man. Just try and remember that and your spirits will remain positive, I hope this helps???