Support/advice

[Ruthy1973]

Hi, my husband is on the liver transplant list and is getting anxiety waiting. He’s not sleeping, hence neither am i. He’s had cirrhosis for years but has not long gone on the list. He isn’t usually a worrier, i do all that. Would just be nice to get some support as it is such a stressful time and famil don’t seem to understand this.

[jojokarak]

Hiya and it is a stressful thing to be on the transplant list, everyone has there own way of dealing with it... I personally just put to the back of my mind and tried to enjoy each day... He could be on the list for a few months to a couple of years, I am sure over the next few weeks you will both just cope with it

Also cirrhosis does cause insomnia, you need to get some sleep both of you being sleep deprived is not going to do any of your state of minds any good, and as we all know it makes us snappy, irritable, moody

[Isabelle2]

I agree with jojo. I had terrible insomnia. Try not to think about the list, otherwise it will rob you and him of all your energy. Keep things normal, you must learn to live with him being on the list. It might be some time.

Isabelle xx

[Barnetaccounts]

Hi Ruthie,

The wait on the list is the great unknown. How long we wait is the unanswerable question. Many get called relatively quickly, others can wait years. I waited 18 months personally, had 1 false alarm and a few days later it was all systems go. Unfortunately my transplant was aborted due to a massive haemorrhage I suffered, and I was transfused with 25 pints of blood and my wife was told that I would be dead in around 24 hours. That was over 18 months ago and I am in rude health and my diseased liver is still doing it’s work. I write a blog about my cancer journey and everything it entails. The diagnosis, a resection, Cancer returning, getting on the list, my near death experience etc etc. It can be found at 1liver1life.wordpress.com and hopefully you will get something from it. Your husband must just stay positive and keep looking forward to your new life. I hope your wait isn’t too long and everything goes well.

[Hidden]

Welcome Ruthy,

The British liver Trust have a lot of information on our website regarding cirrhosis and also liver transplant.

Maybe you'd like to download it and show some of the family to help educate them about the condition and how it may be affecting your husband?

britishlivertrust.org.uk/pu...

Alternatively, you can order some hard copies to give them?

If you'd like to chat our helpline is open Monday to Friday 10am to 14.45 on 0800 652 7330

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

Kind regards

Trust1

[Smyally]

I am also on the waiting list. Been on for 5 1/2 months now. When I first went on I was full of anxiety because I was weak after being ill in hospital for a month. But as time passes you do settle down and get back into the routine of daily life. I also find that outsiders find it hard to understand the situation

[Hidden]

Hi

I really hope you get the call very soon, we are all here for you . Love and hugs Lynne xxxx

[X19Dave]

Hi yes it is a worrying time but it can be a very long wait depending on how bad he is, we were lucky in a way my wife was so bad she got hers done in about 3 months

It is difficult for family who are not there they do not know what to do to help so they feel it is better for them to back off and it can feel like they are not helping at all sit down with them fully explane what has happened what is going to happen and what help and support you need from them they are not doing it on purpose they just do not know.

What I will say it is the best thing that can happen to him they do loads of these ops so there is no need to worry about the op, he will feel so much better post op and after a few weeks will be back to his old fighting self, when my wife had hers done I walked in to her room the next day as soon as I was allowed in and asked where is my wife I can honestly say she looked at least 10 years younger and that was the day after transplant.

I know it is hard but you both need to relax except it is something that must happen and it is for the best and you will both feel much better after it is done and let the hospital help you and questions just ask they expect questions they are there to support you as well

DO NOT WORRY JUST LET IT HAPPEN

We are all here to give you both support

Dave

[1football]

Hi

Being on the list for me was just the worse thing, firstly thou you’ve made the list so hopefully you will get a new liver and it will transform your life so try to keep that locked away somewhere..I found I had periods of fairly decent sleep and life to be fair and others of total insomnia and to weak to walk to the shops just keep thinking it will happen and when you least expect it.

Is he managing to work?walk? DIY.

I waited 17 months and had mine last Sunday & a friend in here had hers yesterday & been waiting 18 months but also depends on how poorly you are some on here have waited days so there really is no time limit

Huw

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