British Liver Trust
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Concerned wife

Hi I’m just new to the group and looking for some advice my husband is awaiting a liver transplant and we talk all the time about it how he feels is he worried and try to be really positive about it he says he is really excited about getting his transplant and feeling well again he just seems to be tired and sleep all the time he had a scan last week and they said he also has an enlarged spleen and has been jaundice for the past 9 months it’s so hard seeing him like this when we are talking about it I always appear strong but really when I’m on my own or talk to anyone about it I feel so scared I try to keep positive but it’s so hard does anyone else feel the same or do I need to give myself a shake and stop stressing about it

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Hi

I had a transplant 10 months ago. Before it I was in a poor state, tired, jaundiced, confused (HE) and really going through everything as if I were in a dream. Today I work part time (I did before) and go to the gym and do aqua-gym. The exercise is new. I also work 1 day a week at a food bank. My life has completely changed.

As for the op, I had almost no pain afterwards. For a few days I was a little out of it and had some really weird dreams. It took a few days to get my appetite back and I was wobbly on my feet at first but once I came out of hospital I was able to gradually build up my strength.

Please don’t worry. It must be awful to be the loved one. We are so full of our feelings and physical concerns we forget that those closest to us must be going through hell. I am lucky that my husband and our two girls are very close and could pull together for support.

I live in France but I am sure that the transplant centre co-ordinator must be able to help with a support group or something similar .

I hope he has the transplant soon and that it works out as well as mine.

Sending you love

Isabelle

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Thankyou very much my husband also has HE but it’s really good to hear there is light at the end of this very large tunnel I am so glad you are feeling a lot better thankyou for your kind words xx

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Hello,

I had a transplant last October. I wasn"t really worried when I was listed but then the doubts and worries set in. As time passed I just dealt with it and I wasn't really scared just on tenderhooks for the call. My thoughts were, yes I am going to go through a massive operation but I can look forward to the future. As we all know there are risks, life is full of risks, these surgeons are the best in their field and you will be good hands. One thing which amazed me was that after only 3 days I was able to walk down to the shop.

I had my transplant at Kings, where is your husband having the operation?

Stay positive and look forward to a healthy future.

Best wishes

Paul

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Thankyou my husband is having his transplant at the queen Elizabeth hospital Birmingham I’m so glad you are doing so well hope you have a long and happy life x

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Well said and gives me encouragement-I’m Listed for Kings also. I’m trying to be pragmatic and not get hung up on watching /listening for the call.

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Fantastic team at Kings. I was there in clinic yesterday

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I was so impressed when I was an in patient at Kings for pre-assessment. I have a fantastic team caring for me at home (Belfast). They along with Liver team KCH are awesome nothing is too much trouble. I’m amazed how quickly you were walking to the shop at KCH as I know that I’d quite a distance

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I couldnt stand the hospital food lol!

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Really Paul I thought it was really nice. Given a lovely glossy menu with many choices daily (saltless mind you) I hhought I was a private patient rather than NHS 🤣🤣🤣

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The problem I found is that they didn't change the menu. Truthfully the qualty of the food was good. When I went for the assesment I stayed in the Listen Lodge in Caldecot Road with my wife. We were self catering

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Yes I was an in patient. My daughter was supposed to stay at listen lodge but social worker contacted me prior to going to say the front door was broken and that she would have to wedge it open with something otherwise door would lock and she wouldn’t be able to get out!!!!! Crazy or what? Anyway it is stressful enough dealing with this illness without being being anxious about her safety so booked her into hotel close by.

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It's completely normal for you to be feeling that way... Me and my husband were the same we talked about everything, because he was my carer we had too.

I knew he wasn't coping and I encouraged him to go to our GP but he wouldn't I don't think he wanted to admit that he wasn't coping it took until after my transplant and he felt he didn't have to hold everything together anymore that he crumbled and seen a counsellor for six months ...

He then admitted being a carer for someone he was in love with and having to do everything for me, he never had time alone as I couldn't be left alone and cooking, cleaning, shopping, bills and having no physical relationship with me was the worst thing ever and also to watch me waste away over years physically and mentally wasn't easy, so it's no surprise you are finding it hard.

Hopefully you have friends, family in your life you can share things with if not I do encourage you to see your GP you need to look after yourself just as much as him x

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Thankyou ever so much for your reply to me it really helps to be able to talk to someone I have my children who are all adults now but they need me to be strong for them too if they see me falling apart I don’t think they could cope it’s hard seeing someone you love with all your heart suffering my husband has gone from a man who worked every day of his life to a man having to rely on me to help him do everything I think what hurts the most is knowing his brain still feels able to still do everyday jobs but his body won’t let him it’s heartbreaking x

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Do you know that there is a Liver Support group at QEB? Most of the transplant centres also have pre and post liver transplant support groups though I can't find details of the QEB one - maybe another Birmingham patient might pop up with details.

The details for the general liver support one is -

Queen Elizabeth Liver Patients Support Group

Meets at Queen Elizabeth Hospital, Birmingham.

Alan Hyde

liversupport@blueyonder.co.uk

uhblsg.org.uk

01902 679333

For my part I am supporting my hubby who was diagnosed with advanced cirrhosis due to auto-immune liver disease in April 2012 - he was eventually listed for transplant at Edinburgh in June 2014 and we spent 10 months 'living on the list' , however, in May 2015 they decided his blood results had improved (although symptoms hadn't) and he no longer met the criteria for transplant so he was delisted and we've gone back to the watch and wait stage. My hubby was very active and fit before diagnosis and also worked in a hard and physical job - sadly he too has lost this fitness and stamina and abilty to function independently and I find myself his carer too.

You are certainly not alone on here in being the carer and loved one of someone battling this horrid condition.

All the best to you both, hope the call comes soon.

Katie xx

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Thankyou very much Katie I hope you and your husband get sorted soon the wait is horrible not knowing what is happening xx

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We are just ticking along, it was a bit of an upset when they delisted him but we hope if his condition worsens he'll hopefully get his chance again. We make the most of good days and our freedom - off caravanning next week for a change of scenery.

Katie xx

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Hi Katie I think it is such a shame your husband has been taken off the list you go through so much before you can even be added to the list let alone being removed I hope your husband is put forward again for transplant I hope you have a lovely holiday and I hope things work out for you both and thankyou again for your support. Donna x

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So very true

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You are not alone I have cirrhosis and it has put my wife under alot of pressure, there are times when she is understanding towards me and other times she hates me for what I have done to myself,its the unknown,how long before I deterriate so many unanswered questions the pressure is enormous,just try to keep on smiling I wish your husband the best.

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Hi I am sure that your wife is just so worried about you and the unknown of what’s going on that’s how I feel I hope you get the call soon to have your transplant and thankyou very much for responding to my post wishing you well thankyou Donna x

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Hi, I underwent an attempted transplant 18 months ago, although that was unsuccessful and I was removed from the list immediately, I would not be here today without the strength and support of my long suffering wife. I am sure she has her moments when she is on her own, but so do I. When we get this news, we need support, but sometimes our supporters need support too. It is a team effort and once (hopefully) he has had his transplant, you can both look forward to a long happy life together. I write about my cancer journey and it can be found at 1liver1life.wordpress.com I hope everything works out well for you, but please use this forum for support and a place to share freely.

Ray

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Thankyou ever so much for your kind words I have been worried that when my husband has his transplant his body may reject it what happens then I don’t know do you stay on the list for the docs to try again or are you removed from the list I just don’t know. Donna

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With the newer drugs rejection is getting less of an issue, however, it can and does occasionally happen as can issues with post transplant blockages in liver etc.

Sometimes this happens almost immediately and during my hubbies transplant assessment we were told they had had patients who woke from surgery to find they'd actually had two transplants as the first had failed - in this case the patient would go onto the Super Urgent list and be the highest priority for any matched liver from anywhere in the UK and sometimes they are kept in a medically induced coma to reduce stress on the struggling liver until a fresh one is found.

The post transplant patient is carefully monitored and anti-rejection meds adjusted if there are any signs of potential rejection happening and often this is enough to stop it happening.

If further down the line there are any issues with the liver then the patient might be reassessed and relisted for transplant ............. we have members on here just now who have had this situation happen and been relisted and some who have been restransplanted too.

Whilst it is a worry don't fret over things that haven't happened, trust in hubbies t/p team.

Katie

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Thankyou to everyone that has replied to my post it really means a lot and I will get in touch with some of the councillors you have all recommended thankyou ever so much everyone and it’s good to know that there is always someone I can speak to on this group many thanks

Donna x

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Hi Donna,

I was in your position in 2016. My partner was extremely ill very quickly & I can't tell you how glad I was to find this forum. The people on here kept me sane! I didn't have a lot of support as my partners Mum was also very ill so his sister & I had to juggle between the two. Luckily he had a transplant in July 2016 (his mum died 3 days later) & is now doing extremely well. I was actually more nervous about the whole thing than he was. You will get through this with the wonderful & brave families of the Donor & you can speak to all the great people on here any time.

Wishing you & your family all the luck in the world.xx

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Hi just wanted to say thankyou for replying to my post it makes me feel more at ease knowing I can now speak to someone I am so glad that everything is ok with you and your family sometimes I feel selfish that I’m feeling this way when it’s my husband who is going through this x

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Hi Donna,

Welcome to the forum. It is fantastic to read the supportive messages from our members.

We hope you find our forum a positive place to visit,

Best wishes

Trust1

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Thankyou very much I am so grateful that people are sending me messages of support for my husband and myself

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I have certainly found that learning more about the liver and it's work and the ins and outs of liver transplant eased some of my worries.

There are two free online course running just now about the liver on a site called Future Learn and many of us regulars have done these courses.

There is one called Liver Disease : Looking after your liver and a second called Liver Transplant : The Ins and Outs. Both are actually hosted by the QEB team so you might find familiar faces amongst the tutors and case examples.

Both courses are totally free although you can upgrade which costs money but lets you access the little end of course tests and gets you a certificate. When I did them there was no cost other than the extra for the certificates which I never bothered with.

I'd recommend them to you if you want to learn that bit more.

futurelearn.com/courses/liv...

futurelearn.com/courses/liv...

All the best,

Katie :)

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Thankyou very much for your help x Donna x

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Hi I was in the same position my wife was waiting for a transplant and I have to work away from home for up to 4weeks at a time.

It is totally normal for you to be stressed out it is a very worrying time for you both keep giving your husband all the support and backing you can they need it to keep going but you also need someone to talk to vent your self on here if you would like face to face try and find someone on here that lives close to you and would not mind a meet up

It is very hard work but you have to stay strong for both of you if you feel very bad go see your doctor he might give you some tablets to help impove your feelings i got on Sertrale not sure if it is spelt correctly but it is a very mild anti D my family told me it made me a lot better

Hang in there and keep talking no here as and when you need it we all support each other

Dave

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We had this worry earlier this year only it was our 16 year old son. Some days I felt so sick and couldn’t stop thinking about it then others we would be enjoying oursleves and it would hit me again. My son was born with liver disease but had always done really well and transplant had never been on our radar but he was diagnosed with a HCC in January and listed within the week so we really didn’t have much time to get our heads round it. Our son was (and is) amazing and so positive. This helped him leave the hospital 11 days post transplant even though he ended up having a second surgery 3 days post to remove a broken cannula from his wrist!! We were lucky and only waited 18 days so I really for for others who have waited months.

I can honestly say life post transplant is great. My son was back at work after 7 weeks and college after 8 and apart from tonsilitis a few weeks ago he has been fit and well. He is gaining weight properly for the first time and he is living a life without constant itching that has plagued him from birth. It really has been a blessing for us x

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