I don't know what to think anymore

[Ewife]

Following an appointment last week, the team put their heads together again yesterday and have decided to temporarily deactivate my husband from the transplant register until review in September. My mind just doesn't know what to think - its been dragged up and down so many times -nothing is ever certain.

My husband is only 42, he is a father, business owner and can't get out of bed most days until mid day. He hangs right in the balance of being too well for transplant - yet too sick to live a normal life. His body is still relying on medication to keep it functioning, he's still living on warfarin, he's just had another drug added to the list which I see as a progression. He has been prescribed Rifaxomin now, because they think this might help with his lethargy and fatigue.

However,they went over the statistics of risks with transplant again too,and I have to agree that the prospect of a life with a poorly husband is better than the risk of no husband. ...they said they are basically undecided whether its the right thing, so therefore want to suspend him for a while and see what happens.

So for the first time since he got poorly,I feel like we have no, or very little hope. Yet I don't wish him to be worse,and I'm terrified of the statistics they gave me. My heads just spinning round and round.

We are trying to plan a trip away, but it's really worrying me because the reality is he just can't manage a normal full day.

We are desperately trying to view this as positive, and welcoming the break from the strain on our mental health of being active on the transplant list for 18months - 3 false alarms etc. i just feel so sad when dayto day things arise and we have to decline them,or alter other plans so that we can accept.weve had to give up so much, and it's so hard for us all , especially 3kids we have still young. If we were 70 and retired I would welcome this, but were not, we're young,with young kids.

Don't anyone out there think that transplant is the easy route out of Liver disease......its a hard, hard journey.

xx

[Teddog2022]

My heart goes out to you, it really does. It sounds so much like our situation. I am 45 and my husband is 51. If we could find a balance where he could function with a quality of life we would embrace it but he just seems to be declining very quickly. We are being reviewed for transplantation in Sept as his assessment in June highlighted physical concerns at his ability to survive the transplant which we are now currently investigating/receiving treatment. Thanks you for replying to my previous post. I went through counselling in Feb after his first hospitalisation for HE as it was horrific, absolutely horrific. I just found that a prescribed time once a week to breakdown wasn't really working. It was for the halfway though day moments, 2am moments, the not being able to go out as if anyone asked how things were I cried hysterically. I think entering the whole "transplant wait list" brings its own issues as you highlight here. I don't know. It seems like this is our only hope at some sort of quality of life for home. I don't know what to say to you, only I get how painful it is for you both, I really do and more so as you have a young family. Bless you and I wish you both all the best xxx

[Ewife in reply to Teddog2022]

Yes, i agree - it's the quiet days and moments which are the hardest. My therapist is really consistent, teaching me techniques to help ground me, and reminding me to be kind to myself, allow myself days to greive etc.I have a decaf cup of tea every evening, and I'm not allowed to think about the illness whilst I have it. Holding the mug reminds me, and I try to have quality time with my husband - because I feel like we need time each day to forget. It's the little tricks like this which have helped me. But nothing quite stops those moments when everything overwhelms us - I think we probably should embrace them more instead of always feeling like we have to be the strong ones - but I don't know how, it's miserable sometimes.

Take care,

Xx

[Teddog2022 in reply to Ewife]

Those are some very good tips, I too have a little solace at start of day when I have the cuppa and its just me and the dog so I'll start to practice this. Thanks again, take good care xxx

[Millie09]

So sorry to read your latest post ..I really wish I could help in some way but as I'm not on transplant list or assessment I can only imagine how you both must be feeling

To be waiting 18 months and 3 calls etc then to be taken off until they assess hubby in September, you must have so many mixed emotions .

Why don't you contact the BLT liver nurse helpline ,maybe reaching out and speaking to professional people they may try calm your mind down a little .. I hope you manage to both get away for a while

Sending my best to you

Linda x

[LemonMeringue15]

Really sorry you are dealing with this

[Witcat]

Ewife, I sadly understand everything you are going through and it is sooo tough.I thought the answer to everything was a transplant for my husband and it probably was because he was very ill. My husband was spending more time in hospital than at home and I was his carer even in hospital. I gladly did it, spending 12 hours a day there doing everything for him, other than give out his meds.

Transplant was our hope and the call finally came. I had so much hope and absolutely belief that everything would be fine.

My husband died as a result of a massive bleed at the end of the transplant. I won't go into it all but I as you say it it certainly not the easy route.

That was in Feb'20 and I miss him every single day and I wish we had had so much more time he was only 57.

The Liver team will know what is best and although it will have been hard to hear they are delisting your husband, it probably is better and they will be monitoring to see if anything changes.

I know life isn't easy living with liver disease but try to do things on the good days and if possible laugh and smile a little. Tell each other how you feel.

We all get caught up in liver,liver,liver and forget about US!

Sending love and a hug🤗x

[Ewife in reply to Witcat]

Thank you for your kind words. It's important to see all sides of Transplant - whilst trying not to be terrified if you do need one. I guess it has to be very individual for each person, and subject to change every step of the way. I think taking a step away will give us a chance to regroup and be sure that if he does go back active on the list, it is the right thing for him.

Take care

Xx

[Millie09 in reply to Witcat]

So sorry for your loss witcat ...

[Positive001 in reply to Witcat]

💔 xx

[PaddyR]

I am in complete understanding. My husband had finally been put on the variant liver transplant waiting list after ups and downs for over a year. Steroids are holding him together so sometimes he appears normal and then the next day, fever and aches and we race to the hospital. I am trying so hard to be strong for him but it gets hard faking it as his wife when I am so scared too and don't want him to see.

Hopefully we can all help each other through this.

[Cat-B]

You poor thing, it sounds awful for you, could you take the kids on holiday and care at home for your hubby? No transplant is not the easy option everyone thinks. It is a very big complex operation, and then a life on medication with restrictions on some activities, not all transplants work. I think you should be glad he’s well enough to come off the list and keep focusing on the things you can do to maintain that status. Good luck

[AyrshireK]

Hi Ewife, your situation rings so many bells and indeed when my hubby was delisted back in 2015 we too felt like the light at the end of the tunnel had been snuffed out - we had so many mixed feelings at the time but over the subsequent years we have come to see that transplant doesn't always provide the golden ticket we all hope.

My post from 2015 is at:- healthunlocked.com/britishl...

Being on the list is so restrictive (and we were only on it 10 months with no calls for t/p). Maybe you should see this break from the list as just that, start to live a bit - they must have seen some improvement in his condition if they've taken him off just now.

When hubby was delisted my Mum and Dad helped us buy a new caravan and we grabbed the opportunities that having a home on wheels gave us and we've travelled loads even though hubby still often suffers fatigue. Seven years further on hubby is nowhere near transplant needy and continues to remain stable and we try to make the most of every good day.

Thoughts with you all,

Katie

[Ewife in reply to AyrshireK]

Thanks Katie,

Really interesting reading your post from 2015 - I could have written it myself. It's like the mind can't really process it all and doesn't know which way to think!

We are really trying to see this as positive - I even get a bit excited about him getting back to his old self - but then I get thrown back to reality by some small task that he can't do, or one of his crashes.

We have always been very wary of Transplant- funnily enough, it's only been this last 2 months that I actually got to the point of wishing it to happen. The most recent call he had, he was all gowned up, canula in etc before they cancelled it. And since then he's gone downhill quite a bit in himself.

But we are going to try and have a week away, the youngest is off school, and the next hospital appointment is the day after he goes back to school. So here's to us as a family, having a happy summer break and hoping hubby has enough energy to do some fun things and make nice memories

😁

[AyrshireK in reply to Ewife]

It must be really difficult to fathom things when he's come as close to transplant as actually being all prepped and readied for the op. Do try and enjoy the 'window' - we were told it wasn't a case of if hubby would require t/p but when and yet 7 years later he is still thankfully doing fairly well in the grand scheme of things.

Hoping you do have some good times as you await the next step.

Katie x

[Positive001]

I am so sorry you are going through this. My heart goes out to you again and again.But such wise words and powerful message...... it's just so not an easy ride.

Laura xxx