hubby been on transplant list- got call today liver available and he declined as he was terrified… he’s had PTSD since going into hospital with ARLD, 21 days in ICU awful. In his mind he wants the transplant but his physical reaction to the call was feeling sick, being sick, heat racing full on panic attack. He’s has nightmares about transplant. He’s had no counselling or or therapy for it. He told transplant team about it at assessment.
We’ve raised with transplant team again today, asking for support or referral.
He’s been through an awful journey and we as a family are impacted too. It’s so sad to see him so physically scared he can’t do what he needs to do. It’s disappointing as we had our hopes on transplant to improve his health, life, and future. We don’t know how many times they let you decline or if they will remove him from list now. Feeling sad on many levels. I know some hope and pray for that call… we did… then when it comes he’s frozen by fear.
advice… hope … anyone please. It must scare anyone going for transplant so how do you get over that fear?
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Bluescarf123
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I see for your previous posts, that your poor hubby has HE episodes. This may make him unable to make rational decisions. I have know this situation before.
If this is the case, you can apply to be awarded power of attorney over your hubbys medical decisions. So, if he was refusing treatment, you can insist he still gets it. The other urgent action you can take is to get your GP or a duty doctor to make a Dols Order (Deprivation of Liberty Safeguards (DoLS).
Many people with episodes of HE can't make rational decisions, so a doctor can make this order.
I am sorry, it must have been so hard for all of you. To get the call you hope for and then for him not to be able to go through with it. My partner was listed for ARLD and although is now suspended because bloods are too good we know what it’s like living and waiting for that call. My partner was diagnosed on Christmas Day 2021 and it was a horrific experience not made easier by the doctor who gave me the initial diagnosis not explaining that ‘end stage liver disease’ doesn’t have to mean immediate death! We all still have huge amounts of unprocessed PTSD and teenage daughter has been diagnosed with medical anxiety and is under going counselling as a direct result. It’s so so much to go through so it’s totally understandable that your husband needs some support.
When my partner was listed I guess he viewed the transplant as a reason to hope, it was the lesser of 2 evils as at the time of listing we believed his liver wouldn’t recover any more function and he needed it to stay alive. But they don’t give much support the mental health side of things and there is so much to process.
I don’t know what happens now for him with regards listing but clearly he needs some support before he gets another call. Your transplant team would be a good place to start.
Have a look at CBT therapy, it is what my daughter is having at the moment and it is helping hugely , it’s great for reframing her worst fears and challenging coping behaviours.
I wish you all the luck in the world, hopefully the next call is the one and he is in a better place by then x
I can’t imagine what you must all be going through. It’s such a roller coaster. My Mum decided not to have a transplant but that was a thought out decision based on risks. To get to the point of being offered a liver and then not taking it must be so hard. I’m sure the transplant team will be able to advise. It can’t be the first time, and I thought they offered counselling before and after transplant but maybe I’m wrong.
You could go down Richard’s route but how would you actually get him to hospital and what further trauma could you be inflicting.
Katie’s husband shows that some people manage to live a fulfilling life without transplant.
I hope your husband manages to get some counselling before another liver becomes available. And make sure you talk to your own GP about what you’re going through. Big hug
Its perfectly normal to be apprehensive. But, the recovery from transplant will be nothing like his previous ICU hospitalisation. This time he'll be there for only a day or so and really just to be kept an eye on. Indeed, he won't even remember much of the initial time as he'll still be asleep. Pretty much everything will be withdrawn before he even comes round.
For the most part after the op, rather than feeling really shitty and sick as before, you're actually lapping up the euphoria of having energy again. For me it was such a massive difference in how I felt after compared to before. I think it took a month to wipe the smile off my face, lol. It really was a "WOW!" moment, right from when I came round. That's how much difference there was.
Ok, there's still a couple of inconvenient things that'll be present for a few days. He'll probably still have the central line in and also a drain. But you don't really feel those to be honest and in most cases you're discharged to the ward within 24 hrs.
I know there can be horror stories. But those are the exception now a days. His experience will be nothing like what he's been through before.
I wish you both luck and hope this offers at least a little reassurance. When the call comes again, go for it. He'll not regret it in the slightest.
You need to talk to his coordinators today, they are always available. Had he talked to anyone that has had a transplant and can talk him through the process from a patients point of view not a doctors. Had my transplant at Addenbrookes and I got to talk to someone from ALTA, Addenbrookes liver transplant association. Yes I was terrified, when my phone rang at 4am I swore. I can't remember much about being in icu, was only 2 days then moved to transplant hdu then into ward. Yes there is a lot of pain in not going to lie but he will have lots of pain management just have to ask. Went home on day 15 post transplant.If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, thousands of people that have been in your situation.
Hi Bluescarf, I had my transplant at kings. I felt absolutely terrified at the thought just convinced it would be the end. I put off going on list for 2 weeks. I knew I was mad and really it wasn’t a choice as my demise would happen if I wasn’t transplanted. I contacted the Listen group luckily they meet at Kings that brilliant hospital. It’s a support group for people waiting for a transplant. You can be assigned a mentor from the group who themselves have been through transplant. It really turned things around for me. I met a wonderful woman who mentored me just her experience and reassurance. I could talk with her on the phone basically when I needed too. I couldn’t dispute all these people I’d met who believe me had been as sick or more so than I was and they were fighting fit and living life to the full. What a great thing. You’ll find their details online or Kings coordinaters will know. I hope your husband can believe it is scary the run up to the operation but so much better than no life. Also the care he’ll get will be exemplary. Good luck.
We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including a pre & post liver transplant support group.
If you would find it helpful to speak to others with shared experience, you can register to join a group here
I am so sorry your husband has PTSD, his reaction is very real, for you to see him like this must be so hard for you and your family.I have C. PTSD (childhood trauma) but also from having 14 yrs of non stop illness, culminating in being rushed into hospital with Decomposited Cirrhosis, I didn't know I was ill, let alone how near I was to not coming home, the Dr's said if I hadn't got to hospital I probably had couple of days to live (at the time). This happened in 2020, Covid restrictions meant no visitors.
I am only just (sort of) thinking I will be OK.
It has taken all this time but I am relaxing each day, I still have my off days, but I have more good days now.
The one thing that this disease does is in the way it affects the whole family.
My husband watches my every move, not in a bad way or an *oh here she goes again*, but in a *are you OK, can I get you anything*. My eldest has had to take me to the GP's today (having to take time off work).
I feel guilty for not being able to do more, but that is in my head, they genuinely care.
Your husband absolutely needs to be able to talk about his experience, I understand 100% his fears, his feelings are so raw at the moment, but you also have your own worries, you too will be scared.
I really hope you both can get through this very traumatic time with the end result of a new liver for your husband and, hopefully, a healthy and happy future.
All my love and hugs to you both, take care for now,
Thank you to everyone who replied, I do read all the replies but its hard to respond as juggling full time work, kids and caring for hubby.
Just wanted to update- hubby got private counselling for PTSD and anxiety- its worked he went back on transplant list yesterday.
For info- we also contacted transplant centre at kings and asked for help and the GP and local hosptal. All said referrals on NHS for PTSD will take more than 6 months and fastest route to get him back to health (mentally with PTSD and anxiety and physically with liver being listed again) was to pay for private treatment. A real challenge when he has not worked for nearly 4 years and on a PIP. Thank goodness we were able to find a way.
The physical symptoms of being decompensated and with HE, affecting mood, personality etc is hard for the person and the family. We hope that now he can have a chance to move forward. Thanks for all support from this group.
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