My partner has been accepted on the transplant list and throughout our journey to get to this stage; there seems to be no support for carers who are faced with the consequences of our loved ones conditions .
As I prepare to wait for a call , selfishly I wonder how am I going to deal with watching a man I love go down into a room with the possibility of not speaking to him again ( small chance) but still . What do you do with yourself waiting for the op to finish and how do you cope with the aftermath ?
This may sound very selfish as I am not having the op myself but I do feel that loved ones are put aside and forgotton. I have looked to see what support there is locally and there is hardly any.
I cannot be on my own with this view , so what ideally needs to be put in place to support families and partners of loved ones going through the transplant journey from start to finish.
Any ideas or thoughts ????
Written by
Mitchell1980
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There are many of us 'loved ones' out here and this forum has been a place of support for many - some even posting in those hours when their nearest and dearest were 'under the knife' or waiting on 'super urgent lists' for that elusive, emergency needed new liver.
I know how terrifying it was for me when hubby was first hospitalised and he was whisked away to a different ward and I didn't even know where he was, also, the worries when he was having his embolisation operation when they discovered dangerous aneurysms on his splenic artery. I can only imagine it will be terrifying if that day ever comes when he goes for tranplant (he was listed for 10 months but isn't currently). I think that transplant co-ordinators do keep you in the loop as to how things are going during the op but I think we must all go through the wringer during that time.
Many of the transplant centres have pre & post transplant support groups that are probably attended by loved ones as well as patients and maybe support networks for carers/family spring out of them - we never attended one so couldn't really comment I just know the pre transplant groups do exist. Ask at your hubbies transplant unit. We live 100 miles from our unit so it was feasible for us to attend other than for appointments.
Wishing you both the very best of luck & hopefully when that time comes all goes smoothly and he'll be on the road to recovery very quickly.
I am the one probably going on a waiting list on Thursday, have HPS, a complication of Liver Disease... it is nice to see you writing, my partner is also concerned for me, as you are for your loved one, so I can only suggest we all keep in touch?
For me, I am positive. A LT is never something to want to undergo, but having HPS leaves me no option. So, what I am saying is, I want a LT and that I am positive that it will increase my quality of life once I come through it all. AKA, a LT is no big deal, fight, step up to the plate and pull through ... both of you!!
Not sure the above helps? just me being me, and I do have my ups and downs, but I aim to come through this. I do not judge why or how the LT became the only option, mine is via HPS, but I DO believe in the future...
Keep well as they say in South Africa (spent the last 15 years in that beautiful country, now back for some TLC from the NHS)!!
Firstly, your thoughts are anything but selfish. I often feel as the patient we actually have the easier time of it. We are always actively involved in whats going on and so have some control over the process and what we do with ourselves. We can prepare for it. Besides, when it comes to the crunch, we're the ones that get to sleep through it!
No, in my view, our relatives and our careers have a far harder time of it. They have no control, they just have to watch from the sidelines as they see us in some state of distress with no way of doing anything about it. To me that is far harder to deal with.
I'm afraid, unfortunately, that i'm not able to give you advice in how to deal with that situation. I just don't have the experience. However, the transplant coordinators will help you. They know how important you are and also how important it is that you too are coping. They can give you some advice if you need it.
I'm not certain which hospital your partner is at, but the information we got during the assessment did give some advice for carers. Also, the various support groups will also be happy to help. And, of course, we are all here too.
There are many Facebook groups in regard to Lover Disease , mad so,e are there for both sufferers and carers , or family and friends . One I am in also encourages those who sadly lose a love one to stay within the group for support too . May I suggest spreading your wings a little further than this one support , and testing others out .
Hi, you are not selfish nor alone, the same thing has gone through my mind too and we havent even had our appointment with the Royal Free yet. Thats why I came in here on a couple of days ago and I have had some positive replies.
This group was & is my lifeline . My partner was given a transplant in 2016 & it was me that panicked when the call came. He was very calm. Family members came to the hospital but had to leave before the surgery due to other family issues. I was alone at St James Leeds but the ward staff were very caring. I also got a room at the hospital "Hotel" so stayed there alone until I got the call to say it was all over. The op was 6.30pm til 1.15am ish. To be honest it's now all a bit of a blur !
For most of my illness I was pretty oblivious to the severity of my illness and how difficult it was for those around me.
Lucy who was busy keeping me alive and safe from my repeated episodes of hepatic encephalopthy, found this forum invaluable. The British Liver Trust website and the forum gave her the information, knowledge and understanding that was needed to get through those difficult times.
People like Kate ( ayrshireK ) provide an ear, an understanding shoulder for those confused and puzzled by the illness and the intracies of the hospital appointments and stays.
It's the people on here and a wonderful group on Facebook who were mine and my husband's support the year before my transplant ... For the 4 or 5 years before that I had the amazing guys and gals on here to support me but my husband didn't want to post on here he needed face to face support as I had so many problems in the end he had to go to his GP as he just wasn't coping they put him in touch with someone it was sparingly but I could tell the difference in him after he had been for a "chat or moan" x
very true. i had my transplant in may this year after 19years of illness... whilst attempting to bring up a family...
there is unfortunately hardly any support for our other halves... one of whom you are...
since transplant we have found check ups etc... medical care has been excellent but an emotionally unsupported time.....
this definitely needs addressing.
those of us who met on the wards... some have stayed in touch... snd and thats helpful.. but we are all so spread out.
think we should take this up with healthunlocked and ask if they can set up a carers area... to allow a sound off space... i know that's what my husband could have done with.
i could have done with some counselling as well i think... had some wobbles but getting there.
just take each day at a time snd and try not to put life on hold.
I having a major wobble at moment but fingers crossed hoping my GP will address it as you say aftercare emotionally and mentally is next to none which is very surprising due to the ordeal we have been through and the changes we have to get used to I would say I am currently grieving for the old JoJo just hoping I embrace the new one sooner rather than later 😊. Hope you are feeling better x
Through this Journey , I have become more driven to do something or create something that can support us and our loved ones .
There are huge numbers of people who need and deserve support and the only thing I have been given is to go to a local hospice who did make it clear that they don’t deal with many people with liver disease and we also had not been given direction to need a hospice .
This to me is unacceptable , the strain on partners and family members is immense .
What would help you ??
I want to do something that enables others in years to come to feel more supported than I do.
Feel free to share your thoughts
Might sound corny but there should be other avenues available for people directly impacted by LT or any other form of transplants
I was the recipient of a donor liver. My husband was in your shoes. We live a long way from our transplant centre so support groups connected to the hospital were impossible to become a part of, but in the main they seemed to be more for patients and family post transplant.
All I can say about our own experience is it was the longest journey we ever have had in complete silence for the main. I felt awful for my husband and still do 3 years post transplant. Those hours while I was in surgery were so lonely, as my operation started very early in the morning. Save for immediate family no one knew I’d had the call. Plus my hubby didn’t want to be on the phone in case the co-ordinators we’re trying to reach him. He went for a walk to try and make sense of the fears and hopes he had. Then went to the cafeteria people watching until he had a call to say I was out of surgery and where to go to see me etc.
Hopefully you live close to the hospital where the op will take place and you could join one of the support groups if available, or have someone to meet you while your partner is having the op to keep you company. Alternatively you will always have support and someone to listen here.
Wishing you and your partner all the best, just make sure you ask all the questions you have also to the teams during outpatient appointments etc.
You are not being selfish at all. In order for your partner to do well you need to do well. I know it is hard and constant worry. I know it is easier said than done but try to take care of yourself too. If you can try to set time aside just to do nothing. Hopefully there are support people/groups that you can connect with before transplant at the hospital.
forgot to say.... you are not being selfish at all... my husband has almost gone into melt down since my transplant... he's worked in a demanding job full time and his mum has just passed away from cancer after a long drawn out horrible illness... and i still need his help... as not up to cooking a full meal... etc
i have also had several huge emotional blips... and told gp that i i felt like i was going into melt down... she said.... don't do that... you've been through a huge thing and it will take a lot recuperation.... just a few kind words made a huge difference.
i think all transplant patients and partners should be given a few sessions of counselling post transplant... perhaps we should all tackle our consultants about and gps and maybe mps and government??
what do you all think....
with so many people on this site we probably have people power!!!!!
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hubby refused transplant due to PTSD 
2nd liver op. 
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