Help for a loved one

[Agapanthus20]

How do we as a family help a loved one awaiting liver transplant assessment, as clearly very unwell.

[AyrshireK]

When you say awaiting transplant assessment - have they been referred to a transplant unit or been given any sort of timescale for when they might be attending for assessment?

Katie

[Agapanthus20 in reply to AyrshireK]

Been assessed by local hospital, referred to transplant centre appointment 2 weeks time. Swelling increasing. Not sure how much more she can take

[AyrshireK in reply to Agapanthus20]

Have you got contacts to make sure she gets necessary drains for fluid build up? If she is deteriorating seriously make sure she gets necessary treatment a.s.a.p. They might bring forward the transplant unit appointment. If it's a case of needing to be admitted to hospital due to deterioration make sure consultant is involved.

Katie

[Yellowsydney]

Hi, I'm 6 years post liver transplant just be there to support. Hi to appointments with them if you can it's sometimes hard to take things in. When I had my assessment the consultant waited until my husband got there to talk about results and transplant as I was very upset.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 there and have soo much experience.

Hilary ❤

[Kristian]

In the main just being there for support when needed is great. I suspect your family member is likely to think that they won't want to bother you or, "its ok i'll be fine". So its probably helpful just to check in with them each day in a way they are comfy with. If they like phone calls then give them a ring, but in today's society most folks like it a bit less formal, so a quick text or WhatsApp message will usually be just fine. Encourage them to share things with you too. Any new symptoms or changes in existing symptoms. They may need some encouragement to seek some extra medical advice. We don't always recognise ourselves when this is needed. We always ask ourselves, "should I really be bothering them (the medics/gp/etc) with this?" So having that second opinion can be helpful. That will though I suspect rely on how comfortable your family member is with discussing their problems with you. So you may need to encourage them to be comfortable doing so. It could be a life saver.

With late stage cirrhosis there are situations where urgent medical treatment is required. The risk of varices bleeding is the obvious one, but also being able to spot the signs of a serious infection, such as Sepsis or Spontaneous Bacterial Peritonitis would be good knowledge to have. The symptoms are likely to be similar anyway. As a patient we won't always recognise the difference between 'just an infection' and something more serious. To us, the difference can be quite subtle, as we normal feel yuk most of the time anyway, lol. So again, having that someone to bounce things off is quite handy.

From a transplant assessment perspective. If that is the suggested course of action, then someone should accompany your family member through that process. There is a lot of info shared so having two people to help take it in is helpful. Should transplant be the option then having a network of folks ready to jump in and help at short notice is also going to be needed. Things like getting to the hospital, looking after any pets etc are all the mundane things that will need to be considered.

Hope thats helpful.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Agapanthus20

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition, and their families and carers, including a pre & post transplant group.

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

We also have this information on our website: britishlivertrust.org.uk/in...

Best wishes

British Liver Trust