Partner has Portal Vein Thrombosis - Any Advice Please?

[Mufan99]

Good morning from snowy Bristol! I have been on this group for a while, mostly watching and occasionally contributing, but most of you are all so we’ll informed my input would just repeat other replies.

Forgive me, but I have some questions and a dilemma. Fair warning there’s quite a bit to process below, but it’s also helping me clear my mind to put this down.

My partner and I have been living with his non-alcohol related liver disease for about 14 years. There have been ups and downs with varices bleeding and ascites, transplant assessment and a decision not to go forward because of risk to kidney function. As the specialist rightly put it a transplant followed by ongoing dialysis is not a good outcome.

My partner has been very resilient through all this, several decompensation and re-compensation cycles, but just before Christmas he had to be admitted with a GE bleed and we were told that there has been a deterioration, with a large clot in the portal vein. He’s been referred to our local Hospice and the District Nursing team. He is still fairly mobile and we now have really good aids for getting around indoors and out. The hepatology team aren’t looking to do any more routine scans or tests.

The main issues are that he is physically weak with very poor appetite and is increasing feeling nauseous and sometimes vomiting. To me there seems to be an issue with swallowing and coughing?

We were referred to the hospice because the situation is, as the hepatology consultant says, “unpredictable”. The findings of various scans were ambiguous re cancer, but I suggested the balance of probability is that it’s likely, and the consultant didn’t disagree.

I know this isn’t the place for medical advice, but does anyone have experience or advice about how to make the best of this situation. For example the prescribed anti nausea drugs have not been helpful, making him sleepy and disorientated. So I think we might go old school and try peppermint tea in a flask to sip when he’s feeling poorly. Any thoughts?

There isn't a roadmap for this situation, so pointers on what to really worry about and what to live with would be very welcome.

Now my dilemma. Here’s the short version of quite a long story.

Rushed into hospital a couple of weeks ago with suspected stroke.

Not a stroke, but kept overnight for observation.

Discharged the next day. The nurses felt sorry we were waiting so long so we left without discussing the discharge notes, which arrived by post the next day.

The notes confirm there wasn’t a stroke, but refer to generalised cerebral atrophy My partner asked me to read them for him and I have told him the edited highlights, which is that the cause of the stroke-like symptoms is unknown, but if it happens again still treat it as a 999 emergency.

I don’t think a discussion about any cerebral impairment will go well, and straight away I emailed our GP for advice about how to deal with this. No response after 2 weeks. My inclination is to “let sleeping dogs lie” on this issue and just deal with the here and now. As many of you already know that’s exhausting enough without any added dramas.

As you’re at the end of this post, THANK YOU for persevering and I wish you the very best for your own situation. Advice or just a virtual pat on the back very welcome 😉

[Ewife]

Hello, sorry to hear all you're going through. Sending lots of love.I wonder if you have someone at the hospice you can speak to? It would seem with the general symptoms that the liver has possibly deteriorated - theres a chance the cerebral symptoms could be related to HE too - and if you're Hepatology has already put you on this pathway they may well be best placed to help navigate you through dilemmas like this?

Hospices have fantastic help for carers and family usually - we have used a social worker from our local hospice - she has been every bit as good as a therapist to myself and our children. I literally couldnt have managed without her. I strongly reccomend you reach put to see whats available

Atb

Ewife

[Mufan99 in reply to Ewife]

Thank you. I think that is very good advice. The hospice contacts have been really good and all the practical help was organised straight away. It's a few weeks since the District Nurses saw my partner in person so I've asked for a home visit to see if they notice anything I've missed. The dilemma about 'kind, little lies' and 'very upsetting truth' is for me to resolve, and the hospice have a spiritual adviser who might help me with the ethics of that. He is visiting us on Thursday, so I might update re that. We also have good friends who support us really well, but it's not fair to put them in the position of having to keep secrets. Thank you for your support, it has cheered me up a lot after a bit of a wobble yesterday.

Love to you and yours

Andy

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Mufan99

If you 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).

If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust