Advice for mum

[Char0127]

Hi all,

My mum has recently been diagnosed with cirrhosis (alcohol related they seem to think) but she wasn’t a huge drinker they believe she’s just been unlucky with what her liver can handle, she has been in hospital on and off, first time she was in for 3 weeks and this time she has been in for 6 weeks.

The first time she was discharged she was put on very strong water tablets to try and combat the fluid retention she has, after a blood test one week being home she was sent by ambulance back to hospital as her sodium levels were dangerously low. They managed to stabilise her levels but she ended up having a massive internal bleed and needed an emergency endoscopy which the consultant put a DNR in place, obviously a very distressing time for her and us as a family which I think has left her incredibly worried that this could happen again, they had initially thought it was varices but found she has a stomach ulcer, which is now being treated.

She’s still suffering badly with fluid retention hence still being in hospital and they have been trying to find the right balance with her medication, they’ve gone up and down with the amount of water tablets they are giving her, for 6 weeks I don’t feel like things have got any better and now they are discharging her today.

She doesn’t feel ready to come home as she still feels poorly but the main thing is she’s so worried that the same thing will happen with getting rushed back with low sodium & internal bleeding. Finding it really hard to comfort her in that I would like to think the doctors wouldn’t send her home if they didn’t think she could go home. Not really sure what I want from this post but feels good to get it off my chest and I would be grateful for any advice anyone has.

Thank you for reading my long post if youve got this far!

[carmik]

Please make sure she is tested for alpha 1 antitrypsin deficiency.Some hospitals ,especially if not up on liver issues ,do not test for this but it is very important especially if not a drinker.you can read up on this yreself.was my husbands problem.

[Char0127 in reply to carmik]

Thank you for that advice, I will ask the question, hope your husband is doing ok

[carmik in reply to Char0127]

Good luck.he is doing well. I don't know what area you are in but we went to Kings College liver unit. Local hospital doesn't have a clue here!

[Char0127 in reply to carmik]

Good to hear. We are North- East England, very new to this journey so hoping we get more answers as things go on

[Katielou14 in reply to carmik]

Hi totally agree ourocal hospital same. My husband a d would have died o ly for kings

[Char0127 in reply to Katielou14]

Unfortunately we aren’t in a position to change hospitals or travel to other hospitals as my dad has stage 4 cancer and is going through treatment also

[Breakfastbabe in reply to Char0127]

I am so sorry to hear that both of your parents are so ill. I hope that your mum is now stable and there is no recurrence of the bleeding. I also hope you have some support network to look after you at this worrying time.

[Char0127 in reply to Breakfastbabe]

Thank you, very worrying time, I’m an only child which is difficult but I have an amazing partner who is very supportive, couldn’t do it without him

[Breakfastbabe in reply to Char0127]

I feel your worry. I too am an only child. I am glad you have your partner to support you.

[BritishLiverTrust11 Moderator]

Hello

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

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...

Best wishes

British Liver Trust

[Waddy12]

Good morning, if its of any help, I had exactly the same experience. I obviously can't offer any medical advice but it does get a bit easier once the excess fluids have been reduced and stabilised. My sodium is low due to the diaretics but that has improved with vitamins prescribed by my GP. The bleed sounds very scary for you all but hopefully they dealt with it during the Endoscopy? I had veins quatrerised during an Endoscopy and that's also helped. I'd always rather be in hospital as well as you feel safe there I suppose (and I actually quite like the food 😊). I hope things get easier for your mum and its always a good idea to have a relevant consultant on the case. If not, ask the GP to officially refer you to one x

[Char0127 in reply to Waddy12]

Thanks for your reply, I’m hoping over time the excess fluid will reduce and like you say my mum will start to pick up and feel better in herself.

She will be having another endoscopy in the next few weeks to review how things are as they did find oesophageal varices which I’m guessing weren’t causing any problems at that time as they didn’t do anything with them, but they did treat the duodenal ulcer that she has.

Do you mind me asking what diarectics you are on?

I think that’s how my mum feels, you want to be out of hospital of course but part of you feels safe with having your obs done and blood test daily. Have to see what the future holds and hope that things get better.

[LouisianaLassie]

sometimes it is good to just talk, to squeeze out your own sponge so to speak, so you can absorb more to help your mum. Try to look after yourself too. If your teapot is empty you can't serve others. 💛

[Char0127 in reply to LouisianaLassie]

Thank you that’s so true, I am trying to look after myself too, I have my own business which keeps me going too, but thank you for that message ♥️

[LouisianaLassie in reply to Char0127]

🌸