Mums progression

[Char0127]

Evening everyone,

My mum was diagnosed with cirrhosis of the liver back in Feb, she has had numerous stays in hospital in that time due to Ascites and problems after taking her diuretics (problem with low sodium), we managed to get her home for around 8 weeks and in that time she slowly started to pick up and then around a week ago she went downhill rapidly.

She had to go in to have her Ascites in her stomach drained which they managed to take off around 9 litres but her stomach was still extremely swollen, whilst there they did a blood test which again showed low sodium so her specialist advised staying off the diuretics and then would follow up in a few days with another blood test.

Only 2 days later she was rushed into A&E as she was extremely poorly through the night and her blood pressure had plummeted, she’s now in hospital and is still suffering with extremely low sodium and low blood pressure, leaking fluid out of drainage site (nothing seems to be getting done about this) but I think the most concerning thing for me is I feel over the last 2 weeks she is showing signs of HE, she’s quite slurry with her words, confused sometimes just not as sharp as she normally would be, she’s also started with a shake and is cold all of the time.

I’m going to see her tomorrow and hopefully will get some answers and will be pushing for more care of the drainage site as I’m worried about infection etc.

Not too sure what the point of this post is but I think it’s helpful to get everything out of your head and down somewhere, if anyone has any advice or questions I should be asking I would appreciate any feedback!

Thank you in advance.

[McEwan1962]

so sorry to hear about your mum. Hope she starts to improve soon. I was in a pretty similar to her in 2019, especially with the ascites.

I ended up being unable to tolerate the diuretics and they caused an acute kidney injury so had to have regular drains for ascites. One time the drain site was not closed properly and I leaked quite badly. So if she can’t tolerate the diuretics she will probably need regular drains. I’d definitely be asking what their plans are to manage the ascites. I was also allowed 1500ml of fluid while I was in hospital to try to help with the fluid.

I never really experienced severe HE, however I was prescribed rifaxamin as standard and lactulose as it helps with your bowels and getting rid of the toxins. Again I would be discussing this with them. There are others on here much more knowledgeable about HE on the site.

Diet is also very important, lots of protein, so everything full fat and also if she is malnourished she should have some high protein drinks, so might be worth also asking for a dietician. It’s also worth having questions written down and if they start with doctor speak to stop them and ask what they mean. They often forget or assume you know.

I hope you are doing ok and having dome time for yourself.

I hope tomorrow goes well.

Lesley🙏👍

[Char0127 in reply to McEwan1962]

Thank you for your reply Lesley, that’s worth asking about the possibility of her not being able to take the diuretics, I will make a note of the rifaxamin as I’ve seen a few people on here mention that and it’s something I know my mum isn’t on, she is on lactulose so maybe something that would be worth trying.

It’s great to hear success stories of people who have been as poorly as my mum is and have managed to recover and have a quality of life as it’s one of my biggest worries.

My dad is also battling stage 4 cancer and I’m an only child so can feel like a very lonely place so great to have this community.

Can I ask did you end up needing a liver transplant or were you able to reverse and get better through diet etc?

[McEwan1962 in reply to Char0127]

So sorry to hear about your dad. It must be really hard for you trying to support both of them🫂

I hope today was positive.

I needed a liver transplant, though found that difficult to accept at first, however the ascites and the regular drains made me realise it was the only option for me. I was listed in August 2019 and had my gift in December 2019. I live in the South West and we have an amazing liver unit and also a small local group of patients and families, which helps getting together. I have also found that the nurses are very good at explaining things.

make sure you have some self care too👍

[Dogbot]

so sorry to hear about your mum and I think what I would say is when you think of a question that you want to ask write it down and start a list, put it on the fridge so when you go to the hospital and see the consultant have the list with you so all your questions are answered. I do this every time now because the first few times I went I always came out to think dam forgot to ask about this or that, it really helps. Good luck to you from the wife and I 💕💕

Stay safe All

Dogbot 🐶🌈Dave

[Char0127 in reply to Dogbot]

Thank you so much for your reply, yes good idea about writing questions down as I definitely suffer with forgetting the questions! I never seem to be able to speak to a consultant, the hospital my mum is in is about an hours drive there and an hours drive back so obviously I can’t visit her everyday, I have in the past requested for the consultant to ring me but this has never happened, I think I will push a little harder in order to be able to speak to someone.

Thanks again ✨

[Dogbot in reply to Char0127]

When I was in king college hospital the wife had a long train journey to me so we set me up with an iPad or phone and when the consultants came to do their rounds I would FaceTime my wife to join us and the consultant was more than willing to talk to her as well as me , might be worth a try 👍.

Stay safe All

Dogbot 🐶🌈Dave

[Readlots]

Hi, I’m sorry to hear you’re having such a hard time. Our hospital has a system for relatives to call and get updates. It might be worth exploring whether your hospital has anything similar. Alternatively call the hospital and ask to speak to her consultants secretary. They are brilliant at getting information out of consultants!

We got Mum to write to the GP giving her permission for them to speak to me. I typed it and she signed it. She also spoke to the GP to ask them to talk to me. That went on her records. It might be difficult to do this when she’s so poorly, but perhaps you could ask Mum to give the hospital permission to update you.

I suspect it’s just that they are so busy. It might also be worth finding out when consultants do their rounds and time your visit so you’re there when they see Mum.

The BLT nurses on the helpline are great. I’m sure they can advise and support you

[Char0127 in reply to Readlots]

Thank you for your reply, I will have a look into that, I think I just need to get out of the mindset that I’m bothering the hospital when ringing for an update.

Will mention to mum about giving me permission to speak to doctors etc

Thanks so much x

[Readlots in reply to Char0127]

You’re welcome. You’re not being a bother, she’s your Mum and you care. There are ways of getting information without being a bother, you just need to find the right person x