Consultant appointment

[Rockyroo28]

My husband was diagnosed with decompensated cirrosis of the liver (ARLD) in December 2021, he had jaundice, asceties and spent over a week in hospital, where he had a drain and a biopsy. Due to covid I was never able to see the consultant as they always came in the mornings. Since then we have been to day care clinic twice, (Jan 3rd, Feb 2nd)for bloods, no drains needed. And we had a telephone appointment with the nutitionist beginning of March. His appointment with the consultant has been cancelled twice and we are now due to go May 20th. I feel like we have been completely left in limbo. I thought my husband was going to die in December. We have a young family. Although he is doing very well, complete abstinence from alchohol, eating better and walking 2 hours a day, he gets very down and seems to be in blinkered mode where he is just trying to get better, he hasnt wanted or allowed me to push to bring appointments forward, we never did get the biopsy results from December. My question is, what questions do I need to ask the consultant? I feel like Ive lost my ways as its been so long and we seem to have gotten used to this way of life. My husband isnt working, currently on ssp which is tough, there seems to be no financial support as we have a mortgage. Will he need to have bloods before the appointment? Seems so long since he last had them done at the beginning of Feb. Considering they said he would need a transplant, I feel really sad that theres been no check ins, no mental support or blood tests. Sorry for long post! X

[Lippy42]

We had our first appointment in march after being lost in the system ste was diagnosed in oct 21 .The consultant was brilliant she explained everything gave him a ukeld score of 57 said he would need a transplant and said eat protein gentle exercise to build strength we went back in april and then she told us she was writing to the liver team in birmingham .next appointment is 14 june so from seeing no one for 5 months things are now moving .ste on ssp but his employer has informed him they are terminating his employment on 20th may we have a universal credit claim going through as I only work part time and ste has applied for pip .life is tough things have definitely changed we were advised by dr to take the good days when they come so you can cope with the bad ..hubby had a good spell but since Friday not sleeping body twitches and cramp getting worse .I would have a word with your dr to see if he can get an earlier appointment our gp did this for us and it helped good luck and look after you to 🥰

[Blossom0410]

Hi hun,

So sorry you and your hubby are having a tough time, yes its very hard and I feel just like you lost in the system😣 My hubby also diagnosed last month with Decompensated cirrhosis of the liver (ARLD) with Acute alcoholic hepatitis after being admitted to hospital on blue lights with variceal haemorrhage where he had emergency banding & 3 blood transfusions.. at this point also I wasn't allowed to the hospital and a DNR was put on him without my knowledge!! I understand they had to make that call quickly if he arrested but still think I would of warranted a call just to inform me??. I had to keep calling the ward where of course they are too busy to talk to you and it was always the wrong time! So it wasn't until he was a week in and they were medically detoxing him (again no one told me!) which then made him completely bat-shit crazy.. so I got a call from a nurse to ask would I mind coming in to help calm him down.. So I did, it was so distressing for me as he had no idea who I was and kept trying to get out of bed to leave, swatting at me & the nurses when trying to hold him down so as not to keep ripping out all his IVs and tubes! And that's when I met the consultant on his rounds who said it was touch and go, anything could happen he's very poorly , told me a bit of what they had done & doing... It was all just noise to me then😐

Anyway long story short now home on lots of medication (22 pills a day) which I had to work out and set up when to take and administer throughout the day, he's in bed a lot.. still has ascetics, is on pills also to stop the alcohol cravings which are working!

We saw his consultant last week where he just said he's happy with him, continue to take the pills & get yourself blood test booked in, an appt will be made to come in for a ascetic drain and well see you in a month!! So far cant get a blood test till near the end of this month! his fluid is gaining more and more but no appt received yet? I'm sorry but I thought weekly blood test should be made for him to attend & the ascetics is dangerous if not drained as can cause infection parentally death!! Seems nothings urgent and we (me) has to do it all ourselves.

So I would say like me you have to try and research as much as you can for yourself, this site is amazing BTW I've learnt so much from all the lovely people on here ❤️ (Thank you)

Keep strong and look after yourself please, and no question is ever too small or not worth asking.

xxx

[Lils2019 in reply to Blossom0410]

Hi there,Have you contacted PALS at the hospital, they were very good when I had issues getting my husband booked in for an endoscopy.

I explained in an email that his condition was life threatening and that he couldn’t afford to be put on a waiting list when this procedure needed doing with in 4 weeks, they contacted the department and he was booked in 2 weeks later.

Regarding bloods, do you not have a specialist unit in the hospital where they do bloods daily, do you have the blood form, our hospital do a sit and wait clinic, otherwise your GP surgery should be able to do them, as long as you have a blood form, if you don’t have one contact the consultant’s secretary and request one.

Husbands bloods have not been done weekly, diagnosed in April 2021, 10 months after he was admitted with bleeding varices, he had his last test in feb, and had another one last week, prior to that it was November.

Hope this helps,

Take care x

[Springwater22 in reply to Lils2019]

Hello,

Just wanted to second this suggestion to contact PALS...we submitted a complaint eventually to get my husband referred to Leeds and it just showed us how you have to fight for what you want. Since then husband has gone through PALS to chase results if not getting through elsewhere and when there has been couple other 'admin' issues. They are always helpful and seem to have some sort of magic wand to get things done (perhaps they are wanting to avoid people making complaints).

The whole thing really made us feel for those who are not in a position to advocate for themselves and face all sorts of red tape issues. But yes, if you can go through PALS would really recommend.

[BritishLiverTrust5 Moderator British Liver Trust]

Dear Rockyroo28

You may benefit from giving our liver nurse helpline a call. The number is: 0800 652 7330 and is open from 10am-3pm Monday to Friday (except bank holidays).

I have attached some links to the British Liver Trust website, which you may find useful. britishlivertrust.org.uk/in...

Please consider visiting the following link to our downloadable publications page. There is a specific section on cirrhosis and advanced liver disease at the bottom of the 'Types of Liver Disease' area of the page. britishlivertrust.org.uk/in...

Best wishes

BritishLiverTrust5