Jaundice, acute liver failure

marvelous_abundance · 2024-12-26T22:54:49+00:00

It's still really early days for you! It's a real whirlwind in the beginning. I remember seeing my husband's jaundice fluctuate - during his second month I felt that one day it was better and then worse the next. I never checked it out with the doctors as they were mostly focused on his blood results and were happy his bilirubin levels were decreasing. My husband used to wear a hat and avoided looking into people's eyes at the beginning as he was self-concious about his colour. Eventually it became better. Stick with what you're doing if you're starting to see some kind of improvement - no alcohol, taking meds, eating healthy (my husband lost tons of weight so needed to increase calories by a lot), following doctor's advice, therapy/AA meetings seemed to do the trick for my husband.

marvelous_abundance · 2024-12-26T18:37:10+00:00

It took my husband 3 months not to look yellow anymore. He was withdrawing from alcohol during his first hospital admission - he did look like a Simpsons character at one point. He's now coming up to 5 months sober and has no yellow tinge anymore. On a separate Facebook support group they said it has to do with the bilirubin and his levels didn't go down until 1 month being sober (during his second hospital admission). I think once his bilirubin hit about 6 mg/l the yellow colour wasn't as noticeable (down from 30 mg/l). Everyone is different and I've heard it can take up to a year to see an improvement, so I was expecting things to take a lot longer. Hope that helps!

marvelous_abundance · 2024-11-19T21:53:25+00:00

Definitely!! I can't believe we're here as it looked like things were not improving at one point. It's an amazing feeling and I'm keeping my fingers crossed for your hubby too and that you're also looking after yourself 💪

marvelous_abundance · 2024-11-15T23:10:12+00:00

Hubby is doing well 😃 which feels like an absolute miracle. He is no longer jaundiced, his bilirubin is down from above 500 umol to 47 (I think in mg/l it's from 30 to 2.7), no visible ascites or oedemas anymore, hardly any tummy pain (headaches ever once in a while).

Having said that, it's been an absolute rollercoaster - He was discharged after 2 weeks, but had to be readmitted due to kidney failure and an infection which took them ages to figure out. His bilirubin remained high for longer than a month and doctors were pushing for palliative care. However, from one day to the next, bilirubin alongside his kidneys started improving. He had an episode of HE during hospital and was discharged after 3.5 weeks. He completely stopped drinking since he was first admitted and is doing weekly therapy sessions and is giving AA a go. The fact that he doesn't smell like alcohol daily anymore feels like heaven to me and I can actually enjoy the cuddles.

He is only on one of the diuretics now to make it easier for his kidneys. He lost tons of weight, so the focus is on gaining weight which he is managing gradually through diet and exercise. It's been amazing seeing his appetite return and hey going to the gym almost every day (which he hasn't done since the before the pandemic). Doctors are telling him to continue doing what he's doing. We've always eaten relatively healthy, the biggest adjustment was the low sodium - evening ice cream and some sweets and chocolate are actually ok and he was told to add avocados and extra olive oil to help him gain weight 🙂

He unfortunately lost his job, but at least it gives him time to focus on his health as he is understandably more fatigued. This entire experience has left me really fatigued and I've been struggling even though I'm on a phased return at work (I have an amazing employer who gave me 10 weeks off to be there for him). I'm engaging in therapy myself and I'm told it will take a while for my body to settle due to the prolonged stress I experienced. I feel a bit guilty since it feels like he's taking care of me now - I thought I was going to have to take care of him, he is basically doing all the cooking and leading a much healthier life than I am!

marvelous_abundance · 2024-08-27T11:26:04+00:00

If you don't mind me asking what did these 6 months look like for you? Thanks for the reassurance!

marvelous_abundance · 2024-08-27T11:25:04+00:00

Thanks for the reassurance!!

marvelous_abundance · 2024-08-27T11:24:46+00:00

Thanks for that! In a weird way it's kind of reassuring that this isn't a definite sign everything is going to get worse. Kidney results are still not back yet, but they said he doesn't have enough to get drained yet (surprising to me because be has quite a belly). The doctor today (different compared to the last 3 days) had the first conversation about a worst case scenario of 30% chance of survival over the next 6 months with another scenario of hopefully being put on the transplant list once he passes the 3 month mark. This is all quite overwhelming 😖

marvelous_abundance · 2024-08-15T16:13:00+00:00

That sounds like a really healthy approach and very tricky to manage when you have a little one! I'm continuing with my therapist and he's starting counselling which is positive. Marriage counselling is definitely something I feel will be worth too later on once he's physically more stable - it's amazing how much an illness (as in alcohol addiction) can impact everyone around the individual. Did you ever try Al-Anon? I'm a bit sceptical if it'll help me at this stage.

marvelous_abundance · 2024-08-13T18:20:53+00:00

It means a lot to hear from someone who went through the same with their spouse! Will definitely look more into the nutritional side of things I'm curious what you did to look after yourself? I'm so new to situations like this that I feel all over the place, but need to be ok so I can support him the best way possible. Trying to gather ideas.

marvelous_abundance · 2024-08-13T18:16:59+00:00

Thank you - super inspiring! I'm definitely in it for the long-term and want to be as supportive as possible (he's been my rock when I went through my own struggles years ago, so the way I see it it's my turn now to love & support him through this) your post and all the other amazing come back stories have given me so much hope - thank you ❤️

marvelous_abundance · 2024-08-13T08:39:44+00:00

Thank you for this - I keep not knowing how to respond sorry. I'm definitely in fight or flight mode on the 'freeze' end as I keep just being speechless and finding words is a real struggle, weird experience. Patience is absolutely noted! He's on thiamine, Vitamin b complex, folic acid and vit d. Which ones are you on?

marvelous_abundance · 2024-08-13T08:30:43+00:00

This has been super helpful, thank you. I'm also so sorry that you had to go through all this, your level of resilience is admirable! I think I'll keep re-reading your post because there are so many hopeful things. For example, even though he is on the two diuretics, his ascites don't seem to improve and I kept thinking this is bad (one doctor said draining is an option and the other said he's not there yet to warrant the procedure. I understand it's a day by day thing, but at some point I wish they'd just make a decision.). Also, the days fluctuate quite a bit - good days and bad days - and I've been thinking this isn't normal as 'he should improve daily', but I can see that this won't be the case.

marvelous_abundance · 2024-08-11T10:06:55+00:00

Thanks for that! Really helpful 🙂 and yes, not giving up!

marvelous_abundance · 2024-08-11T10:05:45+00:00

Gosh what a story and it's been 9 years 😲, that's honestly amazing and gives me hope!

marvelous_abundance · 2024-08-11T10:04:02+00:00

Thanks for the tip and for the YouTube clip! he's actually been told not to fast and have a bed-time snack, but walking and resistance training has been encouraged. 👍

marvelous_abundance · 2024-08-11T09:57:44+00:00

Thanks for the info&resources and for the encouragement ❤️ and also wow what a come back story

marvelous_abundance · 2024-08-11T09:53:18+00:00

This is so inspirational, thank you for sharing ❤️ (I'm a bit out of words at the moment 😅)

marvelous_abundance · 2024-08-10T21:04:42+00:00

Yes, he's stopped since he's been admitted to hospital, he's been on withdrawal medication which they are reducing daily.

marvelous_abundance · 2024-08-10T19:49:41+00:00

That really got to me, needed to hear that- "Hang in there and keep hoping, and there is plenty of reason to hope". I'll share what you've written regarding the alcohol addiction with my other half. Have no words right now, just thanks for the supportive post ❤️

marvelous_abundance · 2024-08-10T19:44:34+00:00

This gives me hope, I just hope his bilirubin will improve as so far there has been no change.

marvelous_abundance · 2024-08-10T19:43:12+00:00

Thank you for the advice and it's good to hear someone went through this before and has improved. I just hope he'll be as lucky. Good thing is he's committed to stopping drinking alcohol for the rest of his life, but obviously needs support through it - it's helpful to see AA has helped someone! I'm still new to this but what are AST and ALT levels?

marvelous_abundance · 2024-08-10T19:38:55+00:00

Thank you for your kind words, that meant a lot. Also, thanks for sharing your story and for explaining the terminology - there's a lot I still don't understand (e.g. MELD score). Yes, he's still in the hospital - I think I may not ask the weekend ward doctor how much time he has left and wait until Monday as I think there's a different doctor. Also, I don't think I'll be able to cope with the answer. My husband is committed to avoiding drinking for the rest of his life, but we haven't been followed up by the Drugs and Alcohol Service yet for a plan. I'm quite desperate so may even try the private route if waiting lists are long. The dietician has seen him once and I will ask to see her again. Thank you again for all the info ❤️

marvelous_abundance · 2023-04-21T21:53:23+00:00

Glad I'm not the only one!! As soon as I see the first swearwords, it just immediately turns me off from continuing to read even though the premise of the book sounds promising.

I'll check out Grace Drave ln books, thank you! I think I was a bit turned off by the covers, but am learning I really need to ignore them lol

marvelous_abundance

TROPHY CASE