Any advice to help my lovely mum - British Liver Trust

British Liver Trust

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Any advice to help my lovely mum

oof2019 profile image
oof2019

My mum got diagnosed with autoimmune hepatitis at the end of April. No symptoms before. Incredibly fit and healthy. She's now in hospital. Odema. Confusion. Had huge varices bleed. Very weak. It's happened so quickly. Needs to build up strength to pass fitness test for transplant.

She's in lots of pain with her throat and can't eat much. She's very low and i understand that. I love her so v much and want to help.

Can anyone tell me who has been in her position what would help. Any particular foods or what might motivate her to move her body in order to get stronger.

Thank you for reading this. I feel very desperate.

24 Replies
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Hi oof

Sorry to hear about your Mum.

What fitness test are you referring to specifically. Do you mean a physical sort of arduous test, or a fitness to be able to withstand the operation including the state of her heart etc ?

With respect to strenuous type testing the hardest part for me was the blowing into a tube to test your lungs. In my particular case though (and in alfredthegreats as well and possibly others) I had to undergo an additional myocardial test which tested the resilience of the heart to strenuous exercise or simulated strenuous exercise because I was too ill to undertake anything strenuous! This test was undertaken post the Assessment.

If it’s not the “strenuous” bit though the Assessment just includes standard things like ECGs, scans, blood tests and a few others. I fell asleep during one of these and I still didn’t fail!

Maybe you need to determine which elements of the Assessment might be difficult for your Mum. Best to talk to her Consultant.

Jusy one more thing. When I was in the Hospital recovering post TP this chap was brought in who clearly wasn’t well. He didn’t get any better as the days went on and the next thing he was whisked away for a transplant and yet he had never been to any Assessment at all. He was a bit younger than me though! But it shows you exceptions may sometimes, on rare occasions I presume, be made if they consider the risks acceptable.

Hope you get it sorted!

Miles

oof2019 profile image
oof2019 in reply to Hidden

Thank you so much for your detailed and thoughtful reply. I think it's the breath test and cycle test. I'm not giving up hope and will definitely talk to her consultant.

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Hidden in reply to oof2019

Hi again

I didn’t have to do a cycle test and that’s why I think, I did the myocardial test instead.

“Myocardial perfusion imaging (MPI) is a non-invasive imaging test that shows how well blood flows through (perfuses) your heart muscle. It can show areas of the heart muscle that aren’t getting enough blood flow. This test is often called a nuclear stress test. It can also show how well the heart muscle is pumping.” I remember now this was in two parts with and without the nuclear and adrenaline (?) injection(s). About a month apart and both times having a CT scan.

I didn’t have to move a muscle thank goodness. My assessment was done at QEHB and the myocardial test at Royal Derby. Getting this extra test done caused a delay of 4 months in elapsed time but was worth it for peace of mind 👍. As you say ask your consultant!

Good luck

Miles

oof2019 profile image
oof2019 in reply to Hidden

Thanks again for he time taken to write to me. That's interesting to hear about the heart tests and without having to move a muscle. I'll definitely be asking about that. I'm still reeling as only 8 weeks ago she was still swimming. Pilates. Yoga. Hiking. Xx

Countrywalks profile image
Countrywalks in reply to Hidden

Are they strict about bmi in transplant centres ?

oof2019 profile image
oof2019 in reply to Countrywalks

I'm not sure. For my mum it's all about building strength.

Regarding BMI, they actually don't mind if you are over weight at time of transplant as in all likeliehood weight drops off severely during time you're in hospital. My hubby was deemed malnourished at 8 1/2 stone. He was put onto the high protein, high carbohydrate food regime to build him up and after a year of that was also put onto 4 food supplement drinks per day as well. His weight rose to 11 stone and he successfully regained muscle. Anaesthetist and surgeons both said they didn't mind if he carried too much weight at time of t/p as it was a reserve for the op and recovery period.

His weight gain was one contributory factor to him being delisted as he was doing so well.

Katie

I see but what if your bmi was very high as in obese sureley that is no for transplant ?.

Obese might be an issue but that would be discussed if t/p assessment was happening.

So the bmi cut off could be say 30 maybe ?

No idea, it would be discussed at t/p assessment if appropriate.

Hey I'm so sorry to hear about your mum. I don't know much about the process, but just having her lovely daughter near her must be such a comfort.

oof2019 profile image
oof2019 in reply to Bootandall

Thank you. X that's good to hear.

Hi oof. You said your mum is having difficulty eating because of pain in her throat. Is she having any of the build up drinks like Ensure plus or Fortisips. These drinks contain all the vitamins and nutrients needed to help maintain body health and strength and keep the body ticking over at times when normal diet is limited. I had these drinks for 6 months pre transplant and for 3 months post transplant. The drinks are taken as an extra alongside any food eaten. Obviously the more normal healthy food eaten the better but the drinks are an ideal supplement when appetite is depleted. As for the transplant assessment, I, like Miles, was not strong enough to do any physical tests so don't worry unduly about that side of things. I am now roughly 11 months post transplant and doing well. Wishing your mum all the very best for her forthcoming assessment. Alf

Thank you. She was drinking fortisips and still is but after the varices bleeding she's finding it hard. We're keeping going and staying positive and think that every mouthful of food or drink is a positive step. X thank you for taking the time to reply. It makes me feel less isolated and scared.

I found the Ensure plus were more palatable than forty sips (had them on repeat prescription) I used to keep them in the fridge (even better). Often had one blended into a milk shake with a dob of ice cream, very drinkable, cool and soothing and lots of calories as needed at this time. Don't ever feel isolated. Always someone on here to talk to. We are only too pleased to try and help you from our own experiences. Best wishes Alf

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Hidden in reply to alfredthegreat

Fortisip is sooooo yummy. 4 times a day I was told yippee.

So we’re not snap this time freddy

oof2019 profile image
oof2019 in reply to Hidden

Glad to see it's ok. Yes. Definitely seems better cold. Might mix it up with ice cream. Good idea. I've just been given a soup recipe book. Might try some high protein recipes formy mum. I know she would be doing the same for me if roles were reversed.

Trust1 profile image
Trust1Administrator

Hi,

We are sorry to read how unwell your mum is. If you are in the UK and would like to have a chat our helpline is open Monday to Friday 10am to 14.45 on 0800 652 7330

We hope you find our forum a supportive place to visit too.

Warm wishes

Trust1

oof2019 profile image
oof2019 in reply to Trust1

Thanks. I've spoken to you twice and you've been great.

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Hidden

Eat lots of steam veggies and fruits and no diary no gluten no soy. No sugar. Ensure helps. No antibiotics chicken. Stay away from red meat. Eat lots of greens. No supplements. Lots of turmeric and ginger for inflammation. No green teas. Food is thy medicine. She must be on prednisone? Imurran a autoimmune suppression? Are her enzymes real high? She will get stronger just make sure she eats all organic Prayers for healing and a great recovery 💕❤️

oof2019 profile image
oof2019 in reply to Hidden

Thank you! Yes. Made mum some organic chicken soup last night and will take it in today. She just can't eat much at mo but when she does we'll make sure it's really good. Thank you for the tips.

Make sure mum sees a dietician at the hospital. Whilst it is difficult to eat and drink for a few days post banding it is very important that she does so. Carbs and protein, lots of small meals and snacks including a carb rich bedtime snack will be important. My hubby presented with cirrhosis due to AIH literally overnight after a massive upper GI bleed from varices. At that time he was 8 - 8 1/2 stone and deemed malnourished. He saw a liver specialist dietician a year later who put him on a high protein, high carbohydrate eating plan and a year after that as he was being assessed (and listed) for transplant he was also prescribed Ensure (four drinks a day). He was also undergoing an aggressive banding/treatment regime for his varices (having 42 banded over 2 years). Although it is painful to eat and drink it is essential that she does.

My hubby managed to rise to 11 stone and even regained muscle mass, he was listed for transplant in June 2014 but delisted 10 months later because he was actually doing fairly well.

Katie

Thank you. Such a lot of useful advice for me here. I appreciate your response. Good to hear about possible muscle mass regain. My mum's always been slim and strong but now is v thin with no muscles. She's now eating v well which is good to see. We'll keep that going and supporting her. X

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