It's like Watching Someone Dissappear..

[DD75]

Update:

Hello Everyone,

thank you for your help and advice i eventually rang an ambulance. Husband in a and e Majors they've got all his medical history rushed him to top of queue cant fault them. He's currently being given antibiotics and fluid and had bloods taken also an xray. Doctors think the gaunt look it dehydration and he doesn't appear to have lost blood so 🤞 he will recover.

Thank you so much for your support over last few days x

Hello All,

The thing my husband now has a chest infection and he went to ward after GP refused to treat him saying his case was too complicated and hospital needed to deal with it. Absolute Gold Stars to the gastro ward staff who know him and his up and Coming operation so got a doctor to look at him.

Apparently rifaximin is an antibiotic (never knew that) so after a nebuliser and having his bloods checked he was sent home being g told to take his rifaximin as prescribed as will help infection if it doesn't get any better go back in a few days. So today I forced him to go back they did a phlegm sample at Apparently it is a respiratory Infection that has to run its course which tbf he does seems a little better.

The reason I'm struggling is he's now like a skull his face is so gaunt it's scary. Now I know he hasn't really eaten much over the last 4 days and I trust the hospital completely, he's with it mentally but his arms are like string and his face is painfully thin its like watching someone slowly dissappear in front of you I've no idea what to do. He has his bloods checked 3 days ago it showed ok.

Common sense says he's not eating much he's a diabetic he's got an Infection it's ridiculously hot and he has cirrhosis so he's not retaining any energy or carbs or protein but honestly I can't bare watching this great one day healthy look to a skeleton within days look its horrific 😔

He's got his pre operation appointment in a week and a half I don't think he'll pass it at this rate 😔

Thanks for letting me let it out here everyone it means alot 💙

[Shep666]

Hi DD75

My heart goes out to you and your husband - what a horrible and profoundly worrying thing you are both going through. Please never apologise for "letting out", you need to be able to vent and verbalize how you feel – it will help you survive this.

Good luck to you both, stay mentally as strong as you can, continue to trust your medical team whilst still asking questions of them and use this forum to “let out” whenever you feel like it.

👍👍

[DD75 in reply to Shep666]

Thank you Shep666 xI've edited my response as didn't mean to scare anyone my husbands case in general is very rare due to all other complications apparently 😔 such as missing anticoagulant proteins in blood etc a portal vein blood clot which is why he had TIPPS in first place. The problem is the clot due to blood thinner has now broken in three smaller ones 🤦‍♀️ thus moving into shunt and blocking it 🤦‍♀️.

If it isn't one thing it's another but sometimes I just need a vent. Thank you for being so supportive xx

[Ewife]

I'm so sorry for you. Do you have access to a dietician on the team? Many people with cirrhosis end up on supplement shakes prescribed. It would be worth asking fairly urgently with his upcoming surgery.

Atb, have a cup of tea on me this morning! 🤗

[DD75 in reply to Ewife]

Hello Ewife,

He doesn't perse he is on fortisips and switching to ensure after last hospital visit. But with the heat and infection he's struggling to eat anything which I know doesn't help 🤦‍♀️

Thank you for your support 🙏 x

[Ericabear]

Bless you both, it's so scary to watch someone you love go through this. My husbands whole body has changed and shrunk since being diagnosed with Cirrhosis and his face has that gaunt look, a shadow of his former self. As per the previous replies I would speak with the dietician to try to get something to build him up, I add ground nuts and ground oat powder into anything I can but am not advocating this as the right thing to do especially with diabetes. Try to keep positive, everyone on here will have gone through so many battles and fingers crossed we keep winning. Sending you a big hug x

[DD75 in reply to Ericabear]

Hi Ericabear,

Thank you for your reply and support x

I've edited my response as didn't mean to scare anyone my husbands case in general is very rare due to all other complications apparently 😔 such as missing anticoagulant proteins in blood etc a portal vein blood clot which is why he had TIPPS in first place. The problem is the clot due to blood thinner has now broken in three smaller ones 🤦‍♀️ thus moving into shunt and blocking it 🤦‍♀️.

He does have fortisips but it's just hard to get him to have anything at moment 😔

If it isn't one thing it's another but sometimes I just need a vent. Thank you for being so supportive xx

[Ericabear in reply to DD75]

Anytime xx

[kensimmons]

As a Christian person all I can say is good luck, I will pray, and may God be with you and patient. Godspeed. Keep us updated.

[Harriet-sarah]

RSac and Kensimmons you should both be ashamed of yourself, if u have beef with each other do it in private, DD75 I am so sorry to hear what your going though you must be beside yourself with worry. But you sound like you trust your consultant very much, so he will be very good hand both through the op and post. Just a chest infection can knock you your body out of what it’s trying to do, and I totally agree about what other helpful people have said on here, and speak to your dietitian. You didn’t say if he was on an NG feed? I’m just asking as I had to have one for 6 months to get all the vitimals minerals and proteins in me, and it helped ALOT! It gave me my strength back and now just eating orally now with milkshakes and protein shots. Even if I miss a protein shot I feel the difference. It’s good that his bloods are stable, that’s a really good sign (if the weren’t i doubt the would operate) this really is a tough time for you both and you sound so strong, even though you might be falling apart inside. But make sure you look after yourself too, it’s important. I really have found food and protein the key, so get a really good realationship with your dietition. I totally understand about you GP, every time I have a problem (even if it’s not Liver related, he just says speak to your consultant as he says I’m too complicated and he is at of he’s depth to advise me. And that really is not helpful and makes you feel more alone fighting this. But remember you are not, reach out, like you have on here for support, the mental health team sees me regularly which is a help just to talk to. My dietitians works with me, the hospital I’m at is crap, so I’m going for a second opinion at another hospital on Monday, cause I am pretransplant and first my consaltant said I was not well enough to even live for a transplant, the a few months later she said I don’t need one cause I’m too well! I have a severe Decompensated Liver, so how can it compensate if it’s Decompensated? So I’m confused on that one! But the Liver is the most unpredictable organ of your body, and can overcome many blows, so keep faith it that. And as for the way he looks that in time will improve. If your really concerned see if you can get get your consultant to call you over the phone, he maybe be able to put your mind at rest, I wish you all the best for you and your husband xx

[DD75 in reply to Harriet-sarah]

Thank you Harriet-Sarah,I've edited my post as I think it caused a few problems from your reply (I never saw messages they were deleted by time I looked) I didn't mean to I'm just super worried 😔

He said he feels a little better today 🤞💙

[Harriet-sarah in reply to DD75]

don’t you be worried at all my lovely, glad he feels a bit better he will turn this corner I’m sure x

[DD75 in reply to Harriet-sarah]

Thank you x

[Readlots]

It is horrible to watch someone you love deteriorate. I’ve been through it with both parents and it’s heart breaking. I found myself eating for them, which obviously doesn’t work, and I’m now overweight myself! However, with both of them I was advised to add calories to everything. Small and often. So porridge was made with cream. Bread with a thick layer of butter and jam etc. They found large meals too hard and put them off eating, so frequent snacks with the supplement drinks that others have mentioned helped. We got them on prescription. You can get variety packs so that you can try different flavours and see what he likes. The community nurse at our surgery sorted it out but you may need a dietician involved. In this heat Icecreams might be the way to go - minimilk lollies or the mini cornettos. Eating with someone can help them find their appetite and distract them from thinking about what they are doing.

And, make sure you look after yourself. Give yourself treats. Take a break and do something nice for yourself. Go for a coffee with a friend. Big hug from me

[DD75 in reply to Readlots]

Thank you Readlots,

I'm going for a walk later 👍 he did have a small bowl of bolognaise (with fresh garlic in nature's natural antibiotic, as a oncologist once told us) yesterday and a little bit of spaghetti. He said he feels a little better today.

I'm seriously thinking of just feeding him garlic where I can my mum used to swear by it 🤦‍♀️ he's having plenty of fluids water, juice etc and he takes his medication at specific times as I'm now back to doing them, when he does them he takes them willy nilly 🤦‍♀️.

He likes angel delight also so I gave him some of that a small portion so I'll try and get him to have something heavy in protein beans or egg or something today. He doesn't like salad so in this heat its hard to know what to give him really.

Thanks again 💙

[Readlots in reply to DD75]

Glad you’re getting out for a breath of fresh air. My mum said the same thing about garlic! So to boost him up, think the opposite of what you’d normally think of as healthy. Bolognaise great - stir in some cream, or mascarpone, add cheese on top. Instead of salad, a ham and cheese sandwich (buttered) - maybe just a quarter, or a piece of quiche.

[Readlots in reply to Readlots]

an evening snack before bed is important too - mum used to have a crscler and cheese.

[Readlots in reply to Readlots]

britishlivertrust.org.uk/in...

[Readlots in reply to Readlots]

Should have lead with this - wsh.nhs.uk/CMS-Documents/Pa...

It’s what the dietician gave me for Mum

[Witcat in reply to DD75]

Dear DD75, you have been given lots of good advise from others and I thought I would share what I used to do with the Ensure protein drinks to change them up a bit.Especially in this heat it might help. I bought the children's icelolly moulds and poured them into these and my husband had them as an icelolly.

Just a thought that might give him something cold that is also giving him the boost of protein.

My husband also had to have the NG feed and it definately did help but it is not pleasant but was very necessary to build up his strength.

I hope everything improves and all goes well at the assessment.

Take care

[DD75 in reply to Witcat]

Thank you 💙

[Hidden in reply to DD75]

Best wishes to you both and good luck with the operation.

I love spaghetti bolognaise eventually started buying it as a ready meal from Tesco while it was on special, sadly I discovered that it contained alcohol in the sauce, need to just be cautious when eating hospital food too, I have had experiences where the food was too salty or they had added salt, despite being on a low sodium diet, just have to be so careful. Good luck!

[Roy1955]

I know a little about antibiotics and rifaximin will NOT treat a chest infection.rifaximin remains in the gut and very little of it crosses into the system where the infection is.

[DD75 in reply to Roy1955]

Hi Roy1955,

Thank you for your reply.

It was a General Medical Doctor who said it not a gastro to be fair. He said he feels a bit better today 🤞

I've edited my post as I think it caused a few problems from reply I saw I didn't mean to I'm just super worried 😔

[Oldbits]

Hi, sorry you're having a bumpy time. Vent away it helps. Dietician is the best way as balancing multiple conditions is tricky. A chest infection can knock a healthy person down never mind a poorly one. Have you tried scrambled egg and a bit of poached salmon? Tasty, light and full of protein. A fav with my hubbie was custard and icecream but it does have the sugar in that's not so good for diabetes. I wish you well at your up coming appointment. X

[DD75 in reply to Oldbits]

Thank you Oldbits 💙🤗

Sadly he hates salmon 🤦‍♀️which is rubbish as i love it!!

but got him to have a few beans with cheese on and a mouthful of toast. I'm going for thr ice cream he has fast acting insulin and they let him have ice cream in hospital x tbh anything has got to be better than nothing and I'll just keep an eye on his sugars x

[Readlots in reply to DD75]

My kids are diabetic too so I know what a nightmare it is when they are ill. I assume he’s carb counting for his insulin, The beauty of fast acting multiple injection or insulin pumps is that you can eat what you want when you want, then bolus for it. He needs calories and fat at this stage, which is not what you’d normally say for diabetes, so the more ice cream the better. Make the Angel delight with full fat milk. And as others have said- ask your liver nurse for a referral to the dieticians.

[RugbyMama]

Oh lovely. I know what you mean about the gaunt face, my hubby has lost 6 stone since December and his face has borne the brunt of that.

Make sure he's eating little and often and choose low density, calorie rich foods. What about homemade protein shakes? Frozen banana, berries, any of the smoothie mixes from the frozen section of the supermarket, full fat unsweetened greek yogurt, vanilla protein powder with milk or water in a blender. Add hemp protein powder or switch to oat/nut milk. Cool in this heat but still helpful. Peanut butter on crackers or wholemeal toast, cubes of cheese. 6 small meals might be better for him than 3 big ones?

[DD75 in reply to RugbyMama]

Thank you RugbyMama 💙x

I managed to gey him to have a few bites of beans on toast with cheese on beans 🙏