Please help, fiancé travelling and fe... - British Liver Trust

British Liver Trust

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Please help, fiancé travelling and feeling off

Mywildlove
Mywildlove

Hello. My fiancé had to fly down to DC for work on Monday. He was really busy there and walked about 8-10 miles altogether, which is he not used to. He also didn’t get much sleep because he has a hard time sleeping when he’s away from home. He probably got about 10 hours of sleep over 3 days time. He is flying home today but he isn’t feeling well. He said his belly is a little swollen, he’s a little “out of it” which I’m hoping is from being exhausted, his words have been a little slurred but that also happens to him when he gets really tired (he’s always suffered from insomnia a bit) he said everything has a bad smell but he said it’s more like his sense of smell is heightened. I asked if food tastes ok and he said it does, it tastes fine. He hasn’t been able to eat a whole lot because he really watches his diet so he’s been living off of fresh fruit, nuts, yogurt, and salad here and there. He’s really not used to being so active and going there for work was really exciting and overwhelming for him. I’m scared and hoping it’s not HE but he is going to the doctor/hospital as soon as possible when he gets back if he needs to. My question is, can you feel this way when you have cirrhosis and you push yourself? He sounds clear headed when I talk to him on the phone, just really tired. Please help me, I am absolutely losing my shit right now.

21 Replies
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He also said he feels better when he eats something sugary, which I jumped him for eating.

AyrshireK
AyrshireK in reply to Mywildlove

Can I ask why you jumped on him for eating a sugary snack? With cirrhosis he needs to fuel properly and sadly not fill up on veggies and salad. Carbohydrates and protein are really important and it's no wonder a sugary snack gave him the lift he needed because his body can no longer metabolise stored energy from food anymore. The exertion he's been under - the long walks etc. will have taken a lot out of him and rather than burning energy from fat which is what a healthy liver will do his body will have started to burn his muscles for fuel. A person with cirrhosis has to eat little and often to keep themselves fuelled so you need to top up every couple of hours or your energy levels do just crash.

My hubby has occasions where when he hasn't fuelled sufficiently it's like his body and mind both switch off - like pulling the plug. His physical energy fails and his cognitive function too.

If you see a liver specialist dietician the diet plan for later stage cirrhosis is like weight watchers in reverse - full fat cream, biscuits, cakes and all sorts of stuff.

Katie

Mywildlove
Mywildlove in reply to AyrshireK

I didn’t know that, I have read that sugar is hard on the liver so he doesn’t eat much of it. Only as a treat here and there. I am glad he ate something, I would rather he eat something then nothing at all, I just don’t want him to put more stress on his body.

He ate a salad and drank a lot of water and feels better now, he’s in the air and will be home in a few hours. So it’s alright for him to eat cookies and such? He does have ice cream fairly often.

AyrshireK
AyrshireK in reply to Mywildlove

Obviously he needs to fuel and carbs provide fuel which is instantly available. There are differently dietary requirements when you have full blown cirrhosis - in early liver disease where you are eating to 'look after your liver' then salad and veggies and all that are great. But later on fuelling and eating for muscle protection are required.

Katie

Hidden
Hidden in reply to Mywildlove

Some here apparently know or have been informed by their medical professionals what foods to consume when at various stages of liver disease.

Besides no salt/low salt foods and not too many beverages/fluids (non-alcoholic, of course) due to ascites, my husband's doctors have not relayed which foods he should eat or avoid.

I believe that a dietician will be included as part of a team currently being assembled for my husband and look forward to learning more about diet.

It is my understanding that at this time (husband very recently diagnosed with stage 4 cirrhosis), any food is better than none or next to none in his case.

But, certainly your husband's medical team should be able to best advise you.

All the best.

Idk if anyone will reply but I’m updating anyway. I just talked to him and he ate a salad at the airport and said he feels much better, just exhausted. I guess all I can do is wait, he will be home in about 4 hours. Thankfully his son is on his way here to wait for him, we are all so worried.

bantam12
bantam12 in reply to Mywildlove

Hopefully it is just exhaustion and possibly a bit of anxiety, fingers crossed he will be ok once back in his own environment and able to rest.

Mywildlove
Mywildlove in reply to bantam12

Thank you bantam, he actually had a really bad panic attack last night and thought he was dying. He ended up calling the health hotline that his work offers and they talked him through it. He had never had a panic attack that bad before so he didn’t know how scary they feel. I’m hoping that’s what it is too, thank you so much.

bantam12
bantam12 in reply to Mywildlove

Anxiety is such a horrible thing to suffer with and it sounds like the panic attack might have been the likely cause of him not feeling well.

Take care x

Mywildlove
Mywildlove in reply to bantam12

It really is, I hate it and I hate that he is experiencing it now. I think I am part of the cause because I’ve been so worried with him gone. I need to keep that in check so I don’t add unnecessary stress for him.

bantam12
bantam12 in reply to Mywildlove

Very difficult and of course you are worried, I know exactly how you feel as my husband has serious heart problems and I worry every minute of every day, we've had so many emergency dashes to hospital I can't help being anxious.

Take care and be kind to yourself xx

Mywildlove
Mywildlove in reply to bantam12

I’m so sorry about your husband having health issues too. People have told me to stop worrying so much but how do you do that? It’s not like you can just turn it off when it gets to be too much. I hope things are well for you and your husband ♥️

bantam12
bantam12 in reply to Mywildlove

No you can't switch off, only those of us in that situation can truly understand how difficult it is.

Keep smiling xx

mncold
mncold in reply to Mywildlove

Hi Mywildlove,

It is an easy thing to tell others to not worry.

I know I worry and nag [my superpower] when I think hubby is not taking care of himself well or if I am worried I'm seeing signs of HE.

Having said that - one can't be in a state of panic 24 hours a day and I have had to take myself aside and give myself a talking to on a few occasions - it helps me. There may be somethings you can do for yourself to keep your worry at a reasonable level for you.

If he hasn't shown signs of HE that is good - but the stress of having you asking him may have made a stressful trip a little more stressful - we all learn how to handle things with our partner along the way. At least your hubby can get on a plane - mine doesn't even want to fly anymore he get claustrophobic these days - has to do open MRI's.

Feel free to message me or ask me anything, if you want or need.

Hope he is doing well and take care of yourself, too.

Best wishes,

Mary

Mywildlove
Mywildlove in reply to mncold

Hi mncold and thank you! I feel selfish saying this but I’ve decided to TRY to ease up a bit because it’s making me absolutely insane. If he doesn’t want to eat breakfast some days or a snack before bed, I’m not going to press the matter. I have heart problems and worrying so much has caused issues with me lately. I will of course take care of him and all that but I won’t drive us both crazy, at least I hope not haha he’s actually doing very well today. He was just exhausted from the trip. And strangely enough, his color is normal now. He still had a touch of yellow when he left but he was in the sun a lot when he was gone. Anyway I’m rambling haha I crochet like a mad woman, especially when stressed, and I’m pretty damned good too (toot toot) haha it helps my anxiety a lot.

I’m sorry about your husband not flying, I am the same way though. It’s scary as heck! Thank you for your comment and your help, I appreciate it so much!

I just realized that I sound like a little old lady when I said I have heart problems and love to crochet hahaha I’m old at heart I guess 😂

mncold
mncold in reply to Mywildlove

Hi,

No, you don't sound like a little old lady - you sound like a worried spouse :-)

I can crochet, probably not as well as you though - and while I don't think of myself as a little old lady - I think I might actually be one LOL. I'm just young compared to my 94 year old mother-in-law.

Just to let you know, in case there are differences [which may make a difference in nag levels]. My husband is on lactulose, among his other meds to reduce or eliminate episodes of HE and his doctors want him to poop 3x a day - he is one of those who if he has a decent breakfast he isn't hungry for lunch and then has less to get rid of - hence I nag [it is all his fault LOL We'll be married 46 years in Aug :-)]

Just wanted to give you some more info.

Medical issues can make you crazy when they are your spouse's - I remember my Dad nagging my Mom to eat because she had diabetes type 2, and liked to skip meals. I figure for me I can blame it on genetics.

I'm glad to hear your hubby looks and feels better, that always calms me, too and gives me a chance to regroup.

Take care & best wishes,

Mary

The trip may have have just worn him out if he isnt used to it since being diagnosed, I have gone through maybe a handful of times the last 18 months where my smell is extremely sensitive, I can smell everything especially bad smells and I have no other signs of HE, I flew for the first time last month and got so worked up about it I barely could get on the plane, sounds like some exhaustion combined with anxiety

Mywildlove
Mywildlove in reply to jak547

He’s not used it, he’s used to grabbing a few groceries or running errands and that’s pretty much it. I do think I had a lot to do with his anxiety level. I was worried he would suddenly have an HE episode while gone, even though he hasn’t been diagnosed with it yet. So I kept telling him what to look for and it scared him. I wasn’t thinking, I was too wrapped up in my own worry and anxiety at the time. I feel terrible but I’ve definitely learned from it. Thank you so much for commenting and helping me!

Hi guys, thank you for commenting and helping me. I was losing it earlier, I was so scared. In case you haven’t noticed, I tend to do that haha ugh.

I’m going to see how he is when he gets home and go from there. Thank you all again so very much.

Hello hope they feel better. To be honest I was assigned a dietician at the hospital and was shocked at what it should be eating with this condition, the total opposite of what I thought. So as a low carb guy I have had to change my diet which has been amazing! Well worth getting advice otherwise your muscle could be at risk and you need a different make up of food. Good luck.

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