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British Liver Trust
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Frozen cold

My husbands always ice cold, all summer he was the same, anyone else the same?

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I’m always cold to touch. I find if I feel cold it takes me ages to feel warm again. Only been like it since I’ve been on blood thinners.

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He's not on blood thinners. We must be the only house that had heating on and the electric blanket on all summer! He's cold as stone!

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I suppose his body heat can't heat all the fluid, he gets ascites bad.

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My mom is like that, too. She got a space heater in her room--if it isn't more than 80 degrees (27 degrees for you Brits), she's freezing. Sometimes she's had it as high as 90F (32C)!

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Hi Yuiop, I was always cold pre transplant. Even in the summer that we have had this year I would sit in long sleeves and a body warmer. My wife was walking around in shorts and vesty tops and complaining that she was melting. I remember sitting in the conservatory one day in my body warmer and my wife was really concerned that I would be really ill if I stayed in there because it was too hot for her to stay in even for a few minutes, She kept bringing me cold drinks and trying to prize me out of there. It felt pleasantly warm to me, I couldn't see what all the fuss was about. Good job that my wife has enough common sense for both of us! lol. All the best. Alf

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Alfie - (and yuiop) yes concur. When at Assessment clinic we were asked who was cold and who was hot when at home. I think all there said yes, potential transplantee was freezing whilst partner was hot. 😁.

(Corrected text again - I’d swear this site changes what you write to make you look like an idiot - oh, wait, I am an idiot....or is it

a- a dream

b - brainfog

Answers on a postcard to me please...)

Miles

🇧🇧

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Hey Mil. You do make me laugh. Yes typing on here I have to check what I've put before I send because my broad band signal is slow and when I type some of the letters I'm typing start appearing amongst words that I've already typed and so sometimes when I check what I've put It's the biggest load of gobble-de-gook, back to front rubbish ever! lol. Al

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Aha is that what it is!! Our broadband is appalling- so no wonder I write rubbish and I expect sometimes the poor broaband speed adds to it....

Miles

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One of the 500 jobs the liver does, is to monitor and control body temperature. If the liver is damage through possible scaring, then it may well be the case that the scaring could be interfering with that part of the liver that controls temperature.

I truly marvel at this remarkable organ, now that I have just a smiggin of knowledge I am now in total awe of it's function. I just wish I knew then what I know now, I would have treated my own liver with a lot more respect. It really is a most wondrous powerhouse.

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We all post transplant will look after our livers so well that I wonder if we could actually be liver donors when we leave this mortal coil? Alf

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Good question

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Good point but my new liver is already 66. I mean thats REALLY knocking on a bit, isnt it alf .....

🤭🤭

Miles

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Soldier on!

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Could have enough gas till 90!

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Well yuiop is that good or bad? I’m not sure - I’ d rather pop off on some operating table or in my sleep in say 10 years time 😁😁. Probably when, sorry if, i get another 10 years in, I’d probably say, oh just a few more years please 😁😁😁😁

#when it was full it was full

And when it was empty it was empty

But when it was only halfway filled

It was neither full nor empty”

#Adaptation of “Old Tarlton's song.”

Mine is meant to be half full but regrettably sometimes it’s half empty.

#rabbit rabbit rabbit rabbit rabbit rabbit # etc....

Miles

🇧🇧

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I've not been told anything about my donor and so I don't know the age of my new liver. Al

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Aha but have you asked alfie?

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Yes I asked a head liver nurse if I was allowed to know anything about my donor and she just shook her head. I see my transplant team again in 10 days so i think I will ask them. Even a couple of basic details would be ok. I think about the donor very often (as I'm sure you do) and think about the trauma that their family would be going through whilst my life was being saved. It pulls on a lot of emotions, it all feels so incredible that it's happened to me and I'm going to live. It's a bit like...pinch me! is this real ? am I worthy of this? Emotional Alf

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Alfred

Extract from BLT website...

“Organ donation is confidential, so while you may be given some details about the person donating their organs you will not be given any identifiable information and you will not be told who they are. You may have different feelings about your transplant, from relief to fear. You may well feel sad for the person who has died and for their grieving family. It is important to remember that organ donation is something positive that can come out of what is otherwise a tragic event: this can bring a lot of comfort to the bereaved family.

Whatever your thoughts are now, you may feel differently after your transplant. After your transplant you may wish to write to the donor’s family. There is no rush to do this; in many ways it is better to wait until you are out of hospital and well on the road to recovery before you write. This also allows the family to come to terms with their loss and to grieve.”

Pretty much on the fence imho!

Miles

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No, not wishing to get info that will identify the donor but info like you got Mil. Alf

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Yes I thought that but if your assessment team won’t give you anything then that is odd indeed!

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I was the same pre transplant. I slept in trousers, socks, heavy jumpers, four hospital blankets and one of my own blankets. I warmed up after my first blood infusion but subsequent infusions had no effect. Post transplant I’m back to normal although my hands occasionally get cold.

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Transfusion! Hope my hepatic encephalopathy is not returning!

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Wow Gordon - a transfusion! That must be pretty rare isn’t it - well I haven’t come across it. How do they do that - “I know nothing” - say in Spanish accent (no comments about political correctness please- it is a quote from a TV show which most in UK should know 😁)

Miles

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Not as rare as you think. I also had to have a transfusion before my liver transplant 3.5 years ago

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BAAAAAAZIL!!!!!!

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Maaannnuuueeeelllll

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Que'

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Haha

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Hi, never had a transfusion but I can see how that would improve things.

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Hi yuiop - I was exactly same as alfie - obviously though it was my wife complaing at me not alfie’s 😁

Miles

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I'm sure she would have complained at you too Mil if she could have! lol

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😁

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Hi

Yes I was in exactly the same boat this time last year, even in the summer I’d want the central heating and log burner on ! My hands and feet were always cold, it was one of the huge side effects I’m afraid, I found cashmere jumpers and socks helped ( expensive) but well worth it. Post transplant the coldness totally disappeared so try and layer up !

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We have 2 log burners in our house, if it's under 30 it's too cold for him!

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Yes. 2 log burners + central heating here but was still cold. Alf

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I use Pernaton to keep my body temp up but also have about 10 baths a day!!

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Not much chance of a bath in here, he can't get in it. Stove on, a blanket, a hat and a hot water bottle! Oh, and the electric blanket on all night!

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Do try Pernaton - like Deep Heat/Ralgex but without the aroma and lasts for ages!!

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I too was too weak to get out of bath pre transplant. Too weak now through 4 years muscle wastage but plan to build my muscles back up when my back will let me. Would love to soak in a bath to ease my back. I bet when I at last can that my back will be better!! lol.

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Sounds like a goal

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Alf I can’t even say anything remotely funny about that 😟.

Since you mentioned backs I’ve got a story about my back. If you had 30 mins I could tell you. Well, I could if I could stay awake for half an hour to write it 😗. So you can breathe a sigh of relief!

Milo

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Hi Mil. Just seen this post. Hopefully when you get your op then your back will be sorted. Back pain is miserable! At least now my op wound is healed (Or as good as) I can wear a large elastic support belt round my waist and it definitely helps reduce the pain I get when trying to stand. Still got the ache but it's more bearable without the sharp pain. alf

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That’s progress alf. Its been a long time for you to get there - 11 weeks. I suppose it’s because you’re getting on a bit.....

[joke 😁Yghhi

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Stop yer cheek Milo or I'll start boring you about the good old days when you could get 4 black jacks for Id and a sherbet dab for 2d and I used to hopscotch down the Great North Road (before it became the A1) to get them!! lol.

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Oh I don’t think you’d ever bore me fred. Btw I fell asleep writing that post and obviously inadvertently sent it in my sleep hence odd letters ar end lol lol lol

Miles

Did you really skip down the great north road?

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Played footie on it,cricket, tennis, you name it. You could keep a look out for the next car, probably one every couple of mins in those days (well it was a busy road! lol).

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Thats so cool! Those were the days, eh!

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Yuiop, Yes I was like that, even during the heat wave. Wife in ‘hot flushes’ stage of life, so at but of a problem. All good now post transplant. Good luck.

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Yes. I'm always cold. Right to the bone. Usually when I wake up either from a nights sleep or a nap. It's awful. Very uncomfortable.

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Yep. I was the only one sat in the office wearing a jumper in the summer, quite often even had to put my coat on over the top too.

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I'm breaking sweat to keep him warm! Oops, that sounds naughty! Haha

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Yes my husband is getting close to the end of end stage cirrhosis. He has outlived the doctors prediction by 2 months now. His hands and arms, legs and feet freeze all of the time, to the point of wearing long underwear and gloves in the summer time. We also got out the electric blanket in september. The doctors say that his extremities are freezing because his liver has a lot to do with regulating body temp. His liver is not working very good so his body is trying to keep his core organs and his brain warm, There for most of his warm blood leaves his arms and legs and is trying to protect vital organs. Doctors can't do anything for it. They told him to just stay bundled up. Sometimes he burns me out of the bedroom but I know he is the one suffering.

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He’s the same, he been frozen all summer. I tell him he’s like sleeping with a huge hot water bottle once the electric blanket heats him up. I bought an overblanket, it was expensive but worth every penny as it does the trick x

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