Just a few steps more each day. What's your plan to get a bit fitter? 'm going to walk twice a day, [starting tomorrow]. What's your plan? It helps to know we are all in it together
Why do people wait for New Year to get... - British Liver Trust
That's so frustrating. We're like onions in a way. Peel off one layer obstacles and there's another, and another, and another. I find that. It takes me hours to be fit to step out with the dog. Then when I get back I'm tired and need a rest. It's hard to get out again without the dog. There's few missions I can do with her, very few shops allow dogs in. Even if I have strength to start a household job I forget what I'm doing soon after I start! You will be the same woman after the TP, the same only stronger. I hope it's soon Wassy. x
Hi Wass, hope it's soon!
I'm still trying to figure out this disease. Do you feel as though your muscles just don't get the message from you? That is how l feel after 15 minutes, tops, l can't push myself more and need to rest. If l get to the grocery store and the bank, then I am wiped out and need a nap. Wondering if this is just due to muscles needing re-conditioning?
l am totally compensated, all liver functions are normal despite cirrhosis.
Hehe filly but it said I was asleep when I wasn’t- and it did that every night so I stopped wearing it at night. Then it would record steps when I drove. Then it wouldn’t record coming up stairs. Then it wouldn’t come “alive” when it was meant to, then.... see the Amazon reviews — not a fan me. Doesn’t mean that I won’t try again though when they’ve improved things. Or I might just have had a bum device....
I'm still asking myself why would anyone want to know! Recently my son went for a run while I walked on the shore. When he showed me how far he'd run the area included a circle round me (he didn't) and a long run into the sea. (he didn't). And he's someone who spends all day at work examining the facts of matters !
Miles, I had a Fitbit and it was useless, sov like you took it back, but the health police complained that she couldn't keep an eye on my exercise. I then bought a cheapo one on Ebay for £6, and guess what, it actually works. Their all made in Ping Pong Land anyway, so why pay Fitbit prices.
The blood pressure reading are a little low compared to our proper one, and the best thing is you can sit on the nice comfy sofa, and just raise your arm up and down, and every one is a step 🤣🤣🤣. Never tried the sleep function, although when setting it up on the app, it did ask for my normal sleep period. The only downside to it, is it needs charging every 36 hours.
I bought three cheapo ones too. One was so heavy I have never worn it, one would not charge and guess what nor would the third one! I have given up measuring for now! I do use an app called mapmywalk for the very rare occasions these days when I can walk. Before back op I got up to 0.9 of a mile and now I can do about 0.4 of a mile on a good day - three out of 21 so far 😀.
Ah well - c’est la vie, eh!
I think it's a blood sugar thing. That's why at this stage I should eat carbs every 2 hours. I think the sudden increase in activity shocks my body!! It's a very unpleasant feeling though, dizzy, nausea, feeling like I might collapse, no strength. Think it's part of cirrhosis, but the fatigue sudden feeling like battery has gone dead is part of PBC, I get that too!! What a combo that is!!
I've started to take screw-capped packs of baby pureed fruits with me when I go out. I drink some from the pack so I don't go over 2 hours. (that's since I wound up in hosp thinking I'd had a heart attack.) I think it was you who told me to take sugar and water with me? I feel safer now with that in my bag!
I feel better for going out though, inspite of the difficulty. I had a shower today. I haven't had one for three days!!! That's how tired I can get. Walk or shower...
I think people shower too much. It's not good for the skin. Natural oils are important, and unless you actually get dirty or very sweaty I think daily showers aren't necessary. When I was young we had one bath a week, and a sink wash (pits and bits) daily.
I'm very similar to you Fili, it's such an ordeal. It takes ages to wash my hair and it never feels properly rinsed. When I worked I had a daily shower and washed my hair every other day. My head was always itchy, now I wash my hair once a week it doesn't itch the same. Just PBC itch which feels different.
I love showers and it stops me feeling itchy! I'd have one night and morning if Ihad energy. Isn't it just the soaps that are bad for us, the lathery ones that dry our skin. I use oat oil shower stuff and often just water. Mostly use a shower cap so I don't get wet hair, like you, no longer was hair daily! If I want to get into house-cleaning i have a shower first to waken and clean myself and limber=up! :-)Though I have to stay mindful or I go to lie down after a shower and forget I wanted to clean the house! So not having a shower is a problem for me. x
I walk my wee dog Teddy for an hour most days, weather permitting of course.
I am always tired, so on my bad days I give it a miss.
It's better in the summer with all the mowing of my 2 large lawns, and the rest of the gardening.
It looks like you have borrowed my Teddy's leg for your photo😊😊😊.
No Phyllis, fortunately he doesn't. In fact all the dogs i've owned over the years, and that's a lot 'cause i used to breed and show), have never done it, except bitches cleaning puppies bums.
Teddy is a Lakeland Terrier, and would be mortified if I made him wear boots or coats. I did have plastic onesies, for the Old English sheepdogs to keep them clean on the way to the show ring though.
To stop the poo munching, try a loose fitting muzzle, or if at home you can use bitter apple liquid to train her not to. it also works on furniture.
Alfred - you are our star walker! I wanted to get a sense of how difficult it is to move, and how people here just keep doing it anyway. Difficult to know where to draw the line before it's too late, walking wise? I'm more at risk on a good day than on a brainfogged slow day. It's very annoying trying to get the balance...
I had a really good holiday and did some good walks. Got home to discover a leaking toilet cistern ( one of these concealed ones that involves removing cupboard fronts to get at) and had to do all sorts of contortions to fix a new one in. That set me back a bit joint and back wise.
Since then we have been revamping the bathroom involving electrical work and wife holding me steady on step ladders etc. All quite a big job but finished now
LOL Fili @ pelvic floor.
When I'm ok I try to do a little more than yesterday. Just a little each day makes a big difference after a couple of weeks. Of course there are days when it's not possible, that's when I try to take up where I left off. Some times a bit too much and that can set me back for a while.
With me it's just mainly joint problems and tiredness but I remember well the feeling of sheer exhaustion and weakness before transplant
After being ill for so long and also on chemo for 3 years I was very weak by the time I got to transplant. After transplant I was too weak to be able to get in and out of the bath and I literally couldn't get myself up from the floor if I knelt down. I'm a lot stronger now and it's lovely to be able to have a soak in the bath.
It really is important to try to stay as strong as you possibly can at any stage of this illness.
Alf , can I please ask how long were you debilitated for post tp? My husband is 20 days post tp, he was very ill before only able to walk very very short distances as depleted of muscle. He is exhausted post op, just wants to sleep the whole time. He wasn't like this before they discharged him. I assume he was running on adrenalin. Coming home seems to have had a negative effect. I'm expecting a long recovery, but just wondered does this sound like your pathway ?
I was very weak and muscle wasted by the time I received a transplant. I had been classed as terminal with no hope of transplant for well over 4 years before. I had HCC (2 tumours) and cirrhosis.
I went on a trial called TACE 2 with the hopes of extending my life by 18 months, or possibly longer, if I responded to the treatment. The trial involved chemo embolization and daily tablet chemotherapy.
The Chemotherapy (Sorafenib) had a lot of unpleasant side effects which made it difficult for me to be active.
The trial ended suddenly after I had been on it for 3 years as there was no conclusive proof that sorafenib was any benefit when used alongside TACE.
I then went into liver failure and this was the first time that I was actually considered for transplant.
I was only on the list for 10 weeks and I got my transplant 1st call.
After transplant I was very weak and wasted as I've previously said, I also had the problem that my bones and joints had suffered through all of this (been diagnosed since with osteopenia, osteoporosis, osteoarthritis and sclerosis of the lower spine.) I also had problems with the operational wound healing (it took 13 weeks).
Despite all that and accidents through being weak after transplant (2 spinal fractures that were healing and then fell opening up the fractures and causing one more big one) once the op wound had healed and I could get about I started to get stronger, slowly, bit by bit, day by day.
I'm now 15 months post transplant and I am way stronger than I was in the early days post transplant.
As far as my liver is concerned I am very well and am now only on 3mg of TAC a day (started out on 12mg). My problems now are just joint and bone issues.
Your hubby has been through a huge operation and he will feel very tired as his body is using it's energy to repair itself. If it's tiredness and general muscle wastage that are the issue then I can assure you in a few months he will be feeling a new man. He just has to remember to be patient and take things slowly while he is in recovery.
Sorry if my reply has been long winded but I just wanted to get across the fact that if I can recover and feel great with all the problems that I've had to face then your hubby should be feeling fantastic when he gets to the point that I am at now.
Wishing your hubby a full and uneventful recovery and sending my very best wishes for your 'new life' together.
Thank you for taking the time to answer. I know in my heart that it will take a long time to build up again as he has no reserve. He was so ill, he was refused listing by one trust and after a second opinion got listed and then transplanted after 5 days.
Its reassuring that you recovered from such a debilitating situation. I suppose it's lack of confidence as once you are back at home, the hospital support network is not immediately surrounding you.
We are both very grateful for this chance of a new life and I think both incredibly shellshocked by the last few months.
Onwards and upwards.
Hi Marie. I know what you are saying about once you are back home and going it alone so to speak.
It's great to have this wonderful site and other transplantees and the Liver Trust admin to talk to help allay and worries or fears.
I discovered this site about a month after transplant and it's been invaluable for me!
Eating plenty of protein to aid healing is good for your hubby at this stage and plenty of water is good too for so many reasons. No lifting anything of course is a golden rule.
You look after yourself too whilst you're busy looking after hubby. The worst is all behind you now. Make sure you get your own feet up and cuppa time!
I hope you give youself protein snacks as well to cope with the work. I know a young man who didn't do hoovering and his girlfriend refused as well. They got a robotic one. (That didn't do a lot either). Who's the (man) who said if you don't do aany housework for 6 months you never have to again because it doesn't get worse? That's not true either. MEN!
I've just been explaining your history to my husband and then showed him the picture of your steep hill climb. Hopefully it'll give him inspiration.
How long did it take to get your appetite back? I think thats a majot issue and he says food tastes 'odd'. Before TP everything tasted metallic, (I put it down to the ascities). I suppose it takes time for the taste bugs to readjust.
It took me a few months to get anything like my old appetite back. It was like the recovery, a very gradual thing.
I suppose when you are not expending much energy the body isn't crying out for calories.
Is your hubby still having the energy drinks? I had those on prescription for a couple more months after transplant .
I'll be the packhorse for now, don't want to risk herniation of the wound. Poor husband had a large umbilical hernia from the ascities preop which they've fixed during the transplant. So he's got extra risks. We don't want a repeat of that, he was really self conscious of the 'alien'. It was defiantely an entity of its own.
I haven't had transplant, but I have had major abdominal surgery. Aside from the nervy feeling of being away from the hospital after many weeks, my body took a longer time to recover from the shock of surgery. My head could understand it as an idea, but my body had to acclimatise at its own pace. That's how I understood it, anyway. It took 18months to feel a new normal again. It must be harder for the one standing close to the patient in recovery. Best wishes with it Marie.
Phew! That’s a relief! I think I am snap with you (two?) then! Alfredthegreat and I had our liver TPs within 3 days of each other last August (2018) and when we met up on this forum a couple of months afterwards we set ourselves the challenge of running some sort of race this year. Unfortunately both of us have since suffered unrelated to liver back problems. He broke his spine and I had to have a back op. We haven’t joked much about that race since!
Ah well, c’est la vie, n’est pas.
I hope you will be able to get hubbie out and about soon - it just does take time as everyone on here has said. But it really should get better! 🤞🤞🤞 for both of you.
Waffling on a bit as I do, we got a robot hoover - it is the best thing since sliced bread, but then our floors are all stone tiled (ex cow shed) and we don’t have any rugs 😕. So I don’t know how good it would be on carpets and rugs. I sit there like Lord Muck and set it going almost every day 😀. My excuse is a rather large incisional hernia ( another review of options at QEHB next week - boo hoo - I know what’s coming! He said wait till after the back op! ) So here we go, here we go, here we go-ohh, or some such rubbish... Hence why I always go on about being careful about lifting, carrying etc.....
Good luck to you both Marie.
I used to envy people who couldn't put on weight- I'm wiser now - that is a tricky one. Do you like bone broths? They take too long to make but there are some v good beef ones you can get on line in powder form that are organic . I think they are great for nourishment in themselves but also for helping stimulate appetite. They are very good for our bones too. Quite a big outlay but value for money if it's what you like.
That's good news! When my muscles used to ache after exercise I felt it was a happy-ache! They can ache now just if I lift my arm to hang up a coat. That's because of a lactic acid release that doesn't correspond with the usual amount of exercise it takes to get that sting! That comes with PBC and liver issues. You've put them behind you now. I'm really pleased for you that you are making such progress.
Hi mattymoo, ya know, when I say exercise, it can mean clenching my fists and stretching out my fingers repeatedly while sitting in an armchair, right? Or balancing on one leg during the commercial break on a xmas movie...
Well done on yours, I hope you enjoyed how you felt after it even if you didn't want to do it? And I hope all is well for you still. x
Hiya. I completely understand and I too was delighted to be accepted on the list. I did everything to the letter and on my 2nd call up was told that I was much too well and fit. So yes, I hope I have managed to conquer the bas***d and have a semblance of normality, not just for me, but my lovely family.
Sorry if I seem not to take it
seriously I absolutely do!!
Hope not to have caused offence 🤗