Sun sea and a +e: Hi everyone, as you... - British Liver Trust

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Sun sea and a +e

jules45 profile image
40 Replies

Hi everyone, as you know I went to corfu innseptembervand stayed reasonably healthy. Two weeks later my sister had booked us to Tenerife. My back went at Cardiff airport and I was bent double so had a wheelchair much to my sisters disgust. Arrived at the resort in agony. The next day got a taxi to the hospital and they gave me injections and tablets. The following morning I tried to get out of bed and my left leg gave way and I couldn't get up. Sister rang reception and a man helped me onto the bed and called a private doctor. I had hired a walk a long trolley to help me walk. The private doctor came and more injections and tablets. After he left I used my trolley to go on the balcony and my leg gave way and I crashed head first into the wall. My sister was getting angrier with me and showed it. Travel insurance company wanted me to go into hospital and miss my flight home. I was getting worse. Managed to get a fit to fly certificate and had wheelchair assistance back to UK. My hand had gone numb and part of my leg. Drove to Abergavenny hospital, I don't know how and was admitted straight away. It turned out that the drugs given to me are totally toxic to liver and I stayed in for 9 days with a varicies bleed, a decomposit liver, fluid in stomach and legs which they wouldn't drain, p rolapsed discs in my back. I'm home now, waiting for physios as I can't walk properly. So I didn't have a good holiday and my sister isn't speaking to me as in her words, I ruined her holiday. If I'd have stayed in tenerife hospital I would be dead by now, Julie xx

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jules45
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40 Replies
kitkatkaz profile image
kitkatkaz

OMG! I am glad you're back on track now. What were the drugs they gave you, it's handy to know for all of us if they affect the liver so badly. Was in Corfu myself end August (after making sure where the nearest hospital was before I went) and only 2.5 hours flight it didn't seem too risky and, bar for a swollen foot and airport assistance all went smoothly. I feel very sad for you that your sister is blaming you for ruining her holiday, doesn't she understand how things are for you? How are things now? I am struggling a bit, swollen foot - just one - and no ideas what is causing it really, plus still on warfarin for the blood clot in Portal vein, if I do something one day I have to rest up the next, it takes a special someone to put up with me and go away on a holiday, but I've been lucky so far. Take care Julie, K

jules45 profile image
jules45 in reply to kitkatkaz

Hi, the main one was diclofen or they call it diclofenico, and something called trigon, plus the private doctor gave me paracetamol, ibuprofen and tramadol, I was determined to get home to our wonderful nhs so got a fit to fly certificate as my insurance company were going to contact ryanair x

AyrshireK profile image
AyrshireK in reply to jules45

Yup there are your problem drugs right there Ibuprofen and Diclofenac both non-steroidal anti inflammatory drugs and both no, nos for the liver as they have blood thinning properties (hence your variceal bleed) and are extremely liver toxic. Paracetemol and tramadol are both regularly prescribed by liver units here and taken in lower doses than normal are ok. The Trigon looks to be an artificial version of prednisolone steroid.

Hope you are on the mend soon, glad you're still with us after all that.

Katie

jules45 profile image
jules45 in reply to AyrshireK

Hi Katie, thanks for your reply, I've been so I'll. My ankles have been huge. I'm now on carvedilol 12.5mg and rifaximin 2 550 mg per day along with the usual other tabs, i.e., thiamin, diuretics etc. Got occupational therapy coming this afternoon and waiting on physios to help get me walking again. It's been a nightmare x

How awful for you.

Speedy recovery

Your sister needs a stern word me thinks x

jules45 profile image
jules45 in reply to

Hi, yes, my sister was very spiteful as is my mother when my sister told her. Thanks for your kind words, Julie cxx

in reply to jules45

💖💜xxx

jules45 profile image
jules45 in reply to

Thank you x

Miche49uk profile image
Miche49uk in reply to jules45

A bit of empathy goes a long way, glad you're on the mend xx

jules45 profile image
jules45 in reply to Miche49uk

thank you very much. Julie x

kitkatkaz profile image
kitkatkaz

Thanks for your reply, as mentioned by others above, Ibroprofen is not good for liver, that's why we only have paracetemol and codeine prescribed I guess. Your sister needs to be at one of your hospital appointments for a reality check! Thinking of you and wishing you the very best. K

jules45 profile image
jules45 in reply to kitkatkaz

Hi, thanks a lot for your support, it was interesting to read Katie post about the drugs they gave me, hope your keeping well, Julie x

in reply to jules45

Hi

I really feel for you, so pleased you got home safely. Your sister and your Mum need a stern talking to!! Don't they realise how I'll you felt. They could perhaps read what some people have put on here!! Please take care. Lots of love Lynne xxxx

jules45 profile image
jules45 in reply to

hi Lynn. thank you so much for your kind words.found out today why my back went.then on holiday it's because I have degenerative disc disease which came as a shock so I don't know if I will walk properly again. so another battle ahead love Julie xx

in reply to jules45

I feel so sorry for you, as if you haven't enough to cope with already.

I've got hida scan on Monday, this will determine whether I've got leisions, sphincter of Oddi or both knowing my luck!! I'm in quite a bit if pain tonight, as you've probably guessed that's why I'm still awake!!!! Please take care. Lots of love Lynne xxxx

jules45 profile image
jules45

Hi Lynne, thank you for your supportive message, I can only wish you the best of luck for Monday. Hopefully they won't find anything. I get cramp in my liver which stops me in my tracks but not a proper pain, just twinge.

Think of you on Monday

Julie xx

Blondie5 profile image
Blondie5

Hope you feel better soon. I don’t post on here as I do not have an illness, but my 18 yr old niece has AIH and cirrhosis, she lives abroad but I would give anything to take her on a holiday, even if it means a struggle. So your sisters attitude makes me very sad, she should cherish every minute she can spend with you, good or bad. Hope you can make up as family and especially siblings are very important.

jules45 profile image
jules45 in reply to Blondie5

Hi, it didn't help me when my mother posted all over Facebook that I was a heavy drinker even though I've been sober for 5 years, I nearly lost a lot of friends and she did it when I was gravely ill in hospital. I have forgiven them so many times but can't with this one. Waiting for physio today to try and get me walking as in hospital after ct and Mr I I've been diagnosed with degenerative disc disease in my back. Just hope I get mobile soon, hope your niece is as well as to be expected, best wishes, Julie xx

Blondie5 profile image
Blondie5

Oh Julie I feel sad for you. That must be so hurtful especially from your mum. So yes, I do understand that it would be hard to be forgive them. Hopefully they will realise how wrong they are. As you say you have been sober for 5 yrs, but even if you weren’t they should still support you. Sorry to hear about your other diagnosis. Just all piles up doesn’t it. My niece is well thank you. She has had it for 7 years and has her spells in hospital every so often but ok for now. I used to google and it drove me nuts, till I found this site and realised that all is not lost (she is my twin’s daughter and I helped raise her, so she is very close to my heart x

jules45 profile image
jules45

Hi again, physio just been and did some tests on me and gave me crutches. Can get a wheelchair if I go to Tesco. Everything has gone wrong but at least the fluid is going away slowly. Your neice is very unlucky to have cirhossis and im glad shes stable. I dont google, if i need to know anything i ask doctor or in my case today i asked if degenerative disc disease gets better, not Google it. I was raised by my nanny and she was so kind and caring towards me

Best wishes, Julie x

19581979 profile image
19581979

Hi Julie

We can choose our friends but not our blood relatives. Had to add that in as we do choose our partners. People are sometimes quite unpredictable. All we can do is let them deal with their own issues in their own way and step back so we do not get involved in the arguments. You have more than enough to deal with, without worrying about others at the moment. Concentrate on getting yourself better or at least as fit as you can.

I am really sorry to hear about your back. It is almost certainly extremely painful, so I hope they can ease that for you. When my spinal injury finally went from a compression to an incomplete injury, they had to give me quite a lot of morphine just to examine me. I hope that they can help you with it, including ideas on how to reduce risks of it giving a repeat performance.

I hate to say it but make sure you stick to the exercises the physio gives you. It can sometimes be quite painful to do them, so I know how easy it is to drop them off when either it is too painful or it feels like it is a bit better and you think you no longer have to do them. Keeping to the exercises and a lot of luck meant I was able to walk a little eventually. The reality that was assumed for me, was that I would never walk again. You managed to keep alcohol free for 5 years the exercises will be something I know you can stick to.

Next holiday try good old British seaside holidays, you can always tell which season it is, by the temperature of the rain.

Take care

Gx

jules45 profile image
jules45

Hi, your very right, my mother's lack of care towards me when I was little deemed it necessary for me to be looked after by my grandparents so she never bonded with me. My younger sister is very close to her and the pair of them deserve each other. Once, when I was feeling very depressed I phoned her for support and she told me I'd be better off in heaven.

My back is getting me down. Physio came yesterday and gave me crutches and is coming next week to do some exercises and leave me a written version to do myself. I used to be out in my car every day, now it's gathering dust outside the housè. The amount of meds intake now is 20 per day! The majority in The morning's, I'm on most which is 12 hourly morphine and liquid morphine as well. Neither really make much difference.. I was like you on Monday thinking I was never going to walk again.

I will follow the exercise plan and hope for the best.

Good job I stayed friends with my ex partner as he's done so much for me and my mum's sister who lives near has been very kind.

I shall keep plodding on,

Julie x

19581979 profile image
19581979 in reply to jules45

Hi Julie

I think with everything that you are going through you were brave to go abroad in the first place. Since my injury I haven't been abroad.

I think you are very brave dealing with what you are having to cope with. Give your two heroes a big hug, might need to do it carefully though.

If you can get some hydrotherapy it might be useful if someone can get you there. I wouldn't suggest any other kind though because I think you would need the warm water.

Take care and don't do what I did the first time I used crutches. I tripped myself up.

Gx

jules45 profile image
jules45 in reply to 19581979

Ha ha, I tripped up on crutches yesterday when physio was here. I had the right crutch too near my foot. There isn't any hydrotherapy around here unfortunately. I best not give the ex a big hug in case he gets the wrong idea so I bought him a Liverpool FC mug to say thank you. When I went to corfu in early September on my own I was healthy and happy and made a forever friend but tenerife with sister who is a diva was a nightmare.

Julie xxx

19581979 profile image
19581979

Sounds like the mug was better. I have a big cartoon tax mug for my tea at home. They look for the biggest mug at work for me. Get the idea I love my cup of tea absolutely.

I can easily understand about the crutches. I never realised metal had a wilful or won't depending on your point of view, until I tried crutches.

My husband would get too worried if I went abroad now. I'm not averse to picking up spiders, when abroad I have to be reminded to leave them alone. Can you imagine a 59 year old woman trying to catch a spider, that might be dangerous, wobbling as she tries to make her crutches behave? That's why he prefers me not to go abroad now. Even worse dealing with my food likes and dislikes. I enjoyed embarrassing our friend (his wife wasn't phased) asking for tomato sauce in a French restaurant and a cup of tea with my meal.

Gx

jules45 profile image
jules45 in reply to 19581979

Hi, yes the mug went down very well. Mind you he's been coming here on the bus most days while I've been home. I feel a bit guilty as I'm 47 and he's a fit 63 but he's on crutches after a broken hip and a dodgy replacement. Going abroad on crutches wouldn't be fun and I doubt after this episode my hepatologist will let me fly this next year. He was quite tentative about Corfu and tested my varicies with the camera and they were ok but i didnt tell him about tenerife. Im waiting to see him for a probable telling off about me going to tenerife.

I'm really badly fussy about food also, I don't eat meat and have to sniff my food first so at the moment I'm living on banana then porridge for tea or yogurt and a small sandwich for tea. I'm just not hungry and I'm trying to keep the salt down.

Your brave with spiders, I'm petrified of them and at moment not quick enough to kill them.

Well done to you asking for ketchup and cuppa xxx

Julie

19581979 profile image
19581979 in reply to jules45

You didn't have to match him with the crutches. If he does the buses with crutches I'm well impressed.

I'm not brave with spiders I was just an evil sister who, as I was seven years older than my kid sister, enjoyed hiding them in my hand and then showing her them. Trouble is, she was the one who joined the fencing club as a teenager at school and learnt how to use it. She also learnt how to do first aid as st John's ambulance as a volunteer. It meant she knew how to hit me and repair me if I tormented her. See how handy I was as a sister, encouraging self help skills.

Take care and best of luck with the specialist. Maybe if you admit you were fine on the first holiday and did a mercy mission on the second that went wrong he will forgive you?

Take care

Gx

jules45 profile image
jules45 in reply to 19581979

The spider tease would give me a cardiac! Someone did that to me with a huge dead one and I ran out of my office cleaning. Get annoyed with relying on others for jobs that I could àlways do easily myself.

I am sure my consultant will be understanding..

Hope you don't mind if i ask what you suffer with and do you still have crutches xxx,

Julie

19581979 profile image
19581979 in reply to jules45

Hi Julie

I have an incomplete spinal cord injury just above my liver. I had it 3 years ago but I'd had a compression there several years before that. I just hit it unlucky how it upgraded as a problem. If it had been a complete spinal cord injury it would have meant a guarantee that my body below the injury would be memories and I would never walk again. Internal working below the injury are also affected. An incomplete means that you still have some problems. Many still have virtually no difference than if they had a complete injury, a few have nearly a complete recovery. I'm lucky, I can go loo without a catheter. I can with laxatives just about control my bowels, many struggle with this. I can walk a few metres not many. In the house it varies on what I use to help me walk. The more tired I am the more problems with the messages getting round my body. At work and out and about I use a wheelchair, great for catching people's feet if they annoy me. Just joking on that or I'd be lethal.

I can still do something's myself but I need help with a lot of things. Needing help is a Bitch, but I remind myself of the people who had an injury higher up who now rely on a vent to breathe. My life could have been so much harder, I have no right to complain. I feel I need to do what I can, and despite what I lost, and I do miss that, I have to fight to stay positive otherwise I will have nothing.

Adapting isn't easy, I take a day at a time. My work (part-time) brings me into contact with people so much worse off than me. It makes me grateful for what I do have most of the time. My liver problems are an added bonus.

Gx

jules45 profile image
jules45

My gosh, you have been in the wars, I sound pretty healthy compare to you. I'm still wondering if I'm going to cope with crutches and walk normally again. Taking each day as it comes.

It's very embarrassing being showered by someone else but the ex has copped an eyeful these couple of weeks, but now he waits outside bathroom door in case I fall in shower. He's known me for 16 years so has sèen it all.

Waiting for appointment to see hepatologist to see what he makes of it all. I hope he doesn't go messing with my tablets as I've just got used to what the hospital put me on.

Same old day today, Sun is shining in Wales and my car in for a service. It was collected yesterday. I'll have to motivate myself to drive it and put my crutches on passenger seat.

Best wishes, Julie xxx

19581979 profile image
19581979 in reply to jules45

Hi Julie

The best part of my spinal cord injury was when everyone asked how I did it. I didn't tell them it was basically a compression that just went wrong. I told them when it happened. Most say infection, car accident, motorcycle, ladder,trampoline etc. I said filing. They asked what I meant and I said I was just putting some paperwork away and I didn't mean heavy boxes. That scared the nursing staff. But that is exactly when it went.

Over help getting washed can you get an assessment for some aids and adaptations through social services ot services. I don't have a lot of help only to access or exit my bathroom if I am feeling wobbly. I have a walk-in shower that is actually a wetroom, a shower chair and toilet frame. Using a long handled sponge it reaches most places I can do most bits myself. I have a searching stool in there so I can put my bath towel on and it helps me reach most of my body. Admittedly my lower legs and feet are air dried- not a good idea if you are a diabetic. I did this as I can't bear someone doing it for me. But I got help with some of the equipment.

Sunny in east Midlands today. I was at work and my two appointments cancelled. I took the time to catch up on getting rid of old paperwork I no longer need. In other words housework. How boring is that.

Take care and worse comes to worse you will learn to trip others up rather than yourself with the crutches if you are like me.

Gx

jules45 profile image
jules45 in reply to 19581979

Hi, braved going out in my car and my crutches. It's difficult carrying a handbag with them so I put my cross body handbag on, but in the shop was a nightmare. Was glad to get home. I have had an occupational therapy assessment. I'm getting a bath board and extra rail in shower. Turned down the toilet frame and wetroom as I find them cold and uninviting.

Car has to go back in the garage on Monday as they've had it since yesterday morning and have not touched it so i asked for it back for weekend.

How is your liver situation, mine is still quite poor considering

Regards, Julie xx

19581979 profile image
19581979 in reply to jules45

I have to be honest our bathroom is upstairs and I find it easier to sleep downstairs so I use the shower. I miss having a bath, but I'd need a bit of help with that. I tried a bath board and one of those electric bath seats. I didn't like not being fully in the bath. I was really lucky the wetroom had been built 25 years ago for our son and the downstairs bedroom 17 years ago for my husband's now deceased father. It meant I didn't have to go through a big assessment for them only for equipment. I wouldn't be without the toilet frame, it really helps when I'm tired. The equipment also helped with my pip assessment as that is a point based system.

Good luck with shopping with the crutches. I presume you put them in the trolley when you go round and lean on that? I have to be honest I would use the scooter our supermarket provides if I had to use my crutches round a shop, so I think you are really brave.

My liver is a bit of a mystery. I have a fatty liver, no arguments. The fibroscan gave readings indicating cirrhosis. 2 ultrasounds show a smooth but fatty liver. Bloods except for cholesterol coming back normal. Endoscopy normal. I think the spinal cord injury is helping to throw the readings. I don't know though as I struggled to find much research on this. This means I gotta work on trying to eat better and have no idea if my liver will function any better. It is functioning which is the main thing.

I do get tired easily and just had 2 long days at work so tomorrow morning will be a rest time for me.

Have a great weekend and have fun with the crutches. I'll be giving mine a trip to the bathroom soon.

Gx

jules45 profile image
jules45 in reply to 19581979

Hi, I agree about the assessments for a wet room and if you have savings you pay for it. I don't intend on using my crutches in Tesco as I am going to use their wheelchair as I haven't the strength to just use the trolley for holding me up.

I'm planning my first trip there on Monday.

I've just had a nap which happens regularly after a long day, trouble is I'm not tired at bedtime.

You seem like you have a lot going on physically but keep your chin up

Xxx

19581979 profile image
19581979 in reply to jules45

It's funny but until recently I hadn't realised how much I had adapted. I kept thinking about how I will still think about what I can't do. Speaking with you made me realise that a lot of the time I just get on with it now. So thank you for helping me to realise I have adapted quite well most of the time.

Gx

jules45 profile image
jules45 in reply to 19581979

Hi, I think you deserve a big pat on the back for the way you have just 'got on with it'. Wishing you all the love and luck in the world, best wishes, Julie xx

7265sunlower profile image
7265sunlower

Hiya julie sorry to hear your story hope you get better soon, your sister sounds like the one me mum had so selfish all for herself, she should have your feet on her body and see how she copes, well all I can say is stay strong and when your feeling up to it go on a little trip with someone who cares about you, all the best sunflower 🌻 xx

jules45 profile image
jules45 in reply to 7265sunlower

Thank you for your kind words. Have a best friend who lives in Edinburgh so I'd go away with her, but after all this I think my consultant may say no to flying next time.

On the mend slowly but surely and not speaking to mother nor sister. It has to be that way as what they did was unforgivable.

Best wishes, Julie xxx

7265sunlower profile image
7265sunlower

hiya jules45 its been a while since we last spoke ,i hope you managed to see your friend in Edinburgh and have a better holiday than you had before. your sister was very cruel to you an she should have taken better care of you an had more compasion and respect for you, hope she realises that now .take care jules45 xx

jules45 profile image
jules45 in reply to 7265sunlower

Hi, how are you, i was too ill to go to Scotland as I now have neuro problems with my ŕight hand and my blooď pressure very low. 65 over 53 today. Severed contact with sister and mother,. Did you get some snow, we did and had to dig càr out.Thanks for remèmbering me, love Julie xxx

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