I have been diagnosed with cirrhosis of the liver, spending a lot of time in hospital and Put under assessment for a transplant. although I have been abstinent and taking medication it’s very touch and go my symptoms fluctuate but I remain positive. I do look better Than before diagnosis and I am a tough cookie , however I still get extremely tired, problems with sleeping , itching etc. I was upset to over hear my family discussing me and saying I was exaggerating my symptoms as I look better, and yes some days are better than others. Apparently I’m lazy and should be doing more, and using this an excuse not to work. I have always had full on highly demanding jobs, so I am not work shy. I now don’t know how to approach things with them
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Jjp80
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My thoughts are with you. I completely understand, and no your not exaggerating at all. It sounds like your family may need more knowledge of your disease. It effects everyone so differently. I would recommend talking to your doctor about the itching from the research I have done for my ex there is a treatment available. Try not to get depressed, everyday is a gift. I encourage you to try and be active as much as possible and maybe check your diet anything to boost your energy levels.
Hi,
Would it help to get your relatives to look at our website and maybe educate themselves about cirrhosis? It is such a complex diagnosis and symptoms can flutuate.
Here is the link to our website page and downloadable publication;
Here's the thing...they don't know what they're talking about! One day they will be the one that gets sick and when they do they won't like it. They don't know as much as they think they do. Try to forgive them.
Pam
It's sad when this happens. You'd think families would be more supportive and understanding. I had my transplant just over a year ago (Last October), and every Christmas my wife's sister comes over from Italy to stay with us. They expected me to go out every day visiting, shopping and doing all sorts. I was accused of being a stuck-in-the mud, and boring. They just couldn't understand that I was still recovering after the opp as it was only 10-weeks after my transplant. Not only was I still sore, I was also putting myself at risk of infection from colds and flu and other infections from others.
This year there coming back over, and sadly one of the conditions I now have is terrible diarrhoea two hours after taking my med's each morning. This is one of the side effects of the medication I'm on and there's nothing I can do about it. (hope I'm not putting you all of your tea... sorry) The up shot of this is that I daren't leave the house until I've been, as you just don't know if there will be a toilet available when you need one. There not going to like this as they like to leave early each the morning. I just know I'm going to be blamed for messing up their holiday.
Having to live like this isn't always very nice, but being alive is. And if others don't like it, then they know what they can do.
oh richard... im 5.5 months post txp.... im sure before the op several of my extended family thought I was just exaggerating... and although my husband was understanding he would suggest stuff i just dreaded doing....
now after txp nearly everyone thinks i should be cured!!!! but i have an autoimmune disease which still gives me fatigue.... aches and pains etc. also like you the diarrhoea problems... they think from mycophenalate.. they have reduced it by 1 tablet which has helped a little.... but your post sounded just like me.
i felt better in the first 3 months but then I felt a decline.... I think probably the steroids... but very frustrating.
i am grateful to be alive but... not sure how to cope with the limbo i feel in.... i was so positive to start with... but feel the fatigue etc has returned.
not sure the answer for hol problem... think you should tackle it before the week.... explain clearly the issue and say you won't be able to go out until x time..... they can always go on their own can't they??
i end up saying i will go then wishing i hadn't and toilet hopping!!!
do you feel a bit dizzy as well?? i feel quite yuk after walking around for a little bit.... do you???
thanks for your post made me feel i have someone in the same boat. good luck cazer
I have bouts of fatigue. But I put this down to the medication. I am now 13-months post opp and the first three months I think were the worst, but people just don't realise that you've just had major surgery and your body takes time to repair and recover.
I remember when I was in the QE after my opp, The surgeons used to always ask, "have you opened your bowls yet? I asked as to why this is so important. I was told that during the eight hour procedure, the bowl has to be held out of the way, so the surgeons can work on the liver. because of this, the bowl can go into shock and go to sleep. After the third day my bowls opened. It felt such a major achievement I wanted to share it with the world, "Oi, you lot, I've just.... Oh sorry I see your eating... never mind".
After a transplant, the bodies immune system had to be turned right down to prevent rejection, and then the blood is thinned to prevent clotting. These conditions alone will cause a person to be fatigued and feeling breathless and tired for a few months. I like so many other people got in to the habit of having a nap in the afternoon. While this did help a lot, my body clock got used to this, so even now my body thinks that at around 2:30pm it's time for a kip. The medication I'm still on cause fatigue, anti-depressants to slow you down, and others.
People have to realise that this is the person you've now become and with liver-related issues, either before and after a transplant comes life style changes, and that's all there is to it. These changes are a small price to pay for an extended life, and you won't hear any transplantee's complaining too much as the gift of life is such a precious little thing.
i was ill for 19years before transplant so was used to it.... but was better after a few weeks after transplant than I am now.. energy has lowered again.. feeling cold hair loss low temperatures and low end thyroid.
i wonder if it is my thyroid that is adding to problems?? but if I broach that with docs I'm sure they will think im being paranoid..
wonder if anyone else has felt worse not better??
sorry getting side tracked.good luck with your problem.
I'm 10 months post transplant and felt the same. Great for the first couple of months, even though achy from the surgery, then not so great after. Think I've stabilised now that I'm down to 2 daily medications though.
Still get the odd day when I don't feel amazing but generally I've been fine.
I'm not at the transplant stage yet but was diagnosed with underactive thyroid in January, they haven't sorted my meds out properly yet!! I've gone from Nash to fatty liver with some fibrosis. They now also think I've got lesions or sphincter of Oddi from when I had my gall bladder out 32 years ago or from an op I had nearly 4 years ago!! I mentioned this to them over 2 years ago but they just fobbed me off!! I'm in so much pain I don't know what to do, got fibromyalgia too. Please take care. Lots if love Lynne.
PS I've been very lucky with support from family, friends, work and if course all of you on here. You are all fantastic xxxx
That's so sad. I look perfectly healthy but have liver disease and get exhausted some days and family think I'm lazy. Just explain how ill you are and that you need support not negative comments. Stay strong and focus on your health.
You have my complete sympathy. How we look can bear no resemblance to how we actually feel. Unfortunately we also cannot control anybody's ignorance and total misunderstanding around liver disease. The itching is a symptom of advanced liver disease and would warrant further investigation. The beauty of this forum is you can get support from people who are going through a similar situation to yourself, pretty much like a nationwide group therapy session. I am extremely fortunate that my whole family are there to support me, and have gone from working 6 days a week to just over half a day a week following an aborted liver transplant. I wrote a blog about my experiences 1liver1life.wordpress.com which outlines everything from diagnosis to the aborted transplant , with the next section to be written on the anniversary of the transplant attempt and my battle to make it this far (battle is probably overplaying it). I refused to feel sorry for myself even when given a prognosis of 1-2 years and year 1 is nearly over. The itchiness, the tiredness, the constant visits to the hospital all take their toll, but only you can share that journey "warts and all" with the members of your family. And please remember that they will be scared as well. I hope everything works out for you and maybe you could encourage them to read my blog about living with and coping with a diseased liver.
To be honest, before my husband was diagnosed with cirrhosis, I thought he was just being lazy as he was always tired and never helped with housework, but when we found out it put things into perspective.
Would a member of your family go to the cirrhosis clinic with you, even if they didn’t ask the Drs questions you could “why am I .....” and they could listen to the answers. It’s a horrible illness and you need support, as much as you can get. If you’ve given up drinking, well done.
My husband was itching all the time and on his first transplant assessment the doctor prescribed Refaxin, which really helped, but doesn’t work for everyone.
Do you suffer from encephalopathy? If your family saw you have an episode they would be frightened. I know I was every time my husband had it.
I hope your family realise soon just how poorly you are. Unfortunately cirrhosis doesn’t get better and they need to help you. My heart goes out to you.
I had exactly the same problems once my cirrhosis changed to decompensated until the transplant. I'm lucky to have an amazing wife who has been my rock for the past 2 years. In the 4 months leading up to the transplant and the 2 after, she was doing everything, looking after our daughter and I, cooking, cleaning, working and not once did she moan about it.
It's a shame your family don't seem to understand how poorly you really feel. Try to get them to have a chat with someone from the transplant team so they can get a better idea of the disease.
There really should be a TV program to raise awareness to others, exactly what's involved with these medical conditions, and what life style changes need to be made.
I understand that when George Best had his liver transplant he went a whole year without alcohol and friends and relatives held a party to celibate. His then so-called friends were saying things like, "Go on have a drink George, you've got a new liver now, you'll be OK". The rest is history.
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Hi
I wonder if any of you have heard of fexofenadine for the itching, it has worked wonders for me. Xxxx
I feel for you as I have cirrhosis of the liver to i have days when I feel amazing and energetic but some days it's like my head wants to move but my body won't let me because I feel exhausted even if I've had a good night's sleep in suggest you see your doctor and ask for some vitamins as your liver dosent absorb the nutrients it needs because of the damage done to it and next time you go to see your liver specialist take your family with you and ask him to explain what the effects of having cirrhosis and the symptoms that come with it .I hope this helps a little best wishes x
I myself have cirrhosis caused by hepatitis c & cancer as a result of both & am on the transplant list & have been for past 10 months.
The fatigue that hits is very hard to explain & even harder to make others understand,I myself work doing a fairly manual job & also believe it or not go to the gym to keep as active as possible I look well & have a steady good weight but there are days when for no apparent reason that I can hardly get out of bed & when I do my whole body aches/throbs like I’ve got proper man flu coming in & this can last from one day to a whole week & then go as strangely as I came.am told by my consultants that this is perfectly normal in someone with cirrhosis and to rest up when it happens.
As for family members believing you exaggerate your symptoms well let them read the forum or take them to one of your many appts then maybe they will understand better just what your going through.
Hi, I suggest you share some of the comments here. Prior to diagnosis I used to work 12 to 14 hour days, climb, mountain bike, walk, kayak etc. 12 weeks ago I was diagnosed with liver damage, obviously now teetotal and off pain killers I have dodged a bullet but the enduring effect on me is tiredness. I feel like a hibernating bear 3/4 of the time. it is getting better as liver function improves and transfusion wears off, but for me like you tiredness is real. I now carry a can of full sugar coke and jelly babies in case of low energy moments!
Hi, I’m no expert... & I haven’t been officially diagnosed with anything other than thallesaemia minor & a vitamin d deficiency... I had a liver malfunction 3 years back for an unknown reason & I was lucky to have bounced back from it... However, I know how exhaustion can just take over your life & how no one in the family understands it... Be it your spouse, kids or even your own parents... Everybody just keeps advising you on how you could do something with your life... I was very fortunate to have come across an article called the spoon theory... That was one thing that helped me explain my tiredness to my family... Hope the link helps your family understand you better...
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