Hi I wonder if anybody can give me some advice please.
My mother in law has been diagnosed with cirrhosis of the liver. She is an alcoholic however until this week would not admit it. She has spent a long time hiding her illness from the family but this week she was rushed into hospital and things have come to light.
Unfortunately the hospital are not very helpful and appear to be very discriminative due to her alcoholism. From what I have read I think she has decompensated cirrhosis.
Her symptoms are:
-Jaundice.
-Dangerously Low platelet count.
- Oedema - Severe swelling to the legs and feet.
-Cellulitis
-Fatigue
-Frequent nausea
-Spider naevi
-Loss of appetite
-Bruising
These are just the symptoms that we know of. She is still trying to act as if nothing is wrong and she is ok. She is even convinced she will be back at work next week even though she can hardly walk. Because of this its hard to work out if there are more symptoms that she is hiding.
What I need help with- My husband is going with her tomorrow to see the consultant. Id just like some advice as to what questions we should be asking. Also does anybody have any experience with caring for somebody in a similar situation? If so what was the outcome if you don’t mind me asking?
Thank you in advance for any help x
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mrsmcd09
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Firstly sorry you are in this situation, it must be so hard.
I can only reply as an alcoholic myself, not as a carer. What was she hospitalised for? Was it for the oedema? I was hospitalised with ascites ( swelling of the abdomen) and my cirrhosis was discovered then. I had always hidden my drinking too but I was so ill I finally admitted everything to the doctors and my family. It is a shame your MIL doesn't feel ready to do this but alcoholism still carries a lot of shame and we are great at lying and denying.
I had all the symptoms you describe plus ascites. My cirrhosis is decompensated.
Re questions to ask:
- what medication can MIL be given to help with her symptoms. Generally water tablets are prescribed. Will regular blood tests be needed.
- does she need to take prescribed vitamins? I am on thiamine and strong vitamin b.
- does she need to follow a certain diet? Most people with ALD/cirrhosis are put on a low salt/no added salt diet and obviously continuing to drink is complete no no so can she be referred for support or counselling?
. what other tests does she need? I am having a gastroscopy (camera down throat) soon to check for varices. These are a serious issue that need to be dealt with in most cases if found. Google has lots of links for more info.
That is about it for now. I have never asked for a prognosis. Some people have poor outcomes, some live for years with cirrhosis. I hope you MIL is able to face up to her diagnosis, she really needs to do that.
A bit of hope...I was really really ill earlier this year. My ascites had to be drained. I hadn't eaten properly in months so I was very thin but had a huge stomach. I lost over 1.5 stone after they drained the fluid off. I've been sober now for 4 months. I am on minimal medication. I eat the right things and I am slowly regaining weight. My jaundice has gone. I still think about a drink every single day but family and addiction service support means I haven't drank again yet so far.
Good luck.
I too am sorry to hear your account. What follows are a number of somewhat random thoughts:
your ma in law needs support in stopping or reducing her alcohol intake. While liver units are likely to be more sympathetic than A & E or whoever, long term options are closed down while a patient is still using alcohol. Entry to the liver transplant waiting list, for example, is not an option while someone is drinking and they do check blood for alcohol levels
cirrhosis is a chronic rather than acute condition and among its almost non-existent advantages, is that a patient in monitored by MRI and/or CT scan. In my case, I was diagnosed 4 years before a routine scan found a small tumour in my liver. Other than that, I was, at the time, dry (2 months) and otherwise well.
It is good that your husband is going with her to see the consultant, a) to help with questions and, perhaps more importantly, to remember the answers. The whole thing can be a little overwhelming. I am sure the consultant will be initiating more procedures some of which are trouble free, but others uncomfortable. There will also be recommendations about diet etc and if it is not offered, it would be good to ask for advice from a dietician.
Cirrhosis is not a good diagnosis and can lead to bad outcomes and related symptoms but there are some positive outcomes. I consider myself very fortunate that I was diagnosed when I was: it led to early diagnosis of my cancer, reinforced my change in lifestyle (I am now 2 1/2 years dry and fitter than I have been for a long time), put me on the liver transplant list. I am now 18 months post op and was fit enough to undergo a hip replacement operation.
Best of luck to your ma in law and the rest of you.
Sorry to hear your news. My brother was provisionally diagnosed with cirrhosis in June last year following going to the doctor with what he thought was anaemia and oedema on his legs. He completely stopped drinking immediately which, it turned out, was the wrong thing to do given the level of his illness.
He was admitted to hospital almost exactly a year ago with many of the same symptoms as your mother in law and huge ascites and varices on his abdomen. He had badly damaged his spleen ( we think in a fall) which was already enlarged and failing due to the cirrhosis and was struggling to breathe. I felt at first as you do about the hospital staff discriminating against him but whether it was me getting to know them better or them starting to get to know my brother better and realising he was serious about doing whatever he need to do in order to recover that changed and they were very supportive. The consultant was an absolute star.
Everyone's case is different and as the others above have said, many people come through this and, while their health remains impaired and they need regular care, live good lives. Sadly my lovely brother wasn't one of them and despite fighting hard and coming through at least 2 crises in hospital which should have killed him, he died in hospital at the beginning of October last year, never having been well enough to be discharged or have any sort of discussion about transplants or anything else.
The hospital will tell your mum in law and your husband in no uncertain terms that any alcohol at all now will amount to committing suicide and they might even put it that bluntly because the other thing you and I don't see when we go into ordinary hospitals dealing with alcoholic liver disease is the revolving door. The staff see the same people time after time, see them through a crisis, patch them up, put them in touch with advice and support services, knowing very well they will see a high proportion of those patients come back time after time and end up nursing them through their final illnesses. That's not a criticism of the people affected by this foul illness,which doesn't get anything like the attention and funding it needs, just a reflection of what I saw and heard during my brother's illness.
The hospital will be focussed on getting your mother in law stable and will put her in touch with alcohol advice services as and when they think she's stable enough to start planning for discharge. You might well find that even if she can't admit it to her son and you, she 's able to talk to a knowledgable, sympathetic stranger, which is what she'll get. I found the British Liver Trust's own telephone support service incredibly supportive and helpful in getting information for my brother and myself at a time when getting information from the hospital staff was impossible.
I don't know how old your mum in law is or whether she uses a computer at all but if she enjoys doing things on line can I suggest you point her to the online community I belong to called Soberistas? Its at soberistas.com and its a community started by and largely made up of middle aged women who have realised they have a problem with alcohol but didn't feel they needed/could cope with AA and wanted something different. Its open to anybody, its a charity with no subscription fee and no religious overtones. Its very positive and buzzy and actively promotes how positive life without alcohol is ( rather than seeing alcohol as something wonderful but which you have to give up to save your life). May be have a look yourself and see whether it might be something she would like?
Know as well that rates of alcoholic liver disease in women in their thirties, forties fifties and upwards is on the rise, we were all sold the you can have it all bit, including you can drink as much as the blokes and no-one can tell you otherwise. More and more of the people being treated for cirrhosis are women and quite a proportion of those are older women, in their fifties, sixties and seventies , which isnot the image most of us have when we think about cirrhosis. There's quite a lot of information about all this on this site, and you've probably already found it!)
At the end of the day, the decisions about alcohol are ones only your mother in law can make, just be prepared to support her as she adapts to being alcohol free and don't worry if she won't discuss it with you yet as long as there is someone she can talk to. Its often such a hurdle to admit you've got a problem to yourself and then, particularly as a woman I think, to admit it to your family - just be there for her and understand, as I'm sure you do, this is an illness, its not who she is, and with care, time and the right treatment she'll come through this and so will you and your husband.
Love and best wishes for your journey together. Bigsis xxx
Im are recovering alcoholic, I have cirrioris of the liver, but because I stopped drinking I'm sober 5 years, I'm living very well with only 30% functioning liver . I had so many problems, I went into an addiction unit for help and I now attend regular meetings of AA . To much medication isn't good for the liver , stay away from strong painkillers. She will probably need detoxed which should be supervised, it's tough but there r so many of us out there . There's only 1 thing she needs to make her sobriety the most important thing in her life, if she continues to drink her liver will continue to die and then unfortunately she will die, sounds tough, but it's the truth. From the bottom of my heart I wish u the best. If you ring Alcoholics Anonymous 2 people will come to her house and talk to her, just tell them your concerns , good luck
Hi my heart goes out to you, your husband and your mother in law because I was the primary carer for my husband and had a grandstand seat watching the awfulness of how decompensated liver failure affects the body. Unfortunately he wasn't one of the lucky ones - he did give up drinking completely but the body is so fragile and susceptible to infection when the liver isn't working properly his body eventually succumbed and he died in June this year. Like you I was quite offended by the way some (probably about 20%) of doctors spoke to him because he was an alcoholic. Unlike some of the other responders the hospital were absolutely useless on his first admission in October last year and either this site didn't exist or I didn't know about it because we spent the next 3 months (until his next hospital admission) googling and worrying and wondering how/if/should we go private.
These are the facts I wish someone had told me when he was first diagnosed:
1. You will not be considered for a liver transplant unless you have given up alcohol for a minimum of 6 months and can convince the doctors that you will not go back to it. The wait can be longer although the more ill you are the higher you get up the list. You have to stay healthy enough to get there of course.
2. A symptom of the problem is tiredness and lethargy, so you really do have to bully the sufferer into taking the problem seriously.
3. You must eat properly or you will die; low or no salt, little and often portions, demand to see the hospital dietician.
4. Do not sit around; a symptom of the problem is poor circulation - in my husbands case this led to chronic piles which literally made him howl in agony. I really hope that doesn't happen to your mother in law and I believe the only answer is gentle exercise but ask the doctors.
5. A symptom of the problem is insomnia - in my husbands case practically day/night reversal and you really shouldn't take any sleeping tablets because the liver processes all the drugs we take so you are giving the liver more work to do. This can be very difficult to cope with in a normal working household and takes a lot of patience to cope with, it also isolates the sufferer and makes them even more lonely. It was only 4 months in to the rollercoaster of problems related to the liver disease that I found out this was why my husband wasn't sleeping properly.
6. I'm sorry if this last one frightens you or your MIL - but I wish someone had looked my husband in the eyes when he first started the symptoms - and emphasised that if he didn't stop drinking it is a really really horrible way to die, you waste away, you age prematurely; towards the end he used to cry when he looked at himself naked.
Its a really tough road and I wish you and your MIL all the luck in the world and get as many other members of the family to help you because you will need all the help you can get.
I totally agree with carrer2709
And I went through all those experiences , and add anger to my list as I was horrible to the people around me but very nice to everyone else!!
I was extremely lucky to get a transplant and I wish you and yours well
Hi, I am so sorry for your predicament, perhaps telling you about my experience with liver transplantation will provide you with some valuable information. I am an alcoholic although I have not taken alcohol for over 4 years. It was a long haul before l obtained a position on the transplant list (months of random blood tests mainly to prove I had abstained from alcohol). When I achieved this I had an 18 month wait before I was given a new liver. This period is uncertain because of various factors, blood type for instance, and the availability of a replacement liver. I finally had a transplant last christmas eve and, although difficult, I am well on the way to a full recovery. I hope this message is of help and will give you some comfort for the future
This is heartbreaking and I have personally been through a similar situation with family in denial and also I have worked directly in treatment watching those suffering. However, with the right help the progression can stop and there can be healing. I know it may sound like a long shot, but the family can use tools like professional interventionists who work with the family to make a plan to help the loved one and also the family's behaviors. Treatment programs are excellent once the person goes into the program because they will be able to focus entirely on themselves and start to heal their brain and body. Here is some information for those people who want more info:
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