I lost my husband to liver disease on ... - British Liver Trust

British Liver Trust

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I lost my husband to liver disease on New Years Morning

megan1 profile image

He was first told he had liver problems after a blood test about 8 years ago. He was being treated for hypertension by our GP from 1996. He was never referred to see to see a Consultant in hospital or given any treatment. He suffered depression last year and retired from work. in May he had an itch and the G:P did it must have been a change in washing powder. Now after researching this disease I see all the signs of cirrhosis were there. About 8 week ago he had a gross swelling in his scrotum and odema in is legs and Gp sent him to hospital where he was given fabulous care bay a GI consultant but it was too late. Should my G:P have done more a lot sooner. I am so angry.

23 Replies
Hidden profile image

Firstly sympathies for sad your loss.

I don't think any of us can comment as to whether your GP did enough because none of us on here know the facts of the case.

But if you are troubled make an appointment to see the GP concerned, and explain to him your worries.

get him to explain your husbands case.

Megan - I am so sorry to hear about your sad loss. It is not posible to say what might have happened if things had been different. I would make two appointments for yourself to discuss what happened - one with the GP and one (if possible) with the hospital consultant. You need to know the answers to a lot of questions. Before you go to these appointments, make a written list of what queries you have and what you want answering. Take a close friend with you as 'two pairs of ears are better than one'. I know nothing will bring your husband back but you need to know what happened. Thinking of you.

judyt profile image
judyt in reply to gamesmaker

What a sad story. Just the sort of thing we can all relate to and feel fearful of. It is so important these days to be your own advocate, and not try to be brave when things are going wrong. Nothing will bring him back to you as we all know, but if you feel it would help to talk it out with the Doctor concerned, do that but don't let your anger consume you.

Perhaps, when you have all the facts together, it would be a good idea to get some grief counselling to help you accept what has happened.

You will learn that anger is part of the grief process, and I truly hope you will be able to work your way through it.

Sending loving thoughts your way.

Dear Megan

I am so sorry to read about your husband.

I can't add anything useful to the replies you have already received. Please do what you need to and take care of yourself as well.

Thinking of you.

JoJo x

So sad to hear but yes I think you have a right to know a lot more about what happened and why he wasn't under a specialist for the liver damage. I hope you find some answers at least to help you understand exactly what was going on. Get some talking therapy for how you are feeling - talking to someone neutral can really help as well as your friends and family if they are supportive.

Hidden profile image

So sorry to hear this Megan xxxxxx did your husband have any blood tests in the past few years ????? My husband developed cirrhosis and we successfully claimed against our GP !!!! It may be worth you asking the GP surgery for a copy of his medical notes xxxxx Grief is a process and sometimes it is easier to deal with if 'someone' were to blame - I often find it unbelievable that GPs are unable to spot this disease - as it happens so often they should be clued up in signs and symptoms - often just the liver function blood test can give an idea of how well the liver is !!!!! Although it would be very difficult to send everybody that had an abnormal blood test to a gastroenterologist for further investigations - I think something should be done to make diagnosis easier - it is not just a Drinkers disease - my husband doesn't drink at all xxxxxxxxxxxx

megan1 profile image
megan1 in reply to Hidden

Yes he had blood tests as he was being treated for hypertension. His LFTs were greatly improved and not that high. He was only on 2 blood pressure tablets. He had depression and bad sleeping on reflection this was probably the start of the cirhossis. The itch started in April and it was suggested that I had changed the washing powder or he had picked up aninfection from cutting the hedges around the house.

Hidden profile image
Hidden in reply to megan1

It must be very difficult to come to terms with :( xxxxx I am a RN and looking back at my husbands symptoms they were all there but I didn't notice any - I remember buying E45 several years ago as Rob was itching so bad but it went so I didn't think nothing more of it - when he was so tired and falling asleep all the time - I just thought he was 'lazy' ;) xxx I agree with other suggestions that you go an speak with your GP and see what he has to say - I think that this may give you the answers that you need xxxx It is very difficult to prove that someone has been negligent - we were only successful because our GP had written in Robs notes '? Hep C serology' in June 2008 - but never carried out the test and all of Robs LFTs back to 2004 were abnormal - yet nothing was done until 2011 when he saw a different Dr at the same practice !!!!!! It is very hard to come to terms with as we feel cheated - I think it is easier for me to blame the GP as it gives us a good reason for why Rob is ill - so I can appreciate what you are thinking. I hope that you can find the answers you are looking for xxxx big hugs xxxxxx

megan1 profile image
megan1 in reply to Hidden

Many thanks for your support. I have made an appointment with GP. I am not hopeful of his giving me any answers. I just feel so cheated

Hidden profile image
Hidden in reply to megan1

You will do xxxx and that is totally understandable - GPs are not easily able to 'change' records as often believed as they are mostly computerised records - give him a chance and perhaps before you go make a list of questions - as when you are there you will probably forget them xxx I would also say to book a double appt or make it clear it is an appointment to discuss your husband as you don't want to have a '5 mins' slot and be ushered out for the next patient xxxxxxxxxxxxxxxx you can message me any time if you want to discuss anything - if I can be if any help and I have good ears too ;) ;) xxxxxxxxxxx

megan1 profile image
megan1 in reply to Hidden

thank you - you are an angel

nannyduck profile image
nannyduck in reply to Hidden

hi just read about the blood tests my mum was having regular blood tests for a few years before she was diagnosed with liver problems because of the medication she was taking for arthritis every time her bloods came back showing whatever it is they look for to say it was affecting her liver they would take her off the meds for a while then when the bloods looked better they put her back on the meds when they eventually decided she needed further checks on her liver they did an ultrasound and said it wasn't worth doing a biopsy because her liver had got to bad and treatment wouldn't make any difference we were fuming they said there are like two lines if the bloods came back out of the lines they check further I said to them then they needed to change where the lines were because its no good to anyone leaving it to late we put our trust in these doctors to take care of us but sometimes it seems they don't my mum wasn't a drinker either and we didn't even consider she could have sclerosis because we wrongly assumed as many do that its a drinkers desease having said that regaurdless of how a person gets it its an awful thing and nobody deserves to suffer with it so I completely agree with you they really should do something to make early diagnosis possible x

Dear Megan,

I am so sorry for your loss, truly. :(

But I have to say that in my opinion, your GP *should* have done a lot sooner. The comment about him itching because of a change in washing powder after *knowing* that he had liver problems? I cannot understand that! Itching is one of the most obvious signs, and I have no idea—none—why he wasn't sent to a consultant. I think that you should get hold of his medical notes and see what was going on. I know it is painful, but that GP might make the same mistake with someone else too. At the very least, the notes. I wouldn't want to talk to the GP if I was in your position. I would get the notes, research and then complain to the Medical Council (if there are grounds). This is life and death, and I am so sorry. I had poor treatment from a GP who said my jaundice meant nothing. My husband made an appointment for me with my consultant, who listed me for transplant that week. We complained to the medical council, because if my husband hadn't booked me in, I would still be sitting around jaundiced or worse by now.

I hope that you find peace and understanding, Megan.

Sending you love and hugs from here.


Dear Megan 1

So very sorry for your sad loss, you have had some very good advice from people who understand here, yes do go to gp and ask every question you need answered, my gp left me for 3 years with high liver function before I was sent to gasrtoenterologist, I do have cirroshiss so I could have had treatment a long time ago, but am getting g it now, so you see GPS do make mistakes as we all know, they don't seem to know a lot about liver disorders, so you get what you need and deserve and that is answers, I sincerely hope you get your answers and be comforted by the knowledge that your husband had a caring person by his side, all the best. Angse

I am so sorry to hear of your loss. I do know they tend to focus on the blood tests, if these were later showing ok maybe thats why it wasn't picked up. I have had a transplant and even when feeling awful get told your bloods are ok and thats by the consultants. Again so sorry for your loss.

Thats a horrendous story, hope things turn around for you.

Hi Megan

So sorry to hear this.

I am not a bit surprised. Mike ( my husband) was diagnosed with Cirrhosis in 2006. When we insisted he didn't drink they tested him further and he was found to Alpha 1 Antitrypsin Deficiency. We attended clinic for 4 and half years. Nothing other than bloods was ever done. I then forced a second opinion and he was found to have, HE, a portosystemic shunt

and was treated 6 times for varices. Eventually he had a transplant.

You definitely need to get some answers.

Some body should be answering for this.. You can make a complaint to Nation Health England who will point you in the right direction.

Good Luck

Hidden profile image

I also lost my husband in October from the same thing. He was diagnosed with cirrhosis in October 2012 after the same sort of swelling in his scrotum and luckily the doctor in the local walk in surgery sent him straight to the hospital where he was diagnosed. After doing really well, and doing everything he was told (I assume), he went into hospital at the beginning of August. He had a cough which he had had antibiotics for, but it didn't go. He had an x-ray and they told him he had fluid on his lungs and that he should have a chest drain. He went to the other hospital in our area for a chest drain and one was never performed, they just gave him more water tablets and said it was to do with the fluid which collects in the abdomen. We then went on holiday to Majorca. The fluid was obviously building up all that time, which I have now found out is a symptom of heart disease. He got an infection in the fluid, ended up in hospital having a chest drain. The infection shut down his partially working liver and shut down his kidneys. These never recovered and his body slowly shut down. He apparently died from ischaemic and hypertensive heart disease, but was not receiving any treatment for this! It is so frustrating. I know exactly how you are feeling and you wouldn't wish it on your worst enemy. My husband was 41. This was not in my life plan and I'm sure was not in yours either.

Thinking of you at this awful time

megan1 profile image
megan1 in reply to Hidden

Than you for your support. Your husband's symptoms are just the same as my husbands. Forty-one was a very young man I am sure you and your family are still in grief. I don't think I will ever recover from this we met when I was 17 and he was 18 we married when I was 19 and he was 20 in 1977 I miss him so much. Cirrhosis is an awful disease to us it was the silent killer. Spoke to my GP today he to was shocked at just how aggressive the disease was between diagnosis and death. More needs to be done to make people more aware of this horrible disease. Praying for you

Hidden profile image
Hidden in reply to megan1

Hi Megan. Yes the grief is very real and ongoing - you just need to work through it which is tough. No-one knows what it is like until they've been in this situation. I think a routine test for liver problems would be a good idea because like you say it is a silent killer, you don't realise there is a problem until it is too late. Take care and sending prayers to you and your family also xx

Sorry about your loss, I would want answers from your GP and hospital. I am sure more could and should have been done...

I'm so sorry, Megan. What an awful way to lose him. I'm very disappointed in our medical community. A 15 minute appointment and you learn next to nothing. Seems he could have been helped. Keep in mind I'm in the US. Our healthcare is struggling and losing. Tell me more about yours. You had no idea he had cirrhosis?

Thinking about you today.xxx

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