Care for Dad

Hi everyone

I need to give you some background first which is difficult to summarize but here goes... My dad is 76 and had bowel cancer 4 years ago which he sailed through, tumour removed, excellent NHS care, no problem.

At the beginning of this year he started to feel unusually tired. He went on holiday in July feeling under the weather but enjoyed himself. He had attended a check up at the hospital and was told he had gallstones.

By August the pain in his abdomen is getting worse. Following another routine check up in September he was admitted to hospital for 2 days for further tests. They tell him to change his diet as all scans are 'foggy' due to too much gas in his stomach. By October he is loosing weight, spending more and more time in bed and finding it hard to eat and drink. This eventually leads to an emergency admission to hospital in late October. He has a urine infection and is treated with antibiotics. There is a change of consultant and after more tests they decide its liver cirrhosis. He has ascites and is treated for this.

Since then he has been at home in bed. He had one further admission to hospital with another urine infection. (November) Dad spends most of the time in bed as it is more comfortable. He lies there all day with no radio, TV or reading material. What does he think about?

He has had various GP appointments where they test his urine and take blood. He looks like a victim of famine and his muscles have wasted. He cannot breath and the slightest activity leaves him breathless.

He is allegedly under a consultant at the hospital who my mum has never met. I think dad met him twice on one of his visits to hospital. He finally has a consultation with this doctor this Friday 18th.

I visited mum and dad at the weekend and dad has the 'look of death'. I cannot describe it any other way.

Mum phoned for a doctor to visit this morning as we think the ascites is back and dad has yet another urine infection.

At no point have mum and dad received any advise about this disease or how to live with it. The appointment on Friday with the consultant will be the first opportunity to talk to anyone. It feels like the NHS have deserted us. Dad is also very depressed and the GP ignores mum when she tries to tell him this.

By the way, dad isn't a drinker. His brother died of liver cancer and was completely tee total although his diet wasn't good and he did smoke.

My mum and I don't know what to do for dad or how to help him. It looks like it all rests on this appointment on Friday. Does anyone have any advice please? Its all happened so fast, what do you think the prospects are? I need to be prepared.

Any help anyone can give us would be fabulous. Thank you

12 Replies

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  • The liver cirrhosis is not a 'disease' as such but is as a result of something attacking his liver over a long period. As you can rule out alcohol then it must be something else. All sorts of things can inflame the liver and to find the cause the doctors should undertake various tests: blood tests can check for viral hepatitis and for various different autoimmune conditions, taking a medical history can find out if the patient has been on long term medication that might have damaged the liver, or has something like diabetes or insulin resistance or high cholesterol or is overweight etc etc. If you follow this link to the British Liver Trust website you will see a list of liver diseases, most of which will result in cirrhosis if not cured or controlled. britishlivertrust.org.uk/li...

    There is also a link here to a specific page on cirrhosis which might help britishlivertrust.org.uk/li...

    if you scroll down to the bottom there is a list of side effects to look out for and ways the doctors should be monitoring your dad and treating the side effects.

  • Many people come on this forum asking about prospects. The problem is that liver disease in itself is a complicated one that Dr's are unable to give accurate time scales with regards to progression. It also sounds like you Dad has other factors which could influence his long term prospects. For some people they can recover and regain a reasonable standard of life for many years, others may need transplant in the long run and for others that is not an option due to complications.

    I suggest that on Friday you find out what his prospects are by asking how they intend to treat your Dad. Is a transplant possible or even necessary?

    Ask for an honest opinion if that's what you want. Be prepared for the worst and make sure the consultant understands you want a direct answer. I've found some consultants do find it hard to give bad news and that's when you walk away unclear.

  • Can I just chime in with my 'get a hep C test' from doc? When I ran a support group there was an 84 year old woman whose cirrhosis had been seen when she was having her spleen removed. She was told to stop drinking to which she replied 'what my glass of sherry at Christmas?"

    She tested positive for hep C and had no idea where she had got it. It is not just a drug addicts' disease and half the people in our group did not know how they got it.

    Just a thought - to remove the possibility if nothing else. They don't like giving tests but the gov has just released a report saying more people should be as thousands are walking around without knowing they have it.

  • Thank you for your replies. It's a shame that liver cirrhosis is perceived as always being linked to heavy drinking. In dad's case and most on here it is not. I think that is why it is so shocking that we find ourselves in this situation. I am very like my dad's side of the family. My GP did a blood test a week ago to test my liver function and Ive heard nothing. I'm 48, so I guess no news is good news. As for poor old dad, I expect/hope we will find out more tomorrow at his consultants appointment.

    Just a thought....Does anyone know how soon a dis-functioning liver can b deteted by a blood test? Is it always at the last minute when it's got in a really bad state or can you find out early enough to do something about it? I'm surprised that this wasn't picked up 4 years ago when dad had bowel cancer. He was tested a lot for all sorts, blood tests I mean.

    Thanks

  • There is a simple test the docs run called a 'Liver Function Test'. britishlivertrust.org.uk/li...

    As you can see it measures a number of different liver functions. The more 'out of range' they are the worse the liver is performing its functions. It usually takes an imaging scan or a Fibroscan or a biospy to diagnose cirrhosis. After that its adding in symptoms such as fluid in the abdomen (ascites), fluid in the legs (oedema), HE (confustion) etc that suggest the cirrhosis has got to the 'decompensated' stage which i guess is where you dad is at.

    I dont know what the pre-op tests for a bowel cancer operation would be. I would guess they would test his Full Blood count and check his heart and lungs and kidney function and things like blood pressure, but not sure how important liver function is to bowel surgery. It may be that they did test his liver function and it may be the results came back slightly abnormal, but then for someone with active cancer they might have assumed any liver inflammation was conncected to the cancer, i dont know I'm just guessing wildly here.

    I know its difficult but looking back and wondering how things happened or how things got missed is not helpful, it just makes you feel negative about the past. (Unless of course you plan to sue his doctors for negligence but i guess you would need all his medical records for that). What matters for your Dad now is that his symptoms are addressed properly and treatment in the here and now is appropriate.

  • i have cirrohsis of the liver and developed bowel cancer all within the same year 2013. my consultant was aware of this so my treatment doseage amount was carefully monitered. maybe because your dads liver problem was un detected at the time of his cancer the doseage could have been too high. unfortunately it may not have been found in the daily blood tests at the time

  • PS does your Dad have a long history of urine infections? I ask this as it is now understood that Nitrofurantoin, an antibiotic typically give to clear UTI's can, when taken for many years, damage the liver.

  • Hi Bolly

    Thanks for your reply. Dad has only had infections this year and will be directly linked to his liver problems, so no that won't apply. Hopefully I can be more positive after dad's appointment tomorrow. My mum and I do, however, so far, feel very let down by the NHS. Let's see.

    Best wishes

    Jo

  • Hi, I had bowel cancer in 2003. The chemo drugs damaged my liver giving me nodular regenerative hyperplasia. I've had various complications. Not as much is known about NRH as cirrhosis; your Dad would need to see a hepatologist. Just something to consider.

  • Hi everyone

    Dad saw the consultant yesterday and was subsequently admitted to hospital to have fluid drained off. He had six large bags removed overnight and has been given vitamin drips in between.

    It seems to me that controlling ascites is key to living with cirrhosis. I would really like to hear about how other people have coped with this? A low salt diet and regular drains? or can it be controlled by diet and water pills? Does it ever go away so that you can live a relatively normal life?

    I am really surprised how many people suffer with cirrhosis and some of the posts on this site make me feel so sorry that there is so much suffering. The British Liver trust website is really informative and a godsend, but hearing how other people cope, I find more useful.

    Thank you

  • Glad to hear they have admitted Dad to hospital and are treating his ascites, hopefully whilst he's in they will also do a good work up as to his overall health and you can get more information.

    You're right in your assessment that managing his ascites will be an ongoing aspect to maintaining some sort of quality of life because it is highly likely to recur.

    A low salt diet will definitely be necessary, Doctors might suggest also impose a fluid intake limit and also perhaps prescribe water tablets.

    Some people have to go and have regular drains since the build up of fluid can restrict breathing and the functioning of other internal organs,. The fluid can become infected leading to all sorts of other issues.

    Some people have a permanent 'tap' fitted so that they can just drain from that every so often whilst there are also developments in some sort of pump for ascites (don't know much about it).

    There is also a procedure called a TIPS Transjugular intrahepatic portosystemic shunts which inserts a sort of canal through the liver thereby reducing portal hypertension which is the cause of ascites but since this is a surgical procedure doctors might not suggest that for someone of your dad's age. TIPS has its own drawbacks in that blood is 'rushed' through the liver and therefore isn't detoxed and therefore it can sometimes result in a worsening of Hepatic Encephalopathy symptoms since there are increased toxins in the blood stream.

    Before your Dad is discharged from hospital make sure you get answers to all your queries regarding this and ensure you have a means of getting dad readmitted to hospital if his ascites returns (which sadly is highly likely).

    Wishing you all the best.

    Katie xx

  • Thank you Katie for your helpful reply. Christmas won't be the same this year but as a family we feel we want to find out as much as we can so that we can support dad.

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