Liver cirrhosis but could be another problem?

[joredd]

Dad, who is 76, was diagnosed with liver cirrhosis in October 2015. He has not been eating enough for months and his weight has fallen to 63 kilos. He has been in hospital 5 times since last September. Just before Christmas he had 12 litres of fluid removed from his abdomen (ascites). I have complained to the local hospital as dad was not getting the care he deserved and basically they have bucked up and are paying attention now, thankfully. He is also very breathless but his blood oxygen is normal. He had a gastroscopy today and they didnt find anything. He has had a colonoscopy and again nothing found. He had an xray of his lungs a couple of days ago, again nothing to report. The consultant said today that his liver is not any worse than it was in October last year and the damage does not warrant this breathlessness and massive weight loss. He is going to investigate further as he thinks something else is going on? He is to have a CT scan on Monday (He has had 2 or 3 of these since October). I now understand that thisevening a doctor came round to his bed and he is being fed by tube via the nose. Dad says he has to have it all night.

Poor dad, a gastroscopy thismorning and a feeding tube tonight and he is soooo weak. Apparently the ascites is back but not to any previous extent and not enough for a drain.

Has anyone got any ideas what else could be going on please? I have been looking at problems with bile duct. Dad was diagnosed with gall stones late last summer. I wondered if anyone else here has had any of these symptoms?

Thank you in advance to anyone who can help & happy new year to all

[joredd]

Whoops I meant that dad weighs 53 kilos (8.5 stones) he is 5 ft 10

[dckimberly]

Hi there! First, I. So sorry about your dad.

Next, the same thing happened to me. I had no appetite whatsoever last year, and lost a lot of weight. I also had/have massive ascites. Personally, I was getting drained every 3 weeks, then 2 then every ten days. They would take up to 21 liters, except near the end, when they would take 12 or 14. They couldent take any more because of my blood tests, but every 10 days helped a lot. I was terribly thin underneath..I could only stomach soups..I finally found a supplement drink I liked.,that helped a lot with calories and vitamins, etc.

I was often breathless due to the fluid..if it gets near your heart or lungs it can do that.

Does your dad need another drain? His weight does seem very low..but many of us lose a lot of weight being sick with liver disease..this is quite common, if that helps.

By consultant.,you mean specialist, right?

What hospital is he seen primarily at? Leeds or Addenbrookes? They are both the transplant centers and for obvious reasons, have the best doctors..unless your at Oxford..then I can make a recommendation..because of a doctor doing work at addenbrookes while I was there in October and November, just after my transplant.

I don't know about other places..but I do know those two hospitals are considered the best in the UK for liver doctors.

If he has ascites, he is already in end stage..which can last a while, but age and his huge weight loss will factor into this. For me, I was only sick for three years before they put me on the transplant waiting list.

I'm not sure about bile ducts etc, but I'd advise you not to research online.lif you do, only use a site like this one, or the Mayo, NIH, Addenbrookes and Leeds.

Those sites have valid and up to date info. Also. You are the best advocate for your dad..if your really worried..go to another doctor, or call addenbrookes or Leeds or ask for a referral. (Sorry, I'm assuming your in the UK,,are you? )

Thinking a good thought for you and your dad..I'm sure your worried.. It can be very scary, I know.

You'll get lots of support and good info here!

Cheering you on! And welcome!

Kimberly

[joredd in reply to dckimberly]

Thank you Kimberly, what a great reply. you sound as if you have really been through it and I hope that your transplant is successful for a long long time.

I have been looking on line but will take your advise about which sites to look at, thanks.

Yes I am in England and dad is at Northampton General where they do not have a liver specialist unit like addenbrooks or leeds. Mum has had to start driving again after 15 years of dad taking over so it's hard to think of them travelling anywhere to a different hospital. Since my complaint, via pals, to the hospital I must admit they are paying dad a lot more attention.

Unfortunately no of use thinks dad will be considered for a transplant due to his age so I think we just need to manage the situation as best we can.

Before this last admission dad had given up on life. He was ling in bed 95% of the time, not reading, no tv or radio, staring out the window at the birds. He has been trying to tie up the lose ends of his life and making sure we are all ok financially etc. It is so sad.

I hope that now he is receiving some proper nutrition by tube he will have some renewed energy to fight this awful situation. We also await the outcome of the CT scan on Monday.

Thank you

Jo

[hippoHH]

I'm no expert, but my husband has been breathless for about a year having been relatively stable with NASH for about 10 years. The GI consultant that we see is hoping that there is a lung problem but from my investigations (via Google etc) it would appear that hepato pulmonary syndrome (I think is causing his breathlessness) is not related to the severity of the liver disease. His blood results and scans appear stable but he's been using oxygen since May. He will have further lung investigations but so far a CATscan hasn't shown anything. Lung Dr things liver is taking blood/oxygen from the lungs, but I have read that some of the toxins the liver can't get rid of, will settle in the lungs. An interesting thing is, that unlike with lung disease, with hepato pulmonary syndrome, oxygen levels are better when the person is lying flat which is the case with my husband. Incidently, he does also have some oedema which came on about the same time as the breathlessness. Surely he will have lost weight if he's not been eating. The ascites causes a lack of appetite. Hope this is of some help. Good luck.