Chronic Liver Disease - Chronic Kidney Disease

[Kerweey]

I have just started caring for a relative with the above conditions, plus Hep C, Type 2 Diabetes, Portal Hypertension and associated issues. I don't know where to start for help with his care and can't find any information on prognosis. I suspect it's not great but both the hospitals he has recently been admitted to with complications don't seem to want to give me any idea of what to expect. I've had to change his GP to mine but am still waiting for an appointment. No body seems to want to expedite anything and in the interim I am struggling to cope.

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Evening

I think its pretty unreasonable that you haven't been given more advice from the professionals.

The list you have put up means the person is EXTREMELY ill, Portal Hypertension alone is serious enough. There is most likely advanced Cirrhosis at play here and it can become life threatening at ANY moment. Bursting veins called Varices are a risk, Hepatic Encephalopathy is also one to watch. You really need some frank discussions with the doctors as to how you can best look after this person. Its a very tough job and you have a very bumpy road ahead, this sort of care will take its toll on you aswel, try and find some time for yourself too.

Are they going to try and rid the person of the Hep-c? Can the doctors give you a MELD score of Child Pugh score? The scores are a profile of how well the Liver is functioning and its used to plan care and treatments. Has a transplant been discussed, although with the kidneys failing this might not be an option.

[Catfishjumpin]

Ask your GP to refer you to a gastrointerologist. He is very ill. Try to capture the attention of someone in your GP office. I would not hesitate to pled because that ill, its a reality he could suddenly die. They will hear your honest concern. These people if pushed even a tiny bit can become obstinate. I'd pled. I finally killed that virus after two treatments one in 2004 that lasted a year then one in 2014 that lasted 3 months. During treatment I developed one liver tumor and somehow I still manage to live with it. I am 65. Call soon. Good luck.

[JSR2014]

This sounds similar to my father, he has CLD and CKD, the CKD is as a result of Hepatorenal Syndrome, his HE (Hepatic Encapathology) comes and goes, it can present by him being nasty, confused or even euphoric. He has now been turned down for transplant as he was apparently too unwell, I think they were worried about his kidneys. So now we wait for the next chapter....whatever that might be. Good luck and I will follow this with interest, perhaps a liver transplant and dialysis of the kidneys if required to bridge him to transplant?

[Lynsangster in reply to JSR2014]

Same situation with my husband. He was dialysed three times. The third time ended abruptly when he became unconscious and looks like can no longer look to that for treatment.

Interesting you mention euphoria as part of the HE. My husband is in Rifaxamine 1100 daily but the euphoria is very apparent.

He was turned down for transplant as too ill

Like you we cannot get a prognosis as it's just an unknown as to how long the kidneys stay stable. The. Dialysis he did have seems to have somehow rebooted the kidneys but we've no idea how long this stability will last.

Wishing you luck and will follow progress.

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Dear Kerweey

Thank you for joining Health Unlocked, we are very sorry to hear of your relative's condition.

We have lots of information on our website regarding Hepatitis C, Cirrhosis and Hepatic Encephalopathy in the liver health section here: britishlivertrust.org.uk/li...

Please feel free to ring our offices on 01425 481320 and we will be able to give you more information.

Best wishes

Carol

[Kerweey]

Thank you everyone for your messages. After two days of pleading and finally crying in the Doctors reception, they have agreed to take him on and I have to call tomorrow for an urgent appointment - if he's well enough for me to take him. An added complication is that the last hospital discharged him after ten weeks admission, to a hostel, up three flights of stairs and with no cooking facilities and some ten miles from his registered GP and addicted to morphine! No plan to wean him off the morphine. Plus I don't know how they thought he could be notified of hospital appointments! Social Services at the hospital were incredibly unhelpful and our local social services said they couldn't help as he was of "no fixed abode".

He is in complete denial of his conditions and whilst he has agreed I can help, even running through his numerous medications with him he just keeps saying "don't tell me what its for, I don't want to know" and getting aggressive. Hence why he hasn't been to any hospital appointments for his liver and hep c for a number of years.

He hasn't had any symptoms of euphoria but gets very depressed and sometimes agitated. He has constant nose bleeds and is frequently sick - which I believe is from the morphine.

The hardest part is knowing he could pass away at any time and waiting for the doctor to refer him for hospital appointments, knowing how ill he is. He won't ever get a transplant as he has too many other conditions which mean he won't be up to it. I just hate the feeling of being so helpless.