Continuous hospitalisation

[Bonair]

My husband has chronic liver disease, cirrhosis and he's through to the next stage of assessment for a liver transplant at Leeds. Jeff seems to be at home for a maximum of 10 days between being admitted to hospital with encephalopathy, ammonia in the blood which makes him confused and dizzy. Jeff was admitted a week last Friday with the worse case every, he was very agitated and the nurses and doctors couldn't control him. We'd been to the hospital earlier on Thursday afternoon because he said he felt dizzy, and normally I tell the medical staff to put his blood sample on ice and send it to the lab immediately because if they don't do this, the signs of ammonia disappear. The doctor checked his blood, gave him some fluids then sent us home. In the early hours of Friday morning I had to ring an ambulance because Jeff was so confused, wandering around the house not knowing where he was. His ammonia levels were high and eventually they had to sedate him. Later on in the afternoon he lost a lot of blood from his back passage and they took him to theatre to have an endoscopy to see if they could find where the blood was coming from. Jeff was sent to Intensive Care, then onto HDU and now he is on a ward.

I left Jeff for 10 - 15 minutes at the most to get a cup of tea and when I returned he was on the floor looking as though he'd had a stroke. I had to shout the doctor and the crash team arrived, Jeff was sent for an emergency CT scan. That was on Friday and he seems very tired and still a bit confused. They think it was caused because he had diorrhea and his sodium levels were low.

I'm praying and hoping that he will be well enough to make the next assessment appointment on 22 February.

Has anyone else experienced problems like this?

[susieanna]

Sorry to hear you are going through such hell; i cant begin to imagine what it must be like; i do have a a fear that my partner will end up like this; all i can say is i wish your partner well for his next stage of assessment; i am sure others will have been through similar to your hubbie. xx

[LAJ123]

Hello Bonair,

Really sorry Jeff is having such a bad time.

As for being too ill for his next appointment with the transplant assessment team. I was actually in a general hospital on a gastroenterology ward with a bout of encephalopathy, and I still got to my appointment. They sent me in an ambulance to the transplant centre.

I completely understand what you and Jeff are going through.

I was diagnosed with cirrhosis in late 2014 and by the end of September 2015, I had spent a total of 80 nights hospitalised. Most of this was with severe bouts of encephalopathy, usually the stay was around 7 - 10 days each episode.

Gradually, with the strict adherence to the lactulose and Rifaximin, the episodes became less often and severe.

I had my liver transplant in March last year and I'm now completely recovered from both the illness and the surgery.

I hope my story give you hope that Jeff will eventually, hopefully very soon, see a positive end to this dreadful condition.

In the meantime, make sure you are not forgotten in all of this. Try to get time to recover from each setback and keep coming here for the support, not just from the posters on here but the British Liver Trust.

Take care both of you,

Jim and Lucy

[Bonair in reply to LAJ123]

Thank you Jim and Lucy, you've definitely lifted my spirits.

I'm glad that you are now fully recovered and I hope that in the months to come I too can write a response like yours.

Edith

[vulnerable in reply to LAJ123]

I'm new to this site. I take comfort at your response to Bonair and your recovery from liver disease. I was diagnosed around 10 yrs ago with non-alcoholic PBC. irecently had an attack of encephalopathy, now on rifiximin & lactulose. However, I feel I have no quality of life -I

I am not allowed to drive, so completely dependent on others. Cannot be with my grandchildren unsupervised. It is hhorrible and so so scarey! I worry about another attack of encephalopathy as I have no recollection of the initial attack. I feel totally distraught.

[Bonair in reply to vulnerable]

Hi, I'm sorry to hear that you suffer with liver disease, its definitely debilitating! My husband Jeff is very slowly deteriorating. He's in hospital at the moment, with what I thought was encephalopathy, but was actually lob blood count.

Jeff can't remember when he has episodes of encephalopathy either, but I am fairly good at noticing the early signs. Do you live alone or with someone? If you have a partner, I'm sure they will detect the early signs, with my husband it's subtle changes at first - loss of appetite, confusion, slurring his words or saying the wrong words in a sentence. It can be frightening for your partner, or whoever is with you and if its not treated quickly it will develop into a serious condition. Whoever takes you to hospital A&E needs to ask the nurse to put your blood sample on blood and send it straight up to the lab. A doctor told me about this once and although you would assume that medical staff would automatically do that because of your condition, its mostly, not the case. You could call it the ammonia test as its the level of ammonia in your blood that causes the encephalopathy.

Jeff is now on the liver transplant waiting list, but we both know that his condition will get worse the longer we wait and we've been told that although he's on the list, he may not actually survive long enough to get a liver.

Every time he's admitted to hospital I have to inform the liver transplant coordinator and depending on Jeff's reason for being admitted, he could be temporarily suspended from the waiting list.

I hope that you get some good news soon. Have you been considered for the waiting list? LAJ123 gave me hope and his posts are good to read.

[LAJ123]

Bonair,

Just a thought, if Jeff looks as though he might still be in I hospital on 22nd, there are a few things you must do to ensure you don't miss what is a very important appointment.

On your next visit take the appointment letter with you. Have two copies and ask that one is put in the nursing notes and one in the medical notes. Then ask what provision will be made to ensure he gets appropriate transport to the clinic.

Lucy did that, and on the morning of my appointment I had an ambulance and nurse escort organised. The more notice you give them, the more time they will have to make sure he gets there.

Jim

[Bonair in reply to LAJ123]

Thank you Jim that's so helpful. I will definitely do that.

Edith

[jojokarak]

Hi bonair I was also in and out with H.E constantly your description just sounded like one of my visits which my husband and family hated as I didn't recognise them at all, I kept being found on the floor as I was constantly falling out of bed, I too had a couple of internal bleeds I am sorry to say but this is just part and parcel of cirrhosis. My H.E did get more under control with rifaxamin and Lactose but they have to be taken religiously to get the full effect, diet and exercise also very important. The assessment will still go ahead as has been mentioned above you just need to inform staff, good luck 🍀 x

[Bonair in reply to jojokarak]

Thank you Jojokarak