Please help... my husband was diagnosed with hemochromatosis when he was 60. Long story short,, he has since had TIPSS procedure 4 years ago which stopped his variceal bleeding but left him with hepatic encephalopathy. I cared for him at home for 3 and half years but went into nursing care 6 months ago. During the past 6 weeks he has had 3 falls and several episodes of encephalopathy and has had to be hospitalised. He seems now to be hospitalised every 3 weeks or so. His symptoms are now, slurred speech, change in personality, sometimes muscle pain in his legs, general weakness. He is bed bound now for his own safety. The huge amount of various laxatives seem to have stopped working and he now has an enema once a day. He has puréed food because he is struggling to swallow. I guess what I’m asking is this the end now? Has anyone else watched a loved one go through this? What am I to expect now, I need to be prepared if anyone can give me any information I would be grateful. What does the end look like? Will it be too much longer? Thank you everyone in advance.
Is this the end of life?: Please help... - British Liver Trust
Is this the end of life?
I'm very sorry, I can't help, but I just wanted to reach out and electronically hug you. I'm so very sorry you and your husband are going through such hell. You will find immense love and support here, stay strong and stay close xxx
I'm sorry that I can't help you either. I'm sure that if you were to ask to speak to a doctor on his ward if he is in hospital at the moment, or a visiting doctor at his nursing home that they would be able to give you some information about his life expectancy. I'm sorry that you are going through this awful and stressful time. We are here for you if you ever want to talk. Take care of yourself. Alf
Hi Binxi.
So sorry for what you are going through. I would say at the moment it is impossible to give a length of time. It's different for everyone. In my husbands case, he was in intensive care with multi organ failure and pneumonia and even up to 3 days before he died the docs were still saying " there's still hope" they really do everything they possibly can for as long as they can.
If you can, spend as much time with him as possible, no matter how tough it is, but keep time for you too and look after yourself .
Laura xx
Is he on the transplant list?
I got as bad as your husband is, I was having no luck with the laxatives either and was drinking bucket loads of the prep stuff which you have for a colonoscopy and having numerous enemas in a day and this was for about 6-12 months, I was constantly in and out of hospital, I didn't eat and refused to have a feeding tube.... All them symptoms stopped and it wasn't long after that I got hospitalised I was in for 3 months and I got my transplant.... I had it in October and the doctors told me I wouldn't of made it till Christmas...
But we're all different... Can't you get in touch with the consultants who have been dealing with him?
I hope you get some answers x
Good Morning Binxi
I too cannot comment on your very sad husbands situation as every patients medical conditions are totally different to another's !
Please take care of yourself to as you must feel very drained ! I'm sending you a HUGE comfort hug to last you through this!
Love Trish xxxxx
Oh Binxi, II just wanted to add my sorrow at yours and your Hubby's sad situation. I can only repeat what Laura and Jojo have said. You need to talk with his doctor to get a prognosis for your poorly Hubby. My thoughts and prayers are with you both.
Take Care, David
3 years ago you said your husband was on the transplant waiting list. Is this still the case? Is he still under the care of QEB or is he currently in a local hospital. QEB and the liver team should be made aware of his current condition and see whether or not transplant is still a viable option.
Do you wish you both the best of luck .
Katie
Hello,
This is such a difficult situation for you and your family. As others have suggested ,try and speak to a doctor at the nursing home so that you can get an idea of how things are and what to expect. We do have a free helpline if you want to talk to one of our liver nurses, I'm afraid it isn't open tomorrow but it will be on Friday 10:00 - 14:45. (Normally open Monday to Friday)
0800 652 7330
With my own loved one I’ve seen miraculous recovery from similar places. However it’s very precarious and feeling emotionally prepared is something I feel you need to value. Now, whether it’s a good or bad day I have peace. That’s been incredibly important. Wishing you the best...
Hi Binxi
I have no advice to offer you, but wish you and your family find the strength and love to sustain each other. Sending loving healing thoughts to you and yours.
I’m really sorry for your situation.
Was your husband ever put on the transplant list? Does he have a consultant knowledgeable in the field of haemachromatosis involved in his treatment?
I have hereditary haemachromatosis. I was diagnosed 30 years ago and at that time I was close to death. They told my family I had end of life liver disease. I was sick and in a lot of pain, bedridden, and remember little, but eventually came back.
At the time of my diagnosis they knew little about hereditary haemachromatosis. I was very lucky. I found a great private consultant with interest in haemachromatosis. With regular venesection (blood letting) to treat my haemachromatosis plus a healthy diet, I survived. The other co-morbidities (arrhythmia, diabetes, arthritis) developed, but have been controlled/treated thanks to improved understanding in this hereditary disease. Some blips occurred along the way with surveillance. I developed HCC but am still here.
QEHB have consultants who specialise in both hereditary and alcohol related haemachromatosis because I have been seeing one since being referred for a transplant in January (I wasn’t eligible). My consultant is registered as a transplant expert with an interest in haemachromatosis (general). From day one he has supported me and I will forever be indebted.
Is Dad on the way out ?
Decompensated Liver/End stage Liver Disease
Hubby is getting worse.At my witts end.
