Hi, I haven't been in touch with you all for a while. Things haven't improved or changed. My hubby has respiratory test this week, liver ultrasound test next month and finally sees his consultant in August 6 months after he last saw her. His consultant still says that ye should just rely on his medication and refuses to put him on the transplant list. He is 45 and has decompensated stage 4 liver cirrhosis, plus other problems. He is been abstinent from being diagnosed 12 months ago. He has done everything they have asked of him and still can't get on the transplant list. He is so depressed now that all he says what's the point, I will just die and I won't be a burden. I don't want to lose him, I have called PALS, his consultant secretary etc and they all say they can't help.
Depression : Hi, I haven't been in touch... - British Liver Trust
Depression
Really feel for you.
Have you been given a reason why they won't put him on the transplant list? Is it because of the other health issues putting him at risk of having such a major operation?
I wish you lots of luck
Laura
No reason at all. All she ever says is continue with the medication and I will see you in 6 months time. Tired of getting fobbed off. He is constantly breathless even if he just goes up the stairs. He stays in bed all day at least 5 days out of the 7. He developed lupus and has severe bronchitis and has lost 3 stone in body weight through muscle wastage. Ijust think that if he was on the list it would maybe give him some hope. His liver is severely damaged but she not bothered at all. Sees her twice a year, its a joke
Hi again, sorry to hear things are no better with your hubby. When you say consultant refuses to put him on transplant list ......... when was this? I know they said he'd need one in the future when first diagnosed in August 2018 but have you managed to speak with consultant since? Have you not managed to bring that August 2019 appointment forward? Obviously in August 2018 they couldn't consider listing as he was newly diagnosed and not yet proven his abstinence.
Now that he has been sober these 10 months or so then assessment for transplant should be an option. He will need to be sent to one of the t/p units for assessment and it's them and a whole multi-disciplinary team who decide on listing suitability or not.
Sadly we just had a member who lost her partner after the long fight to get listed, sadly he never made it as far as transplant assessment - just waited too long.
You must ask, the squeeky wheel gets the treatment. We've just been through in Edinburgh and were complaining (a little) about lack of local monitoring, scans and bloods going longer than the 6 months and appointments being cancelled constantly. Consultant there said if it takes a bit of pushing then so be it, I must push. She said she felt sorry for those who didn't have a 'Katie' monitoring and co-ordinating things and feels some people will definitely be falling through the cracks.
Even if you put it in writing that hubby has complied fully with a period of abstinence, his health isn't improving and you would like the opinion of one of the major liver centre's as to what possible treatment options are now. At 45 with love and support he still very much has a life to live.
Best wishes to you both, Katie x
Well the consultant that we last saw 4months ago said continue with the medication and don't worry about a transplant yet. He is at the end stage liver disease and I just wonder how bad it has to be to be taken serious. I gave my concerns to their PALS team in February I have been waiting since for them to reply to me. Absolute waste of time! I must of left about45answer phone messages with them and they never phone back or answer phone, so I have given up with them. I phoned his consultants secretary to push his appointment forward but she said that there was no possibility to do that. Stuck at crossroads and don't know which way to turn. I feel he will be one of the unlucky ones that won't be offered help until its too late x
What symptoms is he currently displaying? When you say he is decompensated does he have ascites? Has he had varices and/or bleeding? any signs of Hepatic Encephalopathy? These are signs of decompensation.
If he had bleeding, ascites or HE that has gotten worse then these would be a medical emergency and it wouldn't be unreasonable to present at A&E.
Is he managing to eat - he needs to keep up with the small meals and snacks including carbs and protein to deal with muscle wastage and I know he has the issues with bronchitis but he does need to try and keep exercising (short walks are ideal if he can manage) and this would give him the best chance if it does come to t/p assessment.
Katie
If he doesn't have ascites or varices then he isn't currently decompensated. No doubt he is poorly with the bronchitis and other symptoms of liver disease but he probably isn't yet at transplant stage. If he gets worse then i'd get him to hospital but failing that it probably is going to be consultation in August and see where you go from there.
Yes he has ascites, a touch of HE no varices yet, frequent nose bleeds. His appetite is up and down. When I say to him, shall we go for a walk or try a little exercise, he replies what's the point, no one's helping me anyway. He feels like giving up. x
Just sent you a PM regarding food, fuelling and eating for muscle loss prevention.
He needs to help himself so he is in the best possible health if t/p assessment comes along. If he was only diagnosed in August 2018 and only been fully abstinent since then it is early days. Obviously he only his the 6 month sober in February. August will be a full year and at that point you can really push for the second opinion.
Not everyone needs a transplant urgently, if he looks after himself, eats well, takes meds as prescribed then actually you can turn things round yourself.
My hubby was decompensated with bleeding varices April 2012 (& subsequently we've been told he came close to death), has had 42 varices banded, other complications of portal hypertension including aneurysms in his splenic artery. Listed for transplant in June 2014 weighing 8 1/2 stone and deemed malnourished with muscle wastage. Followed doctors orders, ate well, exercised, made the most of good days, rebuilt muscle and now weighs 11 stone (without any fluid retention). Delisted after 10 months and now deemed stable, all bloods normal, another clear endoscopy last week. Next Edinburgh consultation will be June 2020, next local consultation January 2020.
It's not all doom and gloom, if you help yourself to improve you can. Ok hubby has his bad days, he has mild HE so can't work, concentrate and has his struggles but at the moment he is a million miles from needing transplant.
My hubby only had nose bleeds in the early stages of his liver ill health and they arn't a sign of decompensation.
True decompensation is classed as :- stage 3 cirrhosis Ascites +/- Varices
stage 4 cirrhosis Bleeding +/- Ascites.
If you can both work on keeping him as well as possible you can delay the need for transplant. At the end of the day there arn't actually any guarantees with transplant. Not everyone gets the happy ever after even with a new liver. We always saw it as a golden ticket to this wonderful new life reborn but sadly as we've seen on here over the years that doesn't happen for everyone so it is often a case of making your own last as long as possible and being as fit as possible for if that eventuality arises.
I keep a close eye on my hubby for any signs of deterioration. I've learned as much as possible about the condition so that I can spot and can get the appropriate help as soon as possible.
Katie
May I suggest that you re-send your complaint addressed to Corporate Complaints Dept. This will ensure that you at least get a reply promptly and will hopefully give you some leverage to fight your husband's corner.
So sorry to hear that. Is it worth contacting your MP? They are supposed to advocate on behalf of their constituents. Or possibly try Citizens Advice? citizensadvice.org.uk/healt... or I found Healthwatch on the web - never come across them before but worth a look? healthwatch.co.uk/what-we-do
And yes, start putting everything in writing so you have evidence of how long you have been asking etc
Take care
Thanks for the good advice, I will look into it for sure x
Hello Catmeow,
Really sorry that you and your husband are experiencing such a difficult time. Perhaps a visit to your GP would help in dealing with some of the problems associated with depression. Depression is a natural response to what you are dealing with but you should try to get some help if its affecting both of your lives and health.
We should remind you that, although some of the members of the forum have a great deal of experience and knowledge, nobody is qualified to interpret symptoms, test results or your husbands diagnosis.
If you would like personal advice we do have a helpline where you are able to talk to a qualified and experienced nurse who is a member of the British Liver Trust team at the Trust head office. (Helpline: 0800 652 7330 - 10am to 3pm Monday to Friday)
britishlivertrust.org.uk/ab...
Best wishes,
Volunteer moderator
I am very sorry to hear 
this must be very distressing and disheartening as keeping sober is hard enough not to mention being denied hope! I don't know what is the reason for refusal, whether it is sound or not sound. Keep fighting.
if need be get another opinion. Do everything you can to fight together and Don't let your close one to disappear into depression., this is such a dark place to be in. Thinking of you
Just remember that a transplant is a last resort. His liver doctor wants him to keep his original liver. That is the best option. I have stage four cirrhosis. Was decompensated for a long time with all the associated dramas but there was never talk of a transplant.
A liver transplant is not necessary for a vast majority of people with cirrhosis. I’ve been compensated for over a year now and am as healthy as a 97 year old chain smoker 😂
I’ve been on deaths door for a long time with this disease but the medications started doing there job.
Cheers,
Brett
Hi
I can't add any more to what everyone else has put but I'm sending you both lots of love and hugs Lynne xxxx
I too cannot add to the numerous messages, so I'm just sending you strength to hang on plus hugs for you both which I think you need right now.
Take care
Love Trish
Hi Catmeow, I think you should demand another opinion, possibly at a transplant centre. Is the doc who refused a tx assessment, a hepatologist or just a gastro? I have only seen a hepatologist twice in my 2.5 year cirrhosis, and am now having to wait a year between appts. I got very depressed when first diagnosed, with morbid thoughts and was referred to a psychologist, who was a great help and 1 year later, I am a lot happier. I was told that I had stage 4 compensated cirrhosis, and a tx at my age (72) was unlikely, but your hubby still has a lot of life to live, so you should create a fuss to get another opinion.
Best of luck to you both,
David
Hi David, thankyou for your kind reply and I do feel for you, it's never fair.
We can't talk to anyone from a transplant centre because you have to be referred by your consultant. She is a gastro consultant. She was the one that said when he was first diagnosed that his only help was a transplant. Now she seems to have changed her mind. x
Oh dear, you really need to see a Hepatologist, she is not a specialist in liver disease. I would go to my GP and say you are not happy, and want a referral to a Hepatologist. He who shouts loudest gets heard.Thank you for your kind thoughts. I have now resigned myself to the likely outcome of my liver disease, and am trying to live life as normal as possible, when my health allows.
Both of you take care,
David
Hi Cat,
I can fully understand what your going or your party is going through. It happened to me. I thought that I was well enough to be put on the list but it all got postponed for 3 months then checked again. The reasons were, I didn’t have a support network around me, when I did but because I didn’t engage with any services ie AA or Addiction Awareness, as I had stopped for over a year by myself, they were reluctant to put me forward. The 2nd reason was due to my living arrangements not being settled. I was staying in temp accommodation as my wife wouldn’t let me come home after I was being discharged. I though it was rather unfair as I couldn’t really do much about it from a hospital bed.
Anyways I managed to get put on the list 3 months later. I was so depressed as I stopped by myself and thought I was being punished for having the strength and will power do stop and well the second part was something I couldn’t con. If someone doesn’t want you living with them, there’s not that much you can do straight away apart from find somewhere safe to live at until you get yourself sorted out.
It was a really hard thing to take, frustration, not understanding why, asking yourself, what else do they actually want me to do. The only thing I could suggest is finding out why they said no and try to fix anything that they have issues with. I understand now why they said no to me and looking at it overall I can see the concerns that they had.
I hope this helps, I didn’t know where to turn at the time and it’s so easy to say right that’s it, it’s not going to happen and just let things go. But you can try and change it round. Find out why it was a no and then focus on changing why they said it. Seeing you try and wanting to have it done are big factors in getting on to the list.
Good luck and let us know how your getting on. As always if you have worries or concerns about things just always ask to have things clarified.
Cheers Will.
Hi will, thanks for your kind words and advice. Your story is heartbreaking and I don't how you got through all that. My husband attends alcohol help through the hospital and never missed an appointment. His consultant never explained why he couldn't go on the list, all she said was just carry on with the medication and come and see me in 6 months time. It's hard for him to stay positive because he feels that he's not getting anywhere. It will be a year in August since his diagnosis and its taking its toll on him physically and emotionally x
Hi Catmeow,
I see you have received many replies with good advice and most are more helpful than I can be since we live in the US.
But here is our story, which might be a help.
Husband had a doctor appt. Nov 2015 because he'd a major nosebleed while we were away and they did blood work - that afternoon he got an urgent call from our GP to get to an ER. He waited til I got home from shopping and we went to our ER - they took him by ambulance to "the city" and the hospital that is considered best for liver disease - he was in liver & kidney failure. Our younger son drove me there and we waited while hubby was admitted. I'm still not sure how long he was there, but he had ascites, which were drained at some point - he went into HE where he thought I was one or another of his sisters - scary. His kidneys started functioning again, his episodes of HE stopped and his doctors were surprised that as bad as he was he was improving. His liver team came in and told him that he had to quit drinking or he'd be back and next time would not be walking out of the hospital. He told them he would quit - and did and has not started again. He was 67.
I asked his liver doctor about transplant possibilities and we were told no need at this time.
He is still here and taking his medications, including lactulose for HE, we see his liver doctor every 6 months and his blood work improves a tiny bit at each visit. He has put muscle back on and is back to puttering in the garage and yard. Hubby has had high blood pressure for years and had a spinal disc fused not long before this. He does take a med for depression and this he has taken for many years.
But the point I am trying to make with my rambling is that my husband is still here. He got up and moved around - in fact he managed to fall and break his foot twice & his hand once since his liver failure - our family joke has always been he has weak ankles. He has had surgery for a hernia. We recently got back from a road trip from Minnesota to Arizona and back with stops to see some scenic sites.
If I could encourage your husband to put aside the idea that no one in medicine is doing anything for him, I would. My husband has often gotten irritated with his doctors because he wanted them to look at an issue that really bothered him, but they worked on something else. Our GP told him one day that his doctors were going to work on what they saw as the more important issues first. Not that that soothed my husband :-).
My husband's liver doctor has told him that he has as good an opportunity to live another twenty or thirty years as the next person. Hubby's mom is 94 and still in her own home, drives, & recently gave up golfing & bowling because it hurts her knees [she has 2 newish hips].
Best wishes to you & your hubby,
Mary
Wow Mary what a story! Never heard you tell that full version before! Very interesting and good to hear in so many ways 👍
Miles
Hi Mary, thanks for the reply. I suppose by reading your story it has provided me with some hope. Thankyou and I hope everything continues to go well for you both x
May I ask what medications he's on for his liver ? Thank You
It sounds like you would benefitfrom a 2nd opinion, I did this and and had an amazing outcome. I searced on line for alll the teching hospitals that had a specialist Liver Unit. Royal Liverpool fitted the bill so I then spoke to my GP. He totally agreed with me because all my bloods were normal yet I was told I had severe fibrosis! NASH. I also mentioned choose and book which is what enables you to select the hospital for your man. I was shocked to get an appointment in 6 weeks! I was given a fibroscan then saw a Prof. Obviously I was no where near as poorly as your husband, in fact I had no symptoms at all. The fibroscan said fibrosis! He advised I follow a low carb diet because even with cirrhosis reducing the liver fat would be a big plus for my liver. My next apt was in March. I did lose weight, parlt due to having emergency surgery on my intestines, due to it being twisted and could have burst , which is a high risk of dying. I lost even more weight as they starved me for 9 days after surgery. It is rare and isnt genetic, I knew how serious it was because my Mum had suffered in exactly the same way over 15 years before. So in March there was a lot less of me, with a zip like scar and it looked like I had 2 belly buttons. It was a different consultant and he too said my fibroscan showed cirrhosis. He explained that he wanted me to have specialised scan, only for people who have NALD. I had to wait longer as only 2 radiologist were qualified to do the scan. The one who I was due to see was poorly on my appt day, so it was done at the end of May. I attended the clinic on 12th June. I was a little surprised to be seen by a nurse practitioner, but I soon discovered why. Apparently fibroscans do not work on 20% of people. I am one of this number. I was astounded to discover that I didnt have cirrhosis, or severe fibrosis or even fibrosis!! I have common fatty liver. They want to do another fibroscan in December to record my unsuitability for fibroscans. I appreciate that I am very very fortunate, but if I hadnt asked for a second opinion, i would never have discovered all this. I can now get travel insurance again too, which is extremely expensive even for fibrosis. I only looked at the actual hospital sites, I wanted to be seen by a liver specialist because the gastro guy who diagnosed me basically failed to follow up and failed to explain the seriousness of severe fibrosis! This could be just what your husband needs, seeing someone who is an expert on the liver. I didnt even have to go to my GP's surgery, I had a phone consultation! I wish you well on this, dig those heels in and I'm sure it will lift your husband out of his feeling of hopelessness. Hazelxx
Hi Catmeow,
Don't worry I won't bore you with another long story lol, I just wanted to tell you and especially your hubby, please don't give up! I was depressed too, very much for the same reasons you gave (partly misunderstanding caused by incomplete explanations and partly by callousness I perceived) and therapy really does help, if you give it a chance.
They don't go over your whole childhood, life story, etc. now, they concentrate on what's happening today.
So it doesn't have to be a long drawn-out process, and with or without medicine, he can expect to feel much better sooner rather than later.
There really is a lot of life ahead, and we are all here to help.
Looking forward to hearing from you again soon! 😊
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