My husband has Decompensated Liver Cyr... - British Liver Trust

British Liver Trust
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My husband has Decompensated Liver Cyrrhosis

Hi my husband gave up alcohol six months ago completely. However, I worry that it was too late. He has ascites, yellow eyes and skin. He was rushed into hospital again yesterday with a chest infection. As the liver can't cope he needed drugs to help do it's job. I keep reading terrifying things about a decompensated liver and am so frightened of losing him. He is only 56. He hasn't been recommended for a transplant but they said that he will keep 'filling up' with fluid and is very susceptible to infections, which, in turn are a danger to him. I'd appreciate any advice. Thank you.

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Santorini,

I found myself in a similar situation. They will need to get him well enough to get to the assessment. I had the jaundice, ascities, oedema, infection, skin problems etc. The fact that he is not drinking and being medicated is the way to go. Once he is stable enough, he should be moved onto assessment. Please attend his appointments to make sure that you understand what is going on. Good luck, it’s a hard journey.

Mark.

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Dear Mark, thank you. Yes he has all those symptoms. The sheets and pillowcases and clothing are covered in blood stains because of the itchiness. I do go to his appointments and read what I can but thanks to this site, I am reading about people who are experiencing the same thing. It's a big help and support. The main thing is that my husband means what he says and I know he will never drink again. He wants to live and so he is doing all that he should. I hope you are now stable and a lot better?

Cherie

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Cherie,

It’s a hard place to be, the bleeding will most likely be down to low platelet count, it should be 140, so check with the doctor. The blood was horrible, bed, clothes etc, wife’s tip, white sheets and vanish.It’s great that he has made the decision to stop drinking, dying for a drink, no thanks.

If he has no issues, then hopefully a problem but not an addiction. Does he have a Alcohol Counsellor?

My consultant said that he would get me well enough to be assessed, he would not send me to the Royal Free on a stretcher. 10 months and 3 stays in my local hospital (50 days), I was listed.

Type B blood meant a 19 month wait, that was tough. I was transplanted in August and looking forward to a bright future.

Good luck and feel free to ask any questions.

Best,

Mark.

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Yes, the gums were bleeding and everytime he scratches and the blood is so thin and runny. I don't worry about it and the washing machine on a boil wash always sorts it out but thanks for your wife's tip! My husband has one of those rare blood groups too, I can't even remember which one, possibly B Rhesus Positive... But that is fantastic news about your transplant!! You can start life anew and look forward to feeling good again. I'm so pleased for you!! I understand there is quite a complicated criteria for transplant patients. I'm so encouraged after hearing your experience, Mark, thank you. :-) Maybe when my husband comes home he can also go on the site. He doesn't have alcohol counselling as he just doesn't want to drink. The thought of dying is enough to put him off alcohol and he doesn't even think about it anymore, he just accepts that it is no longer an option.

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Cherie,

Make sure he gets to the dentist, I neglected that, now missing a few teeth. Fortunately lower back.

If he is B+ then be ready for a wait, follow all advice, carefully and closely.

My counsellor was part of the Gastro department, all linked to the Royal Free. It’s very useful, he had access to my records, we talked through my bloods and was very good at talking me through the entire process, with humour.

Alcohol is not an option but life works perfectly well without it, I find it liberating (and it saves lots of cash).

Again, good luck to you both.

Mark.

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He has been going to the dentist and lost a couple of back teeth too. He was supposed to go back today but he's in hospital. The counsellor sounds great, I must make enquiries at our hospital. When he is feeling well he does enjoy life without alcohol. I think we grew up in a culture that was all about pubs and drinking. It can become just a habit but my husband overdid it. It took over life in the end but now he's a different man and he will feel better for it in the long run. I hope. Like you! And as for the cash we are saving, wow!! It's a huge amount! He was a wine drinker mainly. Are you able to travel, Mark? I think Dave needs a holiday in the sun at some point next year maybe.

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Again, that sounds about the same for me, wine and over enthusiasm and yes, it is part of the culture. But that is what I think of now is ‘the alcohol bubble’, brave new world when you step outside. Holiday, sun does not sound likely, speak to the hospital, England is nice.

The money you saved will pay for the dentist.

Mark.

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Thank you Mark, yes true, the money we are saving will pay for the dentist AND a holiday! I think you're right, England is beautiful and it means we can bring out dogs too! Going abroad would be too risky. I know those Fenafexodine tablets, I'm on those myself! He is on something too but I forget the name of it. Thanks so much. I'm glad you have succeeded in getting through this yourself. Your wife must be so relieved. Cherie ps/ I hope 'snoutie' doesn't mean you smoke now instead, lol!

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Cherie,

Are you Sarf of the River? Snoutie, tabs...no. My Tibetan Terrier, Maisie over the Heath, oih, get your snoutie out of that horse***t. The joy of walking her again.

Regarding the itching, my tip, fenafexadine, dermol in the shower, Zerobase cream and Organic Manuka Honey Cream for those sensitive bits.

Got the all clear to fly but the memory of my last one still haunts me, no idea I had low platelets. I could be at Gatwick today 😆.

Hope you other half gets home for Xmas and things are going well.

My very best,

Mark.

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Hi Mark, my husband is a sarf of the river Balham boy, born and bred! I'm North of the river. But he refers to 'fags' as snouts or 'arry grouts! Not that he smokes now, of course. I've just got back from walking my two dogs, I have two Borzoi. I'm going to purchase your recommendations for Dave, hoping he comes home on Monday. Poor Dave we went to Gran Canaria a year ago and he was like an old man, then we went to Iceland in January and he was barely able to walk. Turned out he was severely anaemic, which I guess you would have been too. So he's been bad for over a year now. But at least we finally know what it is. I wish you and your family a very Happy Christmas. I really appreciate your help. All the best, Cherie

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Hi

I have nothing to suggest I’m afraid. I hope he gets well enough to be assessed. Sending you lots of hugs at this difficult time

Xx

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Thank you Isabelle2 <3 Right now it's just about keeping an eye on him and getting him to hospital every time he has an infection.

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Be brave, I had to wait 18 months before I had my assessment for transplant. They need you to be fit enough, mentally and physically, for the surgery, too ill and you may not survive, to fit, and you may be assessed as not requiring a transplant at the moment.

They will be keeping a watchful eye on him for now, and with medication he will improve. It is a long road, but he can make it. As he has only been off alcohol for 6 months, it is only now that they would even start to consider transplant, so fingers crossed. If he is not eating, speak to doctors as they can give him protein drinks to keep his strength and weight up.

If his memory or mood is causing you concern, again speak to the doctors as this may be due to a build up in toxins, and again medication is available to help with this.

Ascites, fluid on the abdomen, is again a big problem, but it is possible for this to be controlled better with diuretics

Is he been seen by heptology yet, or still under gastronomy, if not, ask for him to be referred.

No point telling you not to worry, you will, but take care of yourself as well, as he needs you fighting fit, both now and when the transplant does come.

He/you will both come through this, it will take time, feel like a lonely battle and at times frustrating, but remember we are always here to lend an ear, and if you need to speak to someone try the British Liver Trust helpline, they are great and allow you to get things of your chest, and give you the assistance you need.

George

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Hi George,

He is on those protein shakes but he has a pretty good appetite. He was fine at home, eating and cooking and suddenly he got an infection in his blood. He now has a flu bug too that he picked up in hospital. He is in the liver ward at the moment and they are doing constant blood tests and have taken a sample of the fluid in his stomach. They seem pleased with his progress. They will be draining of some of the fluid and stepping up the diuretics too. He's on oxygen but not a high dosage. He would be doing so great if it wasn't for these infections. Thank you, I am coping well. I'm so fortunate that the hospital is just a few minutes away from me so that helps loads. He's in pretty good spirits and gives me a list of things he wants!! So that's all very positive, it shows he is well enough to enjoy reading and eating!! Thank you so much. Cherie

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Hi, it’s never too late. Just by giving up alcohol means that his liver will very slowly start to show signs of improvement. Just follow any advice given, avoid alcohol at all costs, eat as healthily as he can and the impossible can start to happen.

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That's good to know. He will never drink again and I know he won't. He puts his mind to something he sticks with it, he's very strong in that way. And that's half the battle. He wants to get well and enjoy life again. He is a great cook and so we do eat reasonably healthily. Thank you so much.

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Hi Santorini77,

You do not say what country you live in, which could determine treatment.

My husband was hospitalized in liver & kidney failure in 2015 and he is still here and doing fairly well. We live in the USA. So there are good stories even with serious symptoms.

I might suggest that you contact his doctors and get as much information as you can, contact a patient/family advocate if that is available or if that would work better for you as not everyone is comfortable nagging doctors for information in layman's terms.

Best wishes for your husband's improving health and you.

Mary

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Dear Mary, thank you for your very encouraging news about your own husband. I live in London and the hospital is close by. It's a wonderful hospital and he is being scanned and having all sorts of blood tests. I feel that he is in very good care. I did speak to a doctor today and although they wouldn't give any long term prognosis, he is doing well. I know what you mean, the doctors are always so busy but I do manage to speak to one when I really need to. Thank you so much and I wish your husband well and you too, it's very difficult for us too. Your response has helped me :-) x

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Don't give up. Being decompensated means that the Liver is struggling to do it's normal job in your Hubby's body. It is possible for the Liver to go back to compensated with strict adherence to meds and avoiding drinking. It has also in some rare cases healed on its own.

1. No drinking at all.

2. Take diuretics prescribed. This will keep the fluid out of his abdomen and legs and reduce the threat of any fluid becoming infected.

3. Take the medication prescribed, such as lactulose and or rifaximin without fail daily.

4. Stay educated on the subject (these boards are a great help!)

5. Eat as clean as you can (cooked meals, cut out outside or heavily processed foods)

6. Live your life.

You will be astonished how quickly things will turn around. Don't give up. Still lots of hope!

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Dear Jenngrady, thank you so much for your response. I think because it's only been a couple of months since he had the cardiac arrests that they are still trying to balance his medication. I know he will never drink again, he loves life and he knows what would happen if he did. He doesn't even want to drink now. I have nagged him a bit about the lactulose because he doesn't like taking it. But it's so important as it helps clear the toxins out. He is a great cook and loves cooking. Since this has happened we have both been eating a lot healthier and reduced salt intake. He is very committed to getting well and so I'm lucky that he is so strong minded. I wonder if we are able to travel abroad at some stage, I'd like to take him for a holiday in the sun. Many thanks again, Cherie ps/ we have always lived life to the full, we met fairly late in life and so we are always making up for lost time! He is the love of my life!! :-)

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Hi Santorini,

Tell Hubby to mix the Lactulose in Juice or whatever beverage he likes to drink that is sweet. I give my Dad his daily doses in his OJ, it actually doesn't taste bad (has a cinnamon like taste). The best thing to do with any type of liver issues is to be consistent. If the doctors aren't talking transplant, this means you have a fighting chance to turn things around. Fight. This is a matter of being consistent, good eating, and living a happy stress-free lifestyle. This will help your husband's liver function as best it can until you find out what's next. You can do this. Don't give up.

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Dear Jenngrady, I will make sure he does take the lactulose. Maybe I could make a nice smoothie and add it to that too. I think he needs to walk more as this helps with the fluid build up? He won't come for walks with me and the dogs despite there being plenty of benches in the parks. But I'll make him walk around the block at least, as soon as he is up to it. But I will not give up, life is too precious. Thank you Jenn. Cherie xx

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Smoothies are an excellent idea. I make them all the time with frozen fruit and greek yogurt. I add a little lactulose for that and it makes it taste just a little sweeter. It actually enhances the flavor. About walking, when you are carrying that amount of fluid in your body, it's hard. They want to rest and rightfully so. But exercise DOES help. Perhaps get him a set of small dumbells and leg weights. He can sit and do some light exercises to build up his endurance...then ease in some walking. If the doctor hasn't prescribed it already, you want to ask about rifaximin. It will help tremendously with the lactulose. Finally, if they work, do they have him on diuretics like Lasix? You want those too.

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Hi Jenn, I always pack loads of spinach into my smoothies too, which will be excellent for him. And I'll add the lactulose too. Yes, his stomach is like a large water balloon. The fluid is also infected, so he has THREE different infections now. We're still hoping he comes home on Monday. I do have a small set of dumbells and I'll look into leg weights too. I'll find out about the Rifaximin too. He is on diuretics, not sure which, they are still juggling around with the dosage. Thanks very much, off to see him now :-)

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Why haven't they tapped him yet? Did they say? When I post "tap" I mean Paracentesis where they insert a small tube and manually drain the fluid from him. This will be a massive relief to him and the belly will go. Did the Doctors mention this to you guys?

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They haven't 'tapped' him yet because of the infection in the fluid. They don't want to give him yet another one. So until that's got the all clear, it has to remain. They don't seem too concerned about it though and my husband seems ok, acting normally and not in any pain. Just a bit breathless because of the flu bug and the other two infections (blood and fluid).

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As soon as they clear those infections, you must insist that they tap him. The diuretics are only going to work so much, he needs a head start which tapping him will provide and much-needed relief. I learned from my Dad how uncomfortable that can be.

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Apparently they can't risk it until his kidneys have improved. He is on the Rifaxamin, I asked him when I saw him today. He only feels uncomfortable if he lies on his back but everything else is ok. His legs are huge again but with the diuretics and when he is able to move a bit more then he should begin to get back to normal. They have found the antibiotics to treat his fluid infection with now, he was given an intravenous drip while I was there. So hopefully that will help rid him of infections and he can come home on Monday latest. I'm sure they will drain the fluid as soon as they can. If not, we will just have to have another Christmas when he does come home.

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Hi Santorini. I am so sorry for what you are going through. The stage your husband is at could go either way however, my husband had all of your husbands symtoms, was dry for 3 months but died in intensive care aged 54.

Living with an adict is torture so you need to take good care of yourself to be strong enough to help you get through what you are faced with each day.

Hopefully the drugs he is taking will help to prolong his life, but a full recovery looks doubtful.

My husband couldnt go anywhere without 2 carrier bags of medication. I to treat his illnesses the other bag carrying drugs to counteract the side effects of the first.

My thoughts are with you. Anything else you want to ask please do, it helps to share the awful experiences alcohol abuse creates xx

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Dear Laura009, thank you for your kind response. I am really so sorry that you lost your husband and how devastating it would have been. The thought of losing my husband terrifies me. I am fortunate in that I know he will never drink alcohol again and that he will be very regimented in taking his medication. He is on a huge amount of drugs too and the protein shakes. He is slowly getting used to the routine of it all. He was a heavy drinker until June this year. What you would call a 'functioning alcoholic'. He's learning a very harsh lesson and doing all he can to get through this. If it wasn't for the infections that he gets, he would be doing so well. It's like one step forward and two back. But I am really lucky that he is very strong minded and determined to get well. I'm so sorry for your loss, Laura. Take care and thank you so much. Cherie xxx

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Hi. I have just read Laura,s post like her I lost my husband on the 7th of Feb this year he was 57. Reading your story is like reliving that terrible time again I pray that your husband gets well enough to be put on the waiting list. The only advice I can give you is just take it day by day . X

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I'm so very sorry. My husband will be 57 in January. If it wasn't for the infections then he would be doing so well but it's just a setback each time. I am taking it day by day and just holding onto anything positive. His eyes are not as yellow as they were. I really am sorry, you must be finding it so difficult having gone through so much only to lose him at the end. I feel for you and thank you for replying to me . Cherie xx

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Hi. The doctors and nurses were great but nobody Sat me down and told me that he could die I only realized how serious it was when one nurse said to him you do realize if u survive this you can never drink again I was like what !!! Just keep asking the doctors how he,s doing sometimes they won't tell you unless you ask. I hope you have the help from your g p when your husband is at home. I didn't till the end and I just wish i had pushed for help earlier. Please keep in touch and if I can answer any question or you just want to talk to someone that understands what you are going through I will try and help. God bless. Xx

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Hi, I did try to get him to cut back on his drinking and have some alcohol free days. He wouldn't of course, until 'the man in the white coat' told him. He stopped that day! He hasn't touched a drop since and that was June 17th this year. I did visit my doctor to tell him my concerns before he gave up too. And I am going to make an appointment to talk to him again because I feel that I need to learn as much as I can so that I know what to do and what to look out for and what to do. So far I have managed but I feel I need to know more about how to help him. We have a really good GP and I know he will help us all he can. As for drinking again, he doesn't even want to drink ever again, he knows it's drink and die. Giving it up is a small price to pay for life. I'm lucky he is like that. Thank you and I will keep in touch and let you know how it all goes. Xx

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Hi, he's home now. He had six litres drained out. His blood tests are clear from infection and he had a few (blood infection, flu and chest) He's been pumped with lots of antibiotics, fluids, albumin. So now he's home and I'm living with the worry of another infection getting him again. I hope you are ok, I can't even imagine that you went through so much only to lose him. I just keep researching everything because the hospital don't tell us much. When we go to the next appointment at the liver specialist on 30th Jan then I will get the low down. I want to know why they haven't done a liver biopsy too. xx

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Hi, sorry forgot to say for the itching the nurses gave him hayfever tablets that eased the itch. X

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Fenafaxadine.

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We just been on your journey! Hang on in there. My hubby had his transplant on Sunday, like you I though nothing was ever going to happen, then the assessment appointment came. He was listed on 23rd nov and only waited 22 days for a new liver. Keep strong and look after yourself, I know how hard it is.

Agnes

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Oh my goodness that was quick. I'm very pleased to your husband, long may he continue to improve and enjoy life. It is something way down the line for us, I think. But, maybe next year if he gets referred and he meets the criteria then maybe he will have one too. It's the living in fear of infection that is hard, I'm always feeling his forehead if he so much as sneezes or yawns! Thank you and that's great news about your husband!! x

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Hi there

I just wanted to say that my husband also was a drip feed 'functioning alcoholic', and too bloody minded to cut down when it was suggested to him. I could guess that his liver was not functioning well due his bleeding gums, sleepiness etc. but unfortunately the GP was far too 'nice' and never spelt out how bad things were or scared him enough to do anything about it and he certainly wouldn't listen to anyone else! Anyway he ended up having a massive upper GI bleed whilst working abroad last June, and the consultant in hospital in France was very to the point and basically told him that he would be dead within a year if he didn't stop drinking. He has not drunk since and doesn't seem to be struggling with it all - I think cutting down on salt is causing him more grief! Just like your husband it was a no brainer. They are very lucky to be able to do this, as so many people just can't quit even if it kills them. I was actually quite surprised it wasn't a struggle after 25 years of drinking everyday, and he had never managed it before. It was as if something just clicked in his brain and it changed.

It has been 8 months now and he has been accepted for transplant by Kings as long as he does one more test here in Bristol, however I think the enormity of the operation has scared him, and as he is boarderline they say that he could go on improving for up to a year after quitting alcohol, so we are in limbo at the moment. I am not sure what I am saying here other than your situation resonates with me.

I do hope we get some warm weather soon and the bugs bugger off! x

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Interesting about you saying that the GP was too 'nice' as same happened virtually with us. At one point I said to my husband that our doctor might be very nice, but is he very good? I think the gp should have spotted the problem way earlier. I even went to him myself to tell him how worried I was about his drinking. Well, it wasn't picked up early enough and though my husband gave up alcohol and salt etc back in June, he died in January. Your husband is very, very fortunate and to be able to have a transplant. Giving up drinking is such a small price to pay for having a normal life. My husband had only just turned 57 and he would have done anything to have lived. We had been out celebrating his birthday on the Saturday and he died on the Monday. That quick. I hope all goes well and the transplant gives you both a brand new happier and healthier life. Good luck :-)

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I am so so sorry to hear your news and totally shocked at the suddenness of it all. Sending you my love xxx

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thank you so much. It was a terrible shock. He developed an infection that led to Peritonitis, Sepsis and that in turn led to multiple organ failure. I am beyond heartbroken, such a wonderful husband. xxx

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I am really sorry to read about your loss. It's so hard especially when it happened so quickly. Hold onto your wonderful memories & I hope each day gets a little easier x

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Thank you very much, I have my memories to treasure. Xx

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Get him to a Liver specialist ASAP. your doctor will need to refer you I think. DO NOT WAIT. I only found out I had Liver Cirrhosis after being examined for something else and its too late. I hope your husband gets seen soon.

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Hi Nictresla,

Please read her last post.

Cheers,

Brett

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