Hi all, my friend and ex partner was diagnosed with AHLD and liver cirrhosis about 4 months ago. He has been very poorly with ascities his legs and stomach swelled up hugely but otherwise he is skin and bone. He has not had a drink since the ascities began and has been trying to eat as healthy a diet as possible and cut out salt. The ascities seemed to take ages to start to go and he had one drain of about 2litres.
Yesterday we saw the consultant who was really pleased with his progress. He has lost over 2 stone in fluid and looking and feeling much better. We were very suprised that the consultant said he didn't need to see him again! Just keep on with the water tablets and keep up the healthy lifestyle. They are doing another ultrasound and regular blood tests because of the water tablets but it seems as if he has been very lucky and caught this in time for the liver to regenerate.
I feel quite emotional as 4 months ago I thought he was going to die.
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Usual protocol is US and labs every six months. Obviously he must keep doing what he is doing (abstinence, exercise healthy diet, low in salt and sugar).
He must neve forget that it's a chronic condition. It is not something like the flu. It can be controlled, but it is unlikely to go away.
Good part is that as alcohol is the cause, the cause can be eliminated in order to avoid further harm.
Thank you P. I will be doing what I can to keep an eye on him and help him keep up the healthy lifestyle. I guess they will send him for another US in 6 months then. When I asked how long he would need to continue the water tablets they said about 6 months. I just hope the GP is going to monitor him if he is no longer under the consultant. He still has a lot of fluid to lose and also has a hernia on his belly button. I will be staying on this forum its been a brilliant help and support
The hernia will probably not be touched unless it causes problems. Problem would be if some intestine gets strangled in the mess inside, I believe. That is an emergency. From what I understand they do not want to touch the hernia until the coagulation has become fairly normal, again (labs PT or INR).
The water tablets might be for six months or longer. Depends on the fluid build up. As diuretics are hard on the kidneys, it would be great if the doctor, with a diet poor in salt combined with exercise, could reduce the dosage slowly.
Be watchful. With alcohol and salt the fluid would probably return in no time.
Thank you. He has to have monthly blood tests to keep a check on kidney function so can ask about reducing water tablets in time when more fluid has gone. The consultant asked if he wanted anything doing about the hernia but he said he would rather wait until the fluid has gone. I think he believes it will just go but in any case its not painful or anything so consultant seemed happy to leave it. Can you tell me what PT and INR are? AS far as I understand it the blood test is only for renal funtion? I will be doing my best to help him stick to the healthy diet and start to exercise. He has not been able to do much as legs have been very swollen and he has COPD as well, but a new inhaler has really helped and fluid is greatly reduced on legs now.
My daughter has cirrhosis of the liver and since she has been diagnosed she has been taking water pills but the water buildup is very heavy and into her legs like your friend. She also has very bad asthma and uses an inhaler. Your comments about how his Cirrhosis has gotten better gives me a lot of hope for my daughter. I am going to insist that her doctor sets out A diet and remove some of the water so she can walk more. Can you tell me what kind of inhaler he changed to that helped him. I really appreciate hearing from people like you that give others like me hope. Thank you and God bless.
Hi Lee, I'm glad to help! We were really frustrated with the water pills not working for a while, but he was on too low a dose, is now on 200mg Spiro. The big thing that seemed to make a difference was totally cutting out the salt as advised by people on here. The other thing which we think has really helped is taking a milk thistle supplement. I will ask him about the inhaler but I'm pretty sure it was not suitable for asthma suffers. Good luck to you guys I really hope you see some improvement soon.
Hi Lee the inhaler is Aclidinium bromide, he takes it in the morning as well as his regular inhaler. His breathing is loads better. It says check with your doctor if you have asthma but not that you can't have it so may be worth looking into x
PT is something called prothrombin time, if I recall well. It is a value which indicates how fast your blood clogs. INR is international normalized ratio, it measures the same blood clogging, but is expressed in a way that when you are travelling and the lab at a different place uses a different method for measuring you can compare the results with the labs at your hometown.
If INR is high (and on top of that platelets are low), surgery becomes risky. There have been chaps that bled to death at the dentist's. Or had a two hours' nosebleed. With liver disease clogging is usually substandard as the liver produces the clogging factors.
Ah thank you for explaining that, it has never been mentioned to us! I remember my friend asking me about it as he cut himself shaving and took ages and ages to stop bleeding! Very useful to know this now.
Not sure if your friend is given a sheet with his labs. Check for PT, INR and platelets. If your friend has bleeding issues, these values are probably out of range. Does he has nosebleeds easily?
With liver disease he must avoid aspirin and NSAID precisely for the bleeding issues they can cause. Remember they give aspirin as a blood thinner? With liver disease the blood is thin, alright. Don't want it thinner.
Hi Porphy we never receive any sheets or information after blood tests, we didn't know about the clotting issues until you told us! He doesn't have nosebleeds, and he seems to think last time he cut his face it stopped bleeding quicker, but hopefully there is still some improvement. We were given the impression that the blood tests he is to have ongoing are only to check renal function due to the water tablets. We were never told about the asprin or the NDAIDs. Is ibuprofen a ndaid? He was talking that before but I persuaded him not to. His pain levels seem a lot better now the fluid is going. When we go for the blood test I will ask about the other tests
Ibuprofen can cause stomach bleeding, I was told. Only pain med allowed is paracetamol up to 2 gr/day according to my consultant. Personally, I profoundly dislike paracetamol, though.
Thank you, I heard that too. But the doctor gave him codine...!! Luckily he is feeling better and managing without pain meds now. I agree with you about paracetamol.
Codeine is an effective pain medication. It should given only cautiously, if the patient is suffering from the kind of confusion that is called hepatic encephalopathy, though. It can trigger bouts of it, I have read. Not sure if this is because opiates constipate, thus causing the toxins to stay for longer in the intestines. As a diseased liver will not clean those toxines effectively, they might travel in the blood to the brain.
I googled it and got non steroid so I knew what you meant. Yes the codeine did constipate him. He was getting a lot of pain in his shoulder and neck but this seems loads better now, maybe with the loss of fluid as it must have affected his posture. I did worry he was showing very small signs of hepatic encephalopathy but have not noticed anything recently he seems much sharper and happier mentally.
Not to throw a spanner in the works but I would be very, very unhappy about your friend being discharged from the consultant.
The symptoms he presented with were symptoms of very advanced cirrhosis and even though he is doing a lot better at present he is not cured of this condition.
He's probably recovered/recovering from the alcohol hepatitis but he won't have recovered from cirrhosis and there are protocols for managing cirrhosis patients as it is generally seen as a progressive condition and the side effects of having cirrhosis are what needs follow up.
It would be near on impossible for someone to reverse from cirrhosis. Yes, the liver can become compensated after being decompensated but it can also 'go off again' and requires careful monitoring. My hubby has cirrhosis due to burned out auto-immune hepatitis and in the grand scheme of things is doing amazingly well - no current portal hypertension, all varices eradicated, no ascites, no oedema, no jaundice and yet he is still on the watch and wait under two hospital consultants (one local gastro, one at transplant hospital). Annual endoscopies, 6 monthly ultrasounds, 3 monthly blood test and consultations. Having already been listed for transplant once and delisted after 10 months due to 'improvement in bloods' we've still been told it's when he'll need a transplant not if he'll need one.
I'd keep a very close eye on things and any changes or deterioration your friend needs to be back under a consultant .... a GP is insufficient .... ours is pure garbage and couldn't even properly palpate hubbies tummy to check for ascites and prescribed inappropriate medication for hubby when he had oral thrush - transplant unit went ballistic when they saw what he'd prescribed.
Sorry to a bit doomy and gloomy on your upbeat post but being discharged from liver doctor is not a good situation.
Wishing you both all the very best going forward, Katie x
Thank you Kate I agree with what you are saying , I was concerned about the discharge from the consultant even though pleased he's doing so well I would feel much happier if he was having regular consultations. He still has a large amount of fluid to lose and is skin and bone otherwise. He is having an ultrasound but we have not been told if these will be regular. I know what you mean about the GP's the first one we saw was very concerned but gave him only a really low dose of water tablet and was baffled by his pain, suggesting gall stones. I will keep a very close eye on him and be whisking him off to the docs for re referral at any sign of deterioration. Transplant has never been mentioned to us, and in fact I had to ask the consultant for an actual diognosis which was when he said cirrhosis.
I am surprised he has been discharged I was up and down like a yoyo and he can't just let him go and leave him on water tablets I was constantly having blood's done as they can cause damage to the kidneys. personally if I was you I would be calling them up and finding out exactly why he was discharged?? And milk thistle is not proven to do any good to an already damaged liver you are supposed to inform consultants of herbal remedies your taking as some do more damage when liver is already struggling
Hi Jojo he is having regular bloods because of the water tablets but I do agree it is a worry that he is not under the consultant any more. I do supsect that were the NHS not struggling like it is he would not have been discharged. I think it may be a good idea for me to contact them and see if I can get a clearer picture.
I am just worried about his state of mind I don't want to throw cold water on things as he is feeling much more positive than I have seen him for months. Same with the Milk thistle he really believes it is helping massively but I will mention it next time we do get to see the doctor.
Hiya I've taken Milk thistle loads of times historically as advised by my acupuncturist but I haven't taken it this time as the consultants said no.
My acupuncturist is no fool as she used to be a surgeon but I'm not seeing her now and at the times I took it I hadn't had Hepatitis. They also said no to Valerian (they had to google it) which I wanted to take as I couldn't sleep in hospital. I think we do think that because things are from a health food shop they're all ok to take when some things actually aren't depending on diagnosis.
I was having blood's done once a week on water tablets and I wasn't even on as much as him. I ended up in hospital about 5 times with suspected kidney failure but luckily recovered after spending time on HDU. He can still have hope it just seems really soon to be discharging him until he is stable and off the water tablets completely, once he has no ascites that's when you will know the liver is repairing x
Thank you Jojo I totally agree with you, that is also worrying I hadn't realised the risk to the kidneys was so high. I am wondering if I should try and contact the consultant to get some clarification x
Interesting reading everyone's posts. It is greatly to have some positive news.
However, years of caring for others and then having my own health problems has helped make me a cynic. I think it might be very useful for you both to go to his G.P. and find out why he was discharged and what is now/ still actually not working as well as it should for him. When you get that information you can then decide what you need to do.
Having said that it is important to celebrate any good news. Splash out and have some non alcoholic drink. Mine is decaffeinated tea. You both need to enjoy the pleasure of what has been achieved. It makes it much easier to keep working at it. Just don't get complacent.
Thank you G, I agree as I said in the above post I am a little concerned that they have discharged him simply to free up the work load. I am going to keep a very close eye on him and hopefully will get to speak to the doctor after the US. I don't underestimate the power of positive thinking and so I am wary to voice too much concern to my friend as he is feeling really positive at the moment, and yes you are so right we should celebrate the positives! Thank you x
I hope things keep improving for your friend but as the others have said try and find out why he was discharged. It is hard but we seem to have to shout to be heard especially when it's not in our nature!! Please take care. Lots of love Lynne xxxx
Thank you Lynne. I do agree with everyone. The problem is I can't discuss my friend with the consultant without his permission and he is not keen to push this, he just wants to see what happens. We are not sure whether he will get an appointment with the GP after the US, I'm guessing we should and then could ask for more information as she will have had a report from the consultant. I can only do as much as my friend is happy for me to do, and so I can't be too pushy. I am worried that he has not had blood tests for about 6 weeks but he does not want to book them for a couple of weeks when he goes for his flu jab. I think he gets a bit overwhelmed with it all and wants to take a step back. I can only keep a really close eye on him in the meantime x
You are a true and valued friend to your friend. I know it's hard when you are on the other side of the coin and can only do what your friend wishes, just be there for your friend as I know you will be. Sending lots of hugs to you and your friend xxxx
That is the hard part of caring for someone, when you want to help and know you need information and they may not be ready to ask or hear the information.
Can only suggest just being there is important. The other thing that can help is perhaps suggesting you both do healthier lifestyle changes with the attitude of not knowing all the details but knowing it can't do any harm?
Being able to go with them to appointments is helpful. If you can get your friend to give you written permission to ask questions at any appointment s it would help, because your friend may have questions but find it hard to take in what is being said. If they agree you can always have some prepared questions because knowing what you can do to improve things is important. If you both go down the healthier changes approach your friend will be showing they are doing what they can to look after themselves regardless of diagnosis.
Over did it this week so a bit tired today. Spent most of the day in bed. Getting my diet under control is taking time but much of the time my hubby sticks to it with me, which helps.
Still not sure what to make of my last ultrasound. Still find out what the specialist says in February. I'm aiming to get my cholesterol checked again end of October to see if it drops ant more. So far gone from 10.7 to 9.4 I know they are too high but down is better than up.
February seems a long time to wait to see him. Have you got a liver nurse who could email the consultant to see if he will bring it forward for you. Xxxx
February does seem a long time! I hope you can get that brought forward. As I said I contacted my friends doctor as I thought the length of time he had to wait to see the consultant was far too long the doctor agreed with me and got him in the same day we saw her. Hope things go well for you glad you got hubby helping with the diet xx
Thank you G, I agree with you totally. I am focused on helping him with diet exercise to have a healthier lifestyle. I have a pretty healthy lifestyle but do have some issues with eating so helping him with his diet is helping me and also I think it feels better for him that its something we can work on together, not just something he has to do. I feel sure that one of the reasons he is doing so well is that he has really taken on board the lifestyle changes needed. He is happy for me to go to appointments with him and ask questions which I do, so that does help too. I do as much research as I can so keeping a close eye on how he is doing this is the best I can do unless he wants me to do more at this stage. If I feel I need to be more pushy I will, I did contact his doctor to get the consultant appointment pushed forward which he was happy about and that helped a lot as they were just leaving him for about 6 weeks with no proper diagnosis or medication x
Thank you for your concern, I found it very warming.
I have the diagnosis. Nafld and cirrhosis. I know the liver is still functioning so I know the main thing I need to do is healthier living.
I also have a spinal cord injury (incomplete) which affects internal organs functioning below the injury. Mine was below the heart but above the liver. It may well have some affect on my liver, which I was having problems with prior to the injury with poor cholesterol levels and not getting on with statins. I had had a compression in my spine which I was unfortunate enough to have become a spinal cord injury (incomplete). I say incomplete because it damaged the cords not severed them. I can walk a little but not a lot.
Other than regular blood tests to check liver readings which my g.p. does, I don't think the consultant can do much for me except keep an eye on things for now. He has taken a range of tests to check for any nasty things. The fibroscan showed the liver as having enough elasticity problems to indicate cirrhosis. But nothing interesting in the blood.
He then arranged more blood tests and another ultrasound. I get those results in February.
I had my annual spinal check up and ignoring the liver, bowel and bladder workings are doing ok. I'm on blood pressure medication which is doing ok. My heart seems to be coping at the moment, although with everything it is dealing with it works on the higher end of normal. Unless something really interesting came up in my latest blood tests that needs urgent action, I won't expect to be called in earlier.
The main work to be done to help my liver has to be by me. The consultant suggested the pain management clinic for my spinal cord injury but my links to the spinal specialists and my g.p. deal with that.
Honestly, if I genuinely thought it would help I would ask for my appointment to come forward, so would my g.p., but at the moment I am at the monitoring and losing weight stage and exercising as much as I am able.
The liver, spinal cord injury, high blood pressure and my age do affect how tired I get. I keep ignoring my body saying rest when I am doing something I enjoy doing. My brain still thinks I can do the same as I did in my 20's and 30's when I was fit and running around after children, walking miles, working and/or volunteering and campaigning for people's rights. Result nowadays, I need a couple of lazy mornings a week to really rest, and if I ignore this, my body really complains and I need longer. That happened this week.
The good news is that I am finally getting better quality sleep at night, more frequently than I have for decades. I know that this will also help my health.
Hi G, sounds like you have a lot to deal with but you seem to have a really good outlook and positive approach. It is hard when your body limits what you can do but sounds like you are in tune with it which is really important in knowing how far you can push yourself. I think is is similar for my friend in that the most important thing he can do is take the best care of himself he can and I will do what I can to help with that. I hope you continue to do well, thoughts with you xx
Thanks for the kind thoughts and all the best for you and your friend. It is a nightmare worrying about what is wrong, hoping you are not being missed by professionals and looking after yourself.
I've got to the point where I am recognising I have enough information at this stage to know the main work needs to come from me.
People on this site have encouraged me to really look at the NHS website and this one to find out what is healthy then adapt to what I'm able to do.
Thanks G, I have found this group so helpful. I will look at the NHS site too. I think there is an online course on liver care which may be helpful too. I learned my lesson a long time ago not to just listen to the professionals. Most of them are very good but they are not gods, they get things wrong and miss things. Most important I think to follow your instincts. Take care x
I'm in the same position as you. This time last year I thought I'd be planning a funeral, but my husband gave up the drink, he only drank beer but large quantities of It!, and with changes to his eating habits,he has been discharged from the hospital. I know he's not cured but this is where my confusion comes in. How can someone diagnosed with end stage liver diseasewith a decompensated liver be discharged from hospital without further checks etc? Did your doctor give you any advice for the future ? My husband has been taken off his water pills too.
Thats great news that your husband has managed to make those changes, but yes its confusing. We went to see the GP to chase up scans which the hospital said he should have, and these are clear. The doctor has kept him on the water tablets so far, and he has regular blood tests because of that. But we had to go in and say, this is a bit vague and the GP agreed. So I think the GP is keeping an eye on things but it really seems to be up to us to push for any check ups. I think it is the lack of resources myself. Luckily my friend is doing really well, I guess we just monitor ourselves and get in touch with the GP if we have any worries. I would speak to your doctor and ask for clarification. Really hope things continue well though. My friend should be coming off water tablets at some point but we are waiting for doctor to advise this although the acities has pretty much gone x
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