I wonder if you can help. As previously posted my partner has decompensated cirrhosis, portal hypertension, enlarged spleen and has now developed ascites. He's been laid up for about 8 weeks with no improvement. He can't sit up to eat and lays in bed all the time. He can make it to the toilet. He is short of breath all the time and coughs a lot. He is malnourished and has lost lots of weight. I'd say about 2 stone in the last couple of months. He doesn't have much appetite but does eat a bit during the day, mainly crumpets in the morning and soup later. He occasionally eats a small amount of food as an evening meal. His arms and legs have gone very thin and his shoulders are bony. He is on spironolactone for the ascites, along with vitamin b, folic acid and Thiamine. He has a hospital appointment on 6th. his first since the ascites developed and his release from hospital.
What questions should we ask at the appointment? I've noticed lots of mention of scores and readings, bilirubin, ggt etc but don't know what these are. He thinks he is dying. He looks very poorly.
Should we prepare for the worst? I've obviously told him he'll get through it and be okay if he doesn't drink again.
His doctor said it could take 18 months to see an improvement. This terrifies him as he's in such pain and discomfort.
Good morning. You certainlyboth have a lot to cope with. I am pleased to know that your husband has an appointment coming up soon - his liver is obviously really struggling at the moment.
If you haven't already had a look at the Patient Charter - what to expect from your care when you have liver disease - it may help you to have a look at this. Amongst other things you will see that referral to a dietician is recommended - malnutrition is a common feature of decompensated cirrhosis so it is really important that he has advice about his diet.
At the end there are suggested questions to ask your medical team regarding diagnosis, management, prognosis....
(this one explains what some of the tests mean. 'Scores' are another way for doctors to work out how well the liver is working - you may hear doctors use the terms MELD, UKELD, Childs-Pugh - if they do, it is really important that you ask them to explain what they mean.)
This gives general dietary information - as I mentioned, a dietician's input is vital in order to personalise the advice to his particular situation.
I assume he is under the care of a liver specialist (hepatologist)?
Our Helpline is open again on Monday so if you would like to speak to one of our liver specialist nurses regarding the forthcoming apointment please give us a call:
0800 652 7330 Mon - Fri 10:00 - 15:00
regards
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Thank you for your response. He saw a dietician before he left hospital. Low salt, lots of protein and carbs and eat small amounts at regular intervals. His appetite is greatly reduced and he is a fussy eater, so although the doctor has been pleased with improvements to his sodium levels, I'm still really concerned about him. He looks as though he's wasting away. I have asked his MELD score a couple of times but they don't answer me. I don't know what the ggt refers to or how it's assessed. His appointment isn't until 4.50pm so I'm assuming it's a consultation and not for tests. I think we need to know what his prognosis is if he does stop drinking. They said a couple of months if he carried on as he was...It's terrible for him and hard for me.
I'd value advice from anyone who has experienced this too. The trust are a fabulous source of help but of course no one wants to say the worst ways stuff.
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If you able to call us on the helpline on Monday we it might help to go through your concerns and queries person to person. No one can tell exactly what anyones prognosis will be but it is important to at least have some idea so that you can plan for the worst but definitely hope for the best.
regards
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Thanks. I'll try to call Monday. I lost my mum to lung cancer yesterday so am travelling to hers to help with arrangements and things. Pretty rough end to 2020. Best wishes and thanks again, K
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Oh gosh, I am so sorry to hear this, what a terrible time you are having. Such a huge emotional and physical toll. I hope you have some good support for yourself.
regards
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Thank you. Its been a tough couple of months.I'm curious why no one else is responding to my post. Are things sounding so bad noone wants to chip in or am I approaching it wrong? Sorry, just feeling a bit insecure. Particularly following my mum's last few weeks. 😞
You are probably not getting many replies because it's New Year and not many of us are about today plus the Trust admin have provided a great answer which we can't add much more to.One thing I would ask about is getting your hubby prescribed some supplement drinks to support his calorie and protein intake in light of him not eating well. My hubby had to go on a high carb and high protein diet plan (little and often) but was also prescribed Ensure supplements.
Thanks for the reply Katie, I appreciate the trust have provided some great advice and I've checked out the resources too. Other posts had had replies so I was not sure.I asked the doctor about Fortisip or similar but he told me he couldn't prescribe as it might not be good for him and could even cause death! I'm sure you can understand my concern and frustration.
It was the dietician who first prescribed hubby his ensure - he was on 4 a day at one point but successfully regained weight and muscle and eventually came off them.
Hi-- you are not alone, I am sure many, many people on the site are wishing they could give you hugs and support. I know I find everyone very supportive when I have worries. XX Best wishes to you and yours.
There's nothing l can add to what has been said already. So sorry to read about you losing your Mum and the struggles with your husband. I know how hard it is. Be sure to take good care of yourself amongst all the challenges you are facing, even take a few moments each day away from it all to allow yourself to breathe.All the best to you.
Thanks Laura. I have too much time on my hands at the moment, particularly with lockdown again. We have our own business which is affected by covid19 like so many others, but the least of my immediate worries. Best wishes to you x
I am so sorry that you have all this to cope with... Please try to care for yourself in the midst of it all, make sure you can rest, eat properly and l hope you have support from your family and your friends. This forum has been very supportive to me, just knowing there are people out there who know what you and your husband are going through. I have no answers but just want to say that you cherish the days you have with your husband, hope for the best of course but tell him you love him and how much he means to you... My husband died suddenly from internal bleeding due to liver disease and though he was growing more and more poorly, it was an awful shock. I am definitely not saying that this will happen to your husband, l just want to explain how important it feels now that l should have said those big things to him... I hope he gets stronger and you can eventually look back on this time with him. My heart goes out to you, sending you love and light xxxxxx.
Your partner sounds similar to how I was when i was diagnosed and hospitalised back in november 2017.
I'm not sure how old your partner is but i am 49, i became very ill in 2017, i collapsed at home and was taken to hospital where i spent 6 weeks and lost around 6 stone (i was 17 when i went in and 11 when came out).
I was decomponsated had acities, continuous nose bleeds and could not eat a thing, walk far etc.
The one thing i would keep at the front of your mind is that its a very long journey and don't expect miracles early on.
I came out of hospital in jan 2018 and went weeks of basically throwing up everthing i ate. What i did in the end was cook 2 meals, one id throw up then the next would stay down, gradually i put weight back on, now 14st 10 and i need to lose weight rather than gain it
Muscle loss and strength was another thing, a 100 yd walk would knock me off my feet for a day. As with food it was a gradual thing, 100yd one day, 200 the next and so on, until a mile or 10 is no issue. I joined a gym after a few months and worked out every day, to look at me now you would assume i was a normal fit and healthy man, most of the muscle has returned (speak to your Dr and find out if there are any gyms in your area he can "prescribe" for you. I live in Cheshire and had 3 months free at a local leisure centre)
I had many bouts of depression / panic / worry about the future, dying and that id done it to myself and what would people think etc. It took me all on all about 18 months to get back to anywhere near normal, and now, apart from the odd complentative day im doing ok. Excelling at work (they stuck with me through the bad times which helped so much) and have a zest for life. I do not want or think about having another drink. To feel as bad as i did just to have a few pints is so not worth it. I would rather have a cup of tea and a slice of cake tbh.
I have scans, cameras down my throat and bloods every 6 months to keep on top of me, they are a constant reminder but its good to know im i have a regular mot so they can catch anything early.
If you have ANY questions at all, no matter how daft you may think they are please ask. Try not to google things as it will drive you round the bend and worry you no end.
One last thing, i am and have been for over 2 years componsated. So just because your partner is currently decomponsated doesn't mean that cannot change, things will get better as long as he avoids any alcohol
Thanks Chris! It sounds as though you have been on an incredible journey to recovery. Well done. It does give me some hope and encouragement. Take good care, K
Things will get better, just be ready for the bumps in the road on the way, Like i said, im happy to help where i can and if your partner ever wants to talk to someone who's been / is going through the same tell him to drop me message
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