Morning all, I hope everyone is doing ok, coping ok, if not heres loads of virtual hugs for anyone going through a tough time,(well i know we are all going through a tough time but some more than others.)
So update on hubby, sorry not been on here, been so busy.
Hes continuing to go down hill. Even when hes been in bed for days and gets up hes tired, he managed to get up the other morning, and go to the shop across the road, he came back and collapsed because he couldnt breath properly, hes got COPD, now on top of everything else.
So he finally managed to get to the drs for bloods to be done thurs this week.So will see what the results are then, i wouldnt be supprised if they come back normal, in fact im expecting it to be because of al the other times even though hes so ill as ive shared. He has said though which hes never said that if they do come back normal hes going to make an appointment to see the drs. He has every sign of cirrhosis, the only thing thats not happened is the varies (oh forgot what its called but its where you bleed)sorry and itchiness,Hes tired/sleeps most of the time, swollen belly,swollen legs,feet,numb toes, tint of yellow in his skin,stomach pains,bruising,trouble urinating ,confusion,HE, intolerence to alcohol,nausea,sickness sometimes, spider viens,libido,enlarged breasts, yellow poo, dark urine. So we will see when he gets the results.
One of the other things hes done which i wasnt sure why hes been doing it and i know he hadnt done it up until 6 months ago ,is when he has managed to go to the shop before and the other day was buy himself a bottle of whiskey and hide it in his bedroom,(yes we have separate bedrooms) before anyone says oh how do you know he hasnt i know because i decorated his bedroom for him about 6 months ago,and went through all the cupboards etc to sort out clothes that dont fit him and pulled everything out of the bedroom to decorate, and he couldnt hide anything under his bed because its a divan, anyway it came about because he said he couldnt find his passport (not sure why he wanted it) but thats what his mind is like, any way, i said im sure its in your room some where ill look for it later in here (his bedroom) and he bit my head off and said no you wont, i said fine and walked out.
He came in my bedroom and woke me up at 4 the next morning appologising for the way he was to me and told me the reason was he was hiding a whiskey bottle, i said but why, because i gave up having a go at you for drinking a long time ago because all it done was get me stressed and ill, so i just let you get on with it your a grown man,, he said i dont even know why myself, and kept appologising. No thats not why hes been sleeping so much and getting worse because hes been an alcoholic for over 40 years now . But what i think is happening is because of how his mind is ,its going back to when he was younger , when he used to hide booze in his room from his parents (he was 13 when he started drinking). So will update when his results come back.
Myself im doing ok, due to go for the vaccine next week. Going to see my daughter and grandsons today to give them easter eggs, oh my word ill be glad when easters over, ive lost count how many easter eggs i have had to replace because i eat them, oh yeah me and chocolate we are best buddies, ha ha. Suns been shining here, lovely and warm, after going to my daughters im coming back to do some decorating and maybe some gardening if i can be bothered (yeap i hate gardening but im greatful to have a garden), and tommorow is chillax day when i dont go shopping, i dont go out, i just do the basic house work, have my son coming over for lunch so that will be lovely to see him also.
Hope everyones weekend is good too.
Love and hugs to all who need them.
Lyn.
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lyn3
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Hello Lyn. If your hubby does have cirrhosis he really shouldn't be drinking any kind of alcohol not just what he is "alergic" to. It's all poison.
Hi laura, i know he shouldnt be drinking it wether hes got it or not but i cant stop him and im pretty sure he wouldnt listen anyway, its an addiction, i understand that now, i know what its like to have an addiction , everyone has an addiction in one way or another wether its drugs,drink,shopping,chocolate,cigs, spending money, gambling, wanting bigger better houses/cars, holidays, its all an addiction, any one of those addictions can destroy lives. I dont judge him nore anyone else who have a strong addiction. and thats one of the reasons i wont nag him, never try and stop him from drinking because all it does is cause me to be ill and im not willing to put myself through it,bsides he will always find a way to get it anyway.. He knows what drink does to him, he knows it can kill him , hes lost enough friends to it, but addiction is not easy to give up. I see and hear so many people judging others on their life styles, its frustrating. Yes i get it kills, yes i get it destroys families, yes i get it destroys friendships but so do many other things in life.Driving a car ,poluting the air for people like myself who are asthmatic destroys lungs, obestity in children because they are bought mcdonalds or burger king or any fast food company is dangerous for our kids,(i never allowed mine to have any of those when they were growing up but i never judged those who did)..I didnt share what i did about hubby because i want sympathy , i share whats going on with hubby because i first came on here to ask advice a few years ago and just like to update on him, Im sorry if i come over as being annoyed but sometimes when i come on here and give up dates some of the replies are upsetting and come over like im being treated like i dont know whats going on or a child. I would rather be told not to up date than have replies telling me what he should and shouldnt be doing..Take care.Lyn.
Hi lyn3 I understand exactly what you are saying. My husband still has a drink and I like you have come to the stage where I just let him. He doesnt drink nearly as much as he used to do (I know one drink is one too many). I love him to the moon and back but this disease will take him I know that but he had a major stroke quite a long time ago and cannot do anything he used to be able to do. His having to give up working affected him deeply. He has had TACE treatment for liver cancer which we knew was a risk and now his liver has decompensated. I am taking him to A & E tomorrow as his scrotum has swollen up like a football. Dont know whether this a build up of fluid or not hopefully they can sort that out. Keep strong and keep loving him. I am here for you if you want to talk to someone who is in the same mindset as you. XX
Hi feline..Awe sorry to hear about your husband, its hard isnt it? and yes its not for him you let him drink its for your own sanity, i totally get it.(carful on here saying things like that , next you will be asked how is he getting his drink ha ).Whats TACH treatment? Awe gosh i hope he is ok and they can help him, so worrying for you, let us know how he gets on.
Yeah you too thanx. Yeah appreciate the offer of talking, :). You too if you need to talk as well.
Morning lyn3 thank you for your lovely message. How are you and your hubby doing. I know what you mean about being careful what you say on here, that's why I don't post much. My hubby decided he did not want to go to the A & E I tried to change his mind but he was adamant. I know he must get fed up of all his various trips to hospital for various scans etc. I think he is tired of it all now and the TACE treatment not being successful as the last straw. TACE or trans arterial where a chemo embolisation to give it's full name is a dose of chemo is put directly into the tumour via surgery. We were obviously told of the risk but that was the only option. We now know hat time is running out . Anyway enough about us. Please let me know how you are. XX
Afternoon..Your welcome and you too. Im ok up and down as im sure thats how you feel so i know you understand. Hubbys not too good as always, he got up for an hour yesterday and couldnt stay up, he was so tired even though hes been in bed for a few days prior, just generally felt unwell, he was making noises as he usually does when hes about to have a sezuire, so he took his meds for that and went to bed, i asked him what was wrong, he said i dont feel right, aggitated , fuzzy headed. Checked on him now and again last night and before i went to bed, he was just sleeping, checked in on him this morning , hes in agony with his stomach, so he stayed in bed and hes sleeping now. Hopfully get the blood results this week, my sister said oh i hope they come back ok, i said sis dont get me wrong that would be nice but would rather they come back with some diagnosis and explaination as to why hes so ill / sleeping and in pain all the time,Oh dont feel bad about sharing how your husband and you are, my ears are always open to listen and my shoulders are big enough to cry on, the old saying a problem shared is a problem halved :).Its a shame about your hubby but i get what he means, and understand where he is coming from, as much as you and everyone else wants whats we think is best for our loved ones its them that has to go through the treatment,prodeing and poking,and like you said its not being as successful as the other lot, so yeah why not just try and enjoy maybe the time he has left letting him do what he feels comfortable and happy doing, as hard as it is for you to watch him going down hill etc, you will have memories of time shared together rather than having memories of the aweful times of back and forth the hospital.
Always here if you need to chat ok? even if you wanted to chat in pm..
Take care
Lyn..
Hi Lyn,
Good to hear from you. Hopefully your husband will be able to see/speak with his GP and fully inform them of all his symptoms and alcohol usage. It’s only then that they will be able to really investigate what’s happening.
If you would like a chat our nurse led helpline is open from Tuesday next week.
Well as long as he realises what he's doing to himself, his health and how it affects those around him that's all that matters. But no, not everyone has addiction problems, just lifestyle choices.
Take care.
Laura
This must be so hard for you.You are in my thoughts and prayers.Thinking of you both.
listen love....no one is entitled to judge you or your husband. certainly what I've found is folk r very quick to point the finger. they don't understand half the problems. there are reasons why folk do what they do. I do understand what your going through......i was ,like your husband two years ago.....its upsetting to say this...but I nearly lost my life just over two years ago....and things still aren't great now . I just wanted you to now ,not everyone is here to judge. chris
Hi Chris. Thank you so much for your kind words, i agree no one has the right to judge anyone, theres a saying , be careful when pointing a finger there are always 3 pointing back at you.
No one wakes up one morning and thinks oh i think ill become an addict today, no one. Its a gradual process, A dr once explained to me how someone like my hubby whos had a good up bringing, no drama in his life,plenty of friends, etc becomes an alcoholic,..He said teenagers experiment with drink, they do it for many reasons, then they reach their late teens/early 20s, they go out partying all the time, because its the done thing to do with your friends, then they hit late 20s early thirtys and they start to calm down on the drink ,only drinking weekends and then eventually they go into late 30s.40s.40s, and drink with meals or once a week or both, that is a normal adult life in drink , and an alcoholic does the same till he/she gets to late20s/early 30s and instead of drinking less and less an alcoholic stays on the same level they did as in their late teens and before they know it they are addicted without realising it. He said i have alot of loved ones of relatives that come in upset ,angry at their alcoholic loved ones and ask me for advice, and he said the best advice i always give is never point a finger at them because no one chooses to be an alcoholic, he was a very good dr unfortunatly he passed away young from a blood disorder..I get some are angry because they have been put through hell, lost marriages etc through drink but i am sick of seeing not just myself but others judged, spoken harshly to ,been rude to on here when what should be shown is love ,understanding and help wether its with information or a listening ear or a shoulder to cry on..I dont know you chris but im glad you are still around .:).
well love,we all just need some one to understand at times,and not judge. ..is your husband on ensure protein drinks?. they helped me a lot.....i had lost all my muscle ,although didn't have a lot before 😃.. please let us know how you're husbands bloods go. I'm waiting on a report from my consultant ,regarding bloods,ultrasound etc....it won't be good I'm sure. just go easy on those Easter eggs love😄😃. take care chris
Afternoon chris..How are you doing?No hes not on any drinks, he asked his dr for them and the dr told him he dont need them, they are for people who arent able to keep any food down at all. His drs are i hate to say it rubbish, he was told a couple of years ago its cirrhosis, then its not, hes told hes got lung cancer than told he doesnt, so not supprising they wont give him those drinks.
Thanx yeah soon as hes had them ill be sharing what the results are.
Oh when wil you know about your results? let us know when you get them....Ha at go easy on the eggs, i tried i really did but im sure they have legs because they kept jumping into my mouth, i tried to stop them but who was i to argue. ha ha. Glad its over now. But they still have the creme eggs in the shops. ha
hello lyn......i had blood results in the post this morning. we'll could be worse but could be better . my meld score has risen to 16,I had it below 10 before,and I don't know why,and I'm still getting periods of jaundice . seems to come and go . anyway my consultant ,whats me to have another ultrasound and more blood in 6 months. I hope you're well and your husband. Best wishes chris
Hey Chris. Good to hear from you. I dont understand the meld scores mean? im guessing 16 isnt good.So you happy its 6 months time? or would you rather it before then? Im 3rd day after my first vaccine, been feeling so ill, today felt bit better,went out shopping and i think i done too much, came home exausted , my whole mouth feels like its full of ulcers, i have a mass of cold sores on my lips (usually get ulcers and cold sores when im run down so not supprising )..Hubby was up and down stairs watching tv when i went out, he seemed to be ok, i came back to him looking and sounding aweful,hes been sick but he didnt want to go to bed so i set the recliner up for him and covered him with a blanket because he was freezing and felt so unwell and aching,, he slept on it for hour and half ,woke up and said im going to bed i feel so ill. So hes back in bed. so will be back and forth checking on him until i go to bed. Who ever said life is boring can come help me lol.
mornin duck. I hope u had a reasonable night ,regarding your husband. don't forget to take care of yourself as well though. the meld score was sort of explained to me when I was in hospital with varices and ascites. its a model for end stage liver disease ,it goes from 6 to 40,as I said I got mine down to 7 last year,but now up to 16.also have a slight hand tremor at times. so I will try and contact my gp tomorrow .hope your Sundays going well. Best wishes chris
Afternoon,, lol@duck...Feeling bit rough still but getting there, thanx for asking..Ah ok thanx, understand what it is now.Gosh that is up isnt it?Did you manage to get hold of your dr after? if so what they say?...My sunday was ok, tirin but got through it, its monday afternoon, just been relaxing today...Hubby got up earlier and went to bed after an hour, he couldnt stay awake and felt ill, but the good news is he agreed to have a phone call from the dr today, so i rang up explained im not happy about the blood results being normal and yet hes got all these symptoms , told the receptionsit all the details , litterly everything..and now waiting on a phone call from the dr,, the receptionist said it will be about 4 pm or before so within the next 45 mins, hope its suggested to get him down to the surgery so the dr can examine him, if so i will be making sure i go into the drs with him.Have questions written down..Il let you know.
well the duck comes from where I'm from😃. I was bought up on my parents and nans,even my great Nan's saying "duck"... well done for having a list ready,otherwise you forget half of what you wanna say. sorry your husband isn't doin to good at the moment . hopefully the docs can get to see him,but he has to want to do it,the time has to be right for him. I can understand your husbands side of things as well as from your side. myself,well it took me 17 goes just to get through to the gp,always the same on a Monday morning. they don't have any telephone consultations until next Wednesday!!. so instead I've spoken to the liver nurses on the b l trust......they are so really helpful ,understanding,caring etc. anyway hope the docs goes OK.....take care. chris. PS,after my first jab,I felt just so achy ,lasted a couple of days
Hi Chris, Ah ok refering duck.Ah thats a shame you couldnt get through but you managed to talk to the liver nurse. You still going to ring on wednesday as well?
So update..Hubby came down about half 3 and the dr rang at 4. She wanted to talk to him first, so she read out everything one at a time that i had listed was wrong with him , he agreed on some and disagreed on the others, i tried to keep calm, she continued to ask him questions about his intake, his smoking,drinking,eating etc, i said when you finished talking to her i would like a word. So after 20 mins talking to to the dr he handed me the phone, so i put her right on everything he said disagreed on. I told her if i was to put the hours that he is awake for into days it would only be 2 days out of 7. i said when he does get up he struggles to stay awake, he is in pain with his stomach and genually feels unwell, he looks grey sometimes. I said he has all the symptoms of cirrhosis, apart from itchy skin and jaundice but sometimes hes looked yellow. She said his bloods arent showing signs of cirrhosis, i said years ago the dr told me he had decompensated liver, i said when i shared with the dr back last year how concerned i was the dr asked me what it thought was wrong with him.. i said i think hes got cirrhosis and he agreed with me, i then said about it saying on the list cirrhosis, so why are you now saying he hasnt? why are some drs saying he has and some he hasnt,. so she said let me look at his last scan which was beginning of last year, she said its showing fatty liver ,i said but why is he so ill all the time? she said sometimes when there is fatty liver and it flares up it can show all the signs of cirrhosis but its not.I was so tempted to say so your telling me that those who have been told they have cirrhosis could just possibly be fatty liver inflamed , but thought better not...So she said how long has hubby got worse, i said the last 8/9 months, she said well i think it might be good if he came down and got checked over,because i cant see how bad he is from what your telling me and i could check him better, but i cant force him would he be wiling to come down, so i said to him ,the dr wants to know will you be willing to go in to be checked, he took 5 mins to reposnd, i said thats how his brain is, he couldnt process that simple question.So hes got an appointment at 2,20 tommorow afternoon with her.
I got off the phone he said why were you saying what you did? i said because your saying this isnt happening when it clearly is. he said yeah but not that often, i said ok look at it this at my point of view, i see all this happening, i take care of you, i have watched you go down hill, i have had to see things happening and your either rubbishing whats happening to you ,eg you tell the dr you struggle to go for a wee and then will say but i think its because im not drinking enough fluid. he told her that he stays up all night watching tv , hes done that now and again but he gave her the impression its all the time. hers first thought is going to be oh so thats why your sleeping alot. I said your dr needs to know EVERYTHING , and i am making sure they do know EVERYTHING.
He went to bed just after i got off the phone because he feels so unwell. So going to see what happens tommorow now. If he decides he doesnt want to go to the appointment then my answer will be , i dont want to hear anymore about how your feeling.Ive done my best, i cant do anymore if you arent willing to help yourself, but hopfully it wont come to that and he will get seen.
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So annoyed.
