Morning all , its been a while since i been on here.Hows everyone coping?
Been so busy with meetings, and caring for hubby.
Hes got slightly worse than hes been, not able to eat enough to keep a sparrow alive, if he isnt in bed sleeping, he falls asleep all the time. His memory is bad and hes struggling to work out how to use basic things like his phone ,tv controls, etc..Hes in alot of pain with his lower stomach every day now. He did get to the hospital a while back and they told him he was constipated. So they discharged them, so hes been reluctant to go to the drs,Hes been sick the last 2 days ,His side where the liver is is swollen, hes depressed talked about topping himself,So we had a chat last night and hes agreed to see the dr today, so just waiting on a phone call from them.
Hope your all coping, finding that support that your getting. take care.
love and hugs,,
Written by
lyn3
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22 Replies
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Hi. So sorry to read your husband is so poorly. I really hope the doctor listens as it sounds like he needs a medical professional to take him (and you) seriously.
Thanx phil,, how you doing? Oh the dr was more than willing to see him, but hubby kicked off with me because i rang the drs (even though he said he wanted to go see the dr) so i lost my rag with him and told him im done caring anymore. He not only spoke to the dr rudely on the phone but he also refused to go into the surgery to be checked over,,,and he belittled every thing i said hubby has been like and how ill he is.So im done, he wants to see the dr he can ring himself. Ive had 6 years of battling all this with him and hours on hours sitting in the hospital, loads of sleepless nights.
Thanx trust, hes not seen the dr, he refused to..I cant do anymore...The saying you can take the horse to water but you cant make him drink.. Well hubby is that horse.
Massive well done on staying with this interminable and frustrating search for answers and much needed support (which you'll at least always find here)
Glancing over your previous posts your husband seems to have confirmed fatty liver with some possible liver enlargement. Cirrhosis was also mentioned but then not followed up on - in fact it was later brushed over. Also confirmed gastritis. Additionally COPD with a (previous?) collapsed lung. History of yellow/pale lose stool but also conversely constipation, both accompanied by lower abdominal pain. He's exhausted with possible severe confusion /disorientation. He's not receiving the necessary nutrition either. It's a lot. You've previously mentioned scans but I wonder if he's had an abdominal MRI or CT with contrast. Also not sure if he's had colonoscopy.
Your time on here has rightly led you to believe that his normal blood results don't necessarily mean no serious liver damage.
The biological puzzle here is difficult to unravel because there's so much suggested.
This could 'just be' a struggling fatty liver with some alcohol induced hepatitis - with for example, gastrointestinal inflammation or diverticular disease. There may also some malnutrition. I believe vitamin D was previously supplemented but not sure where his iorn and B vitamins were. Then if you add in dehydration with messed up electrolytes, alongside his poor lung function and YES he will be in a bad place. If you then add some understandable depression, we have have a shattered, sickly husband.
It will be helpful to list his confirmed tests so far when he sees his Dr and then request those areas not covered. For example, he has every right to expect fibrosis testing with his fatty liver diagnosis. Also were his bloods just liver enzymes with blood count or full liver panel with albumin and INR etc.
In the immediate future please don't underestimate the nutritional impact of his current situation and possible dehydration... it's a game changer. If you can see a dietician with a bespoke plan then that would be great.
No one other than his Dr should be suggesting an intervention like lactulose and so on - it could make things much worse without understanding what's really happening.
I've no answers of course but am one of so many sympathetic people on here.
Try (when hubby is asleep for example) to come up for air yourself and put your needs front and centre.
Finally, making contact with the BLT helpline again and getting to grips with the patient charter (and the next steps to push for) may be helpful and empowering in the face of all these mixed messages.
Hey chris,, how ya doing? Thank you so much for your reply..Yeah hes been through a lot, and has alot of health problems, yes hes had a colo,camera down but not one up, he told them he didnt want it done. Its been going on for years and he is getting worse. I had to go into see the dr myself this morning , so i had a chat with him about hubby (i appologised for the way he was with him) and he suggested that if he is still the same thurs to ring them back up and they will give him a home visit. He said he sounded very unwell on the phone and he noticed his speech is slurry which is also a concern but if he wont let them examine him then their hands are tied. I told the dr that i will tell him what the dr said (when im speaking to him that is, im not speaking to him at the moment or ill loose it with him) and if he says no he dont want a home visit then im not ringing the dr up...Im very close to walking out, because im at my wits end. Ill keep you up dated...
Hi Lyn. I know just how you feel.. it's been all about hubby for years and still is isn't it? But yes, what about you eh? Take that break you so desperately need. Do you have anyone you can visit for a while? Or book a hotel somewhere you'd like to visit? Go sightseeing, walking, have some time to yourself away from home to reflect and decide what it is YOU want, need & deserve.
I'm very well thanks Lyn. Still very busy but taking some time off from next weekend as hubby will be 60 on the 19th so family and Grandaughter ... 9 months old now already !!... are coming for a few days. Then the 2 of us are going away for another few days as l have some surprises ( nice ones) in store for him.Keep us posted won't you? Take care of yourself
Great to hear your well, love hearing good news.awe well happy birthday to your hubby.Hope you both have an amazing time away. wow wheres the time gone, i bet shes a cutie and spoilt.:). Cant wait to hear how it went .:).Yeah ill keep updates,, I have to say, you are all amazing on here, makes me feel like im human when i come on here..Thank you all..Your all like an extended family..:). xxxxx
Just checking in to see how you're doing and also if contact with the GP is still on for today... I think home visit was suggested if hubby won't go in?
Morning Chris.Im ok this morning thanx for checking in.I went out last night, written underneath of gravys answer, its mad but i feel refreshed this morning. Maybe i need to go out in the night once in a while to refresh my mind. So yesterday morning hubby got up, he didnt seem too bad apart pain wise, i said where you going all dressed and up so early, it was 8,15 am, the reason i asked him was because its not just the pain ans sickness he suffers with, he is also suffering with memory and gets confused alot. Hes remembered his phone number for years, hes had a few phones but always kept the same number, he cant remember the number anymore, he will say events have happened but they havent. he cant remember how to text or reply to one. Anyway the reason being is because he wanted to go to the drs. so rang them and he got down there. Even though hes as bad as what he is they wouldnt let me go in there with him because he wanted to go in on his own,(i didnt have to worry about what he said or didnt say to the dr because its all on his notes from what i told the dr the other day, and i told him everything.. She examined him and wants poo sample off him to check for blood and arranged for him to have a camera up, shes refering him to a dietian, now wether he sees her is another matter because he was saying he dont see the point. Shes not said about bloods being taken which is mad considering they usually do, he did ask for bloods to be done but she said lets do one step at a time , im more concerned about whats going on in your stomach.Like why not do an over all check while he was willing to be there? So just waiting on the package they are sending him, and once thats done wait on the results. Hope your doing ok..
Lyn..
Hi Lyn3
Is there anyone who can give you a break? I worked at a hospital for almost 20 years and I saw far too many people who were caring for a loved one being overcome by, stress, worry and dealing with every day matters.
Mentally we can drain to a point where every little thing becomes a battle. You sound as though you have reached that point but are still putting on a brave face. You need a break. I know some people who have felt guilty leaving a loved one to be cared for while they get away for a little while but, if you do not take care of yourself, you cannot take care of your husband.
Thank you gravy,,Oh your name just made my day, :). No there isnt anyone, his parents will ring him up now and again to ask how he is but they never ask how i am or if i need a break and they have him there. His friends have either died (from liver failure) or they are way to busy to call over..I did how ever go out last night with a friend, she invited me to a church event, they had singers, food ,comedian and magician. Was so nice to have that break and enjoy myself.
You have to recharge your batteries, I'm glad you managed to get an evening out. My mother in law spent a week in a respite care home so my father in law could rest. I believe they also suggested social services might be able to arrange carers for a period of time. Perhaps that is something you might look into, an evening out seems like a feast after a famine, but it would be better to have a longer break .
So the receptionist at the drs rang hubby yesterday, she said the dr has now decided she wants bloods done, dont understand why she couldnt have agreed when she had him there knowing how hard it is to get him there in the first place..Hes agreed to go but its not till a week today and if hes unwell or in alot of pain he will end up not going, so lets hope he feels well enough. Hes only ever feeling slightly better once in a blue moon. Went out last night to watch my grandson join rugby for the first time , he really enjoyed it , so proud of him, hes only 9.:).. Hope everyone else is doing well...love and hugs , and for those struggling, keep your chin up, you got this far, you are stronger and braver than you think..
Morning all , how is everyones weekend/week going? So up date on hubby, he managed to do his stool sample sent that off thurs, he managed to get to the drs fri to have bloods done and decided while he was out he wanted to go up the pub for a few and see his friends, (hes not seen in about a year), He had one pint in the one pub, (that took over an hour to drink)went to another pub because none of his friends were there, he got to a quarter of a pint and he had a few small sezuires, he refused to go to the hospital or home because he said he dont know when he will get out again, but he only managed a few more sips (so all he managed to drink was a quater of a pint) and he was sick, so we went back home, he could barely stay awake so he went to bed and hes been there since. Hes come down a couple of times since fri but gone straight back after having a cuppa. Even though hes as ill as he is i wouldnt be supprised if his samples and bloods come back normal, because the bloods have come back normal for years. I do feel sorry for him, hes only 53, got no life (and yes i know hes brought this on himself through drink ) but its an addiction. Spoke to a friend yesterday on the phone and shes why dont you go stay away for the weekend have a break, i said if anything should happen to him while im away ill never forgive myself, im not doing that to me and im most certainly not doing it to him, hes got no one else that is willing to give up thier time to come stay with him.. Besides i do get breaks. My sons birthday is thursday, we are going axe throwing, ha my ex is going what you think ? should i picture him on the board ha, just kidding. and fri its my daughters bd and we are all going for a meal, so looking forward to a few days..Thank you all so much for listening to me and taking the time to reply, means so much for me to be able to come to a group like this and off load and have the support. Your all gems.
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Anxious wait for Liver Biopsy
