So first of all a list of every thing wrong with hubby.
Swollen belly,man boobs(dont know the name of it).swollen legs,feet,stomach pain, feeling very unwell most of the week,sleeping alot, confusion, memory loss, small amount of spider veins,most of the time pale stools,not able to eat much always feels full on a small amount of food and thats when he is able to eat.
And yet yesterday his bloods for everything (apart from diabetes because they were the only bloods they never asked for because he didnt have any symptoms of it,)came back normal. So according to the blood results hubby is healthy. I am so confused, I dont get it.
So now hes believed there is nothing wrong with him its just life and hes convinced he dont need to see a dr. Hey ho, Happy days then.
Had the vaccine the day before yesterday and i was so ill yesterday, feeling slightly better today.
Anyway thought i would give an update on hubby.
Take care all
Lyn.
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lyn3
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Hi LynI'm so so sorry your hubby feels so ill. You must feel like banging your head against a wall when his bloods come back normal. Has your hubby had a fibroscan?
I remember about 18 months ago my consultant referred me for a fibroscan. I think this was to shut me up as my bloods were ok. Anyway, roughly 14 months ago I had my fibroscan and was diagnosed with compensated cirrhosis ( nafld in May 2016 caused by meds from my drs over the years, Nash diagnosed in November 2016 after a biopsy) I have capsule pain and know of many others who do as well. Plus all other pain 24/7 as I have many long-term conditions. I am the other extreme to your hubby as u have an hour or less sleep per night due to pain. I only sleep longer when I'm exhausted and then wake up in agony
Pm me anytime of day or night
All my love Lynne xxxx ❤️🤗💜 o
Hi Lyn3
If you would like to have a chat about this, our nurse led helpline is open today until 3pm on 0800 652 7330
Where you in with the doctor when he was told all bloods are ok are is this what he has told you the bloods are ok my best friend who passed away through liver disease drink was the cause always told me his bloods where ok but he never let his partner in with him to hear so she only took what he was telling her as truth to me which was nonsense because I have early cirrhosis when I was drinking my liver function test where sky high between 700 to 900 I've had 3 drinks in 9 months my LFT is 76 but hopefully your husband gets better soon Godbless
Hi Tommy thank you for your reply, sorry to hear about your freind and yourself .I was there when he rang them and it was on loud speaker so i could hear what they said, if the drs are open and he had an appointment i always go in with him because his mind is bad, and so with the phone its always on loud speaker...His bloods are always coming back normal and hes been this ill for years but hes been going down hill the last year. With every part of his body.hope your ok. Take care.
Hopefully you are now feeling better after your Covid jab. I had a couple of days with a slight fever but it all passed and I now feel fine.
So sorry to hear about your husband - that’s a lot to cope with especially if the bloods didn’t show anything. Man boobs are called Gynaecomastia and a common problem when you have liver issues. It is also caused by a number of drugs to treat fluid retention.
I assume he is being seen by a specialist at your local hospital rather than your GP. If not then you ought to ask for a referral to hepatology. They will be able arrange things like the Fibroscan and if you get the chance to ask get an MRI - this is the gold standard for liver diagnostics and will show what if anything is amiss.
As you say he has confusion then you should insist if you attend all his appointments with him so that you both understand what is going on and able to ask your own questions which may not occur to him or he may not understand the answers if he has confusion.
From what you say he definitely needs medial attention. Also, if he has confusion then he shouldn’t drive as your insurance would be invalid. Good luck and I hope a diagnosis is soon found.
One thing you could do which may help the medical team when you talk to them is keep a daily diary of how he is, how much he sleeps and anything else that is abnormal - this will give you a firm base to ask specific questions when he next see’s a consultant. It is also worth you making yourself a list of questions prior to any appointment as it is all too easy to forget what is important to you in a clinical setting. Be positive with the consultant but polite however, insist that you get an answer to your satisfaction before leaving.
Good luck, happy for you to DM me if you want to ask something privately.
Hi Peter. Im feeling better than i was but everything is still exausting. Thanx for asking..Glad your feeling better,Thank you for the name of it, hes not on any fluid meds. So i think it is connected to his liver ,No hes not under a specialist, he was but they discharged him after seeing him once, he had a scan and the liver showed to be slightly fatty, and yet when he went to have his stomach looked at by a consultant he asked about hubbys drinking and i told him the truth of what he was drinking, and he asked if hubby had been to see a liver consultant because sometimes stomach issues can be caused through liver problems, so i asked if someones been diagnosed with a fatty liver and continues to drink how long would it take to become cirrhosis and he said hes showing signs of it now.That was in 2018. He suggested going back to the gp and talking to the gp about it, so we did and the dr said , there is no problem with liver according to the liver consultant, so no more investigation is needed.
Year later in 2019 , hubby went to the drs for a routine appointment about his meds , i was out and about and he rang me and said he had cirrhosis, So i went home and i asked him how did he find out etc, the dr had printed off paper to write down numbers if hubby chose to use a service ,eg MIND..AA. what it was written on was a list of hubbys meds and hospital admissions etc and there dated 2018, were the words ,,, liver damage, cirrhosis, lung damage, lung fusion, and some other things,so i rang for an appointment to see the dr because drs are saying one thing and saying no the next...We went the next day and hubby said to the dr, you told me my liver was ok, he said it is, and hubby produced the paper he had printed off for him and he said whats this then, the dr said oh that was just the hospital enquiry, ill print off the correct one now, he printed it off and cirrhosis wasnt on there.He went to take the old one and i said um i dont think so im keeping hold of this. So i have kept both papers. I have gone to all his appointments and i also tape it so if i ever forget something or i think did i say this or did they say this i can listen to it.
In the past hes been sent to the hospital as an admission and been discharged to be told his problems are down to constipation, or they dont know whats wrong, and each time i have said has he had scans,or has he had something else and each time im told hes not needed them, his bloods say it, the one time i contacted his dr who had him admitted and wanted a full on examinations and bloods the lot because she could see how long its been going on , and told her that they sent him home with no tests, she told me to get him to the surgery that evening, which i did, she examined him and said how have they missed this , his liver was enlarged( that was last year), shes left the surgery now. Honestly its disgusting. The one dr there rang him one time and told him over the phone he had lung cancer (that was before covid), and the reason she told him over the phone was because he was too ill to get out of bed and go to the surgery. I went to bed that night and he rang his friend and told him he was going to kill himself because he didnt want to be a burden on me with it, it worked out his lung had turned in on itself, but she mistook that for a lump of cancer.He wont change drs because he said they have known me since i was born, i said yes and they will be the reason you die too.
I wrote a list of everything thats been going on with hubby the last 8 months and how hes got worse and gave it to the receptionist to give to the head dr there, he read it and rang me to talk to me about it, he said what do you think is wrong with hubby? i said its simple i think its cirrhosis,, he just said yes and nothing else.
I will be making an appointment to see the dr next week and tell him yet again everything.
Hubby got up earlier, he sounded ok for the first time in ages, i had to go shopping so left him watching the tv, i came back an hour later to hubby looking grey, in alot of pain with his stomach, aching all over and feeling sick and very unwell, he didnt want to go back to bed, he said im spend more time there than any where and im sick of it ,,so he chose to stay up, hes been sick alot, slight bit of blood in there but think its where he was wretching because hes not been able to eat much, he still didnt want to go to bed, so i pulled the recliner out and hes now fast asleep on there under a blanket.
Its just so hard and heartbreaking to see him going down hill, and house bound and near enough bed bound and hes only 53.
Thanx for the offer of PM. Might do that if i need to ask something.
Your going through a rough time and your husband to Godbless I had a bad experience when I found out about my cirrhosis I had been to hospital had to get out of work I had nose bleeds and stabbing back pain so hospital done bloods and an ultrasound and told me a bit of fatty liver nothing to worry about just to take it easy I was still drinking at the time but had cut dow massively but I had a fibroscan done in 2018 of which I didnt get any results for so consultant rang me in june 2020 and said I would need to stop drinking I said I've cut it down till 2 days a week that's when he said to me did I ever get the results of your fibroscan I said what results I never got them well he said your scan showed your borderline cirrhosis I near fainted first I had heard of it and I was still drinking for 2 years not knowing I rang my doctor and asked him did he get results he got nothing either he said I'm lucky I feel fine at the minute I've not been drinking for 9 months although I had a lapse not long ago but there is mistakes made because I felt ignored for months by my consultant I probably wont hear a thing until my 6 month scan last one was satisfactory and bloods where all good but hopefully your husband gets sorted soon and you get answers goodluck and Godbless
Morning tommy. wow mad isnt it how the body can show normal in blood tests and yet there be something wrong with the liver, i wonder what the liver does to hide the damage from the bloods, our bodys and how they work are strange.Reminds me of the time hubby was in the hospital and when visiting had finished i went down to the canteen and sat having a coffee, opposite me was a lady and daughter whos husband was in the bed opposite to my hubby, we got talking and she said that her husband had been ill for years getting worse and they have no idea whats wrong with him, his bloods are normal, his sats are normal, hes been in and out of hospital with pain,sickness, etc they have done all the tests they can and still nothing is showing whats wrong, she said this is the last time hes agreeing to come into the hospital to have more tests because hes been so unwell.She told me she thinks hes got something serious because hes got all the symptoms of cirrhosis or worse cancer,hubby wasnt too bad then only had minor problems, we chatted more and then parted ways. I went back to the evening visiting because i only live down the road from the hospital , i said what the woman had told me and he said when you had all gone the consultant came around and started talking to her husband (you know on the wards everyone hears your problems from the consultant because its so quiet and they are loud lol), The consultant said to the guy, we have finally found out whats wrong, im sorry to tell you you have cirrhosis and its advanced, he said but why has it only just showed up now after all the admittance ,, all the tests , you have all been telling me you dont know why im ill, some drs even called me a hypo and my wife over the top anxious. The consultant appologised and walked away. Hubby and him talked and hubby said you going to tell your wife? he said no im going to tell her that they still cant find anything, he said ill stop drinking and hopfully will slow it down or stop the process, no point in worrying her, he was in for a few more days ,his wife still not knowing, he passed away while in the hospital. Felt so sorry for his wife.
Hopfully yours will still stay the same , let us know.
Thanx i hope they find out soon too, although i dont think hubbys going to bother with the drs anymore, hes been living like this for the past year, he makes the most of the days he is okish, and when he is ill hes in bed sleeping, i know its not much of a life but like he said its disheartening not knowing whats wrong and it all comes back normal..
Thanks I know it's very disheartening to go through it all it disheartened me knowing I should have been told to years earlier I even went and paid for my funeral I told my doctor how I was feeling he told me I was over reacting but my doctor did make me laugh I told him I'm even a scared to eat things I heard he told me to get myself a Chinese lol but hopefully something good comes along and can even help you husband get better Godbless
I’ve mainly got AIH, PBC, Scleroderma, Anemia and GAVE (stomach bleeds). Other than my anemia and platelets, my Bilirubin, ALP etc are within normal levels. BUT, I just had an ER visit last week due to low BP low 80s/50’s), low pulse 50s, constant sleeping, fatigue, confusion, no swelling but weightloss. There’s no appetite and I feel full all the time (no ascites). I also have a very enlarged spleen, portal hypertension and have been referred to a Hepatology transplant team (appt Monday).
I really wish doctors could look at the whole person rather than basing everything strictly on blood results. Given my multi diseases, my docs have said I’m an anomaly to be this far along in liver disease (proof through CTs, scans, biopsy), yet not have all the accompanying blood results to back it up. In turn, they are examining lungs, heart, and rhematological diseases to see whether these are playing into my vitals and labs. It’s a long process.
I would remain persistent in getting your husband the care he needs. Sounds like he is struggling and quite frustrated that his symptoms and quality of life right now aren’t reflective in blood results, and he likely feels dismissed, as I’ve felt. i hope he can get one good doctor to listen so they can explore what’s creating his symptoms. prayers for you and hubby!
Hi Lyn, I've just been reading through the posts in response to your query. I'm so sorry to hear how poorly your hubby is. I find it appalling how very little is known about liver disease, even by those who claim to be experts in this field. The mind boggles as to how patients (very poorly people in these cases) are treated and the attitude of the so-called experts. What the heck are these people playing at!! My husband passed away under the lack of knowledge of such people. His death was down to drug-induced liver damage in the end, from prescribed medication (which he didn't need), which he was recovering from, on top of newly diagnosed cirrhosis, but was then given the same drug. They had no idea how to respond to his response to this. Hubbies liver blood tests were pretty normal in the weeks before his hospitalisation, but he was quite poorly and they assumed he was still consuming alcohol at that point, so were in no hurry to help him. It sounds as though your husband is showing signs of cirrhosis.
As I understand it, a person's liver tests can become normal over time as the liver adapts to how things are. But, it can also become so poorly that it can no longer push out these warning signs. I suspect in your case the liver has adapted. Let your darling hubby rest as much as he needs to. Try to ensure he eats what he can (as his liver will be struggling to provide the energy he needs) with plenty of fluids. But he mustn't consume anything that will upset his liver, such as alcohol. Continue with your persistence with the doctors. You will no doubt need to be polite to them, despite your frustrations. Don't be afraid to call for an ambulance should anything untoward happen in the meantime or you become more worried.
Morning best times, loving the name by the way.. Sorry to hear about your husband, how you coping? here if you need to talk.It is disgusting i agree, i think if everyone in here went for a degree in drs we would be amazing drs, we seem to have more knowledge than they do.Same what happened to your husband happened to my friends husband (same drs by the way) he kept going to the drs sick and they kept upting his meds, she said they are surly dont doing you any good? he said the drs know what they are doing, she found him dead on the bathroom floor about 8 months later, the coroner recorded death caused by a mixture of meds caused a fatal heart attack, its still going through the courts now. So i dont trust my/hubbys drs at all. I shared that with hubby (i wasnt supposed to because the case is still going on) but he needed to hear it and he dont believe me, so what can i do?
Yeah i agree, i had read you can have normal blood results even in end stage liver. Hubby rests alot and i just let him get on with it, i check on him all the time and make sure hes drinking fluids. I shared with my friend about the drs (she works there as a receptionist, she was a nurse in the local hospital for 17 years and she is disgusted by the way hes been treated and said hes def got cirrhosis because she had alot patients on her ward that had cirrhosis) and that i should ring and speak to one of the other drs but whats the point? he will just get the same answers and in the end they see me as an over protective wife and him being well and healthy. I will how ever call for an ambulance should i need to but for now i/we will continue to live life, to get on with it and things.
Hi Lyn I have the same problem. I have no quality of life. I can barely eat or walk. Constant pale stools, diarrhoea, very weak aching. Most of my bloods are normal ish apart from bilirubin which is always raised. I am banging my head against a brick wall with the drs. I had to beg to see a hepatoligist and even he dismisses me. None of them will listen to how ill I feel because of my bloods!!!! I can not take any more. I have 2 young daughters and I can barely leave the house. I have no quality of life whatsoever.
Afternoon Alibaba,,,Its an aweful way for someone to live, and its even worse when the tests come back normal but you know there is something wrong. I had to write a letter to the drs in the end ,saying how disgusted i was of how hes treated like he dont matter. They still have a duty of care no matter what .His dr soon pulled his finger out and sent him to the hospital.He was admitted earlier this year (or it may have been late last year) days/weeks/months just seem to be flying by), They discharged him the same night saying its constipation. The drs are now taking him serious enough that he was due to have a camera twice but was very very sick, so he didnt make it, but now they are pushing to have him have a scan, the dr is ringing me tomorrow afternoon to talk about it and why. They seem to be very concerned about his stomach and possibility its the dreaded C of his bowels. These tests should have been done regardless of his bloods showing normal, and the same with you, they should be doing more than just listening to bloods, way to many people i know, 2 were very good friends of mine, were diagnosed 2 late, even though they would go time and time to the drs ,have bloods and they would be normal, they both went private and within a week they were diagnosed of bowel cancel, to advanced to treat. They passed away within 6 months of each other. The sad thing is they could have survived had they been tested in depth.
My advice ,push it, push for scans, and cameras. Then if there is nothing you can know for sure its nothing serious, if your body isnt right then there is something needs seeing too.
Hope they give you more tests so you can have peace of mind.
I have had to fight and fight for help especially with the bowel cancer as they wouldn't beme as I'm only 41 but cancer and disease does not care what your age is!!!!!
I have never been so unwell in my life Lyn. My liver biopsy showed Nodular Regenerative Hyperplasia...strangely enough I have had bowel cancer and had chemo this year January to june!!! All my scans show everything is ok but I've never even been so unwell as I am now!!How is your hubby now? Does he lose hsor by the way and have bleeding gums?
How did you manage to get a liver biopsy with all your scans show everything is normal? I guess it was not easy and the doctors very actively resisted ... at least my experience speaks about it.
I had to fight and fight for it and when they did an ultrasound it confirmed I had an enlarged spleen so they knew something wasnt right and that I wasnt making my symptoms up!!!! The hospital are killing me here in Birmingham they wont give me any treatment and said ' give it time to geal' and I know time is going to kill me if I dont get help.
This is how it happens with this disease, you pay for a biopsy, you pay to buy medical attention. People with cirrhosis are privileged in such situations .... "This is sad. Very sad only"
I see many people in the forum with similar complaints as some of them have somehow proved their disease. Obviously, this disease is not uncommon, it is simply difficult to detect due to the ignorance of doctors. This disease is insidious and quiet and must be monitored and treated somehow. I tried to attract medical, political, television attention in my country, but without much success ... At least the doctors were willing to do all the necessary tests ....
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