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Newly Diagnosed Family Member

Posted , 4 users are following.

gail1309
gail1309

Hello. I would be very grateful for any insight you can offer. A family member that we knew drank too much, was recently admitted to hospital with pain that was initially thought to be due to gallstones. These turned out to be coincidental and in fact the real problem was ascites due to portal vein hypertension, associated with liver cirrhosis. After a three week stay she has now been discharged but still seems pretty out of it, presumably due to her medication. She is on crutches for some reason and seems to have no knowledge or concept of ascites or what it means. She is not due to go back to hospital for a month. Her parents are very relieved she is home, but largely in denial of the seriousness of the situation. I am beginning to wonder whether I am over-reacting but fear not, and I would hate to see the development of this illness come as a sudden shock to them. I am not close to this family member but am concerned for her parents. Can anyone please shed light on my relative's lack of understanding (she is only in her late forties), her use of crutches and the apparent lack of close monitoring over the next few weeks. Thank you in advance.

1 like, 8 replies

8 Replies

  • RHGB
    RHGB gail1309

    Posted

    Alcoholic liver cirrhosis is fairly serious. And the sympotms show the seriousness of it, there are different levels of cirrhosis, these are usually not good signs. The reason that they might have thought it was gallstones, is that they block the bile duct and can cause jaundice (yellowing eyes/skin). Cirrhosis is the other reason for jaundice. Did she turn yellow at all?

    Portal vein hypertension causes oesophageal varices, which can lead to internal bleeding which is very dangerous. The ascites (fluid retention) on the stomach should have been drained. Beta blockers of a special type are usually given for this.

    Difficulty in walking is probably down to peripheral oedema, water retention in the lower legs, ankles and feet. Diuretics are usually given to combat this.

    The confusion will be down to hepatic encephalopathy (Google it), where the liver can no longer remove ammonia from the system and it rises up to the brain and cause confusion. Lactulose is usually given to carry out the task that the liver can no longer do.

    Also, most people who drink heavily/regularly have gastritis. This inflamation of the stomach lining, prevents the body absorbing vital nutrients and vitamins. The most important of these is thiamine for the brain function. She should be taking various vitamins to help.

    Her medication will not be causing her to be out of it. I don't know which country you are in, but in the UK, alcohol use disorder is not seen as an illness, but something that is self inflicted and therefore deserving of little time by the medical profession.

    • gail1309
      gail1309 RHGB

      Posted

      Thank you for such a quick reply.

      I'm unsure whether my relative had jaundice. The gallstones were confirmed though, although they are not a priority.

      She lives some distance away so all the information the family is getting is second-hand through her husband, (who had difficulty getting any sort of prognosis while she was in hospital), or from the patient who doesn't have much of a grasp of the situation. Her husband may have more information now but as I said we are not close so I will not hear from him directly. He did say however that on admission she looked pregnant and she had the fluid drained at least twice while she was hospitalised. Ascites, portal vein hypertension and alcoholism were confirmed by a nurse speaking to another family member, although no mention was made of oedema in the legs.

      I did wonder about the vagueness being due to encephalopathy, but wouldn't have thought she would have been discharged while still in that state. We are in the UK though, so perhaps that is due to the attitude towards a 'self-inflicted' condition.

      Thanks again for your insight. Unfortunately everything I am being told or have read suggests a very advanced condition and I can only hope things will look more positive as time goes on.

  • helen1602
    helen1602 gail1309

    Posted

    Hi ascites usually occur when the liver does not function properly so a drain is usual to ease pain and get rid of excess fluid, the possible confusion she has can be what is called encephalopathy where toxins in the body build up usually in a patients stools and presents as confusion, this can be extremely dangerous and if left untreated can ultimately cause death, if this is what she has got then she should be on large amounts of laxatives I.e lactulose etc if her problems are to do with liver problems it can cause major fatigue not just tiredness so the frame may assist greatly for her to get around with some sort of independence, if she has been diagnosed with liver failure then close monitoring is paramount for her safety. I am also a liver failure patient caused by multiple factors starting with it being hereditary and alcohol caused it to be more serious even though my intake was not severe as well as the above I am an insulin diabetic, originally they thought I had pancreatitis but turned out to be severe liver failure I am currently awaiting a liver transplant although I have totally abstained from alcohol for 3 years it has worsened from the original diagnosis. So I would say you have a right to be concerned and maybe you need to be with her at the next appointment so you can get the info first hand, I hope this helps a little and be sure and forceful about her diagnosis if it is because of her liver, I wish you good luck and try not to preach at her gain her confidence so she can open up with ease to you, its a very scarey thing to get your head around. Good luck
    • gail1309
      gail1309 helen1602

      Posted

      Thank you for your reply. I am sorry to hear about your own health problems. You have a great deal to cope with and I wish you the very best of luck for a successful transplant.

      I'm inclined to think you're right in assuming that my relative has actually been given a walking frame rather than the crutches she mentioned. Fatigue and weakness didn't seem to fit with operating crutches, and she was in a wheelchair while in hospital. Pehaps she was embarrassed by needing a frame, but more likely it was the confusion. If that is down to encephalopathy I am surprised she has been discharged while still in that state. Especially when I believe it is essential that she manage her diet very carefully, as well as taking her medication and of course abstaining from drinking. Perhaps that has been left under the supervision of her husband, but he works and is an alcoholic himself.

      Are the effects of the encephalopathy likely to be permanent to some degree ?

      All of the family live several hundred miles away so we do not have a great deal of detail regarding exactly what meds she is on, or what services might have been made available to her, but I know she had several scans of her abdomen and the fluid drained away at least twice. Hopefully we will see progress from this point on, and hear more about her prognosis.

      Thank you once again.

    • RHGB
      RHGB gail1309

      Posted

      'Are the effects of the encephalopathy likely to be permanent to some degree ?'

      The symptoms (confusion) are reversible, the condition (underlying cause - ammonia in the blood stream) is not, so should be taking lactulose for the rest of her life. There are other alcoholic brain disorders that can be more permanent, but they are few and far between.

      It is quite normal to be just packed off from hospital and sent home, without really being told anything. There is quite usual for all hospital stays. It is rare to get a consultant that takes an interest and explains everything to you. Believe me, in the last three years I have seen enough consultants to last a life time. Last year alone I saw a, gastro consultant, a neuro, a cardio and a dermatologist.

      I found out the most about my condition from self research, looking on the internet, using forums like this one and buying my patient records which made for interesting reading.

    • gail1309
      gail1309 RHGB

      Posted

      It's good to know that the confusion shouldn't be permanent with good management. I just find it worrying to think that someone who is going to be fighting temptation for the rest of her life, might find the massive changes she also faces too much to embrace without a lot of support. At present she doesn't even seem capable of remembering or understanding  quite what has happened. It would be very easy to slip back into denial, but I am probaby not giving her enough credit.

      Having to buy your own medical records to fully understand your condition is quite something !

      Thanks again for your help.

    • RHGB
      RHGB gail1309

      Posted

      Technically they are free. But they are allowed to charge an admin charge of up to £50. I had two, the first hospital local to me, which had me for about 12 hours whilst they did tests and scans and the second one where I was there for nearly two months where they were going to do neuro surgery on me.

      It was £25 for the first set and £50 for the second set. If it happened again, I wouldn't hesitate to pay for them again.

      Nearly all drinkers slip back into their old habits. Alcohol changes people's brains and bodies over time (heavy drinkers) and this has to be dealt with, just in the same way as smokers or heroin users. Unlike them, who will get loads of support, people on alcohol will get shunned, I speak from experience.

      Just like for heroin and smoking, there are medications for alcohol that help and undo the damage (addiction), but they will not be offered. Whilst the patient has been detoxed and is in a state of confusion, she will not think about alcohol.

      However, when she is better and her memory returns, so will the call of alcohol. Nearer the time, you may want to pop in to the alcohol forum, to get a better understanding.

    • gail1309
      gail1309 RHGB

      Posted

      The lack of support and tacit condemnation must be emotionally tremendously tiring for patients already dealing with very serious illness. I would never have guessed this was the case with life-threatening conditions, but I have seen a friend suffer a similar attitude in the field of mental health. The widespread lack of empathy and actual disdain from mental health professionals was quite amazing.

      I will certainly bear the alcohol forum in mind, and thank you for the tip about the danger of addiction kicking back in once the confusion has passed.

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