hello everyone

My mum was diagnosed with fatty liver about 4 years ago. 2 years ago it developed into cirrhosis. I can remembered that day so clearly. The doctor looked at her sternly and asked " How much are you drinking a day?" mum looked at me then him and answered " Well I don't know, I have around 6 maybe more cups of tea and some cold drink" He just sat back and looked at me. I knew exactly what he meant and explained to mum that he was on about alcohol. Well mum looked at him ( a lot more sternly than he had at her) and told him straight I don't drink alcohol... she did say some more words but ill spare you them. least to say he got a ear full. My mum at the time was 65 years old, and a strong minded and bodied women. 9 months on, things started to get worse. Every month we would go to the hospital for her to have banding done. This has now stopped, for how long I don't know. 4 months ago the swelling started in her belly and then her legs and feet. I got her a appointment to have a scan and it showed a lot of fluid. They put her on water pills and made an appointment to see her consultant to weeks later. At the time I asked the doctor why was she still on aspirin? and he didn't know but said to stop taking them...

The following 2 weeks were filled with blood test and scans. At the consultant's appointment we were told that she is in liver failure. He changed her water pills and said he would refer her to cambridge. That was in the beginning of march. Since then she has had to go in and have the water drained off. She ended up staying in for 4 days as her potassium levels were near on un readable and her magnesium was low. Its got to the point now that she has had to move in with me and my son so we can take better care off her. She wasn't really looking after herself, not eating properly etc. Shes lost so much weight and muscle weight it's sometimes hard to believe. We have are appointment (after I chased it up) for her assessment. It is frightening how quick she has gone down hill in just 5 months. She dose seem a little better,well to look at, since i moved her in with me. But that's more down to regular meals, exercise and company. she gets really exhausted and is always feeling shattered. Unlike most of you. We have never been told from day 1 at what stage her liver has been or what the blood test really mean. In fact if i'm honest we no beggar all. At anytime we have asked something all we get told is, Its because of your liver or yes you will feel like that..... really helpful.. I do sometimes wonder if its her age that they don't really bother to much on giving all the details. Im probly wrong in saying that, but it is how we feel. But I'm on the ball now (and that's thanks to all of you for the information you all give) and Iv a list of questions for them. We are at the point with mum that i have had to give up my part time job to look after her. And i dont mind cause it means i'm not worrying about her when i'm not home and i get to spend time with her as to be honest i don't know how long we have got.

Im sorry for writing so much. I only meant to do a little post. But it seems it all needed to come out. And other than family i feel lost as to who to turn to.

I thank you all for sharing your stories and helpful answers. You are truly a wonderful bunch of people :)

16 Replies

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  • Hello takincareofmum, well done you on pushing, sometimes it has to be done, it is a great pity they didn't refer your mum for a transplant assessment earlier, when her diagnosis first came too light. Hope you get a date for assessment very soon and before too long. If you look back at my posts I did a full weeks post covering the ins and outs of a liver transplant assessment week - it varies a little from unit to unit but the basics are the same. Age can be a factor and overall general health i.e. stuff not to do with the liver particularly heart and lungs. When she does go in for it, ask both her and her assessment team whether you can be with her during the week, I was there every day, all day for my hubby's one because he struggles with deciphering all the medical jargon.

    Wishing you both all the very best.

    Katie xx

  • Morning ayshirek, thank you for the reply. I will sit tonite with a cuppa and look at your post. We do feel they should of done a lot more before now. As a family we learnt the hard way about pushing doctors and hospitals. We're going to see the team on 20th and her assessment is on 26th home on 29th. :) at least we are getting somewhere. :)

  • Hang in there prayers for your mom

    :-) Benita

  • Thank you Benita :)

  • I know someone who is 66 and was transplanted not even a year ago , age should have no factor unless there are other health problems. Push for a scale of how bad your mums liver is , and get written results of all blood tests and scans. Push them to get her to Cambridge for transplant assessment.

  • Thank you Bermuda, don't worry I will get a full account out of them. The gloves are off now. :)

  • Go girl. They seem to respect ou a little more if you show some knowledge. I have found it very useful, they then know they can't be as dismissive. GO girl.

  • So sorry to hear this. Sounds like some neglect here. When your mother told them she didnt drink alcohol she should have had a biopsy to find the reason for the cirrhosis. There are many different reasons for Liver Disease and you should have known what hers is. You need to insist, as you need to know whether she has something that could be hereditary to prevent anybody else in the family suffering in this way. Also to be aware that this could happen and of the early symptoms.

    Good Luck

  • Hello takecareofmum

    Sorry your mum going through this, and also your self, yes I have also learned that you do have to push for every thing you are entitled to know, for me personally when you know what your up against you can somehow cope with things, and yes it helps me also that every appointment I attend to see gastroenterolgist and heptologist I want copies of their findinds of liver scans, blood tests, which I do find helpful, and sometimes you really need them, good luck to your mum and you also take care of yourself. Annette

  • Hi very sorry to read your story and hope that you will soon start to get some answers I have had to push our GP to get tests and reasons where he was quite happy to let things lie. What I find particularly heartening is your dedication to your mother. So often now people care from a distance and wonder why the patient does not respond well. You are credit to her. Kind thoughts and wishes

  • Hiya you should be commended for your dedication. You may already have realised that you have to be insistent with doctors, they're not gods and are just as fallible as the next person! Take notes of what these specialists say and write questions down ready to ask them. I make sure I attend all my husband's appointments because I think the patient doesn't always take everything in. Good luck in your pursuit of answers and I hope your mum receives the care she deserves. Jillo

  • Hi. Good luck for your mums assessment I hope all goes well. I advise you (if you haven't got one already) to get as big diary and write fown everything in it. This includes everything the consultants, nurses, or anyone else says, what she is eating, how much fluids she has, toilet information. Confusion, tiredness the list is endless but if it is written down for you to refer to it helps so much. Also if they change the meds write it down. Positive thoughts coming your way x

  • Hi, just to say my hubbie had a very successful liver transplant in Birmingham last July aged 66 & 1/2. Your doing a great job. Sending love & prayers to you & ur Mum xx

  • Hello,

    My mum passed away about 10 years ago due to liver failure... She would heavily bleed from the nose - they docs said the bleeding was from a clot in her nose but she would insist it came up her throat... When I questioned it - it was never looked as possible liver disease... She had a blood test - which picked up her LFTs but this was overlooked by the GP and the test never surfaced... The docs admitted that they never thought of the liver as this was associated with alcohol drinkers - my mum never touched a drop in her life. The reason why I say all of this is so that you can see - you must push for the right treatment and (thank goodness) we live in a more answerable world now - with PALs etc to support us...

    I didn't do enough for her and became so complacent with her care - that I accepted all that I was told and did not question any of her treatment...

    I pray that you and your family are given the strength to fight for her...

    Lots of love,

    Pear

  • Please don't be so hard on yourself, we didn't have the support and resources that we have today. I will fight for your mom, blessings to you!

    Love Benita

  • Make sure she does not eat salty food as this habit will make the ascites (belly fluid) much worse. Also make sure she takes vitamins B12, B6, and Acid Folic. For cirrhosis they get depleted. I would also recommend taking some high quality Glutathione and SAMe. These supplements will help the liver to fight digestive toxins and free radicals which destroy the hepathocytes. You do not mention anything about her liver function tests, CBC (full blood count) or urine tests. These are good indicators about the liver condition as well as red and white cells, platalets, cholesterol, triglicerides, etc.

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