Help wanted

[J7836]

I lost my father a month ago and can't quite get my head around it. We were aware he had cirrhosis but had no idea how bad it was. Was admitted to hospital three times each time he was worse when he came out. On the day he died he vomited black liquid all over the bedroom, we called dr at 8.30 she came around 2pm said he was poorly and talked about risk of a bleed, he had an endoscopy the week before just before he was discharged from hospital she said he had varicese but they were small, she also said he had an ulcer which we knew nothing about, he died a few hours later. So I'm just wondering if what he committed was blood earlier that day and if so why did the dr do nothing about it. Any help/advice would be appreciated

[AyrshireK]

Unfortunately it does sound like your father had a bleed on the day he passed away. My hubby had a massive upper GI bleed due to burst varices and the blood he vomitted was a mixture of fresh blood and also black 'coffee granule' textured stuff. He was admitted to hospital immediately when I took him to A&E and it was then he had an endoscopy and was diagnosed with cirrhosis (due to Auto-Immune Hepatitis).

Sadly I can't comment on the doctors action or inaction on that tragic day. It sounds like dad should have been hospitalised early on following the dark vomitting rather than waiting for Doctor to attend.

It's possible the bleed that day was from the ulcer rather than varices.

Sadly can't offer much further guidance, sorry for your loss.

Katie

[J7836 in reply to AyrshireK]

Thank you, so many other things happened which just don't seem right, I think his treatment was disgraceful. He was discharged from hospital 5 days before he died but not a word said about anything.

[AyrshireK in reply to J7836]

What was the cause of your father's cirrhosis? If you don't mind me asking.

[J7836 in reply to AyrshireK]

Alcohol, he never had drink for 3/ 4 months and things diagnosed after 2 months of not drinking

[AyrshireK in reply to J7836]

Sadly, some medics are very dismissive where alcohol is concerned, they shouldn't be but sometimes they don't give the support they should. In your father's case it sounds like diagnosis and his abstinence came too late.

Some doctors are too quick to judge. When my hubby was in High Care Unit following his bleed a doctor came past his bed and loudly stated "Let this be a lesson to you, you need to seriously modify your life!" ....... my hubby is life long t-total and was absolutely horrified by this doctors attitude and called a nurse over to go and set the doctor straight.

Sorry your Dad didn't get the care he needed.

Katie x

[J7836 in reply to AyrshireK]

I did get that impression, I'm meeting with the consultant to try and get some answers, I can't just let it go.

Thank you x

[Hidden in reply to J7836]

Hi I'm new on here so sorry about your father,when you go see the consultant I would record the conversation not for using against them but for you to reassure yourself most times there is so much informationto take in you end up questioningyourself if you heard right that's what I do when I take my dad good luck hope you get the answers you need.

[J7836 in reply to Hidden]

Thank you

[Millie09]

hi Janet first off my deepest condolences on the sad loss of your father .reading your post it sounds like he had a bleed due to varies .your father must have been very poorly , but with cirrhosis it can Sometimes get worse within days or weeks .seems to me that he should have been hospitalised way before it happened , but as Katie said we can't really judge on the actions that were or not taken due to not knowing how sick he was .I would definitely take this further as I did with my own father when he passed away to secondary cancer to the brain .I went through PALS that were based at the hospital .I hope you find some peace soon , it's very hard , even for me 4 hrs now since he passed and I still miss him like crazy .take one day at a time , Good luck and hope you get through this ... 🙂x

[fizzix50]

I know you are looking for answers but that way lies a long path of anger and resentment with the only result being your own mental health being at risk. My husband is in the same situation, but continues to drink, and I know it is only a matter of time until something similar happens to him. Nothing can take away the pain you are feeling right now, and there is no right or wrong way to grieve; it is so intensely personal and unique to each individual. All you can hope for is to find some peace. Cirrhosis is a horrible disease - it is degenerative and each episode of bleeding does tend to get worse over time (in my own experience). I guess I am lucky in so far as everyone at the hospital who has treated my husband has been sympathetic, not just to him but to the family as well. I personally don't understand why the government will class cannabis as an illegal drug, yet alcohol claims so many lives, and destroys so many families every year, and yet is legal. Please note I am not extolling the virtues of cannabis, have never taken it! It is very hard for GPs - they are not experts in every field - hospitals are the only places equipped to deal with this type of bleed.

Have you considered any counselling to help you come to terms with your loss? I can't imagine how you must be feeling right now, every dad is a hero in their child's eyes. I hope you find a way to get past this. Thinking of you.

[J7836 in reply to fizzix50]

Thank you, I do realise I am grieving but there are so many things which have happened that I feel I have to talk to consultant to try and get some answers. I feel like my father was discharged from hospital in a hurry and nothing said to any of us about his condition. A bleed wasn't even mentioned until the day I called dr out and I just wonder why she did nothing about it - she seemed to know more than we did. 3 times in hospital and only once did See a discharge letter. I know I should just let go but I can't, I lie awake every night thinking if only this and if only that it drives me mad.

[fizzix50 in reply to J7836]

The discharge letter absence is definitely wrong; we have had one each time, and even though it is in "doc speak" it did at least offer some clarity. Hopefully the consultant will be able to answer your questions. I know nothing will ease the pain, and nothing can bring him back, but I just also know the impact of chronic over thinking and how it can drive you nuts. Communication between doctors and families is so critical - it makes me realise I have been lucky in the doctors my husband has seen so far. No one can advise you or tell you what to do (I hope you didn't see my post as that) as only you know in your heart what is right. I hope you get the answers you are seeking.

[J7836 in reply to fizzix50]

No I didn't see your post as that, I'm just grateful people are taking their time to respond to me it helps x

Thank you

[Suzy1littledev]

Hi Janet I'm very sorry for your loss. If you feel your father did not get the care he should have then before you see consultant write all your questions down on paper that way your mind won't go blank when your in there. Also record the conversation so that you can go over it and understand it. Sometimes these consultants talk to you like there talking to another qualified dr. and expect you to understand what they are saying. My brothers an alchaholic he was recently in hospital and his care was not up to scratch. Allot of things went wrong and my brother was neglected on several occasions. I ended up staying there all day every day just to make sure he got care he needed. My brother ended up being discharged from hospital sooner than he should of been with no care plans been put in place or anything they said they were going to put in place before he would be sent home. He was even sent home with his cannula still in his arm. I can't say to much about it as I have filed complaints. But his treatment was far from what is acceptable. And sadly sometimes it happens. Whether it be under staffing or notes not being up to scratch or even just plain neglect. Whether you are greaving or not if you feel you need answers then pursue them. You have to do what you feel is right for you. When you see consultant ask your questions and if there's something you don't quite understand then ask again. Hopefully you will come away from there with your questiones answered and your mind put at rest. Then hopefully youl be able to move on and grieve without all the questions running round your head. Good luck xx

[J7836 in reply to Suzy1littledev]

Thank you, I witnessed some terrible things in hospital when visiting my dad so I know it wasn't only him they were like that with, still doesn't make you feel any better though. I have lots of notes so I am going prepared x

[Lperica10]

I am soooo sorry for your loss. As I sit here and read your story I am crying because I lost my own dad to cirrhosis in October. I miss him sooooooo much. I don't even know what to do at times. And I still can't wrap my head around it. My dad was 63. I miss him so much. Good luck and I hope you get some answers. Here if you need to talk.

[J7836 in reply to Lperica10]

Sorry for your loss too and thank you for your kind words x

[Hidden]

Hi,

Please accept our condolences for the loss of your dad.

Have you thought about contacting PALS? ( Patient Advice and Liaison Service)

All NHS trusts have PALS departments and can help you with health-related questions, help resolve concerns or problems and can give you information about the NHS complaints procedure. See link below to NHS choices;

nhs.uk/chq/pages/1082.aspx?...

They may be best placed to help you try to investigate your dads care.

Wishing you all the very best,

Rebecca

[Hidden]

I'm so sorry about your father. I went through similar: one paramedic took my vomiting blood seriously, but A&E didn't and they sent me home. The next paramedic was extremely dismissive and just seemed to want to head off for a coffee break regardless of how sick I may be, and it was only a few nights later when I told my husband he should take me in (after an excessively heavy bout of vomiting blood) that A&E booked me in as an emergency. I was literally days from death, and spent a total of nine days in hospital - four of those days on MHDU. As mentioned above, I feel that PALS is a good place to start. I'd also suggest counselling, as those are some painful memories to have to live with, and it would probably help to talk to somebody as you deal with your loss.

Best wishes, and I hope you get the closure you so badly need and deserve xxx

[J7836]

It gets harder every day, reading things in here just makes me more certain that my dad was neglected on more than one occasion. I have had some dealing with PALs the 2nd he was admitted I got one call back from the ward sister who was investigating and going to get back to me but she never did.

It was a massive shock as we really didn't know he was that ill. As I said initially after each admission he got worse, he did have lots of other issues and was in serious pain yet they took him off all his painkillers which I don't understand I think that's why I thought he wasn't so bad - I thought if he was going die they would make sure he was pain free and comfortable but his last few days certainly weren't that

[Hidden in reply to J7836]

PALS have a duty of care to investigate and ensure all reports are communicated back to the enquirer within a specified time.

It may be a good idea to speak with the PALS manager and deal with them directly,

Warm wishes

Rebecca

[J7836 in reply to Hidden]

I see consultant next week if I get no satisfaction from him I will go through PALS.

Thank you

[Hidden in reply to J7836]

Good luck.

[pear-shaped]

Dear Janet,

My mum had suffered for years with huge bleeds - mainly from her nose. She was diagnosed with heart disease - which consultants would change their minds about at every clinic appointment. She was put on beta blockers which obviously was making things worse. The day she passed away - she was having massive bleeds from all exit points - ears, nose, mouth and below... The docs were giving things to stop the bleeds and repeatedly saying that she had ulcers so the blood was 'bad blood' which should come out. She was rushed to theatre and we were told she wouldn't last as her heart would give out. She faught for nearly 7 hours and once opened the surgeon found her liver was completely gone... They couldn't save her. It was due to many years of misdiagnosis and assumption that only drinkers got liver disease. She always said the blood comes up her throat but they would dismiss it and say it was her nose.

I was so angry that I demanded answers - now I look back and realise that I should have asked questions sooner and made sure her follow ups were happening. I was so complacent and just accepted what docs said and questioned very little. Losing my dad and brother also due to missing diagnoses has left me with a very different outlook - so when my husband got diagnosed with liver disease I didn't sit as naive as before...

This site gave me huge support and helped me ask the right questions before it was too late...

Sending you huge hugs,

Pear

[J7836]

Thanks for your reply, hope your husband gets the care he needs x