Dad in a bad way x: It's a long post... - British Liver Trust

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Dad in a bad way x

Lea224 profile image
25 Replies

It's a long post... Apologies.

My dad was admitted to hospital 2 weeks ago with an extremely painful knee. It turned out to be septic arthritis. His eyes were yellow already (he has been a severe alcoholic for 15 years. Was admitted for severe cirrhosis 4 years ago but continued drinking).

This has become full sepsis throughout his body. This has sped up his liver failure rapidly. He now also has severe cellulitis. His kidneys are not working great and his heart is starting to be affected.

He has been in intensive care for 10 days. He's now in a liver specialist ward. But it just kind of feels like it's downhill..

Everytjings being affected. He's had severe confusion from hepatic encephalopathy and isn't eating.

The hospital are still trying things. But I need to know if there is any hope. My mum died 16 years ago of cancer (leading to the alcoholism).

The hospital aren't really saying.. They won't give a yes or no. I just wish I knew more.

Has anyone been in this situation or similar?

Many thanks for reading so much x

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Lea224 profile image
Lea224
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25 Replies

Hi

I really feel for you both. His consultant needs to tell you exactly what's going on. Pm me if you need to. Take care Lynne

jojokarak profile image
jojokarak

Hiya sorry to hear about your dad 😔

The hospital can't really give a yes or no to be honest it depends on a lot of things, if he has stopped drinking, how strong his body is and how he reacts to treatment... A few of us have been this poorly and pulled through though, don't give up hope 😊

I just hope he gives up drinking to give himself a fighting chance to get on the transplant list x

Laura009 profile image
Laura009

Hi Lea. I really feel for you and completely understand what you are going through. My husband died of alcoholic liver disease, kidney failure and broncho pneumonia in ICU 9 years ago. Right up until the day he died his medics couldn't say whether he would pull through or not as in their words " there's always hope".

Rest assured however bad your Dad is, he is in good hands and will ne very well looked after.

I will private message you later

Laura xx

Lea224 profile image
Lea224

Thank you so much for your replies. I didn't know how active this board was so wasn't sure anyone would even read it.

I had a missed call from the hospital nearly 2 hours ago and am still waiting for then to call me back. Feel so nauseous as like I said... They haven't really told us anything so don't feel this can be a good call.

Unfortunately... One doctor in ICU did say to us last week she isn't sure that this can be reversed. We said we understood that the liver is too far gone now... And she said no, she means everything.

I feel so panicked this morning. He's only 60. And I've heard so many people say things like, oh he should have learnt from last time etc. But it's not that easy! He was never the same person after we lost my mum. He could be very cruel and nasty.

But he did make sure he always went to work to try and control it. And I just feel so sad. He used to be so vibrant. The life of any party. So funny and proud.

And to see him the way he is now.. Confused. Scared. Doesn't understand things.

Sorry I'm rambling now. Im not very good with emotions and don't like people seeing them so don't feel can say any of this face to face with anyone x

Hi Lea,

We are really sorry to read how poorly your Dad is. Our nurse led helpline is open Monday to Friday 10am to 14.45 if you would like a chat.

You also may want to contact Al-Anon, an organisation that is there for anyone whose life is or has been affected by someone else's drinking.Here is the link;

al-anonuk.org.uk/

We know you will also get support from our lovely members too.

Take care,

Warm wishes

Trust1

HI Lea

So sorry to read your dads so seriously ill! I too like Laura understand your pain and confusion as my first husband died age 56 from alcohol and my best friend too in her late 30's.

Just remember we're all here to support you as much as we can.

Please take care of yourself and try to eat and drink even if you dont feel like it as you must keep your strength up!

I'm sending you a hug in the meantime.

Take care

Trish x

Lea224 profile image
Lea224

Hi.

Thank you again for your replies.

They spoke to us today... He has now got hepatorenal syndrome. They are pushing a feeding tube tomorrow to attempt to see if kidney function can improve.

If not... Well. Thats it then I guess. They have decided if his heart stops they will not be trying to restart it any further.

His bilirubin levels are up to 530 now.

We don't hold out much hope for the feeding tube. And will be considering requesting a move to a hospice as we don't want him to be suffering and in that kind of environment.

Thanku all for your replies x

Livewell69 profile image
Livewell69 in reply toLea224

Hello,

Like a lot of people on here are saying it such a difficult time for you and the Drs are in a position where they cannot give you a direct answer as much as you are desperate for some clarity. It's just time to see if your Dad manages to fight this off. My husband had a very similar story. He also had sepsis along with stage 4 cirrhosis and he spent 2 weeks in ITU but he pulled through. However a year in he developed it again and then septic arthritis too in his back. Our story didn't end well as his body just could not cope with all the infections and his liver failure too. He got kidney failure too. They fought for him so well on the ITU suite but even up until a couple of days before they could not give us a yes or no if he would pull through.

Stay as strong as you can and there is always hope, every day there is hope. Turn to people who offer help. We are all rooting you Dad will pull through for you.

Sending you all the hugs in the world this is an awful time for you. If you want to sound off you can message any of us privately of you wish xxx

Ann

Lea224 profile image
Lea224 in reply toLivewell69

Thank you very much Ann. It sounds so familiar. I hope you are doing OK x

Laura009 profile image
Laura009

I have sent you a pm, but just seen this. I'm so sorry for you and all concerned. Xx

davianne profile image
davianne

Hi Lea, I am so so sorry for you and your poorly Dad's situation. I sincerely hope your Dad's health improves, but I understand your considering a Hospice just now. My thoughts and prayers are with you both. Please remember to take care of yourself.

Take Care, David

Kristian profile image
Kristian

Hi Lea,

Having been through the Sepsis situation I can say that there is hope. I am after all here to write this post, lol. Much of what you say resonates with the situation I found myself in.

The hospital really wont be able to give you a yes or no answer. To be honest they probably dont know themselves. It does though seem that they are doing all they can for him to give him the best chance possible.

Sending you my best wishes.

Kristian

Highflying54 profile image
Highflying54

Hi Lea

Having been through this with my younger brother, I do feel for you. In my experience the nurses and doctors will do all they can to improve your dad’s health and all you can do is be there for him and continue to show him you love him. People who don’t understand this condition often make unhelpful comments like you said. So many people said to us ‘its self inflicted’. No-one would choose this path but alcohol gets such a tight grip it’s very hard to fight back. Sending love and hugs xx

Poobear69 profile image
Poobear69

Hi, I'm sincerely sorry to hear that your dad is so poorly. As others have said he is being cared for my amazing medical teams who will not give up and will do the very best that they can for him. One thing that I meant was that medical professionals can be extremely parental, this was my observations, in sharing information. You need, on behalf, of your dad to be parental too. Ask for an away from the beside chat with his consultants and firmly ask what is going on what his current diagnose(s) are and what treatment plans are and will be put into place. When I was diagnosed with ELD pre transplant in 2017 I did the same. It allowed me then to take some charge of my diagnosis and in knowing what was happening and how I was being treated allowed me and my family to make some informed decisions and choices. I do hope that he makes a good recovery.

Lea224 profile image
Lea224 in reply toPoobear69

Thanks so much. Yes.. Its exactly like that! I'd rather know what's happening than them kind of keeping bits from us x

Mirlo profile image
Mirlo

Morning Lea

So sorry to hear about your Dad. It is very hard to be strong in the face of professionals saying that they do not know. They will be doing all they can. We will keep you in our thoughts and prayers. Bless you and your family.

Joy

Bubbles201271 profile image
Bubbles201271

Hi there,

Sorry to hear about your dad, I’m in the same situation at the moment. Dads an alcoholic had ascities drained but up until 2 weeks ago was drinking very heavily. Now at home not drinking been told he touches a drop and his liver will bd gone. His weak not eating. From the countless times we’ve been in, the hospital will try everything they can to help your dad pull through. Feel for you as sometimes you don’t know what’s going on. Ask to speak to the consultant they should tell you the situation. Thinking of you if you ever need a chat I’m more than willing to listen.

Take care

Jo X

SRE3 profile image
SRE3

Hi lea my heart goes out to you my husband was in icu last year with liver and kidney problems following a massive bleed he too is an alcoholic and at the time they didn’t know if he would make it. He did pull through but despite my best efforts continued to drink we have just returned after a further lengthy stay in hospital . The liver is an amazing organ is what the consultant told me it constantly surprises them which is why the find it difficult to predict anything. My heart goes out to you but never give up and as for the people who say they do it to them selves with drink they have no idea what they are saying it can happen to anyone and many of those who criticise in my experience are drinkers themselves! Take care and all my best wishes go out to you x

Boldad profile image
Boldad

Hi,

I know I was told boxing days 2016 I wouldn’t make it through the night cirrhosis. Then I was told 30 days. I’m 53. I didn’t eat. Lots of trauma. Stopped drinking for a year. I volunteer for homeless. Seen lots of horrible things etc. Been drinking again for 1 1/2 years. Heavy liquor lots. Past 6 mths I have 2 beers in morning mostly because of shaky and don’t want seizure. Saw my liver specialist. Have few procedures being done 29th.

Never give up sweetheart. Try remember good and keep talking to him. Just my opinion. Now to make giggle a bit. I said to doc. Look even god and the devil don’t want me. Sincerely

Linda

ThreeSmiles profile image
ThreeSmiles in reply toBoldad

Oh my Linda ☹️. Have you thought of trying to stop drinking again maybe this time with some support of some kind - be it AA (or similar), a withdrawal scheme, family or friends - anything really to help you get as much “better” as you are able to get with your cirrhosis. All follow discussion with doctor of course! You’ve seen “lots of horrible things” so surely you won’t want people seeing you in a horrible state - hate to say it but it’s the state you may/will be in if you don’t stop drinking (I think you know that already) ....

Please try.......

Angus

CocoChannel profile image
CocoChannel in reply toThreeSmiles

I was going to say, you need to sort out the two beers in the morning routine. You mentioned seizures, but have you mentioned you feel the need to drink like that to your doctor?

ballie52 profile image
ballie52

Hi Lea I completely understand how you must be feeling at this time!

It's so stressful not getting the answers you hope for..I'm sure the medical team are doing everything they can to save your dad but it's the questions that we want an answer to that are the most difficult for us..we want to feel in control when our loved ones are suffering to be able to emotionally cope better..but sometimes they can't give us the answers we want!

On a positive note my husband had sepsis kidney failure and was on life support for nearly 6wks and he pulled through although this was after a complicated 3rd transplant!

There is always hope Lea!

I hope your dad starts to show improvement it's so hard for relatives at this time!.

Lea224 profile image
Lea224

Hi all.

Thank you for all your replies. Sorry I wasn't able to respond before.

So... The doctors kept pushing for the feeding tube. He kept ripping out. Becoming more agitated. Saturday and Sunday was more sleepy... But never really going to sleep or being awake.

He passed away just before 1am on Monday morning.

I knew it was coming... I just knew. But I didn't think it would be so quick.

On Sunday when I got there, the only thing he said to me was to go to bed. Just repeating it over and over. As I was leaving I told him I was going to bed now. Night. Love you.

He said night love you.

About an hour later, he was said to have shouted my mums name. It's the first time he mentioned her. And I'm so glad. I hope it was because he could see her and she was waiting for him.

The nurses phoned me. I made it 5 mins before he passed. My sister didn't make it in time.

I don't know why I'm saying all this. I hate being upset in front of people so haven't spoken about any of that to people I know.

And it sounds so stupid. But I'm shocked. I guess I thought he was invincible. That even know my heart knew it would happen... My head kept thinking, nah he's too stubborn. He won't give in.

I don't know how to handle this.

And I'm scared at the funeral people will make comments.

Like even people I don't know I've seen on his fb page writing "how did he die" etc. What does it matter!?!

Im sorry. I'm just so upset and rambling but can't show it in real life x

ThreeSmiles profile image
ThreeSmiles in reply toLea224

So so sorry to hear that Lea ☹️ . I think you are very brave to come on here and tell us this. 🙏 for you to get through this as well as is possible in the circumstances.

Angus

davianne profile image
davianne

Oh Dear Lea, I'm so so so sorry for the passing of your Dad, I know it's difficult just now, but revisit all the good times you enjoyed with him. Memories are a very good way to keep him with you. My thoughts and prayers are with you and your Dad for inner peace.

Take Care,

David

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