Hi. I’m new here. I’m from the states and have been on the internet for the past 2 weeks straight and no matter where I turn I can’t get any straight answers.
My dad is in the hospital for the second time this month. His bilirubin was originally at 22, now it is at 42 (this is the measurement im given but I know there are different ways of measuring so idk what this means but that it is very high). My dad is incredibly yellow. His urine is the color of tea, he sleeps constantly, he seems dazed/confused, and has very diminished appetite. He can eat some times but other times it causes extreme stomach pain/cramping. There is some fluid but not enough for the doctors to drain. They said there is also portal hypertension. His other levels like creatinine are supposedly “close to normal” but seeing him this is hard to believe.
My dad has been an immensely heavy, daily drinker for 10 years. We almost lost him 2 years ago when he was diagnosed with decompensated cirrhosis and given a MELD score of 29, yet he made a miraculous recovery and was doing OK for the first year, but ultimately returned to drinking in the second. I know he was drinking heavily again recently and that has brought us to where we are.
They can’t get the bilirubin down, and even though there is no proof of infection they are treating with antibiotics. I have tried asking the doctors what is going on, and what is the prognosis. In short, I want a clear answer if he is going to recover again or if I should be preparing for end of life, but the doctors say short to nothing-the last thing they said is that “palliative care is only called once they have exhausted all options”. Can someone please give me some guidance as I am a young person, single mom, studying at a prestigious school and the sheer unknown of this situation makes it impossible to manage both practically and emotionally. Thank you for all who read this far.
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Sof336
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Sorry to hear about your dad. However it's 03:45 here & most members will be asleep. I personally have not experienced any of the acute symptoms you describe. Though we cannot offer a diagnosis those who have or have had similar conditions can offer relative advice & support online later am/pm.
Best wishes meantime.
PS I should add don't Dr Google it can be misleading / confusing.
I'm so sorry you having to go through the heartache of watching someone you love kill themselves with this gut rot. His condition is obviously severe, but its true what the doctor's say... they will never give up trying to save your Father. My husband was in intensive care for 10 days, severely yellow, failed liver and kidneys but they still wouldn't give up on him and admit they could do no more for him until the day he actually had to let him die. I'd like to put out there again that the care he recieved at the Norfolk and Norwich university hospital was 2nd to none. Thank god for our NHS.
I would say stay off google, dont waste that precious time, spend it with your Dad instead while you still can . You have an awful lot to cope with right now but he will be so proud to know you will concentrate on your child, your education and make a good future for yourselves. Put your faith in the doctors they will be doing everything they can but you do just have to let nature take its course.
Alcohol is a bastard, for something which is portrayed as nice to drink, loads of fun when you're rolling around drunk, par for the course when your chucking up with your head down the toilet and suffering the hangover from hell, it causes nothing but severe illness to the drinker and heartache and misery for the nearest and dearest.
I wish you strength and offer support as you go through this hell and come out the other side being able to face a better future.
Good luck
Laura xx
Dear Sof336
Firstly welcome to this amazing forum of very caring and loving people who truly understand how you must been feeling! Some have been in the same position as your dad and have survived, however, they only survived because they stopped drinking the demon alcohol
totally when they knew they had cirrhosis.
Unfortunately for some it was to late for them to receive a liver transplant
due to other medical complications or there age being beyond 70! I write some are still suffering with extreme pains. Some members were lucky to receive the special gift of a Liver transplant and now spend hours on this forum helping and advising others.
I'm sad to say I cannot ease your pain as I've been in the same situation as your in now, I lost my first husband at the young age 56 and my very best friend who was only 42 to cirrhosis caused by drink. I was a young mother with small children like yourself but also had sick parents at the time who both then died so I can relate to how your feeling.
None of us on here are medically qualified to answer your question, we can only give advice based on our experiences.
To me, based on what you've written it sounds like your dad's in a very bad way and if palliative care has been mentioned
then you may have to prepare yourself
for what may lie ahead !
My final message is to say try and keep focused on your children and most of all YOURSELF because you have an inbuilt strength to survive like many have on this forum. Your dads life is now in the hands of this amazing medical team who are trying there very best to help him.
Sorry another last word, there's an amazing helpline run by British Liver Trust run from Monday to Friday 10am to 5am who advise people and families in a similar situation to yourself, why dont you give them a call? You'll find there contact details on there web page.
Please take care of yourself and remember there's always someone on this forum who understands and is here for YOU! You can scream if you like, write when your crying or you may just want to keep us updated whenever!
I can only reiterate what the others have said. Yes, it does sound as if your Dad is in a very bad way and there is the possibility that he cannot be saved but only the doctors will know that once they have exhausted all treatment possibilities. Perhaps though he might get better, but if so he will have to stay away from alcohol for ever and he must understand that.
Your job, my dear, is simply to be there for him. Take the time you can to spend with him. Show him that you love him. Take comfort in your child(ren) and remember you can do nothing to resolve the situation, it is in the hands of the drs, and God. You must be strong but also rely on those around you for support. I don’t know how old your children are but hugs and cuddles the best thing for giving you strength.
Wishing you all the best and please don’t be a stranger to this message board,
As everyone has already said, the doctors will use all their knowledge and resources to help your father.
My bilirubin was 217, MELD 34 and permanent antibiotics after contracting Peritonitis. My ascities was regularly drained from between 8-14 litres.
I was assessed for and received a liver transplant. But it requires 6 months total abstinence along with a host of other factors to meet the criteria. You also need to commit to a lifetime of abstinence.
Your father needs to acknowledge that alcohol is the problem and needs to stop to give himself the best chance.
I am really sorry that you find yourself in this situation.
It's very upsetting and frustrating for you when you know what your father needs to do as regards his liver health but you are on the sidelines watching him make the wrong decisions.
You have received some very good information for your father from forum members.
The only thing that I can think to add is that if he does change his ways, cut out alcohol altogether and eat healthily, little and often and drink plenty of water to help flush the toxins out of his body this can have an amazing affect, as you have seen when he gave up alcohol before!
There have been many people in the past that have been in a dire situation through drinking excesses of alcohol that have managed to reverse things enough to enable them to be able to be accepted on to the liver transplant list, or at the very least to stabilise their condition.
That side of things is of course in your fathers own hands. He is the only one that can change things.
I really hope that your dad can manage after this latest episode to make the right decisions, for your sake as well as his.
Wishing you the very best outcome that can be.
Alf.
I'm so sorry to hear about your Dad, I think everyone's covered everything but would like you to know that I'm thinking of you and you are in my thoughts and prayers . Love and hugs Lynne xxxx
You and your father are in my thoughts and prayers. Unfortunately, no one knows if your father will recover, but surely if he doesn't stop drinking, he will not be long for this world. I'm very sorry you have to watch this happen, it isn't even a question of if, it's when. I have been in your shoes, many of us have, please don't hesitate to write more. With much love, xx
Good afternoon Sof336,
I can see you are getting lots of support from out lovely forum members.
I have simply added information on cirrhosis and living with liver disease to guide you.
Hi Sof336, I'm also sorry to read all that you are dealing with regarding your Dad's deteriorating health. I agree with all of the other posters' comments but wonder if there is any discussion amongst the medical team to introduce diuretics to rid of some of the fluid build up, if that is an option at all. With my husband, once the ascites was dealt with (draining and now diuretics), his appetite improved, there has been far less discomfort and breathlessness and an overall improvement. Your Dad quit drinking before and I hope that he can try to find that motivation again to do so. In my husband's case, abstaining has made a significant difference to date. Very best wishes for better days ahead.
Ugh my heart hurts for you. I just went through this with my dad who passed a couple months ago. He wasn’t a drinker but made some mistakes in his 20’s and shared needles so he got Hep C and because meds didn’t have a good cure rate for many years he put off treatment and then ended up with cirrhosis. He tried to stay healthy and did what he could but cirrhosis is just such a terrible disease. He was only 57...Anyway I’m from the states too and this was the only place I have felt I could come and be understood on this level. As most have said only the doc can really say what they think and they will do everything they can until they have no more options...With my dad it happened so quick, in May he was completely fine and we had no idea how sick he was about to come and then in June he was a completely different person. He got a little better after that but had no energy and then slowly over the next couple months he declined until his liver and kidneys failed. They couldn’t transplant because his liver had cancer that spread to other organs and to his brain. I can’t tell you what’s going to happen but I can tell you that my dad experienced everything your dad is experiencing in his last few days except jaundice. My dad never dealt with that for some reason. I’m sending prayers for you and your family and I’m here if you need to talk or have any other questions about what we went through. *hugs*
Yes. I completely understand. My kids lost their Dad when they were 11 and 17. My daughter said last year she couldn't remember anything about him other than him being ill which is very sad. I then got the huge box of holiday photos out to show her we had had a short but very happy time with him prior to alcohol taking over completely. You have to grab as much from life as you can, as you say it is way too short.
Thank you to all who answered. The amount of support in this community is overwhelming. The confusion on my part remains, unfortunately, and my father has grown no better or worse. As I said before, it’s confounding as he is suffering from severe jaundice but the other blood work “appears OK.” I have known since his diagnosis 2 years ago that his time would be limited in some way, it is just so hard that the actual limits are unknown. In some ways, I fear him making it through this tough time and coming home just as I do losing him, because I know that we will just inevitably end up in the same place again.
I hope to continue to post about my experiences on this forum and maybe even one day provide my own insights to others. This is a great resource and I wish I had known about it sooner.
Well your dad sounds like he's treading water at the moment.
Maybe if he makes it through this he will realise that …….'No' it wasn't worth going down the drinking path again just because his body seemed to have recovered from the first trauma!
Hoping that this is the time that he really gets to see the light and accepts that alcohol must be history if he wants anything like a normal life.
Thinking of you and wishing you and your dad all the best for the future.
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