Reading all your helpful posts I realise I have no facts about my husband's condition. You quote test results, levels etc, and we have nothing. Could be England vs Scotland or USA vs UK,private vs NHS, but we've not been given anything.
He went into hospital recently with ascites and I think classed as decompensated, but now he's discharged I haven't any idea.
what should I be asking for? Or will it just make me worry? Do you always get results of blood tests?
Hubby still drinking, test results might shock him into action, or just make him think he's got too much work to do to get his life back.
any advice gratefully received. Thanks.
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MrsWorried
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Hi Mrs Worried, just to let you know that my hubby in 10 years of diagnosis has never received a single set of blood results from the hospital and only one from the GP when I specifically asked for them. We do get printouts of all his scan reports, endoscopy reports etc.
Ideally you want to be attending appointments with him so that you have two pairs of ears listening to doctor, note down all questions you want to ask before you go and make sure you get the answers you need.
Hubby and you should have been told where he's at and what he needs to do to continue getting better. Obviously he 100% should not be drinking and sadly if he continues to do so he will get worse.
Thanks Katie, he's now under a different consultant so I'll go armed with my questions to the next appointment, whenever that is!! There's definitely a lack of joined up thinking between in and out patient, and GP
you do quite often have to push for full results. At first my letters after bloods and ultrasound from my gastro consultant were only 2 sentences long. !!!! And I was left wondering what stage I'm at and worrying. But I contacted her secretary saying that I wanted a more detailed reply.....and it worked letters and results since then have been far more comprehensive. Although its ok having the results, they have to be put into some sort of perspective....that some folk might not be able to do,so my gp always says things in layman's terms for me.....which is so helpful and good of her to take the time with me. So ask away,and as Katie has mentioned write down any questions you may want to ask as and when you think about them. I'm sorry you're husband is still drinking,its one hell of a battle to fight it. It was the dramatic shock of a really bad variceal bleed in the middle of the night that made me stop instantly,and being in hospital.
All test results appertaining to me are for my consumption. I initially spoke to PALs to clarify this. Obviously there are some scan results where it is essential the consultant speaks with you first. The last thing you want to do is 'Dr Google ' phrases and words.This can lead to panic attacks / stress etc ....However I now receive all blood test results via Patient Access and Gastroscopy reports on the day ( explained by the nurses)
My aim is to have through record of my health since diagnosed in 2004. This can be time consuming and painful if you're not well enough to chase.
Ensuring results are shared with the right people promptly can only be of a benefit to your health. This often means liaising with your GP/ receptionist_ nurse; your Hepatologist and Gastro Admin team and your Liver Transplant Coordinator. Some hospitals have there own database where your results are stored. Make sure you get access. Of course in an ideal world this would all be done for you. Obviously if you you are too ill ( most are). Then this process becomes a challenge or impossible.
Thank you, we've got a lot of blanks. Was hard enough finding someone in hospital to talk to let alone share hubby's results. Given his confusion, poss HE, he couldn't remember what he had had done!
I felt the same so I signed up to the nhs app and asked my doctor to give me access to my test results, which he did. I only did this last week there’s a lot to digest but it’s a step in the right direction. At least you have a starting point. All the best
Hi Mrs Worried , here's what I did if it helps... I decided to get mine done private came out of hospital with ascites and felt all alone , other than a nutritionist sending me a letter that was it, so I took it upon my self to read up as much as I could about this disease. I then had tests done every 2 months by an online company thriva so I could just understand what's was going on. (Cost was next to nothing )
Happy to say after 7 months I am now decompensated and when I did see my heptolgost I took my private results with me on a spreadsheet to compare with there's. I still have the thriva tests done but not so often now as I like to know what's going on down there.. anyway good luck to you Paul
We went through the same with my son - no one was telling us anything and l different departments s not communicating with us or each other . You are right -we felt like things were being done to Stephen and we didn’t know what or why . Like others have said we started being pro active . I sent letters to his GP rang consultants secretaries and signed up for the NHS app and Stephen gave me permission to have all his health records on my app as a linked profile . The records go back to 1984 when the surgery opened ! Now we can check his blood results appointments and medication . I send emails to the surgery if we want anything checked - if we phone it just rings and rings with not one answering .
Have you got family or close friends who can help you ? We’ve sorted out jobs between us - I do all the admin his wife does the daily caring ( she has the hardest job so I feel for you ) and his step daughter takes him for appointments and sorts his medication and bosses him to try and keep positive .
Posting on this forum has really helped us - Katie and lots of others give great advise and support so keep posting .
I also keep a note book with questions to ask - contact details - appointments -and I keep a spread sheet of blood results . A bit obsessive I know but it’s my way of coping and it helps to know we are fighting this together .
Thinking of you and hoping you get some answers . Some people tend to forget how hard it is for family who are caring for loved ones . Take care and try to look after yourself . Carol x
Thank you Carol, I wish you and your family well.
I'm doing this on my own, we're married, kids on both sides from previous marriages but the alcohol has ruined relationships. Too many broken promises and too little sense of forgiveness, indeed none of my friends can truly understand why I'm still involved. Been quite a stormy ride.
I've not heard of the NHS app so will investigate. Hopefully when he has his next outpatient appointment with the new consultant I'll learn more, and find out who's managing his care. Them or the GP? So far I have no contact details for the consultant and his team.
hi -pleased you’re keeping in contact on this forum . You can ring the hospital and ask to be put through to consultants secretary - they’ll tell you about appointments and can pass messages on to the consultant . It’s good to know their names - the secretaries can be very helpful . Sending you a virtual hug Carol xxx
i have access to all results online, Addenbrookes use mychart where I get blood results the same time as my transplant consultant also used for letters and contact with transplant team. My GP used system online where I have access to my medical records. However my local hospital doesn't let me know blood results without a fight.
I keep spread sheets of all my blood results so I can minutes them, it's gives me comfort seeing them.
You're very organised, glad you can keep track of your health. I wonder if they are less inclined to pass on test results, or even do all tests, if hubby is not helping by continuing to drink and barely eating??? It's quite hard for outsiders looking in
Whilst the doctors will do all they can, your hubbies health is going to continue going down hill whilst he fails to comply with abstinence etc. At some point he may reach the point where there are no future treatment options - transplant will be ruled out as the patient needs to be sober & fully compliant even to be referred for assessment. It used to be that they needed to have a proven minimum 6 month abstinence with a continued commitment to life long abstinence thereafter - this has recently changed but sobriety at time of assessment and full compliance with all medical regimes plus alcohol services is the only way someone will get on the list.
I really don't know how you partners go on when they are supporting a loved one who doesn't do all they can to get well or whose addiction has such a complete hold on them. My hubby didn't have the chance to stave off his liver ill health and even today still pushes and pushes to keep himself as well as he can. If a doctor told my hubby to stand on a hospital roof and sing the birdie song he'd do it if he thought it would help.
It is such a shame that alcohol causes the misery that it does. I don't know whether you've found Al-Anon ? They provide support for those who are affected by a loved ones drinking. al-anonuk.org.uk/
Katie, I love that picture of your husband on the roof singing!! It's so heartbreaking when a patient does all they can to improve things and the illness remains stubbornly in control. We're at the other end of the spectrum, he's been told so many times what he can do to help himself and has access to addiction support etc but it has such a hold over him he cannot break free.
No Al- Anon in my area and he would be suspicious anyway. I'll just keep on muddling along xx
Yes, I've had a look at them but there's nothing nearby and anyway it would be difficult to go, he hates me being out of the house. Online might work if he were sleeping but he would feel betrayed if I was telling anyone anything about the situation. Just like this....
I really feel for both of you. Your frustration,the completely overwhelming addiction your husband has.....I wish folk could put themselves in our shoes....ive been one of the lucky ones.....I was able to stop drinking 3 years ago......but for some,its even harder than it was for me....and that was dam hard!!. But I do share your desperation....I've done all I possibly can to help myself,no drink,good diet,walking everyday ...making it to all my appointments...I've my flu and covid jab tomorrow....more bloods on friday... take allmy prescribed medication. Keep my self busy. Sounds as though maybe you need abit of time for yourself....love,you are equally as important in all of this...you need to look after yourself.
I don’t know about others but some of us have PBC. The PBC Foundation ran a ‘know your numbers’ campaign a few years ago, so that may be why we know them and talk about them. When you’re living with a life long chronic condition you tend to become quite vigilant and knowledgeable about your illness. Don’t feel bad about not knowing you’re husbands, but ask the consultant or liver nurse to explain what you need to know
No but obviously their campaign about knowing your numbers and being your own advocate when managing your health condition is. Very important to get some knowledge so you can ask those pertinent questions & make sure care is of the appropriate level and standard.
I GET A MEETING WITH GASTRO DR EVERY 4 WEEKS HE GOES THROUGH MY BLOODS WITH ME AS I HAVE A BLOOD TEST EVERY WEEK I SURE IF YOU ASK THEY WILL GIVE YOU A COPY ALSO WHEN I COME OUT OF HOSPITAL I WAS GIVEN A BOOKLET OF WHAT TO EAT AND WHAT NOT TWO THEY GO THROUGH EVERY DETAIL WITH ME I HAVE A DE COMPENSATED LIVER DIEAESE THROUGH ALCOHOL I WITH WARWICK HOPSPITAL WARWICKSHIRE STOPPING DRINKING AND A LOW SALT DIET ARE THE MAIN THINGS TO CONSIDER TO GET BETTER
You definitely made a good decision to visit this site but may I firstly say, please don't get bogged down in the astonishing detail some sufferers and their family share about medical results.
The simple answer to your core question is this - yes you should be worried, but more importantly so should your husband.
Ascites isn't a common cold that can be shrugged off, nor is a decompensated liver. This is serious stuff that points to a rapid decline if your husband hasn't taken a long hard look in the mirror and realised that the drinking has to stop.
For his benefit, I must emphasise the word STOP.
You mention your uncertainty about whether you should be getting blood test results. Absolutely definitely!
I am concerned that as your husband is the patient, the confidentiality that he is entitled to may mean that he is withholding the truth about results rather than him just not getting any.
Alcoholism is a disease that can become a selfish condition where the drinker is prepared to let those closest to him suffer just so that he or she can keep drinking.
your husband needs a wake up call because right now his life is not good and most importantly, neither is yours or you wouldn't be here. He needs to realise that his inevitable decline will result in frequent hospitalisation, reliance on you for care once he is too sick to function and a life of painful regret and misery ahead.
I think now is the time for open conversation with him. Some honesty about his situation and what action he is going to take to make life better for both of you. He owes you that.
you sound like a wonderful and caring person. I wish for you to enjoy a much improved life together and the strength to encourage him to choose the right path.
Thank you so much for those wise words, written by- I imagine - someone who knows the situation all too well.
It is very hard to get hubby to talk about it and to take an active role in his disease. It's as if he doesn't want to or can't fight.
I am already caring full time for him, and he's been in hospital 5 times in past year. Somehow he's not understanding the seriousness of the situation . Or he's ignoring it......
Hi - I'm more than pleased to offer any support I can. You are clearly further up the track than your initial post suggested in so much that you are already a Carer and his hospitalisation on too many occasions is a sad indicator of how deep his denial is.
Whilst this is classed as a Disease, it is one that can be taken control of or at worst, at least acknowledged. His failure to acknowledge it...and I hate to say this because you clearly love your husband.......is little short of selfish at this point.
Sometimes pity has to be replaced with harsh words if that's what it takes to jolt a reaction. For you it must be hard to believe that a jolt of any description is necessary when he is lying in a hospital bed without anything other than metaphorical flashing lights saying, "You are killing yourself". To you it's obvious, but it astonishes me how even highly intelligent people refuse to accept the severity of the situation or that they have an addiction.
I actually heard such a man lying in a hospital bed near Christmas who had just undergone liver related surgery ask his consultant what alcohol would be "safe" for him to drink at any Christmas events! You can imagine the response.
Another consideration for you and for him is that if he keeps drinking, he will never make it on to a transplant list. For good logical reasons new livers don't get handed out to someone who is going to continue abusing. If needing that chance, that hope for life is something that matters to him he needs to consider his strategy.
Brutal as this is, and I do not know the circumstances of your life, but you must at some point put yourself first. If he will not at least meet you halfway, please think about your own future and your right to joyfulness. You are entitled to it.
I really feel for you, I truly do. The new Consultant could try and put the fear of God into him, but it might be that very fear that is forcing him into denial and the loneliness he might see life to hold without alcohol. At arm's length I'm struggling to be as helpful as I wish I could be.
You alone sound like enough to live for and should be motive for him to dig deep and come out fighting. Children, family, friends should all have a value but I'm guessing all of these reminders have been presented to him.
Alcohol is not a friend - just a passenger, but all too often a passenger that weighs heavily and brings nothing positive. Losing the needless passenger and finding the uncomplicated satisfaction that comes without it must be the goal.
There is little point thinking too much about the past because that is what has got you both here, him by choice and you by default. Perhaps if he thought the future might be spent without you as his obliging carer, he might get the shock he needs? In my experience compassion has an expiry date that must be leveraged to get a response.
Others reading this might think those words are harsh but in my experience the phrase "to kill with kindness" can often be painfully relevant.
Dear Mrs Worried, I worry that you cannot - and should not - be the person counselling your husband. You need support. Can you find a third party - doctor, consultant, family friend - who could help explain to your husband what he is missing out on? I just gave up alcohol after several years of mis-use and I am only starting to realise how trapped I was by alcohol. And I am only starting to realise what I was doing to my family. I really feel for you. Try and be good to yourself. X
Thank you Cornwallgal and huge congratulations for getting your life back on track.
It would be easier if I knew someone he would / might listen to, but years of doing what he wants, not what he's told to do, makes it an added complication. He's prided himself on always taking things to the limits, just this time the way back is not as easy as he hoped....
Dear Mrs Worried, that makes total sense, unfortunately. I admit that I would not listen to my poor husband and hid myself away from others. I was frightened into taking action by a doctor. He made me realise that my current path was a decline towards becoming very ill indeed. The other path would be hard but would save me. Can you ask your GP or the hospital doctor talk to him? How he is given any test results could be crucial. As an addict (a term I hated, but it is true,), he needs help, not critical judgment from the health service. So, I hope you can find a good, supportive doctor. Sending you hugs. It must be so tough for you. X
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