Husband recently diagnosed with cirrhosis

[DogLoves]

Hi I'm new to this site. My husband has just been diagnosed with cirrhosis. We were just getting over the shock of him having lymphoma. He's just came through 3wks of radiotherapy and is doing good but we have both been left devastated with this new diagnosis. We were in shock when told and therefore feel we didn't get all the information we needed at the time. I knew I was being silly but decided to use Google and now I don't know what to think. All the info we have is that his fibroscan results 31.7kpa. Were told can't say his outcome but statistically 5years. He is type 2 diabetic too. I know this has been a lengthy thread but I'm just looking for someone who has or is in the same situation or any more help. I suffer from depression and anxiety and so might be overthinking but just can't get it out of my head that things don't look good for him. I want to get on and enjoy our time together but all I can think about is life without him and have been non stop crying. I have so many questions...please if someone can help

[Ewife]

Hello!Lots of people will hopefully respond to your post telling you 1) don't google!! 2) so many stories of living a long and happy life with cirrhosis, lots of ways the condition can be managed etc. Mainly this forum is full of positive people and positive stories.....we all try to encourage each other along 🙂

My husband is just 8 weeks post transplant. Everyones journey through this is different, but in essence we all get each other more than the rest of society does!!

ATB, Take care

Ewife

[DogLoves in reply to Ewife]

Thank you so much your message has meant so much and knowing there is hope out there and people out there going through a similar situation and I'm not alone is comforting x

[Roy1955]

Sorry your not getting replies and I have no knowlage that can help other than possibly his liver is involved in his lymphoma diagnosis and thats a question for his oncologist.I hope you can get some answers from his medical team.

[DogLoves in reply to Roy1955]

Thank you x

[Ericabear]

Morning, I googled when my husband was diagnosed nearly 2 years ago and I was devastated, fortunately Google is just so wrong, certainly when it is about cirrhosis. We are living life and making plans! If you are in the UK you can phone and speak to the British Liver Trust, their details are on the site. Write your questions and take notes when you speak to Doctors, it is so hard to take everything in. Trust in the process and do as they ask. A good diet, no alcohol and light exercise seem to be key. Wishing you well and sending a hug,

Liz

[DogLoves in reply to Ericabear]

Yes realising now that Google is not a good choice as always get the worst and different information. Hope you and your husband are coping well and thank you so much x

[AyrshireK]

I well remember the tail spin I was in 12 years ago when my fiance (as he was then) was diagnosed with cirrhosis completely out of the blue after we'd had to rush him to hospital after he began vomiting blood. It turned out he was having a massive variceal bleed and had decompensated cirrhosis (auto immune).

You hear terms like end stage and start seeing life expectancy statistics and it's terrifying BUT such things aren't to be relied upon. End stage just means it's the last stage of fibrosis not end of life. People can live long lives even with cirrhosis - hubbies consultant has repeatedly told us of patients he has who have had it for 20+ years and that's not uncommon.

My hubby has had it for 12 years and he's made the most of his life since diagnosis and only in the past 8 months or so faded to the point where tomorrow he'll be 2 weeks post liver transplant.

I hope you have some follow up with regards to this diagnosis - first of all to check the accuracy of the diagnosis.

Fibroscan alone isn't an accurate enough tool to provide a confirmed diagnosis. Ok you have a kPa figure in the cirrhosis range BUT hubby having recently undergone pretty harsh radiotherapy treatment which may have impacted on his liver and even swayed the accuracy of the fibroscan. Has he had an ultrasound or CT scan?

What are liver bloods showing? If there is any inflammation within the liver the kPa figure can be falsely inflated leading to a higher than accurate score - fibroscan notoriously can not differentiate between actual fibrous tissue and temporarily inflamed tissue. So the fibroscan result needs to be looked at alongside bloods and at least one type of imaging scan.

If it accurate then it's still not all doom and gloom. Providing the cause of the 'assault' on the liver is identified and addressed it is often possible to slow or even stop further progression of the condition and even potentially reverse some of the damage done. Having type 2 diabetes can be a risk factor for getting fatty liver disease which can go on to lead to fibrosis/cirrhosis but having cirrhosis can also cause diabetes which us what ended up happening to my hubby.

Don't convince yourself there is any sort of imminent demise. If it's a confirmed diagnosis there are often steps that can be taken to slow/stop progression whether that's treatment or lifestyle changes and it's still possible to live a life even with cirrhosis.

The British Liver Trust webpage on cirrhosis was my first 'goto ' page when my hubby was first ill. Dr Google 9 times out of 10 has folks thinking the worst.

Hope you both get follow up soon to discuss the diagnosis. For your appointments I suggest getting a notebook and before each consultation jot down all current medications and doseages, any symptoms or concerns and all the questions you want to ask and that way you avoid the scenario of going blank and not asking what you wanted to.

You've obviously gone through the lymphoma thing together and you can deal with this.

Best wishes, Katie x

[DogLoves in reply to AyrshireK]

Thank you so much for your message and sharing your story with me. It has given me a bit of hope and made me realise its not the end and has brought some calm for us both. We were in a state of panic as he had the fibroscan back in Feb 2024 and has taken us all this time to get results. We've tried several times to chase the results up but with no luck and to be honest had begun to forget about it as we were going through his lymphoma treatment. He had a lymph node removed 2wks after he had the fibroscan so not sure the connection to the lymphoma. All we were told was kpa of 31.7 and CAP 400 due to diabetes and obesity his bmi is 37 but nothing was said about bloods. He did get bloods taken and obviously had ct scans and pet scans due to his lymphoma but nothing was mentioned about liver. Hoping we get more answers soon x

[Breakfastbabe]

I imagine there are many of us here who have been through this or similar; the uncertainty, the hopelessness, the fear and the premature grief. I won't go into our details as my husband's situation is a bit different from yours. What I will say is that the BLT has helped us in so many ways. The nurses' helpline is amazing and they can talk through some things you don't understand and what questions to ask. The website is full of useful background information. There is also a regular carer's Zoom meeting which is really supportive, as is this forum. The main things I have learned is that I am not alone in this situation and to take each day at a time. None of us know what is around the corner but as carers we have been given the chance to consider what might be and to realise that every moment is precious and to be treasured. I appreciate my relationship much more now I know it is a little bit more fragile. I hope this helps a bit and that you get some answers. In the meantime, try and stay positive and stay away from Google.

[DogLoves in reply to Breakfastbabe]

Thank you so much for your advice. I agree googling is dangerous and after getting over the shock and reading stories on this forum has given me hope and strength to carry on with the time we have x

[Mufan99]

You have such good advice already. The only thing I will add is that for the Diabetes get advice about diet and monitoring blood sugars from a hospital dietician. If the liver is starting to struggle a bit the way the body uses energy can change. Snacks with carbs and protein are often recommended and for a diabetic that just feels wrong, but take the advice. It may be that the target blood sugar range needs to go up a few points. My partner found it a very difficult adjustment, but it is so important to maintain strength and stamina to be able to enjoy the present and, be fit and prepared for what may come up in the longer term. Also make sure the teams dealing with the various issues you are both facing are "joined up" and sometimes that does seem to be our responsibility, so the suggestion to take a notepad and pen and an up to date list of all medications to every appointment is absolutely right.

[DogLoves in reply to Mufan99]

Thank you for your message. Finding it tricky to adjust his diet but hopefully will get appt with dietician soon so we can be better informed x