understanding the journey

[Give-hope]

Hi, my husband was diagnosed with liver cirrhosis with portal hypertension last July. We have been advised his cirrhosis was triggered by sarcoidosis in the lungs. The journey to date has been a challenge and as a family we are struggling to support my husband as each day brings its own challenges- high and low moods, body aches, throbbing veins in the temples, severe fatigue. Even though it’s my husband who has been diagnosed, we as a family are living through it. The unpredictable behaviour is a challenge to deal with. I don’t have time to focus on my own health and am on verge of having a mental breakdown. The lack of understanding and consideration on how my husbands health impacts the whole family does not exist on his side.

He has been told he can’t even take flights abroad as the cabin pressure may negatively impact him due to his portal hypertension. The consultant has prescribed for meds for this. I wanted to reach out and appreciate other people’s journey and the challenges they have experienced and even some advice on how they overcame them.

[ARM8]

⁸Hi Give-hope, I am so sorry that you are going through this! My partner too didn't deal well with testing and being given bad result after bad result (we had many outbursts and I suppose that youd call them mini breakdowns ie throwing things, days of depression, having to cancel plans). We are now waiting for testing in April and I'm concerned about thse results and that it will set him off again into unpredictability. What I've learnt (obviously every situation is individual) is that you can't force someone to feel a certain way. I was trying to make us be social and carry on with life and open up to friends. This didn't always work for him around test results when understandably he didn't want to be around anyone in case of bad news. He has improved and we are currently having some kind of normality but me knowing when things (tests, procedures etc.) are coming to be considerate which has helped. However, it's taken over a year to get here and it also could change at any moment dependent on what the future brings. How is your husband acting? What does he say that he needs? You have to be considerate (which I'm sure that you are!!!) But he has to give consideration to you too!!! I would ask how you can work through this together, and put some rules in place that work for you both about how you deal with situations. AlsoI know that he can't fly but some UK short weekend breaks to break things up and try to switch off may help? You both need some respite. We've just gone to Dorset which had lots to do and was nice if you aren't too far away. Anyway, don't give up and I'm sorry you are getting the brunt of it at the moment! Xxx

[Give-hope in reply to ARM8]

Thank you for sharing. How are you and your husband doing? My husband has developed a further autoimmune disease- mercenaric panniculitis, this came suddenly after he caught an injection after getting some polyps removed. Does this mean that his cirrhosis is making him vulnerable and attacking his body in every shape and form? Normality doesn’t exist anymore. I try and focus on the good days/hours/minutes and go into autopilot mode for the bad days as there are many of them. Husband has isolated himself a lot, doesn’t go out much and doesn’t want people to come over either. To keep my own sanity I go out myself now with friends and family. When meeting consultants my husband comes out positive and says he will fight this and do what is needed to maintain good health, but when home he doesn’t take his prescribed medication, says he is too tired to go for walks and exercise. He has become emotionally sensitive at one level and then the other he is a very angry and unreasonable man. When trying to reason, he lashes out and says we don’t understand what he is going through and tells us to leave him alone. There is no reasoning with him unfortunately. His consultant has referred him for counselling as we suspect he is suffering from PTSD- we are still waiting for this to come through. I pray for happier and healthy days for you and your partner. Any advice or experience of your journey would be valuable. Xx.

[ARM8 in reply to Give-hope]

Hi Give-hope, I'm sorry you are going through this your husbands disease sounds further developed than my partners, we are fairly young (38) not that liver disease doesn't effect all ages. My partner has cirrhosis and slight portal hypertension (no idea how this works?).We are still working things through and being transferred from private to NHS as they don't treat cirrhosis on it as long term. I'm praying that it can be reversed some what now the assault of too much iron in the blood has been removed and no booze and healthy eating. We are under a gastro doc and not a hepatologist which I'm concerned about but he is nice to partner and understands that he hasn't been dealing with bad news well so I'm reluctant to push for change (as he said he'll see him under NHS).He's ridiculously up and down and I can resonate with the whole "fighting this" to feeling very depressed and scared.

I think both of us are taking it one step at a time (I say both as obviously it impacts us both even if it's obviously happening to poor him). I'm quite concerned about what's going to happen going forward on the NHS - the tests every 6 months etc as he just wants it all to stop understandably and go back to "normal".

Anyway, sorry for rambling which may not be helpful at all. From my side just keep doing what you are doing and take some time for you. I hope he can get some nice times in life. Is he / you both able to get a weekend (or is he too ill?) away or some nice days out (for just the two of you if he's finding people hard at the moment) or even nice drives out?

Also, I may also come to you for advice at some point dependent on your experience re portal hypertension and treatment. The doctor currently says its mild and may go away which sounds a bit bizarre to me but at the same time wants to do an endoscopy.

Take care.

[AyrshireK]

Hi Give-hope, I know that when my hubby was first diagnosed (in April 2012) and for the first few years he suffered from what was labelled an 'adjustment depression'. It's a huge deal (for you both) to have such a serious illness appear - for us it was completely out of the blue so a huge shocker.

Your hubby could have an element of this going on but also has he been checked for Hepatic Encephalopathy? This is a side effect of cirrhosis and can cause personality changes, confusion and more. My hubby has been being treated for this since day one - initially with lactulose then later Rifaximin and recently L'ornithine L'aspartate (LOLA) has been added.

Throughout my hubbies illness we have been very much a team, I have attended every single appointment with hubby and to be honest without my support and input he would have not only struggled but actually failed to have understood or managed his condition. I have basically done all the management of hubbies condition and he has just concentrated on getting on with life.

In recent months hubby has become even more seriously poorly and he has needed basically 24/7 nursing care, I haven't been able to leave him home alone and after his recent transplant assessment and listing I am now basically nursing him - managing his nasogastric feeding, new insulin regime for diabetes, I am having to bathe him and dress him on occasion. We joke that he is 'milking the in sickness and in health' vow. We are keeping on keeping on.

I married my hubby after his diagnosis so this has been part of our life since day one.

Katie

[Give-hope in reply to AyrshireK]

Hi Katie, thank you sharing. You seem to be doing an amazing job supporting your husband. My husband was signed off work to allow him to build a route for himself and focus on his health- healthy diet and exercise . Prescribed protein drinks to help rebuild all the muscle he had lost. He has being housebound and doesn’t like going out, which is the complete opposite of the man he used to be- won’t socialize with friends or family- he says it’s as a result of his fatigue. He is not exercising and still plenty he can go to maintain a healthy diet. He is not open to any support or advice from me or my boys and does not like to be corrected. He had some polyps removed a month ago and since then he has been unwell. He picked up an infection (likely to be during the procedure) and was prescribed antibiotics via the ambulance paramedics. He has continued to get regular fevers and this severe pain in his bottom left side of his back which travels into his stomach- or vice versa. He refuses to go to A&E when the pain become unbearable. On the one occasion he did agree, they gave him one off morphine for pain said nothing appeared in his bloods or xray. He has been getting massage and been to see a chiropractor in the event it’s muscular- but nothing has helped. He is now struggling to walk. We finally have a date for an endoscopy which hopefully will detect the cause of the pain. Has anyone experienced anything similiar. ? Wishing you and others in this journey strength, positivity and good health. X

[KingsKidEveryDay]

Give-Hope

I have NAFLD. My husband and children have been my constant source of love, help and caring. They have seen me at some really low points.

Surgeries, drains, HE. It is hard on caregivers and hard on us as we are dealing with a new way of life.

I just want to say to you and all caregivers how much you mean to those of us that are sick.

God will see you thru on good and bad days. If you are a believer. He can give us strength to make it through.

[Give-hope in reply to KingsKidEveryDay]

Thank to for sharing, I just there was more we can do for my husband, it’s hard to see him cry in pain and question God on what he has done wrong to deserve this- asking him to take him away and end the suffering.

[KingsKidEveryDay]

In my darkest hours I questioned God also.

Anger, pain, loss of a life I knew…

I am learning a new life now. Still pain on and off, trying to work out BM. That’s been fun. 🙂 a host of other problems.

Look for ways to laugh, hug and move forward . You can benefit from a care group, for your mental and physical health.

We are all here for you.

I try to remember in our trails, we have a testimony to share.