Worried Wife!!!

[POSITIVEMUM3]

Hello

Thank you to all of you who have previously replied. This place is a godsend. I know from when my son was diagnose with Crohns that the forums I was on were amazing and this one is too.

Hubby wasn't doing too badly but Spiro reduced to 200mg and ascites seems to be onthe way back with some leg oedema. His hands are sore dry and itchy. He has elbow bursitis. GP saw him yesterday as he is struggling and said he eemed slower etc than last time. Hubby admitted was struggling mentally with it all. He is very very tired and sleeping a lot in day but struggling at night.

GP is writing to consultant regarding it all and I have just acquired number for liver nurse at hospital.

My concerns are:

Ascites return

Has he got any level of HE?

Have any of you gone back to work successfully?

He's 50 as am I and a long time to work yet!

Albumen at 23 and not changing

He's fed up

No muscle strength

I guess i am hanging on to hope that there may be a way forward.

It is stage 4 alcoholic liver disease and he is nearly 5 months sober.

I'm a teacher but been off since October - tring to get back to work.

Thanks for any any help advice support etc

[Hidden]

Hi PositiveMum,

It's good that your husband's GP is coordinating with the Specialist to keep things current and addressed.

Besides the Spironolactone dose your husband is taking, has the Specialist suggested Furosemide? My husband takes that along with the Spiro. His ascites is still staying away with that combination. Some others here seem to also have been on both. Maybe worth the enquiry.

Some days my husband says that he is fed up too. He's been doing quite well but has had a few fairly bad days in the past week or so. False alarm heart attack and some other newer things that had me buy some lactulose. The bright side at least is that neither your husband nor mine sounds ready to surrender to the bottle. Great news about your husband's 5 months sobriety to date!

I do hope that the next specialist appointment is soon and that they can get your husband on a more helpful regimen.

I keep purchasing new creams to try for my husband's dry skin issues. The prescriptions initially prescribed long before cirrhosis diagnosis really didn't help so much. If you search within this site for dry skin or itchiness and similar, there are a lot of suggestions.

I'm sorry that you have so much to worry about and that your husband feels so unwell. We were where you are not long ago and things can improve.

[POSITIVEMUM3 in reply to Hidden]

Thank you so much. The consultant mentioned fusedomide but go wants consultant to sort as BP quite low and worried it will drop it more. He has lots of stuff for hands and they are less dry but still sore. Consultant put him on zinc for it.

Just want things to improve so he can work again!

So tough but thank you for the hope

Karen

[alfredthegreat]

Hi positivemum3,

Pre transplant my Albumin was always on the low side and my liver nurse told be to include eggs in my diet as there is a high amount of Albumin in egg white.

Also my ascites fluid was up and down and so I had to increase and decrease tablets accordingly. At one point I was on Spironolactone and furosemide at the same time.

I also had dry and itchy skin and this is quite a common symptom of liver disease as is nodding of in the day but having difficulty sleeping at night.

After transplant I got bursitis in one elbow after a fall. It went away by itself but it took about 2 months to go completely.

Hopefully your husband will get his appointment through very soon to see a liver consultant and he can be assessed properly and receive whatever treatment is required.

Very best wishes to you both.

Alf

[POSITIVEMUM3 in reply to alfredthegreat]

Hi Alf

Thanks for your reply. He has been seen and is in Spiro 200 thiamine vitamin beta blocker lactulose. He has had one drain for ascites. Albumen is 23 and not moving. Other bloods are pretty stable but obviously not right. The GP has been amazing but I have only just got hold of the liver nurse number so am going to call her. Not sure if need another drain.

Mentally he's fed up too so it's tough. He's only 50 so should have loads of life to lead but this has had an incredible impact on all of us. Just wish I knew how or if or when things may improve. On top our 21 year old has Crohn's disease diagnosed 9 years ago so I already have one long term health condition to deal with!!!

Thanks again

[ThreeSmiles]

Hi positive

I can’t really add to what others have said and I agree with their comments 👍.

What I would say say is that I can see you would like your husband to go back to work... what happened to me was that I felt so ill but didn’t know why and I didn’t want - for some strange reason - to get signed off long term, so I just resigned. Stupid stupid stupid thing to do. No medical severance, nothing. At that time I had never heard of things like PIP (and maybe others) and, because I had already taken out an early, very early, pension from previous employment I didn’t seem to meet the criteria for the standard out of work benefits.

What I am trying to say is:

- Liver problems may/do take a long time to resolve

- Don’t let him resign! (Even though he may want to...)

- If money is an issue (isn’t it thus for all of us) get advice on what you can claim! PIP, etc...

- Try not to let him rush back to work, only to struggle

My wife is also a teacher - she went back to work, I was OK at home by myself, provided of course I wasn’t having an HE episode....and I felt she should go back to work for her sanity as much as anything else!

The above is just what I have experience of - please take proper advice from “professionals”.

I do hope he improves soon. It can and does happen!

Good luck

Miles

[POSITIVEMUM3 in reply to ThreeSmiles]

Hi Miles

Thanks for your reply. Hubby is signed off and is thinking about options re work but currently being paid salary etc. I changed schools and went part time this year so as I'm in a new county etc my pay has dropped to sick pay only. I also tutor privately. Lynne told me about PIP so I will look at that.

Going back to work could be good for me it's just the pressure of teaching take up so much physical and emotional energy not sure I can do it yet especially as hubby has ascites back by the looks of it and oedema. Don't think he's got HE but I'm not sure! Just feel for him cos at mo he's back to being unable to do anything.

Been a shock how much it's impacting life!!

Thanks again

[ThreeSmiles in reply to POSITIVEMUM3]

Hi again positive, understand - it is hard to deal with everything at these times....my messing about lasted four years before TP. Some of that, well a lot of that actually, was due to indecisiveness at our local Hospital 👎. Once I got to QEHB it was a different ball game!

Hope your problems are sorted out a lot quicker than mine were, I’me sure it will be 👍 (I was an anomaly 😑)

God luck again

Miles

[Dizzie14]

Hi my husband is similar to you and I have to work. Mine retired 5 years ago on a private pension but not enough to survive on and he wants to return to work but is no where fit enough and has started drinking again. I know .... he is a danger to him self and fell yesterday. It is so tough being the loved one but this sight gives us assurance thank you.

[Hidden]

Hi,

Why don't you call our nurse led helpline on 0800 652 7330 and we can have a chat? Its open Monday to Friday 10am to 3pm

Warm wishes

Trust1

[POSITIVEMUM3]

That is on my list of jobs today as you were amazing last time I rang. Thank you

[Hidden in reply to POSITIVEMUM3]

I thought we may have spoken before! Look forward to speaking later

Trust1/Rebecca