Update on my Vent

[Bs1524]

Well after my husband seeing GP under protest and her calling yesterday to say if he felt unwell just come in?? We went back this morning and she said his blood result were down and she was sending him to hospital to have fluid drained. Off we go five hours later having had more blood taken, ecg, etc seen by junior doctor, notes taken cannula inserted in arm we finally get the senior doctor who said not sure there is enough fluid to risk draining well along comes a more senior doctor with a portable scanner and he feels not enough fluid and diuretics should do the trick. GP recommend taking an extra frusemide on Wednesday so we shall see. However, this has shake. The GP up and alerted hospital also they said his blood work was down because of his haemorrhoids had been bleeding and they should be treated, finally the GP last month ignored them.

Husband has agreed that despite the worry and fright it has given him it was worthwhile and he was sorry for how he has been. Last night he frightened me with a strange episode accusing me of having an affair which he also apologies for this morning. I actually thought he had totally lost the plot.

Sorry for going on been a bit of a day and something Kevin said was so true if the senior doctor saw you first a lot of time and effort would not be wasted.

Pam c

[Hidden]

Hi

That is so true. Also, if they did the more expensive test first,there would probably be more people that are still with us and it would also cost the NHS less money in the long run!! Love and hugs Lynne xxxx

[ThreeSmiles]

Hi Pam

Sounds to me that Kevin has been having HE episodes.... just speaking from my experience and not with any medical expertise as you know. Sometimes when you’re in that state you can have all sorts of things going on in your head and when you “come around” you cannot distinguish reality from fiction caused by that episode. Horrid times.

I am so pleased he thought it a worthwhile if lengthy experience! Hopefully he won’t be such a reluctant patient from now on 🤞🤞.

Miles

[Bs1524 in reply to ThreeSmiles]

Really hope so I am exhausted but relieved that the hospital and GP are now aware and engaged although no one seems concerned about HE and apart from the consultant mentioning that when he was in hospital they wondered if the was any HE it hasn’t been brought up since then. I think his biggest problem is lack of sleep and the when he tries a sleeping tablet it doesn’t work either. Is not sleeping a common problem?

Pam x

[AyrshireK in reply to Bs1524]

Sleep disturbance is my hubbies most obvious symptom, he can go to bed exhausted and the minute the light goes off ping he's awake, over active brain and can't get off. Or he'll go to bed and fall straight to sleep wakening 4 hours later (always 4 hours) and again he'll not get back off. It leaves him washed out and miserable and unable to plan ahead - we just have to wait and see what each day brings and what sort of energy he has. We haven't shared a bed/room in all our married life as I need my sleep and I wouldn't get any the way his sleep pattern is.

Hubby is treated for HE with Rifaximin and lactulose though he only has minor confusion and concentration difficulties - so far none of the 'acting out' type stuff.

You'll definitely need to push doctors for some help on the HE / not HE question. Plus, there was that stuff on the MRI about alcohol related brain stuff. You need to know what's going on there.

All the best to you both,

Katie

[Bs1524 in reply to AyrshireK]

Hi Katie,

That sounds exactly like his sleep pattern or not sleep pattern. I did raise the question of the MRI yesterday and they said a lot of the changes are age related but may be deeper due to alcohol but they don’t know hence the referral to neurologist. I am surprised no one has raised it but observing him I think it is more sleep deprivation. I mentioned shaking they just acknowledge it but never comment.

Pam x

[ThreeSmiles in reply to Bs1524]

Hi Pam

I can’t add much to that which Katie has mentioned below (or wherever it ends up!)

No-one told me I had HE for about 2 years. If I had been on this forum at that time I would also have done what Katie advise - i.e. Discuss how to address the HE and not whether he has it.

Sleep pattern - well a lengthy sleep would have been good. For me (and I think others) sleep continues to be disturbed even post TP. But in my case it may be worse because I have other conditions not related to the liver (well not directly) that cause me interrupted sleep (and I don’t mean just because I need a wee 😁).

Oh yes I had a brain MRI scan too. Neurologist shoed me my brain splattered with white “fluff” 😁

Good luck again.

Miles

[Bs1524 in reply to ThreeSmiles]

I think the reason I haven’t asked the question outright is if he is confirmed to have HE it would mean losing his driving license and although he isn’t driving at all now I just feel it would be another thing taken away from him. Not sure if that makes any sense?

[ThreeSmiles in reply to Bs1524]

Pam

It makes sense except that if he had an accident and somehow the insurance company found out that he has HE then ... well you can guess the rest!

At the Assessment I was told by the nurses that I mustn’t drive because of my HE. I tried to say that my HE only happened at night when I was asleep but that didn’t seem to impress. I was fortunate not to have an accident - because I didn’t think of the potential implications. So as soon as I was actually told I must stop driving I did.

It’s darned hard not to be able to drive after 38 years of doing so ☹️ But better that than to have an uninsured accident! Now able to drive again.

Miles

[Bs1524 in reply to ThreeSmiles]

I hear you he hasn’t driven and wouldn’t drive I really have no worries that he would even attempt it. I have been reading about HE and he doesn’t appear to exhibit the symptoms suggested but when we see the neurologist I will specifically ask we need to know don’t we.

[ThreeSmiles in reply to Bs1524]

That’s good re not driving - not him feeling not well enough not too ☹️. Re your additional comment- I wasn’t told not to drive until the Assessment by which time I had had HE for about 2, or more even, years!

Let’s hope neurologist says all is OK 👍.

Miles

[Bs1524 in reply to ThreeSmiles]

I am crossing fingers Wow sorry for being nosey but why so long to get an assessment?

[ThreeSmiles in reply to Bs1524]

Do you mean the liver TP Assessment? That actually took about 4 years before I got the Assessment. This was because my local Hospital wasn’t interested in putting me forward for it. (They didn’t think it would solve my symptoms!). Then a younger Consultant at my local Hospital ignored his Seniors and arranged for me to see the whizz from QEHB (my saviour) at one of the quarterly joint Clinics at our Hospital. He said Miles come to QEHB I’ll get you sorted out - unbelievable! And he did thank goodness!

Miles

[Bs1524 in reply to ThreeSmiles]

Thank heavens x

[Bs1524 in reply to ThreeSmiles]

I meant to say as well it hasn’t been mentioned and he hasn’t been told not to drive he has felt so poorly he hasn’t.

[Isabelle2 in reply to ThreeSmiles]

My sleeping pattern was totally destroyed and even post tp I still don’t have a great night

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Good afternoon Bs1524,

I am glad to hear your husband has been seen at the hospital. It is important to ascertain whether your husband has HE (hepatic encephalopathy) as this can alter his treatment plan.

I have copied the link to HE for you to read and I suggest you discuss this with your husband and his doctors?

britishlivertrust.org.uk/in...

You can also contact the helpline, which is answered by liver nurses Mon-Fri 10am-14.45pm on 0800 652 7330.

Take care of yourselves,

Trust9

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Hi Pam C,

Dealing with healthcare seems to be a crapshoot no matter where you live. We just had a visit from hubby's youngest sister who praised her HMO group in California and her care there - other parts of the country this same HMO gets lousy reviews.

Good to hear that this visit may have put your local GP into a more attentive mode and hopefully, given your husband a nudge to go earlier when he is doing less well.

Sleep, according to my husband's liver doctor & GP, cirrhosis comes with sleep disruption - at least when caused by alcohol. Husband uses melatonin on occasion and none of his doctors object - it does not always seem to help though.

I would agree with the others here who suggest your husband may be having episodes of HE - it is possible he is not showing signs during doctor visits so they chalk it up to lack of sleep. Since my husband was hospitalized in Nov 2015 in liver failure with episodes of HE - thought I was one of his sisters a few times - he came home with a prescription for lactulose to help minimize or rid him of HE episodes. I would say I have noticed lack of sleep can effect his mental state to one extent or another.

We live in the US and husband still has his driver's license - he basically didn't drive for a whole lot of time -for a variety of reasons & I pay attention to how well he does, even now, but he has no issues with being on the road with other cars.

Best wishes to you both,

Mary

[Bs1524]

Thanks Mary it really helps hearing the experiences of others. It really helps to not feel so alone with this. People ask what’s wrong but I am reluctant to go into detail because I then I see their face change when alcohol is mentioned so mostly I say nothing.

Pam x