Not sure what to think

[Bs1524]

Following husband’s colonoscopy on Monday I took him for blood work this morning and saw GP this afternoon. I pointed out that his legs are swelling again and his tummy looks bigger (the scan on 23rd December said no ascites) and he goes a bit yellow. GP agreed about the legs and examined his tummy and said there is some fluid his bloods not great, low protein, and liver not as good as it could be. She is sending him for another scan and wants more blood tests next week.

I asked why following nothing remarkable being discovered from the colonoscopy why is he in so much pain and discomfort. She didactic know.

He is very down now as he though his blood results would be better.

She also agreed his not being able to stay asleep is having a detrimental effect on his health.

I am so worried about him are all these ups and downs par for the course with liver disease or is this his liver failing. He doesn’t seem to be making any further improvement.

Thanks

Pam

[alfredthegreat]

Hi Pam.

Liver disease can be very up and down, my wife used to say that you rarely get 2 days the same!

My oedema used to be up and down and sometimes almost non existent and I used to have to alter my tablets to suit. I found that if I put my legs up as high as I could comfortably get them that this helped the oedema to go down.

Not getting a full nights sleep was one of my symptoms too. I would drop off in a chair in the daytime but not sleep well in bed.

Some days I felt exhausted and on others I would feel more like doing something, especially when my oedema was down.

Sometimes I would be quite yellow and other times not

It is all very much par for the course of liver disease.

I would often be in discomfort and sometimes pain.

When I was suffering with ascites and oedema I was told not to be tempted to cut back on drinking fluid as it actually does help to carry on drinking plenty of fluid, It was water in my case. I would drink at least 2 litres a day.

Eating little and often and including protein and carbohydrates helped. A poorly liver can't store energy for more than 2 hours and so carbohydrates help to top up energy levels and also help to stop the body taking energy from muscle. Our systems find it easier to take energy from muscle than from fat. It helps to have plenty of carbohydrates at bedtime because that's the longest period that we go without food.

I hope that his blood tests are improved next week.

Thinking of you both.

Alf

[AyrshireK]

Hi Pam, I can't recall whether your hubby is being seen at a proper liver unit or just gastros. It sounds very much like you need to push for him to now be seen at a transplant unit, even if transplant isn't yet indicated it would be prudent to get him on their books so they can oversee his care and indeed assess for transplant if they feel he needs it. He is now beyond the 6 month sober period (I think I recall) so that is no longer a bar to transplant. He is still showing signs of decompensation and bloods showing as deranged needs examining closely. Don't leave this too late, transplant units prefer to see someone too early than than too late.

Best wishes, Katie

[Bs1524 in reply to AyrshireK]

He is seeing the Heptologist on the 13th Feb and I am hoping he will be able to tell us more. My husband had his last drink 12th May 2019 that was the day I cam out of hospital.

He still has really been anywhere except hospital and to GP he is terrified of being far from a toilet so goes nowhere.

He appears to have aged so much I wish the medics could see how he was to now to say he is a shadow of his former self doesn’t cut it.

[Laura009 in reply to Bs1524]

Hi Pam. The medics will have seen this so many times before, they will know he doesn't look anything like how he used to. After detox, my hubby looked exactly the same as his then 84 year old Father. (30 years his senior) His once distinguished soft greying hair resembled a brillo pad, his strong sporty body became withered and week and his jaundiced face carried deep lines and wrinkles displaying all the torment running through his body.

I agree with Katie, you should be pushing for transplant now.

L x

[Bs1524 in reply to Laura009]

Hi Laura,

The last three Consultant’s we have seen have all mentioned transplant and reading between the lines they were waiting to see if he could stop drinking. They were saying that as he hadn’t had any drink for 6 plus months he would be considered and that is why he is only now seeing the Heptologist. The trouble is any mention of transplant freaks him out he can’t or won’t see that his condition is chronic and is not going to go away.

Laura your description of your late husband reflects what I am see with my husband. He was born running, a professional jump jockey and now shuffled around like an old old man, it is heartbreaking.

[Laura009 in reply to Bs1524]

It really is very sad.

I wish your hubby could understand a transplant is his only chance of survival and while its just his liver. Further down the line it will be his kidneys too. He desperately needs to co operate and take what is offered to him while he is well enough to get through the operation.

I wish you the very best of luck

L x

[Bs1524 in reply to Laura009]

Hi Laura,

He really seems to view this as an illness that is taking a long time to recover from. He is doing everything they ask of him but he seems to have a blind spot probably because it is too scary to admit the reality.

Pam x

[Hidden in reply to Bs1524]

Hi Bs1524. Also so sorry to read that your warranted worry and your husband's symptoms are not subsiding.

8 months sober is awesome! It must be more than frustrating that your husband is trying and doing so well to improve and his body is not yet rewarding him for those efforts. Unfortunately for some, it might tempt them to go back to drinking. It's good that your husband is likely more committed than that.

Encouraging though to hear that the medical team is being proactive and that another scan and more blood work have been scheduled for next week to closely monitor changes. Fingers crossed for favourable ones.

If the abdomen fluid increases your husband will have more difficulty eating and his mobility may be further affected so I do hope that they address that sooner than later if it requires draining or perhaps they might consider making an adjustment to any diuretics that he has been prescribed. My husband was so uncomfortable with that ascites.

3 weeks to wait for that specialist appointment must seem like an eternity away from now. It would me. Any chance of their moving that appointment up?

In the interim, as others have suggested, ensuring your husband has been put on the transplant waiting list seems important in the event things don't start to improve.

As Alfred mentioned, elevating the oedema-affected body parts helped my husband, at least somewhat, as well.

x

[Bs1524 in reply to Hidden]

Hi Dee,

The Heptologist wanted to see him this month but the earliest appointment was 26th March which wasn’t good enough and they have got him an appointment for February not great but better. He isn’t on the transplant list they have intimated that he may be suitable to be considered.

I don’t know what to think right now but certainly after his initial improvement it appears to have ground to a halt. xx

[davianne]

Hi Pam,

I'm afraid it's part of the symptoms of cirrhosis. Even though my cirrhosis is compensated just now, I still get oedema, itching, joint and muscle pain, occasional confusion, and last but not least, excruciating capsule pain. My gastroscopy last week showed the 3 small varices is has before, but now won't be repeated for 2 years. I'm due bloods soon, but previous bloods have fortunately been stable, if not perfect.....very low platelets and B12 deficiency.

I'm sorry to say that feeling down about our situation is all too common, and lack of sleep is one of the worst to deal with.

On the plus side, I did improve slowly, and can mostly manage all that cirrhosis throws at me daily.

It seems you have a good Dr, to look after him, so just keep faith that things will get better.🙏🙏🙏

David

[Bs1524 in reply to davianne]

Thanks for your support it helps to speak to people who understand the situation. Nearly everyone I speak to with no experience of liver disease assure the liver regenerate, they don’t understand.

[Laura009 in reply to Bs1524]

You are absolutely right people dont understand anything beyond fatty liver and being able to be reverse it. Whatever the cause, a cirrhotic liver needs a huge amount of further care, attention and consideration.

L x

[davianne in reply to Laura009]

well done Laura👍👍

[davianne in reply to Bs1524]

Hi, I was going to reply, but Laura beat me to it😊👍. The cirrhotic parts of a liver cannot regenerate, so it just has to do the best it can, with the help of the spleen, to keep processing all it can. That's why my spleen is twice the normal size at 190mm, and also why I have low platelets, as it cannot generate them as it used to.

David

[Laura009 in reply to davianne]

Thanks David

[Bootandall in reply to davianne]

This turns out to be why l have splenomegaly as well as cirrhosis, which is well compensated, but that's why. I think it's common that the other digestive organs work a lot more when the liver has cirrhosis. l have had a kidney stone too.

[Hidden]

Good evening Bs1524,

I can see you are getting lots of support from our lovely forum members.

You can also call the nurse led helpline on 0800 652 7330 Mon- Fri 10am - 3pm should you wish to chat with one of the nurses .

best wishes,

Trust9