Update on my Partner

[Bibbs]

It's been a couple of months since I last posted about my partner (43 years old, diagnosed with ARLD back in July 2021) so I thought I would share an update on his progress. Since then, he's had a couple more blood tests that have shown further improvement. His platelets and hemoglobin are now just below the lower limit, and his albumin, whilst still low, has undergone something of a step change and is now looking better. His bilirubin, which peaked at over 150 back in August, has now just returned into the normal range, and all his other liver panel results are within their normal ranges. He's still following the diet and hasn't touched alcohol since his original admission to hospital back in late June 2021. He's had a DEXA bone density scan to check for osteoporosis, which has confirmed that his bone density is within the normal range for someone of his age. He's had an endoscopy to check for varices, which has found a small number of grade 2 varices in his esophagus. Whilst they were checking, they also found a stomach ulcer and some erosive gastritis, and he's been prescribed omeprazole to treat this. Coming up he has a further endoscopy to check whether the ulcer has healed, and a routine 6-monthly ultrasound scan on his liver. At the time of my previous post he was having a lot of pain in his left shoulder. He was eventually prescribed amitriptyline with the approval of the pharmacist at the hepatology department at our local hospital, but this is a daily tablet and his pain is more acute than chronic, and he wanted something to take as and when the pain reached an intolerable level, so he's now been prescribed Oramorph instead (again with the approval of the pharmacist). The pain seems to have generally reduced, but nonetheless we're arranging some physiotherapy for him, so hopefully he'll be able to stop taking any painkillers in the near future.

We had a bit of an episode over over the new year where he caught a gastric bug, was unable to eat, and became dehydrated. This lasted for two or three days, after which he was able to start eating and drinking water again. However, a day or so later I noticed that he'd started to develop liver flap so I took him to A&E, just to be on the safe side. To cut a long story short, the symptoms had more or less cleared by themselves by the time we left A&E later that day, and his consultant put it down to the dehydration. Have any of you guys experienced similar problems due to a bug or other illness?

The main issue he's facing at the moment is a general lack of energy. He has good days where he's very active around the house and can do a fair bit of walking, but these are often followed by several days of low energy, having to take frequent naps, and easily becoming exhausted. I just wanted to check with you guys whether any of you have experienced these symptoms, and if so, whether they improved with time. He feels a bit like he's caught in a place somewhere between having the horrible symptoms of decompensated liver disease (ascites, edema, jaundice) which now seems to be in the past, and being symptom-free with enough energy to plan ahead with things like days out or even returning to his office job.

We'd both be grateful to hear of your own experiences.

[AyrshireK]

Hi Bibbs, good to hear that hubby is generally doing better and liver is stabilizing a bit.

The fatigue symptoms you describe are common in cirrhosis - it is like a roller coaster, some days better than others.

My hubby is generally tired all the time (that's his now normal) - some days though he is able to battle through the fatigue and do activities - he's off on his bike today for example. He's tired but he can battle through. Yesterday though his tiredness was at exhaustion level and he even ended up in bed for a bit during the afternoon, fell asleep in the bath later and retired to bed at 8pm last night.

There have been times during his illness where he has required daily bed rest (he was diagnosed with cirrhosis in 2012). It's not just a physical tiredness but a full on mental drained feeling too,

He sleeps poorly but since taking up cycling he's sleeping better and certainly feels better mentally.

As I said it is like a roller coaster, you have to go with the flow, make the best of good days and right off the worst ones. We find it impossible to plan because you just don't know what kind of day you are going to face until the day comes.

Hopefully your husband will regain some zest, certainly my hubby has over the years. He was initially diagnosed with an adjustment depression too over suddenly becoming so ill and it taking away so much of the life he had and the life he planned to lead but over the years he's come to accept he just has to live the life he has got now and go with the flow. Making the absolute most of good days.

Katie

[Bibbs in reply to AyrshireK]

Hi Katie, thanks for your reply. It's given us a lift, especially as he's going through one of those patches of fatigue and his first worry is that there's been a set-back in his recovery. Not having weekly blood tests anymore is a double-edged sword; on the one hand, it shows that his consultant is happy with his progress and doesn't see the need for such close monitoring. On the other hand, though, we have plenty of time to ruminate over things and read between the lines!

[BetulaT]

Hi Bibbs, my husband was hospitalised with liver failure for emergency alcohol detox in July 2021. This was a very stressful time as he was very poorly and was keeping me in the dark about his health. He was discharged from hospital after 2 weeks with diagnosis decompensated cirrhosis and most of the summer he really struggled with ascites and oedema. He also has grade 2 varices, portal hypertension and mild HE.

His ascites is under control now, bloods are improving and he is much better compared to how he was in the summer. But as Katie said, it's like a roller coaster - there are good days and bad days - I never know what to expect.

He struggles to sleep, so when he's not had enough sleep he is very tired and grumpy. Also, things like a having a mild cold will knock him out for days.

My husband, like your husband (reading your previous post) has not had a drink since June / July so hopefully they will continue to improve!

[Bibbs in reply to BetulaT]

Hi Betula, thanks for your reply. We're starting to realise that the road ahead is full of twists and turns. I've had a bit of a cold for the past week , so I suppose there's every chance that the fatigue he's experiencing at the moment has something to do with that. His appetite is so far unaffected and he's drinking plenty of water, so we'll have to get through the winter and hope for a minder and bug-free spring!

[Hey___]

Hi Bibbs,

I thought I would reply because I am in the same situation. I was decompensated but now compensated. I had all the symptoms your husband had which are now gone. I am left with the chronic fatigue and the inability to plan sometimes what would have been an easy day out. I hope this will improve but on the 'rough' days I just get through the best I can.

This has a negative impact on my life; physically and mentally. And yes it is a rollercoaster but he has support from you which is really important for him but remember to look after yourself too! I have a 14 son who is adorable but there are days that I can't do the things I used to.

I guess acceptence is key for your husband which I myself struggle with but the more he talks about it the better. For himself and people around him.

I wish you all the best with it. And congratulations on your husband's sobriety. Its the first major step!!

Mark

[Bibbs in reply to Hey___]

Hi Mark, thanks for your reply and your kind words. It looks like fatigue is a fairly common symptom. I'm hoping that his energy levels will pick up when the warmer weather comes and there are fewer bugs around. Winter's a tough time of year in terms of energy and enthusiasm for me, so I can't imagine how much worse it is if you add liver disease on top of it!