chronic fatigue after transplant?

[Cw25]

hi there,

New to the group and new liver just under 4 months ago. Generally all is well with the bloods and new liver but experiencing severe fatigue for the last month or so. Had cortisone test and apparently was fine. Litterally want to go back to bed for the day when I wake up and doesn’t improve throughout the day.

have tried exercise and light swimming but has made it worse.

Came off prednisolone about 6 weeks ago and not felt well since.

Anyone else experience unexplained fatigue? Doctor just says to take it easy as all looks fine but doesn’t feel right. I’m not sure I should feel this tired and unwell after nearly 4 months. Although I’m yet to really know how to feel post transplant.

For context - age 36. Male, PSC cause of transplant.

Any help would be much appreciated as doctors not that interested.

best regards

Charlie

Liver transplant 19.06.22

[Yellowsydney]

Hi, I'm 5 years post transplant and what you are feeling is perfectly normal, your transplant is very new and your body has been through an enormous amount of stress it usually takes about a year for your body to recover, you are also getting used to the extremely toxic drugs we take. Talk to your consultant and coordinators about it. Rest when you need to.

if you use Facebook please feel free to join out friendly and knowledgeable Facebook group called liver transplant support uk, hundreds of people in the same situation, so many that have been in the same situation.

Hilary

[Cw25 in reply to Yellowsydney]

hi Hillary,

Thanks for finding the time to reply.

I think also there is also an amount of mental fatigue involved that has just completely wiped me out. Stupidly we put our house on the market last week and the stress of selling and doing viewings etc hasn’t helped either!

I’m just going to rest and listen to my body, I’m still quite sore in the abdomen so I can see why it would take up to a year to fully recover.

I’ll put the swimming trunks and golf shoes in the bottom drawer until after Xmas!

Thank you I will look to join the Facebook group. Charlie x

[Kristian]

Hi Charlie,

I think 4 months after transplant tiredness certainly still came pretty easily. I was back at work by then but was very relieved to have been on a phased basis as I definitely felt tired even after only short peperiods. I know even 6 months after I still needed to odd recovery day. Hopefully it will improve for you. Dont cut everything out and do try and get out and about. But yeah, round of golf would be a bit excessive. Even 12 months after a round of golf would do me in for a day or sos, lol.

It is definitely something you should make your medical team aware of. But, hopefully its just part of the recovery process.

[Cw25 in reply to Kristian]

thanks for the reply. I think I would cry too if I let myself!! Had 2 days in bed but feel slightly (1%) better today! Just need to listen to our bodies but I do feel for everyone who has to work to get by. I’m lucky my business runs without me there but I’m very aware others would of had a really hard time pre and post transplant with our illnesses. Life is shit sometimes but I really want to do my new liver and donor justice, just not able to do it yet!

[Kristian in reply to Cw25]

I'm sure uyou'll do it more than justice, just give it time. I know it can be frustrating though so hopefully things will be improve for you soon. Good luck.

[bagpuss7]

Hello there. I too am 4 months post. I have just started a phased return to work through pure financial necessity. I am only doing a day and a half a week but I was exhausted to the point of tears last weekend. I am only in week 3 ☹ The meds we are on keep us alive but have strong side effects. Luckily I have very thick hair which is just as well as so much comes out! I am anaemic due to the drugs too. I am seeing my liver team regularly. I saw them last Wed and they think I am doing well! So what I am trying to say is, what we went through is MAJOR. No wonder we are tired. Doc said last week "Remember it is early days. You are out of the terrible storm but still swimming in choppy waters." Poetic doc 😊 I am in daily pain too due to hernias and keloid scarring. I guess we shouldn't be surprised. Rest when you can. I have some better days. Take an autumnal walk then. Sorry for long post! Best wishes.

[Cw25 in reply to bagpuss7]

when did they diagnose you with anemia? My red blood cells and platelets are still low. Did they put you on iron supplements? I was also in magnesium drips in hospital but as soon as I left they stopped them and didn’t give me any supplements to carry on with. Just wonder if it’s worth taking more than multi vits and the calci-d they make you take for bones.

[bagpuss7 in reply to Cw25]

weirdly I am not low in iron but I am anaemic! I confess I had always thought iron deficency equalled anaemia. That started 6 weeks ago and a vit D deficency too. Again supplements dont help . They tell me its the meds but both add to the tiredness. I still take the calceous on prescription as directed. So I guess supplements wouldnt hurt for you! It is something to raise with your team but mine always say "early days". I also now have a bile duct issue which is fairly common post transplant. I can only reiterate what they say to me which is " early days." Try to be patient and kind with yourself

[Cw25]

hi bagpus7

Thanks for the reply. Haven’t noticed the hair loss yet! Sorry you are also experiencing fatigue. I think the steroids were masking all sorts of pain and giving an artificial boost of energy as much worse since off them. It’s just tough mentally too when u feel you are going backwards rather than forwards after 4 months. Tough for my kids to still see me in bed with no energy when I promised them a better dad. Hopefully time will be a healer and need to to be more patient with my mind and body. Haven’t seen my doc in about a month with no appointments booked in so guess they aren’t worried about me but I have stressed many times about my fatigue so I certainly haven’t ignored it.

Hope your pain and energy improve too. C

[BritishLiverTrust1 Partner British Liver Trust]

Welcome to the forum Cw25,

In addition to the replies already received, if you are in the UK you may want to join one of our virtual support groups (including our UK-wide transplant group).

You can register here:

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust