I was diagnosed with alcohol related liver disease (cirrhosis) in Sep 2016. I went through the normal process of tests at my local hospital and then got referred to Kings for assessment. I was accepted in Nov 2017 and had a transplant in Dec 2018. My main symptoms were fatigue, lack of strength, asities, itching, jaundice, insomnia and other problems like keeping blood levels in check for surgery. On release from hospital my weekly clinic visits went well. However an unrelated back problem returned and I have been having physio for 2 months now to fix hip and sciatica problem. I have bad fatigue and am finding it a struggle to walk more than 400 steps before the leg sciatica pains start. So, I am trying to fix this problem so I can get my normal fitness levels backup but I have now become aware that fatigue can remain after transplant. I am now 4 and a half months post transplant and am wondering if this is as good as it is going to get ?
Fatigue after liver transplant - British Liver Trust
Fatigue after liver transplant
Congratulations on receiving your transplant , I must have got mine a couple of weeks before you! I have had a similar experience in that an unrelated knee injury from several years ago has come back to haunt me, I put it down to the muscle wastage I had post transplant and have reverted back to old physio exercises I did when I first injured it and it has seemed to get better. The fatigue I wish I knew the answer to it as well . I seemed to be fine for the first couple of months ( considering the op) and now 5 months later I feel exhausted all the time , I never needed more than 6/8 hours sleep if not suffering from insomnia and now sleep 12 hours straight and still fall asleep at the drop of a hat ! I’m just taking it one day at a time and I know it will get better, when I even think back to a month ago I realise the progress I’ve made and for once I’m listening to my body and going at a pace which in the long run will be better for me.
I hope you eventually will start to feel the benefits , and wish you a good recovery
Hi, hope you are doing as well as expected 👍 your experience and timings seem almost identical to mine. Felt fine when I came out etc but now I can sleep for 12 hours and more. I did mention this to my consult a few weeks ago and he said probably due to coming off steroids ? I was off them after 3 months and soon felt fatigued and weak. I’m going to talk about this with consultant again on Wednesday, I’ll keep you posted !
The steroids thing was mentioned to me too. I’ve had so many weird side effects I think they have exhausted all tests regarding diabetes or kidneys and having a scan in a weeks time to rule out anything dodgy. Fatigue and needing to pee all the time don’t mix well 😂. Keep me posted !
Hi, Just to say that I am almost 8 months post transplant and I still get very tired. I have been told that it can take about a year for recovery from transplant. I have seen some remarks on here that even after a year that some people are still tired and some never attain the energy levels that they had before original diagnosis. I think that a lot depends on age and length and severity of illness. It's still early days for you really and you have other problems (like myself) that make recovery more difficult. Got to say though that I'm just glad to be here to feel tired! Hope your sciatica eases very soon. All the best. Alf.
I too would like to offer my congratulations and welcome to our growing number of liver transplantees. This maybe a long shot, but have you by chance had your blood sugar levels checked, post opp? Fatigue is often one of the side effects of type 2 diabetes. Having had a liver transplant, the medications used to prevent rejection can alter the way hepatocytes in the liver handle sugars and drive overproduction and release of glucose into the blood.
Also patients with diabetic risks before transplant are more likely to experience it after transplant. Speak to your GP and ask about having a sugar blood test done, this maybe be able to be done by your local pharmacist too.
Hi, I am just over a year post and experience the same thing. I need a nap during the day as well as at least 10h! Trying to fight it and sometimes succeed but still it is a struggle. I am wondering maybe it is also because you're not fully back to your normal lifestyle pre-transplant? Work, hobbies, etc? Good luck to all of us!
Thanks for your input on Diabetes t2. About 10 years ago I became aware I was type 2. I started to take metformin and this helped but then lifestyle changes got me back to normal levels and I didn’t really worry about it anymore. However the steroids after the transplant sent my blood sugar levels high and erratic so I was given an insulin pen and worked with the liver diabetic team on how to test and inject myself. My levels now are more or less back to normal but I am still taking insulin at a low dose.
Hello.
I had my transplant in August 2017 and fatigue was always one of my main complaints for a long time after the operation. I actually think I am a lot better now. I often blame it on immune suppressant medication. I'm taking 125mg Ciclosporin which is actually a very low daily dosage.
I used to suffer from a fair bit of brain fog and also tinnitus which I can hear right now at 8.48am Sunday morning. I guess I've learned to live with it all but the fatigue took a year at least to either get over or get used to.
I hope that time will be kind to you.
Andy.
Hi, 23 months post very fatigued I can managed about 1/2 hour activity at a time before exhaustion sets in and have to rest for couple of hours. I suffer from insomnia due to tacrolimus. I do as much as I can and rest, this is my new normal, but I'm alive. Good luck 💚💚
Hubby is just come up for a year post transplant on 12th May. He currently has an issue with his knee which started post transplant was never an issue before . He recently been for an MRI scan to see what the issue is with the knee, I'm putting it down the the severe muscle wastage he suffered during g the year years he was ill before transplant & hoping it will sort itself out.
Yes so e days he is more tired than others if he over does it. You need to remember that your body has had how many years of I'll health prior to transplant & it will take time to sort itself out
Congratulations on your successful transplant.
I had my transplant at Kings in October 2017.
I had issues with fatigue especially for the first 6 months. This gradually improved.
Once I went back to work last June, things got a lot better. I do still have days where I am quite tired, nothing excessive though.
I think we are all different, it also depends on how unwell you were previously.
I hope things steadily improve for you
I had my transplant in August 2017 and fatigue was a huge problem. So difficult just to get out of bed every morning. I must admit this year I haven't noticed it as much. My main side effects are a slight brain fog sensation every now and then and tinnitus. I also get very itchy. I blame this on immune suppressant medication, especially the tinnitus although I'm only on 125mg of Ciclosporin a day which is pretty low.
I've recently had an operation to repair a huge size hernia which originated from the transplant incision so I've been set back again but I don't necessarily feel fatigued right now, but resting a lot does make me feel lethargic anyway.
Iv been reading ur post & im 3yrs p/tiv got same symptoms as u describe wat haven't got is a hernia but how would i no if i had as my stomach is swollen and it is a lot of discomfort plus my scar line stillhurts havnt discussed it with consultant yet as havnt seen him since lst jan hope u r getting on ok .thanks
I am 2 and half years post and fatigue is one of my main issues it's actually that bad I going to see a sleep psychologist today lol
As someone mentioned it's due to how long and how poorly you was pre.. It also seems to be the drugs we're on and I also have kidney disease so I know that doesn't help...
I hope yours improves I know how draining it is 😊
I saw my consultant this morning and told him about my fatigue and breathlessness. All my blood levels appeared ok except for magnesium for which he has prescribed me. He also wants me to have mri on liver and abdomen. So it’s wait and see for now...
At the assessment they don't seem to stress enough that a transplant is not a cure but rather a treatment. I'm 28 months post transplant and still get lots of fatigue. Whilst nowhere near as a bad as first year, it's there nonetheless. Funny enough I can lift heavier at the gym than I ever could but rather than feeling more energised, I now need several days to recover from a workout session.
I thought I would give an update on my fitness, I’m now 20 months PT. Everything got much better after two Ferritin infusions in April. Iron was was very low at 10 now 180. This got my energy levels up. So, now I can walk 9 holes of golf, sometimes 18. I still ache and have fatigue and feel like I’ve played a game of rugby afterwards but when I read my earlier post I realise I have progressed, it although at a very slow pace. Shortness of breath still an issue when walking hills but now I’ve attached a seat to my golf trolley I can take a sneaky breath to rest my body. I’ve got stretching routines I do when I remember and cycle a bit but everything is helping. I’ll post another update in 20 months 👍 I hope this post helps others to compare.
Hi,
Don't give up. Give yourself a break if you need to ,get a good skin moisturiser on prescription for the itching.It seems that most of us here suffer from lack of sleep. My partner and I work round it. We have good routine. Anyway don't give up on the exercise and get a good diet going,
Good luck coming your way xx😎
Quick update, just walked 3 days golf and physically I feel so much better, loads of energy , I’ve just kept doing the physio exercises, cycle everywhere and play golf because I hate walking lol Mental health wise, I’m a lot better too, I had lots of confusion going on during my post op time in hospital which I’m time just got worse. It was only after I spoke to LTC’s at Kings earlier this year I got back on track. They were fantastic and talked me through what happened from going under to waking up and the following 12 nights. It cleared up a lot of things in my head. I didn’t realise these memories were causing all sorts of breakdowns, not nice. Anyway, if anybody else recognises any of this speak to somebody, first time I ever did but it works.
Best wishes and good health to everyone Pre and Post op
just like to add…I recently visited Todd ward at Kings for a reorientation meeting. This was after several phone conversations with the LTC’s and others regarding my post op ptsd issues. My memories of my first 2 weeks post op are quite different to what actually happened as it turns out and was mainly down to delirium etc This left me prone to breaking down unexpectedly in public and even at home on my own. Anyway, since my visit back on the wards my memories are so different. Whenever I think of Kings I think of new memory I picked up during my recent visit instead of other delirium filled thoughts. I noticed the difference within hours of leaving Kings and it’s just got better, I no longer keep thinking about the post op stuff (i thought i was being held against my will and my bedside nurse was a guard lol at one point lol) and just think about that marvellous recent day trip back to Kings. I’m not saying my problems have gone but have reduced dramatically, I just feel different now.
If anybody else is struggling like I was then talk to your LTC’s , it really helped me going back.
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