Fatige post liver transplant

[PCBnPBC]

I gather about 50% of PBC ers suffer severe fatigue. I was one. I received a transplant 12 months ago, I still experience fatigue, nothing like as extreme as pre transplant, but I need 2 - 3 hours sleep each afternoon or I am so sleepy I can not function. I had hoped that exercising might help, and that the longer from transplant I might get stronger etc. well exercise knocks me out I ramped gently to 5 minutes jogging at 8 Km / hr. and was so exhausted I felt it counter productive....do other transplant patients experience this tiredness or similar?

[AyrshireK]

We were told that many people can actually feel worse as regards fatigue post-transplant than before it. With fatigue being hubbies main symptom it has come up for discussion a lot and we were told they did used to transplant due to fatigue/quality of life issues but don't anymore because transplant may not necessarily take the fatigue away or may indeed make it worse.

I think you still need to pace yourself Charlie. One day at a time and do what exercise you feel like when you feel like it.

Do wish you all the best, Katie xxx

[RodeoJoe in reply to AyrshireK]

That's news to me Katie, however I'm sure you're right. I just made assumptions based on how I've felt post transplant. One of the most crippling things about cirrhosis was the fatigue.

[RodeoJoe]

No quite the opposite. After years of cirrhosis I finally found out what feeling normal was like. I used to fall asleep at my desk, couldn't exercise, insomnia followed by exhaustion.

Now things are much better, work all day, cycle to and from work, and now can I go to bed about 10:30 and sleep straight through to 7 am.

What you are describing doesn't sound right, have you told the consultants?

[PCBnPBC in reply to RodeoJoe]

I have mentioned my fatigue, the response tends to be "every liver journey is unique, it was a big op, do not expect too much etc. " I am trying to suss out how normal my fatigue is and on reading up on the net it is quite clear some do suffer fatigue post transplant, I am not complaining!! just trying to suss if there may be something going on that might be cured or eased, or if this is my lot, I am much better than I was pre transplant in so many ways, including actually being alive now!

Results of the study indicate that fatigue is a major problem in patients after liver transplantation and no indications were found that complaints of fatigue improve over time. Liver transplant recipients experience physical fatigue and reduced activity rather than mental fatigue and reduced motivation. These findings have implications for the development of interventions needed to rehabilitate persons after liver transplantation. ncbi.nlm.nih.gov/pubmed/165...

[RodeoJoe in reply to PCBnPBC]

In that case I'm definitely one of the lucky ones!

[Hidden in reply to PCBnPBC]

Me too, although I am usually whacked by 9.00pm. However I get up early and have energy during the day. I assume, that I have somewhat distorted recall and that the immediate post transplant period I had much less energy.

Like any other symptoms, this is worth continuing to mention to your consultant.

[PCBnPBC in reply to Hidden]

I try to work (run a B&B, so no time off) up early, wacked by lunch time, grab 2 - 3 hours sleep, and whacked again by 8 pm. I fail to do aerobic exercise, but house is on 3 floors, up, down,up, down alone is exercise let alone trying to look after 2 acres of garden (3 bags of leaves each day, then back to bed is current gardening regime) so gently try to work, and fortunate that I can do what I can, when I can, and even the boss lady no longer cracks the whip so often, dream of retirement, but concerned that might lead me to lie in bed 24 /7 !

Memory and recall and cognitive issues still present, no where near as bad as the chronic H.E. I suffered from pre transplant.

I do intend to bring this up with a higher level of concern 29 Dec with consultant, but 3 months ago I was informed I had I.C. and that another transplant was likley .....so plenty to discuss in the brief appointment.

Not whinging here, we all have little issues to deal with, just sharing some experiences, and interested in others experience of fatigue post transplant!

[MisterX in reply to PCBnPBC]

If you have an opportunity could you mention me to your consultant too please - I got fatigued just reading what you do all day!

Best wishes.

[RodeoJoe in reply to PCBnPBC]

What's I.C.?

[PCBnPBC in reply to RodeoJoe]

I.C. Ischemic cholangiopathy

Parts of the liver are traumatised due to being out of the blood flow, in some cases this does not recover. Leading to failing bile ducts (again for me) this can cause abseses, infection, and sudden liver failure. I.C. does not repair itself.

The use of donation after cardiac death (DCD) donor livers is becoming more widespread; however, there have been published reports of increased graft failure from specific complications associated with this type of transplant The complication of ischemic cholangiopathy (IC) has been reported to occur more frequently after the use of DCD liver transplants

[RodeoJoe in reply to PCBnPBC]

I'm sorry to hear this, after all once is more than enough.

I do remember the discussion about different types of donors. But if I remember rightly I was excluded from receiving a DCD liver. I can't honestly remember why? I know it wasn't by choice.

[PCBnPBC in reply to RodeoJoe]

I feel fine (apart from fatigue) and I consider myself lucky to have had the transplant, the alternative was not so good! Just have to think positively, if / when things get bad hope I am fit enough and liver is available, done it once, so I know it can be done!

I only considered the 2 types DCD DBD after I found out recently that I had I.C. I guess this is not something they want to encourage discussion about......

The profession do discuss, and as always they have new ideas to help for better outcomes in DCD livers being trialed. Essentially a profusion machine to keep the blood flow to the liver during transport....

[cityman62]

Holy cow,Batman!I almost expected you to conclude your post with how bitterly disappointed you are that Wales haven't called you up for the Euro16 competition. You sound like your doing OK to me,listen to your body and pace yourself.Also do make full use of the sympathy card-stare out of the window pensively,Sigh heavily occasionally,make for the kettle,then sit down looking defeated-you know the drill ;-).Take care,Andy.

[gamesmaker]

I have not been on this site for some time. I have a history of NASH related liver disease, and antitrypsin deficiency, and was lucky to have a liver transplant in May of this year. I will forever be grateful to the NHS, the staff who treated me and the donor family. My recovery was complicated with one episode of rejection, confusion and sepsis. My confusion and the sepsis required me to go into residential care for several weeks as I live alone. However I am now going from strength to strength thanks to my supportive family. My only problems now relate to the anti rejection medication. There were times when my family did not think I would make it, but everyone stood by me despite my strange interpretation in the early days of the treatment I was receiving. !!

[unique4]

Listen to your body, when its had enough stop, don't push yourself just be kind and gentle.

[PCBnPBC in reply to unique4]

I think you are right, listen to your body, but I also like to try a little bit harder on occasion as a method of ensuring I do not give in to any lazy feelings! so I am tough on myself, as well as accepting my limits! some days I have more energy than others. any infection lays me out, i can really feel it when I am not on top form.

[PadoJoe]

Post transplant the fatigue is exhausting and none of the doctors have had any insights as to why. The strugle is real.

[Landon11375]

I’m 4 months post transplant and I actually enjoy a good 2 hour nap in the afternoon but that’s just me 😃