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Coping with tiredness

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janemill Total Reaction Points: 2
Hello. My name is Jane, 60 years old, and I am 2 years post transplant. I am new to the forum. I had AML and subsequently a donor bone marrow transplant. I have been really fortunate with my recovery. Only one infection post-transplant, which caused me to have to go back into hospital. But I am struggling with my lack of energy. I really have to pace myself. I have always been an active person, and get really frustrated that I get tired so often, when I want to get on and do so much! Do others this far on feel so tired? And have you any ideas which might help?

Comments

  • SuePSueP Total Reaction Points: 35
    Hi Jane,
    I'm a community champion on this forum and I can associate with you completely. I had several relapses of non Hodgkin's lymphoma until I was given a cord blood transplant in late 2013 when I was 59. As I had an autologous stem cell transplant a few years previously, I thought I knew what was coming - I didn't! It totally pole-axed me for a very long time. I was still having a nap in the afternoon for about 18 months afterwards and spent a lot of the day just sitting. I had been given early retirement on grounds of ill health which is just as well as I couldn't have worked after the transplant. At your stage, two years on, I was much the same as I am now - that is still with fairly low energy levels but years of chemo had already taken their toll on me. I'm fairly active but can't walk as far as I could before the diagnosis and some jobs still over face me - I get the shopping online and have a cleaner.

    How are your emotions? I felt emotionally inert for about 2 years but am now back to normal - crying at anything as I have always done.

    I hope this helps.
    Sue
  • janemill Total Reaction Points: 2
    Thankyou for your response Sue. It is good to hear I am not alone in the way I feel. I have found this latest stage quite difficult. People keep telling me how well I look.....isn't it amazing?.......good to see you 'back to normal'. And I am generally well, and it is amazing and I shall be forever grateful for this extension of my life, to doctors, nurses, and of course my donor. But I am 'not back to normal'. I understand that people forget, and of course they only see me out and about. But I spend a lot of time in between simply recharging my energy. I suppose I cannot really expect others to understand when I don't understand myself either, sometimes!
    I didn't have the difficulty that you describe with my emotions, thankfully. I am glad that you are feeling more normal now in that respect.
  • greg777 Total Reaction Points: 44
    Hi Jane,
    I am 38 and 15 months post transplant and my energy levels are not the same as they were pre-transplant so maybe it is just one of those things that happens - our bodies have been through a **** of a lot after all. As to people asking if you are back to normal, I think it is because they worry and in a way want to stop worrying. I think they might also want to stop feeling like they are walking on eggshells. Normal doesn't exist anyway so I normally just shrug it off because I realise the question /comment is more about them than about me.
    All the best,
    Greg
  • SuePSueP Total Reaction Points: 35
    Hi Jane,
    I also think you and I have to make allowances for our age. It takes some doing to recover from a bone marrow transplant and all the chemo when you're nearly 60 (even if 60 is the new 40!).
    Dieseldrinker has suggested on another thread that we may need to look at a 'new normal'.

    I think I may start a new thread about BMT in older patients.

    Sue
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 44
    Hi Jane

    I am the nurse specialist in patient services. I just wanted to back up the advice that you have received from Sue and Greg. It can take several years for fatigue levels to return to normal after a transplant and Sue is right you do have to take in to consideration age too. Its mainly about balance and not overdoing it on good days and listening to your body on days you feel tired. Its great that you are motivated, keep that going and gradually overtime it should improve.

    One of the most common conversations that I have with patients is that 'I look normal but don't feel it' and it can be really hard for family and friends to understand why you still feel so fatigued 2 years later. We are very aware of this at Anthony Nolan and we are working hard to raise the awareness of long term side effects of transplant. Our booklets on supporting your friend through a transplant and fatigue might help. Although they cover immediate post transplant experiences they also have advice on longer term issues like fatigue. You could show this to your friends or casually leave it lying around so they can read it!
    https://www.anthonynolan.org/sites/default/files/ANFriendsGuide.pdf
    https://www.anthonynolan.org/sites/default/files/Managing_Fatigue_After_A_Transplant_Anthony_Nolan.pdf

    Remember what you are experiencing is normal and should get better but like most things after a transplant it will take time.

    Best wishes
    Hayley
  • janemill Total Reaction Points: 2
    Thankyou Hayley. Sorry for delay in replying. I seemed to have plateaued on the fatigue side of things, until recently when it has become a little more marked. I saw the consultant yesterday, who told me that my bloods were showing changes....lower platelets....lower haemoglobin. Hopefully just a sign of hidden infection, but checking blood again in 2 weeks to see if I need the bone marrow checking. If my bone marrow is fighting back, and there is a change in the chimerism / bone, does that mean the leukaemia is definitely back? Or could it just be just a potential possibility? Trying to make sense of it.
  • SuePSueP Total Reaction Points: 35
    Hi Jane,
    I'm afraid I can't comment on the significance of the drop in your blood counts but until someone from Anthony Nolan can get back to you, I just wanted to say that we are all here as your support team, wishing you well. Do feel free to post on here whenever you want. I have learnt that it's impossible to predict what your medical team will decide what to do next!

    All the very best,
    Sue
  • janemill Total Reaction Points: 2
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 215
    Hi Jane,

    I just wanted to echo what Sue has said and wish you well. As you say it may be just a blip due to an infection and hopefully nothing more severe than that.

    I think we maybe get too hung up on our blood tests and it is possibly normal for dips in our system whether we have gone through a transplant or not. I wonder sometimes if you monitored someone who hasn't had a transplant whether their bloods would also fluctuate?

    Fingers crossed that by the time you have your next blood test your levels will be on the up again. As Sue says please keep us posted and come back for whatever support you need.

    In terms of your original post about fatigue levels, I'm over 4 years post transplant and even now I find things catching up with me sometimes and I feel tired. If I get a cold it tends to knock me harder than it used to and takes longer to recover. I would say that my fitness levels have come back to similar to how they were before my transplant but then again I was never particularly athletic! I guess we have to adjust slightly to compensate for our lower energy levels and establish a 'new normal' for our capabilities.

    All the best,

    Steve
  • NicholaNichola Total Reaction Points: 9
    Hello Jane,

    I hope you are well!

    Apologies for only jumping in on this conversation now - I joined the Community Champions just last week and have been looking through past messages and couldn't help but want to respond to your tiredness query...

    I am over 5 years post transplant now and I'm afraid to say I still suffer quite a lot from tiredness and fatigue... but I ask myself, is it in my head? Or is it my body telling me it's been through too much? Or is it simply hormones!? Honestly, I think it's a combination of all three, but I'm sure us ladies can all agree that hormones can play a HUGE part in how we feel - I don't know about you Jane, but I had to have TBI (total body irradiation) to cleanse my body before having my new immune system put in, and although this was a great success, one of the implications for me was that this treatment messed my hormones up massively - which I know has had an impact on my tiredness.

    How do I fight it? Well, some days are harder than others, but I fight it as much as I can and I'm afraid to say coffee has become a dear friend ;) But on a healthier note - exercise!! This helps me feel more energetic, and when I do feel tired, I have the easy excuse of blaming the exercise as opposed to silly hormones. As well as staying active though, there's no shame at all in listening to your body and slowing down when it's telling you to - unfortunately I think it's just something us transplant recipients have to accept.

    Hormones for us ladies during/after treatment is probably a whole different conversation though, but I wanted to let you know you are 100% not alone with the tiredness, but as hard as it is, try to fight it as much as possible by staying active (a little controversial isn't it... but it works :) !

    I'll look forward to hearing how you're doing.

    Best wishes,

    Nichola x
  • janemill Total Reaction Points: 2
    Thankyou . I think you are right Nichola, in that it could be a mixture of lots of things causing the tiredness. Sometimes it's easier than others. Sometimes I beat it and sometimes I don't. At the moment (rightly or wrongly) I am doing as much as I can this week prior to these forthcoming tests....just in case the doctors have other plans for me after the results! Loving the bright weather. Loving doing normal things. I suppose if I'm honest, these iffy results have caused me to stop thinking so much about the frustration of tiredness, and concentrating more on what I CAN do. Good reminder, really. I shall aim to remember this in future. Thats my plan. Feel free to remind me if I start feeling sorry for myself!
  • NicholaNichola Total Reaction Points: 9
    Hi Jane

    I'm really pleased to hear you're enjoying this beautiful weather and trying to take your mind off things by doing 'normal' things :)

    When we're in limbo at times like these, it's easy for our minds to wonder and sometimes end up thinking the worse... We're only human, and the unknown can be our worst enemy! BUT staying positive as much as you can and trying to focus of the good things will do you all the good - and it sounds like you've already got that down to a tea! :)

    Wishing you all the very best for the tests, Jane, and you know where we are if you need to talk or have any other questions.

    Enjoy the sun! x
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 44
    Hi Jane

    Sorry for the delayed response. Its good to see you have lots of support on here from people who understand what you are experiencing and giving you good advice. In terms of your counts, there can be different reasons why they fluctuate, even 2 years after transplant. Sometimes they might just have a blip but sometimes infection can be a cause. Even if you haven't been feeling too bad, viruses can cause the bloods to change and this would also fit with the increase in levels of fatigue you have been feeling. Unfortunately relapse is another but if all your other tests have been good and your chimerism has been unchanged then this is all reassuring. Also if the team were that concerned they would have organised a BM straight away. I know its easy for me to say but try not to worry too much about this and just see what you bloods are like when you go back.

    It sounds like you are doing all the right things and getting on with looking after yourself and enjoying the sun etc. which is definitely the way forward.

    Keep us updated

    BW
    Hayley
  • janemill Total Reaction Points: 2
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