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Tiredness

I am +52 post transplant, just wondering if people who are further in recovery than I am can tell me when their tiredness started to get better and energy levels increased.
I am also looking for advice on gvhd my skin on top and insides of my legs my underarms and creases of my hands has started to darken and I just look mucky wondering if this is a sign. Thanks
Laura.

Comments

  • Hi Laura,
    Thanks for your post. I think it will be different for each person, but if it helps, this is my experience:
    1. Tiredness - for me, this was impacted because I kept getting a lot of infections and I also experienced low mood, so it is really hard to tell whether these impacted my energy levels, but for me, there was a real turning point around 8 months post-transplant. I still get more tired now (12 months post-transplant) than I did before transplant, and this might be for life, but I genuinely feel like I have much more energy now than I did in the bad times. For me, I think it was a self-fulfilling cycle - so, as and when my body got on top of GvHD, started producing enough blood cells, started fighting infections, etc, I found that I had a better appetite which meant I ate better and had more energy for exercise, when in turn gave me more and more energy, if that makes sense. So I guess the tiredness will definitely change for you as and when your body gets on top of what has happened to it - and that will probably be different for each person - my best advice would be to try to do what you can in terms of diet and exercise to give yourself a helping hand - but also don't do too much and let things take the time they need.
    2. GvHD - I would definitely mention this to your transplant team to get their expert view. For me, it was obvious when I had GvHD. For a couple of weeks I noticed red blemishes on my face and neck, but tests proved inconclusively. Then, literally overnight, the trunk of my body turned into red lumpy hives. I didn't really need the biopsy to confirm that it was GvHD as it was just so different to what normally happens with my skin. But definitely best to get it checked out with the experts as they will know what to look for.

    I hope the above is of some help to you. And I just wanted to say well done and keep going. I know transplant experience is different for different people, but you have got to Day 52, so your body will already be in the process of sorting out what it needs to sort out.

    All the very best,
    Greg
  • Hi Laura,

    As Greg says recovery time varies from person to person but I would say that at day 52 it is still early days for you and you are still likely to be feeling fatigued. For me it was around 4 months post transplant before I really started to feel less tired and more energetic, but I think I was perhaps quite lazy and didn't push myself at all.

    My recovery was given a boost by being put on a high dose of steroids due to the start of skin GvHD which covers your second point and I'll come t in a second. The steroids gave me back my appetite as I'd been struggling to eat until then, and with the extra energy from better nutrition I finally got enough energy to get up and about and became more active. I never looked back from that point.

    If you're struggling to eat that could account for why you feel tired and fatigued and it may not be until you are eating better that you start to feel more lively. I guess it also depends on how your blood counts are doing and even at the stage you are at I still had the occasional transfusion to top me up and get some good blood into me.

    Regarding the GvHD I guess again the signs could vary for each of us but in me it started with dry flaky itchy skin around the hands and face and on my legs, with a rash around my neck and hands showing later. This was more of a pronounced reddening of the folds of my skin around my neck than a mucky appearance as you describe. I did also get some rashes at the top of my inner thighs and the backs of my knees.

    Mention it to your medical team when you next see them and they will know the various ways it can show up and can decide what treatment if any is needed. Remember a small amount of GvHD is a good thing as it is also working to keep your original illness away too.

    I hope you are progressing well generally otherwise. Try not to get too frustrated as it is a long process and you shouldn't rush. You will get there in the end but take the time you need to recover at your own pace.

    Best wishes and please keep in touch.

    Steve
  • Thanks guys. I have mentioned it to my doctors apparently it is post transplant discolouration and should settle and return to normal eventually. I try to get out and about on a daily basis and make sure I rest too. I generally eat well although I must admit it doesn't seem to put me weight on as I am still losing it every time I get weighed at hospital appointments x2 a week. I think personally a blood transfusion would do me good but blood results are okay.
    I have had EBV, so this has been a little set back as had to have regular retuximab and the counts are just dropping back down now. Until counts are 0 I will have to have the retuximab once a week.
    I am just impatient and that has always been my problem, because I bounce back from everything be it illness or life issue and this is just taking a little longer.
    Before my transplant I was never ill. The CML never really caused me any issues, when the medications stopped working it was found out by my bloods not because I felt any different in my self. But now my body has been through termoil and I want to run before I can walk. Don't think I realise it would be this draining.

    Laura
  • Hi Laura,

    I totally empathise with your comment that a transplant is far more draining than expected. I had a cord blood transplant over three years ago and both myself and my family were totally unprepared for the effect it would have on me. Like you, I felt my body could cope well with anything - various chemos for non Hodgkin lymphoma and an autologous stem cell transplant- but this time it was different. At your stage I could do still do very little and wasn't eating properly. My husband made me go out for a drive or a short walk - otherwise I just wouldn't have bothered to leave the house.

    I would say it took at least a year for my energy levels to return to normal - until then I still had a nap in the afternoon. I was 59 when I had the transplant and had already taken sick retirement so returning to work wasn't an issue.

    But now I'm really good and disease free - it was all worth it!

    I haven't had a lot of gvhd but the bit I get is as Steve describes it - no discolouration.

    I'm sure that you'll recover your energy levels given time and will be able to enjoy the better weather when spring finally arrives.
    With very best wishes,
    Sue

  • Hi Laura,

    I am sorry about the way you are feeling, recovery after transplant takes time.

    Both Greg and Steve have offered great advice and really they are the best people to give advice having experienced it. The only thing I will add is that the best way to manage fatigue is to balance small amounts of exercise with rest, research has shown that this will shorten fatigue in the long run. Anthony Nolan has a very good information booklet on fatigue and also a really good post transplant resource called The Next Seven Steps which you might find useful. You can find these at https://www.anthonynolan.org/patients-and-families/order-or-download-publications
    You could always see if the physiotherapy department at your transplant centre could suggest some exercises you could do at home.

    Nearly all patients skin goes through a period of darkening after a transplant, so its very normal. If you develop any rashes or red itchy skin then you must contact your transplant team. Please do not leave it because if it is GvH it could get worse. It is always best to get it checked out first.

    I know its tough Laura but everything you have said is normal, it doesn't feel very nice for you but it will get better.

    Keep us posted on your progress

    BW
    Hayley
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