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Almost 9 weeks post transplant...slump

Some have very kindly replied to my initial queries and advice when I signed up to the forum last month. I apologise that my replies weren't nearly as long as your own input but sometimes I do this from my iPad, and it's pretty hard to type for ages. Regardless I have found each and every one of your messages to be of great help indeed to me.

My friend (I am living with him through this initial stage) had his SCT almost 9 weeks ago now. He's been doing very well (in my eyes). The last couple of week tho he's been getting more tired and weak, coupled with bouts of diarrhoea. It's really confusing when you vacant get a great day and then the next is the opposite, and so it goes on. I remember someone on the forum telling me it's almost 3 steps forward and 2 back constantly. How true this is!

I only seem to reach out on here when things go off. He has an appointment with the transplant team tomorrow and I have a hunch they may admit him. Anyway, I wish his 100 day mark would hurry up (mid April).

Any of your own similar experiences would be nice to hear. C

Comments

  • Meldidd

    What you have described sounds very typical post transplant. I was well the first few weeks and then I couldn't keep food down and suffered serious bouts of fatigue.

    What is most important is that your friend keeps his medical team informed of how he feels, any changes in his body especially the diarrhoea. Whilst there is the chance he may be admitted, it's not unusual and should be viewed as part of the course rather than a setback.

    Best Wishes

    Rachel
  • Hi there,

    The analogy of three steps forward and two back is very true, and is probably something we can all relate to. Early days in recovery from a transplant is a bit of a rollercoaster ride, with ups and downs, good days and bad. This is because your friends system is still unstable and takes a while to establish and settle down. At 9 weeks even though it probably feels like a long time, it is still very early in the recovery process.

    During this early period up to 100 days and even beyond, our bodies are very vulnerable, and any kind of infection can upset the balance of things. It took me a long time to recover and whilst we have this magical 100 day milestone in our mind the reality is that there is still a long way to go till things get back to what we might consider normal. I was still very low on energy at that time, got fatigued very easily, and still had problems keeping food down and with diarrhoea.

    Whilst these problems persist it is easy to get frustrated and downhearted but hopefully he will still see an improvement in his blood counts when he has a checkup and the main thing is to continue that upward trend.

    As Rachel says its a case of making sure his medical team know whats going on, so mention any concerns he has when he sees them, no matter how small. They will decide whether it is normal or something they need to investigate further and will hopefully be able to reassure him in most case that what he is experiencing is normal.

    I went through a period of particular weakness and had problems with passing out. Fortunately the first time it happened I was in clinic for a checkup and I ended up being readmitted for a week for tests. The cause was never established as everything was functioning as it should, but I think I was just so run down and weak from not eating and with sickness and diarhhoea that I just didn't have the energy to stand for long.Some days I couldn't even stand long enough for them to weigh me!

    It is not unusual to be readmitted for something or other during those early days and it is very easy to take that badly and view it as a huge step backwards. I know it's disheartening but if it does happen try to view it as a good thing as it allows him to get the help he needs to get back on track, and it should also allow you time to have a break from caring for him too.

    I hope this helps, but you know we're here to help you however we can so please stick around for any support you need.

    All the best,

    Steve
  • Thanks Rachel and Steve, your input and advice helps a lot. I now realise that what we are going through is par for the course. He wasn’t admitted that day from the clinic. They think it was c.diff and not GVHD. Yesterday he seems to have turned a corner and got a few bits and pieces done, as well as going food shopping (not left the house for more than a week prior to this). I thin reassurance from the transplant team is what was needed. Possibly he was wallowing too (and rightly so) through his diarrhoea bug, and possibly just need the team to tell him it wasn’t really a setback. His bug seems to be settling, and more of the “real” him is emerging again. Nice to see. I know there will be more hurdles to come, but it’s nice to just have a couple of days’ relief. Over the last couple of weeks I just felt he was going down and down.
  • Hi again and thanks for the update.

    It's good to hear he's feeling better and that he's getting out and about a bit. I'd urge some caution with that and suggest he needs to be careful out in public. I know in some cases it's a necessary evil, but particularly at this time of year there are some nasty bugs about and his immune system is still in its infancy.

    You're right there may be other hurdles to overcome in the future as there's a long way to go, but fingers crossed they're only small ones and not too many of them.

    Please keep us updated as things progress and stay around for support as you need it. You need support just as much as your friend and we're here to help.

    All the best,

    Steve
  • It's good to hear he wasn't admitted.

    Keeping his spirits up is essential. Whilst he is at home are there things he can indulge in which he enjoys? Cards, films, treat food etc. I know I felt as if home was prison at times, so when he is penned it it's at least 'tolerable'.

    Best Wishes

    Rachel

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