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  • NicholaNichola Total Reaction Points: 9
    Just following on from the above, I have found the below link on the Macmillan website, which recommends you contact your local council to see whether he is eligible for a blue badge or not...

    http://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/help-with-transport-and-parking/blue-badge-scheme.html

    Might be worth a try :)
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Mandy

    I am pleased that your brother is doing well, that is great. I just want to reiterate what Greg and Nichola have said, its all good advice.
    Going out should be encouraged along as he feels ready and well enough but it is a balance. You do need to use common sense and avoid large crowds etc but its really important that he doesn't isolate himself away. This is an essential part of his recovery and getting back to his 'normal' life, the reason he had the transplant in the first place.
    There are no restrictions on driving other than he feels well and safe enough to do so. Great tip from Nichola about the blue badge, many patients do not even think about this and it will make his life a bit easier.

    Keep in touch
    Hayley
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Thank you Nichola and Hayley some very helpful tips from both of you.
    My brother always appreciates the input. He is back behind the wheel and it is good that he can get that independence back
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Hi all,

    My brother is still doing really well generally and quickly moving towards day 80 shortly, which is good news!
    His medical team are now reducing his cyclosporine quite rapidly which is also good however it still leaves us wondering how other peoples experienced this time, regarding onset of gvhd etc?

    If anyone has any specifically related problems or other tips at this time we would appreciate them?

    Many Thanks
  • greg777 Total Reaction Points: 59
    Hi Mandy,
    Glad to hear that your brother is doing really well. Reducing cyclosporine around this time is fairly normal I think. You might hear doctors referring to acute and chronic GvHD - I think the difference between the two is whether it happens pre or post 100 days although I think the split is quite arbitrary. Acute tends to flare quickly and severely, chronic tends to be less quickly developed and longer lasting. They say some GvHD can be good as an attack against the disease but too much of it is bad, so it remains a balancing act to get things right. I had acute GvHD of the skin, liver and gut which flared up around Day 50. For me, it was obvious that I had GvHD - literally overnight, my digestive system stopped working and I came up in a blotchy rash on the trunk of my body. I didn't have symptoms of liver GvHD - it came up in blood results and I think it was fairly mild. With chronic GvHD, I think you can get it in a lot more organs but thankfully I have not had any experience of that myself, but I know others on the forum have so hopefully will be able to offer insight.
    My advice would be to try not to worry about it - there is nothing you can do to influence it and if your brother does get some, try to look on it as a positive as some of it is considered to be positive.
    Hope this helps. Please ask away if I can help further.
    All the best,
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Mandy,

    Wow those 80 days seem to have gone quickly. It doesn't seem like 5 minutes since we met at the Patient and Families day in Birmingham and at that stage your brother was about to start his transplant. I'm really pleased to hear he is doing well and it's a good sign that his medical team are able to reduce his Cyclosporine.

    I would say try not to worry too much about GvHD as it may not happen. It doesn't affect everyone but if it does start then it can usually be controlled and treated. Your brother just needs to be aware of what is going on with his body and let his medical team know if he notices anything different or unusual, particularly with his skin, eyes or tummy. Fingers crossed he will get through this without any issues and continue his recovery unhindered.

    All the best,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Mandy

    Glad to hear that your brother is doing well. As the CSA is being reduced he is more likely to experience GvHD but this is not a guarantee. So just be vigilant for any skin rashes or change in bowel habit and let his transplant team know if anything changes. Remember that GvHD is a good thing and it just needs to be controlled but if he doesn't get any GvHD than that isn't a bad thing either. So the best advice is to carry on doing what you are doing and just keep in touch with his team if and when he gets any symptoms.

    BW
    Hayley
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Thank you Greg Steve and Hayley,

    Indeed the time seems to be whizzing past quite quickly now and we are so glad he is still heading in the right direction thank goodness
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Hi all well my brother is still doing well..... bit of an understatement really, he's doing great! This week he has had results of first bone marrow after transplant and he is in remission which is brilliant news to hear
  • greg777 Total Reaction Points: 59
    Fantastic Mandy, brilliant news! It is always great to hear good news stories!
    Wishing you the very best,
    Greg
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Thanks Greg, we are very aware that we are not out of the woods by any means but it is just good to hear some more positive news
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Hi all,
    Just a quick update my brother is completely off cyclosporine now so we are all hoping that nothing major starts off and keeping our fingers crossed of course but I was wondering if this is the time when there is a higher risks of complications and if anyone out there experienced any particularly around this time?
    He has finished about 5 days now?
    Many thanks
    Mandy
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Mandy, that's great news and he seems to have made fantastic progress to be off Cyclosporin already.

    I would have thought if any problems were going to show up with such as GvHD they would have appeared as the Cyclosporin was reduced, which is what happened for me so they stopped reducing my dose and I didn't come off it for about 2 years. I have to say that having suffered GvHD post transplant I haven't experienced any problems since the Cyclosporin stopped.

    Fingers crossed everything continues smoothly.

    All the best to you all,

    Steve
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Hi Steve, thanks so much thats what we think too! It does seem very quick to be off it already doesn't it?
    However the team are really happy with his progress so even though we can't get ahead of ourselves as we know how things can change quickly along the journey we are indeed hoping that he reaches a full recovery in the years to come.
    We hope your keeping well and thanks for your wishes
    Take care

    Mandy
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Mandy

    Glad to hear that your brother is doing well. Its positive to get off the cyclosporine, is he about 4 months post transplant now? Obviously he is still at risk of GvHD but the longer he goes off CSA and with no GvHD the less likely he is to get it.
    Sounds like its all going well.

    Best wishes
    Hayley
  • Mandy_22Mandy_22 Total Reaction Points: 0
    Thanks Hayley

    Yes he is still doing fine and it's day 124 today so your right about 4 months post transplant. We are still in early days stage yet I guess but we are very pleased how he's recovering, and it's lovely to hear he can go and do a little bit at work now and again ( which helps him get some normality back!)

    Thanks for your kind wishes
    All the best
    Mandy
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