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Kitty
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Hi Krista, My boyfriend had severe gvhd of the gut, that was his main trouble since transplant and like you I googled it and always read the worst! I also used this forum which helped me, as I was literally besides myself. It started about two months after transplant he was unable to eat lost so much weight I think he was…
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Thankfully his counts have come back up & he was doing well was planning on being home Monday, but has come out in a terrible rash which seems to have worsened! They aren’t sure what’s caused it, whether it’s gvhd, infection or a drug allergy as it looks very much as a allergy rash, raised and hot! His line is going back…
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Thanks for your advice, the line is now out but he’s had a few temps since of around 37.6 and headaches! He’s so low and fed up, and his bloods have all dropped slightly which worries him including his WBC and neutrophils which have been in range for so long. The plan is to put the line back in for ECP but that’s going to…
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Thank you for both your advice! They’ve done more cultures as he spiked a temp again whilst on the antibiotics and they was due to finish! They’ve also found on swabs the flu virus, paraflu I think they said so started some anti virals! His platelets have dropped which they have said will be in response to the infection!…
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Thanks for all your advice, I find this forum so helpful! He hasn't had a good week he's felt groggy and his heart rate went up which lead to him panicking (that was his first sign when he was diagnosed) but a few days ago the gut gvhd seems to have flared up drastically. He's been put back on steroids, another drug…
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He was on quite a big dose which they was reducing quickly when they stopped was at 70mg twice a day! There's been the odd times he's had stomach ache which was one of his signs before he got admitted with gut gvhd however other than that he's been ok so far (don't want to speak to soon). The ECP he doesn't mind just like…
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Hey! The rash seems to have improved a lot, especislly on his stomach! They've said his liver looks ok, and fitted a new line today for the TPN which I'm hoping once he's getting fed he has some energy as at the moment is just really low and sleeping all the time! There's been no change to the diarrhoea but gone 24hrs now…
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Thank you for your advice! Tony, the drugs you mentioned his consultant said today the thing that's worrying me the most is the significant weight loss anyway and he really can't afford to lose more now, he can't face food because it's making him sick they are discussing TPN feed tomorrow which makes me nervous also as the…
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Thank you for your advice it has been really helpful & reassuring! So it's day +5 today and my partner has an extremely sore mouth unable to eat or drink or even take his tablets he can barely talk, it's swollen and full of sores and pain killers aren't touching it he's in agony. On top of that he spiked a temperature and…
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Hi Tony, Your transplant sounds just like my partners! He to has also not lost his hair at the moment, which he always worries about as thinks it isn't working! He has a flat count now, and mouth has got even worse which he says is effecting him the most! Thank you so much for your advice it has been extremely useful, and…