This is my first post so by way of introduction, my husband had his transplant on Valentine's Day this year. The best present that we could ever have wished for. He was diagnosed with ALD cirrhosis in March 2015 and then with HCC in September.
He recovered really quickly after the transplant, home after six days, all signs of HE gone, appetite like a horse. All was well until about a month ago, then very tired, no appetite, sleeping all day, aches and pains everywhere. We saw his consultant, who thought it might be CMV, last Friday. Phone call yesterday to confirm and please could I get him back to QE so that they can treat him. Left him there last night, looking very sad!
I was just wandering if anyone has any experience of CMV infection? He was CMV negative, the donor was positive and he completed his 100 day course of Valganciclovir
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Nudgey
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Thanks, Pear for your response. Sounds like you have both been through the mill. Do they continue to monitor your husband's CMV levels?
My husband did take valganciclovir for three months after his transplant as a precaution as the donor was CMV positive and he was CMV negative. Fortunately he had no ill effects from taking it in tablet form, but it is since he stopped that the infection has occurred.
They started intravenous treatment last night because the viral level was so high and will switch to tablets once they have it at a more reasonable level. I think he is already feeling a bit better.
One of my concerns is if it will come back again once he has finished this course of antivirals, but I guess that is in the lap of the Gods.
They do monitor CMV levels but not as vigorously as they would straight after you have had it. It is simply a little reminder that begins with:
'oh doctor someone was asking if his CMV levels are ok - and we said that you have it on your radar' which often leads to 'oh yes, we need to check on that'
This then triggers a test! Sometimes it helps to have it in your 'things to ask list' for future appointments.
I'm so delighted to hear that he is responding to meds and hope he gets better all together soon...
Hi guineapig1 - please find link to National Health Service page all about CMV - it should give you the best explanation for what it is. nhs.uk/Conditions/Cytomegal...
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