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Postby Sarahf » Wed Jun 08, 2016 10:08 pm

Hi I'm after advice.
Brief description my daughter who is now 22 went into kidney failure out the blue in May 2015 started dailysis end June had a living unrelated transplant Octover 2015. Since feburary this year she keeps getting CMV as the donor was positive and daughter negative, (this was not pointed out before transplant) they have prescribed her in the past valganciclovior on all the occasions and when bloods come back negative they stop the dose however on the last occasion it showed up (3 weeks ago) because the reading was low at 2.49 they didn't prescribe valganciclovior and are just monitoring her at weekly bloods, what my question is how long can't it take for CMV to clear off and do one!, if it wasn't for the CMV and the odd occasion of low white blood count it's been plain sailing. As mu daughter is young and kidney failure came out the blue you can imagine that this has been a shock for her and at times I think she acts/ feels that it was just a bad dream I am helping her come to terms with all of it but until I feel she fully understands I'm her extra eyes and ears and I try to do and help her by dropping hints on what she should do, hope that all makes sense.
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Joined: Mon Jun 29, 2015 4:22 pm


Postby suz » Thu Jun 09, 2016 3:15 am

Hi Sarah
I had a transplant in Feb 2014 and as is the normal protocol here I was prescribed valganciclovior 1 tablet daily for 6 months. In December 2014 I tested positive to CMV at a very low level. Initially I was prescribed valganciclovior 1 tablet daily and then 1 tablet 3 times a week for 12 months despite testing negative to CMV 2 months after the positive reading. In Feb 2016, 2 months after ceasing valganciclovior I tested positive to CMV again a low reading and was again prescribed valganciclovior 1 tablet 3 times a week. My renal physician who I see every 2 months has indicated that I will need to continue taking valganciclovior at least 12 months.

Both my donor(deceased) and myself were positive to CMV, although it had never been a problem for me in the past and until I was tested when my kidneys failed I was unaware I had, had the virus . My understanding is that once you have the CMV virus it remains in the body and can reoccur at any time. If your immune system is supressed as is the case with people who have had a transplant it can make you more vulnerable.

Not sure if this is any help. All the best to you and your daughter.
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Joined: Fri Apr 10, 2009 7:33 am
Location: Australia


Postby jooles » Thu Jun 09, 2016 8:51 am

Hi Sarah
My transplant was just over a year ago. My donor was unrelated and was CMV positive whilst I was negative. I took valganciclovior for the first three months then contracted CMV so went back on this time double dose. The first year for me was all about a low WBC which can also be caused by the anti-rejection tablets. Initially I took MMF but was swapped several times until they found one that didn't reduce my blood count. There were lots and lots of changes in types of medication as well as dosage until my results remained stable. I hope this helps and good luck to your daughter ...
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
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Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset


Postby Chris Wright » Sun Jun 12, 2016 6:18 am


I had an outbreak of CMV in 1981, 6 weeks post transplant when i was your daughter's age. They didn't treat me then other than try and control my temperature, i assume because there were no drugs developed then.

For what it's worth, once i was better, the Dr's said to me, that patients who get CMV tend to have long lasting kidneys.

It's a very difficult thing to do, being the ears and eyes of a grown up child. I certainly didn't let my parents anywhere near my treatment decisions, but maybe i was just bloody minded!

I hope your daughter feels better and has a long and successful transplant.

Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
Posts: 115
Joined: Sun Nov 19, 2006 9:21 pm

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