Re: CMV virus seven months post TX

jooles · Post by **jooles** » Sun Oct 18, 2015 8:44 pm

Hello
Anyone else had CMV after stopping Valganciclovir at six months? Have had low white and red blood count and platelets; a UTI and CMV all confirmed in the last ten days! Back on 900mg of Valganciclovir twice a day ... Stupidly Googled (a lot!) and have scared myself half to death!

Thanks for any replies
Jooles

suz · Post by **suz** » Mon Oct 19, 2015 2:51 am

Hi Jooles
I tested positive for CMV 10 months post transplant last December. I had been feeling unwell with a mild sore throat, headaches and very low energy levels. I was put back on Valganciclovir 450 mg daily, it took a few months for my energy levels to return to what is normal for me. After about 6 months the valganciclovir was reduced to 450 mg 3 times a week and this will be reviewed in December.

I googled too initially, but discussed in detail with my consultant and came away feeling far more positive.

Hope all goes well for you and you are feeling better soon.

Regards Suz

Grey · Post by **Grey** » Mon Oct 19, 2015 1:02 pm

Joules Dear, DO NOT PANIC. My donor was CMV positive but so far I have avoided it. However I did mysteriously get BKV, a similar virus and my white cell count is down at 1.8 at the moment, very low. I have had a sore throat for some time now, and expect to develop a cold o flu but it never happens. Anyway the biggest problem with low white count is you will be very susceptible to all manner of viruses least of all cold and flu, which as we head for winter is a big problem. I have been told to almost stay in isolation until my count improves only venturing out on what they call "essential travel" apart from that I seem to be coping, so hope the same happens with you. You know my email if you want to chat anymore. Good luck dear !

Chris Wright · Post by **Chris Wright** » Mon Oct 19, 2015 2:09 pm

All our experiences are different but for what it's worth this is mine:

CMV used to be called 40 day fever as it often hit 6 weeks after Tx.

I had it, and i have never felt so ill in my life.

I had a huge fever and was virtually delirious for about 3 days.

I quite quickly recovered and my consultant at the time said to me, that having CMV tended to be a sign of a long lived kidney but they didn't know why.

That was back in Nov 1981, so he was right!

But it was a rough 3 days.

Jooles, maybe a different cause to yours, so may or not be of interest.

Stay well.

Chris

jooles · Post by **jooles** » Mon Oct 19, 2015 8:32 pm

Hey! Thanks chaps! As always, feel a little better after reading responses. Will know more after wed appoint and bloods. Last week showed creatinine of 124 and egfr of 44 which are good figures for me. Had very low wbc before and stopped mmf for a while. Now swapped to myfortic. Still at work in school of 1500 but had my flu vac promptly so fingers crossed!
Put on best part of two stone but hey-ho, little price to pay.
Hope all is ticking along comfortably with everyone.....
Jooles