CMV ?

[Grey]

Hi, It seems my donor was CMV + and I was CMV - . I do not understand a lot about this matter so was wondering if anyone else has crossed this issue and what were the implications. This was not mentioned before transplant and now that I asked about why I was taking Valganciclovir I was told about CMV but more info was sketchy. Be that as it may all want to do is understand everything about the issue so turn to others on this site that may have been through the same experience and ask about what you now know and the implications if any. It appears that half the population is infected by this virus and if they eliminated all donors with this there would be very few transplants taking place. Any way just by way of understanding please give me some feedback.

[wagolynn]

Hi Gray,
I am not a medic...

Your medication (Valganciclovir) should overcome any CMV around, I would expect you will only get vague answers from the transplant team, they don't want to worry you unnecessarily. If you choose to search on the internet there is information there but take care about the source, I would suggest you print stuff you found, and then take it to your team and talk it through, it is complex, and, I think, not easy to deal with on your own.

Best wishes.

[jooles]

I too take Valganciclovir. Originally one 450mg tablet per week, then one every other day, now one every day until Sept 19th (six months post TX). Dosage increase is due to how well the transplanted kidney is functioning. More is needed the better the kidney is working to stop CMV virus taking hold. My donor was positive and I am negative. Since my transplant, I have been tested twice for CMV. Once when they were trying to establish the reason for dizziness etc (eventually attributed to a new BP tablet which had been introduced) and I had been readmitted; and the other when my WBC mysteriously plummeted. Reading up on it can be alarming. It was explained to me as one of two viruses they have to be wary of recipients contracting (the other being BKV) and is why we have to be careful of being near chickenpox - as it belongs to same family ... Lots of people take it so I am reassured!
Jooles

[MandyA]

Hi Grey,

I too took Valganciclovir for the first six months post transplant, and, like Jooles, the dose was increased as my kidney function improved.

That's a very expensive drug, by the way... My GP refused to prescribe it, and I had to get it from the hospital, as one bottle costs around £1000, apparently.

I haven't had CMV, but I have had BKV virus, another one which is very common in the general population. It causes no symptoms in normal people, but can affect transplanted kidneys.

For six months, I stopped taking MMF, one of my antirejection meds, to allow me to fight off the BKV. Obviously, during that time, I was at greater risk of rejection of the kidney.

My levels of BKV have finally abated, and I have just restarted a lower dose of MMF this week.

Good luck.

Mandy

[Grey]

Thanks girls, helps to see other's experiences. I will soldier on regardless and hope for the best!

[sporti]

I'm on the same drug till 6 months. That's all I know

[Tibbs]

I took Valgan for the first 3 (or possibly 6) months as well - it was prophylactic in my case.

[Chris Wright]

All i can say is that CMV used to be known as "40 day fever" and i got it, or a flare up, about 6 weeks post transplant.

Never have i had such a fever, i felt like John Mills in one of those old war films set in the jungle where he wants to sacrifice himself for the others.

My Dad walked in to visit me and immediately went to find a Doctor to ask if i was going to live.

From the above, they now have drugs for it, from my experience, TAKE THEM!!!!!

Grey, hope it goes well.

Chris