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CMV Experiences

PostPosted: Wed Sep 28, 2016 2:30 pm
by CoventryJim
Hi everyone, I was hoping to see what other post transplant recipients had experienced having the CMV virus.

I ask as I have had it now for 4 months and it's starting to bother me that I don't seem to shift it. This is the first time of having it whilst having received a kidney from my father 5 years ago.

The virus was at a high level for 3/4 weeks but has been low ever since. The transplant unit say if you feel fine then don't worry. But it's hard to do that after weekly tests reveal the virus is still in my system.

What are other people's experiences?

Can it effect the kidney function?

And is it serous?

Thanks for any replys in advance

Jimmy

Re: CMV Experiences

PostPosted: Wed Sep 28, 2016 3:13 pm
by wagolynn
Hi CoventryJim,

As I understand it, CMV is a virus we all carry, it normally is overcome by our immune system but when our immune system is suppressed the CMV can start doing it's thing.

I would not expect ever to be clear of it, viruses are very hard to eliminate.

In your case your team are saying the level is low enough not to worry about it, so I would suggest you do just that, stop worrying, and get on with life.

Best wishes.

Re: CMV Experiences

PostPosted: Thu Sep 29, 2016 2:32 am
by suz
Hi Jimmy
I had a transplant in Feb 2014 and as is the normal protocol here I was prescribed valganciclovior 1 tablet daily for 6 months to prevent CMV. 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.

Unlike you the first time I tested positive for CMV I felt very unwell, tired all the time and no energy to put it mildly. The second time I wasn't as bad but not feeling as well as I normally do.

Can you discuss your concerns with your renal physician?

Regards Suz

Re: CMV Experiences

PostPosted: Thu Sep 29, 2016 10:02 pm
by Chris Wright
Jim,

My experience of CMV is from many years ago and seems to be different from yours. So i'll describe it, but suggest that your renal physicians know more than me.

I was transplanted in Sept 1981 and after a few weeks had CMV.

I was very ill with a massive temperature for about 3 to 4 days. My Dad even asked the doctors if i was going to die.

At the time it was known as 40 day fever, as it had a habit of occurring at that time post transplant/immunosuppression.

I was also told that every one has the CMV virus but it is normally dormant, immunosuppression can bring it out aggressively. I have no idea if what you describe as "low enough not to worry about it" is what a lot of people have i.e. the virus but no symptoms.

That was just under 35 years ago. I have had much bigger issues to worry about since then.

If we have renal failure, our loves are shortened and compromised anyway. If there are no side affects, don't waste time worrying, make the most of life.

I hope that helps.

Chris

Re: CMV Experiences

PostPosted: Tue Oct 04, 2016 4:00 pm
by Aimee
I've recently had a transplant, I tested negative for CMV and EBV but my donor was positive for EBV, which I think is similar to CMV as in it is a dormant virus that most of us carry. I also take the drug mentioned above to stop me receiving it from my new kidney.