CMV

[Falkenbach]

Has anyone had experience with post-tx CMV? My bloods are showing CMV, however, I have no symptoms. All my other bloods are normal, and urine tests are also normal. My temperature is fairly normal, my creatinine is normal and I have no overt symptoms, (such as flu-like symptoms).

After some further research, my doctor decided today to put my on treatment (900mg per day of valganciclovir) and told me to rest. So that's what I'm doing. I'm not sure how concerned I should be - clearly it's a serious condition for a tx patient to have, and I don't want to lose my kidney either. But I don't know why I have virtually no symptoms.

The only trouble I've been having lately is headaches. Sometimes my temp is marginally high, but not high enough to be considered fever. 

[Joe Paul]

I cant help other than to include you in prayer. Hoping the drugs work for you, hang in there.

[BigSky]

The only experience I had was that I was CMV negative and they gave me a CMV postive kidney.  All they ever did was have me come in every couple of weeks to get something through a IV.   Even to this day they when I ask about it they really never say alot about it. 

[ahamner]

I also was CMV negative and the transplant kidney was positive.  They prescribed Valcyte for six months post transplant.  It is an anti viral infection preventative/treatment that is supposed to give your body time to develop antibodies to the virus.  It is an expensive drug costing over $2,000 a month.

I stopped taking the Valcyte last month after six months and haven't had any problems as yet.   Look up CMV and transplant recipients on the internet for more information.

[okarol]

Did they check you and you dad for CMV before the transplant? Most adults have CMV (can be active or latent) so Jenna's transplant team treats routinely immediately following the transplant.
Here's more general info: http://www.hopkinsmedicine.org/heic/ID/CMV/.

[Falkenbach]

They prescribed Valcyte for six months post transplant.  It is an anti viral infection preventative/treatment that is supposed to give your body time to develop antibodies to the virus.  It is an expensive drug costing over $2,000 a month.

Yes, that is the brand name of the drug I am on. It is covered by the Pharmaceutical Benefits Scheme here (government scheme) so it doesn't cost me any more than most normal drugs, luckily. As I am on a disability pension card, a bottle costs me a mere $4.90. Without the pension card, it would be around $26, so we're very lucky there.

Did they check you and you dad for CMV before the transplant? Most adults have CMV (can be active or latent) so Jenna's transplant team treats routinely immediately following the transplant.
Here's more general info: http://www.hopkinsmedicine.org/heic/ID/CMV/.

Yes, they did check us. I can't remember from the top of my head, but I think we were both positive? Yes, they do routine testing post tx, that was how they found that my CMV level was high, and therefore possibly active. Thanks for the link.

Thanks for your responses everyone. It's just confusing having no symptoms, and not knowing for sure whether the virus is active or not! I do hope not. In the meantime, I will stay on the Valcyte and hope for the best.

[KT0930]

I had CMV many years after my first transplant, and let me say, it was miserable!!! My temp would be normal then would spike to 102.5, then drop again in a matter of hours. Vomiting, nausea, diarrhea for MONTHS. I kept going to the doc, and they kept saying it was the flu (this was in Jan-Mar). After the third round and second hospitalization, I called the neph's office and spelled it out for them. Told them I had had my flu shot that year (I know, not a guarantee, but a starting point), and I had never had recurring "flu" like this. They finally admitted me and did test after test after test. It took two days of IV antivirals, and I was finally symptom free.

I don't know if this helps you, or if it's even what you were looking for, but yes, I've had it. Be glad your asymptomatic!!!

[Falkenbach]

I am glad to be asymptomatic, I just hope it stays that way! I really don't know what to expect.

[angela515]

Why weren't you put on Valcyte right after your tx if you were both positive before tx? That's usually wat they do.. at least at the two hospitals I had my transplants at. I took valcyte right after transplant because my and my donor were both positive now I am off of it.

[Falkenbach]

I'd have to double check about us both being positive, I can't remember. I think at least one of us was anyway.

But yes, my doctor is actually starting to ask the same question - he had a look back into my file and I was recorded as being at "moderate risk" - so he was saying he doesn't understand why I wasn't started on it. !! Great to hear that now, huh?  I guess I'll be asking further questions about that.

The doctor is somewhat new to treating post tx patients, I think he was going to speak to the other doctors/staff that have been dealing with me to see if there was a reason why I wasn't started on it. I would certainly like to know that myself, and will follow that up.

[Stu]

I had CMV many years after my first transplant, and let me say, it was miserable!!!

Aint that the truth!?!!

I had CMV three months after my first transplant, knocked me flat on my back for over three months. I felt totally ripped off, new transplant and all, sicker than when I was on dx.

Many, many people are carriers of this desease (described by my doctor at the time as glandular fever's big, nasty, brother), and you can carry it for your whole life without ever knowing. Of course the immunosuppressants obviously play a factor in this for tx patients.

Keep praying (or touching wood, doing chants, poking voodoo dolls, or whatever takes your fancy) that you keep asymptomatic!

[Falkenbach]

I have remained completely asymptomatic, and my blood results are showing the levels have significantly decreased. As of today, my Valcyte was reduced to 450mg per day, which they will keep me on for 3 months as a preventative measure. But, everything looks as though I'm safe from this nasty virus for the time being.

[Falkenbach]

I landed in hospital last Monday with what I thought was gastro. Renal docs, upon hearing of my fever, suspected CMV and had me admitted to the ward.

I was treated intensely for CMV for days, awaiting various test results. I felt lousier than I can remember feeling in a loooong time, if ever.

Cut a long story short - it wasn't CMV. I had noravirus (sp?) a type of gastro which is in epidemic proportions around Australia right now. The dehydration on Monday sent my creatinine up to 186, which - along with the possibility of CMV infection - put me in a state of abject terror.

On Wednesday, my husband also came down sick, presumably with the same virus. So he had to stay home and could not come to visit me. I was in an isolated room to prevent the spread of the infection around the hospital (as they have already had whole wards shut down because of it). So, stuck in a closed room, with no visitors - I just sat there and bawled for a few days. It was boring, lonely and frightening. Perhaps I was overreacting, who knows.

But I'm home now, and feeling very well. So all is good.

[stauffenberg]

While CMV can be controlled with medications, the unfortunate thing is that having it after a transplant tends to reduce the life expectancy of the kidney.

[Romona]

Hi Louise, I was thinking about you. I thought to myself, you haven't posted for awhile. Hope you continue to do well. 

[livecam]

I landed in hospital last Monday with what I thought was gastro. Renal docs, upon hearing of my fever, suspected CMV and had me admitted to the ward.

I was treated intensely for CMV for days, awaiting various test results. I felt lousier than I can remember feeling in a loooong time, if ever.

Cut a long story short - it wasn't CMV. I had noravirus (sp?) a type of gastro which is in epidemic proportions around Australia right now. The dehydration on Monday sent my creatinine up to 186, which - along with the possibility of CMV infection - put me in a state of abject terror.

On Wednesday, my husband also came down sick, presumably with the same virus. So he had to stay home and could not come to visit me. I was in an isolated room to prevent the spread of the infection around the hospital (as they have already had whole wards shut down because of it). So, stuck in a closed room, with no visitors - I just sat there and bawled for a few days. It was boring, lonely and frightening. Perhaps I was overreacting, who knows.

But I'm home now, and feeling very well. So all is good.

CMV came along with my kidney too.  The transplant center didn't say anything about it until I did some reading on the subject and asked.  As far as I know I've never had a problem with it.

Norovirus is another subject.  The virus is spread routinely on cruise ships.  You'll hear reports of a hundred or more people getting sick on a ship and that is usually the cause.

I had a fun case of it last year that lasted for 10 days or so courtesy of the good ship Mercury.  It makes you feel really bad for a really long time.  There isn't much to be done except to wait until you get better. 

I'm happy that it wasn't CMV that affected you but sorry you had to deal with the Norovirus thing. 

[Roxy]

Cycobully, I'm sorry you weren't feeling well and had to be in the hospital. Good to hear your home and feeling much better! 

[goofynina]

Sorry to hear you had to go through all that but i am glad you are feeling better      Take care my friend 

[kitkatz]

Okay here is a dumb question.  I have blood results back and it says my CMV is high. I do not have a transplant but am on dialysis. Should I follow up on this with     the doctor?

[Falkenbach]

I would say so KitKatz, but I don't really know as I've never been a dialysis patient. I'd follow up just to be on the safe side, though.

[st789]

Transplant center never mentioned CMV virus or Valcyte to me?

[angela515]

Then you were probably not CMV positive, nor was the donor kidney. If either was, you would of been put on Valcyte for the first 3-6 months post-transplant.

[Roxy]

Ya mine never told me either. I was on acyclovir for 3mths post transplant, but they never once told me that I was positive for CMV and so was my donor until I directly asked.

[Falkenbach]

I've got a feeling that one of us (either myself or my father) had been exposed to CMV, but I wasn't put on Valcyte straight away. Not until it started showing up in my blood tests, and then I was treated despite not having any symptoms.

I keep meaning to go back into my records and check that detail, and I keep forgotting. *smacks self in forehead*

[stauffenberg]

Most of the world's population has been exposed to CMV.  The problem for transplant patients arises when they have not been exposed, since it is almost certain that they will receive a kidney from someone who has been exposed, which will carry the infection.  Since the transplant recipient has no antibodies to CMV and will have difficulty developing them adequately while taking immunosuppressive drugs, the CMV infection which results is usually quite severe.  Prophylactically, the patient unexposed to CMV is almost always put on Valcyclovir before the transplant, but this is not always effective in preventing serious symptoms of CMV infection post-transplant.