CMV positive what now?

@myringo Here is what Mayo Clinic has to say about CMV: https://www.mayoclinic.org/diseases-conditions/cmv/symptoms-causes/syc-20355358

It is not an unusual condition, so please do not panic. Call your team first thing Monday and see what their plans are for you. And let us know, okay? For now, make a cuppa tea and relax for the weekend.
Ginger

Icm trying to not panic. I already called the 24 hour coordinator she says she’ll send my Doc the message. I am trying to just breathe. Thanks for responding.

I had it. Found I had it and donar so became active after transplant. Mayo told me many adultshave it in system dormant kind, of like shingles. Because my donar had it too, mine became active. Took antibiotics and eventually went away. Recurred once, back on antibiotics and gone now for years. My understanding is eas to treat but keep monitoring with medical team.

Hi @myringo 😊
Don't panic, CMV is a very common occurrence when the donor is CMV positive and the recepient is negative.
I received 6 months of Valcyte prophylaxis after my kidney transplant to help prevent CMV.
On my 8th month I had GI issues and tested positive for CMV.
I was put back on Valcyte for about 6 weeks and my immune suppression (MMF) dosage was reduced.
My CMV resolved nicely and never returned. I now have CMV antibodies.
It sounds like your viral load is low, which is a good thing. On Monday, they will probably prescribe Valcyte to be started. Did you take Valcyte after your transplant?

I took valcyte for the first almost 3 months they stopped it because it was affecting other blood numbers
I have been feeling nauseous last couple days is that a symptom? I was told to watch for fever swollen glands and sore throat. I am hoping they will put me back on valcyte.

Hi @myringo 😊
Yes, GI issues can be symptoms of active CMV (or maybe you are just a little upset).
Are you a Mayo Clinic patient?
Just an FYI, they have a wonderful Infectious Disease Transplant program that helps to manage CMV if you need it.
When I was positive with active CMV with GI involvement, I spoke with an Infectious Disease doctor that recommended both Valcyte and the reduction of immune suppression to allow my system to develop antibodies against CMV. When I was tested after my CMV resolved, I had developed antibodies against CMV!
I spoke with an awesome Mayo Infectious Disease doctor by video call. I was so impressed. I can't stop singing his praise.
Have you ever spoken to an Infectious Disease doctor during one of your visits to the center?
CMV or BK virus are examples of opportunistic infections that can activate if you are a little over-suppressed, so sometimes the answer is a reduction of immune suppression along with the Valcyte. (The ID doctor will discuss this with the Transplant doctor if they think a reduction is appropriate).
What immune suppression meds do you currently take? TAC and MMF?

No I’m not a mayo patient. I currently take 500 mg of microphenolate 2 times a day and 9 mg Tacrolimus 2 times a day. I am hoping to hear from my coordinator tomorrow. It takes my transplant center a few days longer to get my lab results. I was getting cmv checked every Thursday but I’m going to see if lab will test me on Mondays instead so my center will get the results sooner and not on a weekend. I was a low positive last time for cmv but it was always undetected before. It’s good to know there’s help for it. I’ve been having headache and nausea today so we’ll see what my Dr says tomorrow.

@myringo 😊
Yes, I always have my labs drawn on Mondays so I have the results back (usually) by Thursday. It's definitely not fun to get lab results back on the weekend.
After you speak with your transplant coordinator, please keep us posted. I assume you will be scheduled to have a brief phone call or video call tomorrow with one of the transplant nephrologists to discuss the best plan of action.

Mycophenolate gave me terrible digestive issues, I had to come off it and spent some time in hospital because of it. I lost 4stone in weight in a very short period of time. I now take the adagraff (and prednisone as a replacement to the Mycophenolate)

Good morning @janni1 😊
I am so sorry to hear about your GI experience with MMF. Unfortunately, I think GI issues is a common adverse reaction, but landing in the hospital sounds awful.
How long have you been taking Mycophenolate when the problems started up?
I am a three year post kidney transplant and I am starting to have GI issues now.
My main complaint is acid reflux and a gurgling sour stomach. I have started to take Protonix to see if that helps.
If not, I think they will change me to Myfortic. I see your doctors decided not to try Myfortic and went to Adagraff and Prednisone.
This is the first time I have heard of Adagraff. Are things going better now for you? Has your stomach recovered and your labs are good?
Thank you so much for jumping into this discussion @janni1 ....and it's very nice to meet you!