Cytomegalovirus (CMV)

[Lori Patrick]

I just returned home from a 6 day stay at the hospital with CMV. For a week or so prior my skin hurt and it was difficult to walk, especially early in the day. I am blessed with CMV! lol The medication is $1789.00 for 2 weeks!!!! Drink lots of water and rest. It is one of the viruses that they test for with each blood test. Everyone has this virus, but it is like chicken pox. Those of us with no immune system get whammied when it attacks us. I'd never heard of it. Lori

[Neil Cuadra]

Sorry to hear this, Lori. I hope you can ride it out.

CMV can give you symptoms like joint pain, fatigue, and diarrhea, often for a few weeks. Doctors probably don't worry much about those types of symptoms but they have to be careful that the infection doesn't spread to any organs.

Not everyone has this virus, at least in the United States. Approximately two thirds of the people in a U.S. city, on average, are CMV positive, while the other one third are CMV negative.

During a transplant, a CMV negative patient is at high risk of CMV infection if the donor is CMV positive. Ganciclovir is often given during a transplant to try to prevent this, and it may also be given for patients who come down with a CMV infection later. As you noted, being immunocompromised puts you at higher risk of CMV infection.

Good luck getting past this bump in the road.

[squirrellypoo]

Sorry to hear this, Lori! Both my donor and I were CMV negative, but it didn't stop other latent nasties from reactivating post-transplant! At least the transplant teams are monitoring stuff like this so it can be treated before it goes further.

Take it easy and I hope you're feeling better soon.

[Lori Patrick]

Thanks for the replies. I am soooooooo tired and achy. I am just glad they knew what it was! Blessings to you, Lori

[mausmish]

Lori,

So sorry to hear about your CMV attack! Hang in there. This too will pass. I'm sending healing thoughts your way.

Hugs,
Karen

[Lori Patrick]

I was not told (or I don't recall - likely I don't recall!) about CMV with my brother and I. Evidently 80% + in the midwest (cows) have this dormant. It has kicked my butt. Now there is a Measle outbreak in our area...... great. I will be going nowhere at peak times and when I go out I will wear a mask. My nurse told me that in the 80's when a transplant patient got CMV they died. Thank God for medical advancements. Thank you for all the comments. Just another bump in the road!

[Steve_F]

In May last year (YES The whole month!) I was in the hospital for GVHD in my gut. CMV showed its' ugly head and I felt like I was kicked by a cow! A couple weeks of vangocyclovir(?) and increased steroids got me through it, although at one time I was carrying a couple gallons of extra fluid (I SLOSHED).Once it was under control, I was allowed to come home. It poked its' head up a little a couple months later in the form of elevated counts, but not enough to hospitalize me. Docs caught it and slapped it with a return to steroids and vancyclovir for a few weeks.
Haven't seen any indicators for 5 months now. so my conclusion is to hang in there...IT GETS BETTER!!!!!

[Lori Patrick]

Steve, Wow. I feel for people who have gut gvhd . I began doing stretches and walking some to get some of my energy back and to ease my achiness. My husband got my refill for vancyte and it was $6000.00 + for 100 pills. Thankfully our prescription benefit is good. I had my blood tested this past Thursday but they do not have the tighter (sp?) back to see where I am with the cmv. It seems it is always something! But... it could be worse.

Thank you for your response. I have to get better and more energy so my husband and I can go on our motorcycle trip in May-June! Lori