Re: Epstein Barr Virus post transplant

[Guest guest]

Been there, done that. And survived.

That's the good news. Quantell's EBV levels hovered in the " wow " range

for many months (the " many " part is the bad news). But the levels

eventually came down again. And he has not yet developed PTLD. (More

good news, posttransplant lymphoproliferative disorder is extremely

rare in adults.)

Balancing the immunosupressives were especially difficult during the

high EBV time. But Quantell is also in chronic rejection, so that

likely skews the difficulty.

I think that the general weakening caused by the EBV was a contributing

factor in Q's PSC recurrence and the de novo AIH. But that's just my

opinion.

Pam

(mom to Quantell, 18, dx 1996, tx 2001, dx recurrence with AIH overlap

2006)

[Guest guest]

Welcome

to the Post-Transplant “Herpes 101” class. We’ll be meeting in the Yahoo Group

dorm. There’s no end to the destruction

these little buggers can do and seemly no end to the different forms they can

take.

1st semester, we’ll

learn about “CMV”, from Ken, Ali, & Barby

2nd semester,

we’ll learn about “Chicken Pox” from Ken

3rd and final

semester, athan you’ll be teaching us about “Epstein Barr”

All kidding aside, Herpes

(any of them) is some dangerous ~#`^*!

Each in their own way can really damage your

new liver. athan, I’m

sure you already know to ask your coordinator to handle your insurance company,

save your energy to fight off this virus.

They have no choice but to pay, it’s not something you can cure by

staying home on the couch. Besides,

your being really sick and in the hospital will cost

them much more, they just like making life hard. Hang in there, it’s going to take

time, but this too shall pass.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

-----Original Message-----

Well, they finally have a diagnosis for me which explains all the

fevers

I've been having. I've got Epstein Barr Virus (that's

Mono).

___

[Guest guest]

Welcome

to the Post-Transplant “Herpes 101” class. We’ll be meeting in the Yahoo Group

dorm. There’s no end to the destruction

these little buggers can do and seemly no end to the different forms they can

take.

1st semester, we’ll

learn about “CMV”, from Ken, Ali, & Barby

2nd semester,

we’ll learn about “Chicken Pox” from Ken

3rd and final

semester, athan you’ll be teaching us about “Epstein Barr”

All kidding aside, Herpes

(any of them) is some dangerous ~#`^*!

Each in their own way can really damage your

new liver. athan, I’m

sure you already know to ask your coordinator to handle your insurance company,

save your energy to fight off this virus.

They have no choice but to pay, it’s not something you can cure by

staying home on the couch. Besides,

your being really sick and in the hospital will cost

them much more, they just like making life hard. Hang in there, it’s going to take

time, but this too shall pass.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

-----Original Message-----

Well, they finally have a diagnosis for me which explains all the

fevers

I've been having. I've got Epstein Barr Virus (that's

Mono).

___

[Guest guest]

Yeah I know what you mean Barb! It just seems weird that pre transplant

the only herpes type virus that I'd had was chicken pox, but now that

I'm post tx I've had two more of them (CMV and EBV) within one year.

It's almost like some kind of protective barrier is gone. The

infectious disease doctor I saw today said that it's actually possible

that I got both the CMV and the EBV at the transplant (either from the

liver or the blood transfusions) and they just sort of hung around

latent for a while before they started causing problems.

I am letting the docs handle the insurance company... hopefully it will

work out. The strange thing is that Valtrex is on their formulary so

I'm not sure why they don't want to cover it.

Thanks for your encouragement!

athan

[Guest guest]

Yeah I know what you mean Barb! It just seems weird that pre transplant

the only herpes type virus that I'd had was chicken pox, but now that

I'm post tx I've had two more of them (CMV and EBV) within one year.

It's almost like some kind of protective barrier is gone. The

infectious disease doctor I saw today said that it's actually possible

that I got both the CMV and the EBV at the transplant (either from the

liver or the blood transfusions) and they just sort of hung around

latent for a while before they started causing problems.

I am letting the docs handle the insurance company... hopefully it will

work out. The strange thing is that Valtrex is on their formulary so

I'm not sure why they don't want to cover it.

Thanks for your encouragement!

athan

[Guest guest]

-----Original

Message-----

now that I'm post tx

I've had two more of them (CMV and EBV) within one year.

It's almost like some kind of protective barrier is gone.

Ken too, 1st CMV and last week Chicken Pox (and he had

them when he was a baby!) The

protective barrier is gone, it’s called immune suppression. Ken was told…..last month when he had an episode of rejection

they upped his Neoral from 100 to 400 and that was more than enough to put out

the welcome mat for the Chicken Pox.

The good news is they lowered his Neoral, stopped his CellCept and after

several days of IV’s they let him come home on Valtrex. When I saw him today, his pox were so

much better, so lets hope it works that fast for you

too. You’ve been sick long

enough. Once you start to feel better

post transplant, getting sick again (no matter what the reason) is just the

pits! It’s like OK, I’ve

done my time - now body be good! Please keep us updated and let us know how

your doing.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

-----Original

Message-----

now that I'm post tx

I've had two more of them (CMV and EBV) within one year.

It's almost like some kind of protective barrier is gone.

Ken too, 1st CMV and last week Chicken Pox (and he had

them when he was a baby!) The

protective barrier is gone, it’s called immune suppression. Ken was told…..last month when he had an episode of rejection

they upped his Neoral from 100 to 400 and that was more than enough to put out

the welcome mat for the Chicken Pox.

The good news is they lowered his Neoral, stopped his CellCept and after

several days of IV’s they let him come home on Valtrex. When I saw him today, his pox were so

much better, so lets hope it works that fast for you

too. You’ve been sick long

enough. Once you start to feel better

post transplant, getting sick again (no matter what the reason) is just the

pits! It’s like OK, I’ve

done my time - now body be good! Please keep us updated and let us know how

your doing.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

Cripes, Jonathon -- I'm sorry to hear you have been laid low by this, but glad

that you have

an answer. That's got to reduce the stress a little, I hope.

Hoping you bounce back quickly!

Colleen

[Guest guest]

Barby wrote:

> Is Valtrex the same as Valcyte? I took the valcyte for the cmv

> after I had finished the IV infusions of gancyclovir. The Valcyte is

> certainly expensive at about $1500for a month's supply.

Valtrex is similar to Valcyte but not the same thing. Valtrex is

Valacyclovir and Valcyte is Valgancyglovir.

I did finally get the insurance company to cover the Valtrex, but

they're making me get it in ten day increments with a new $35 copay each

time. So I'll end up paying $105 instead of $1100.

athan

[Guest guest]

Barby wrote:

> Is Valtrex the same as Valcyte? I took the valcyte for the cmv

> after I had finished the IV infusions of gancyclovir. The Valcyte is

> certainly expensive at about $1500for a month's supply.

Valtrex is similar to Valcyte but not the same thing. Valtrex is

Valacyclovir and Valcyte is Valgancyglovir.

I did finally get the insurance company to cover the Valtrex, but

they're making me get it in ten day increments with a new $35 copay each

time. So I'll end up paying $105 instead of $1100.

athan

[Guest guest]

Barby wrote:

> Is Valtrex the same as Valcyte? I took the valcyte for the cmv

> after I had finished the IV infusions of gancyclovir. The Valcyte is

> certainly expensive at about $1500for a month's supply.

Valtrex is similar to Valcyte but not the same thing. Valtrex is

Valacyclovir and Valcyte is Valgancyglovir.

I did finally get the insurance company to cover the Valtrex, but

they're making me get it in ten day increments with a new $35 copay each

time. So I'll end up paying $105 instead of $1100.

athan