CMV Issus

cutiepatootie · Nov 11, 2008

So before the tx I had never had CMV, and when I got my new lungs they had CMV. So I am always getting it now, I never get really sick from it because there always testing my blood, every week or two. So they always catch it early and put me on antibiotics, now they are trying something new with an IV treatment once a month, it takes so long about 6 hours. Any how, the Dr's. were hoping that the CMV would go away on its own, and it hasn't which concerns me. I was wonder if any one else had these issus or problems too?!? And if there CMV went away for good eventually.

Any ways besides that I am doing really, really well, no other complaints.

Karla

cutiepatootie · Nov 11, 2008

So before the tx I had never had CMV, and when I got my new lungs they had CMV. So I am always getting it now, I never get really sick from it because there always testing my blood, every week or two. So they always catch it early and put me on antibiotics, now they are trying something new with an IV treatment once a month, it takes so long about 6 hours. Any how, the Dr's. were hoping that the CMV would go away on its own, and it hasn't which concerns me. I was wonder if any one else had these issus or problems too?!? And if there CMV went away for good eventually.

Any ways besides that I am doing really, really well, no other complaints.

Karla

cutiepatootie · Nov 11, 2008

So before the tx I had never had CMV, and when I got my new lungs they had CMV. So I am always getting it now, I never get really sick from it because there always testing my blood, every week or two. So they always catch it early and put me on antibiotics, now they are trying something new with an IV treatment once a month, it takes so long about 6 hours. Any how, the Dr's. were hoping that the CMV would go away on its own, and it hasn't which concerns me. I was wonder if any one else had these issus or problems too?!? And if there CMV went away for good eventually.

Any ways besides that I am doing really, really well, no other complaints.

Karla

cutiepatootie · Nov 11, 2008

So before the tx I had never had CMV, and when I got my new lungs they had CMV. So I am always getting it now, I never get really sick from it because there always testing my blood, every week or two. So they always catch it early and put me on antibiotics, now they are trying something new with an IV treatment once a month, it takes so long about 6 hours. Any how, the Dr's. were hoping that the CMV would go away on its own, and it hasn't which concerns me. I was wonder if any one else had these issus or problems too?!? And if there CMV went away for good eventually.

Any ways besides that I am doing really, really well, no other complaints.

Karla

cutiepatootie · Nov 11, 2008

So before the tx I had never had CMV, and when I got my new lungs they had CMV. So I am always getting it now, I never get really sick from it because there always testing my blood, every week or two. So they always catch it early and put me on antibiotics, now they are trying something new with an IV treatment once a month, it takes so long about 6 hours. Any how, the Dr's. were hoping that the CMV would go away on its own, and it hasn't which concerns me. I was wonder if any one else had these issus or problems too?!? And if there CMV went away for good eventually.

Any ways besides that I am doing really, really well, no other complaints.

Karla

Liza · Nov 12, 2008

Hi Karla,
My daughter, Anna, was CMV negative and her donor was CMV positive. Right after transplant they gave her some meds by IV for this, then a scheduled IV of ??? can't recall the name for a total of 6 doses spaced apart. She was done with the IV meds. by the end of Nov. (transplant was on July 25). The IV run time was usually about 2hrs but it ran for 3 one time. She was on oral during this time as well, Mmmm, Valcyte, for the first year. All this time they checked her blood work for CMV. At the end of her first year they changed her from Valcyte to Vancyclovir. She was lucky, that she never(knock on wood here) got CMV. We know a guy that got his double lung in March '07, same thing as Anna, he was -, donor was +, same treatment, same transplant center even, he did have a bout with CMV, once or twice. I think he's not gotten it again after his first year. I could ask him if you like.

I'm sorry I can't offer up any real help, but I thought you might like to know what my daughter's regimen was. All I really remember about CMV is that alot of people can be CMV+ and it's not any big deal, it still isn't too big a deal with transplant not enough to render the organs unusable, and it's not an issue when both the recipient and donor are CMV +. The "problem" can arise because of the suppressed immune system and you get CMV. Other than getting treated for it, I never asked any further questions, like if it keeps coming back.

I hope they get on top of it and are able to keep you from getting it again. I know sitting around getting an IV that takes 6 hrs is a pain in the neck. How long ago was your transplant?

Liza · Nov 12, 2008

Hi Karla,
My daughter, Anna, was CMV negative and her donor was CMV positive. Right after transplant they gave her some meds by IV for this, then a scheduled IV of ??? can't recall the name for a total of 6 doses spaced apart. She was done with the IV meds. by the end of Nov. (transplant was on July 25). The IV run time was usually about 2hrs but it ran for 3 one time. She was on oral during this time as well, Mmmm, Valcyte, for the first year. All this time they checked her blood work for CMV. At the end of her first year they changed her from Valcyte to Vancyclovir. She was lucky, that she never(knock on wood here) got CMV. We know a guy that got his double lung in March '07, same thing as Anna, he was -, donor was +, same treatment, same transplant center even, he did have a bout with CMV, once or twice. I think he's not gotten it again after his first year. I could ask him if you like.

I'm sorry I can't offer up any real help, but I thought you might like to know what my daughter's regimen was. All I really remember about CMV is that alot of people can be CMV+ and it's not any big deal, it still isn't too big a deal with transplant not enough to render the organs unusable, and it's not an issue when both the recipient and donor are CMV +. The "problem" can arise because of the suppressed immune system and you get CMV. Other than getting treated for it, I never asked any further questions, like if it keeps coming back.

I hope they get on top of it and are able to keep you from getting it again. I know sitting around getting an IV that takes 6 hrs is a pain in the neck. How long ago was your transplant?

Liza · Nov 12, 2008

Hi Karla,
My daughter, Anna, was CMV negative and her donor was CMV positive. Right after transplant they gave her some meds by IV for this, then a scheduled IV of ??? can't recall the name for a total of 6 doses spaced apart. She was done with the IV meds. by the end of Nov. (transplant was on July 25). The IV run time was usually about 2hrs but it ran for 3 one time. She was on oral during this time as well, Mmmm, Valcyte, for the first year. All this time they checked her blood work for CMV. At the end of her first year they changed her from Valcyte to Vancyclovir. She was lucky, that she never(knock on wood here) got CMV. We know a guy that got his double lung in March '07, same thing as Anna, he was -, donor was +, same treatment, same transplant center even, he did have a bout with CMV, once or twice. I think he's not gotten it again after his first year. I could ask him if you like.

I'm sorry I can't offer up any real help, but I thought you might like to know what my daughter's regimen was. All I really remember about CMV is that alot of people can be CMV+ and it's not any big deal, it still isn't too big a deal with transplant not enough to render the organs unusable, and it's not an issue when both the recipient and donor are CMV +. The "problem" can arise because of the suppressed immune system and you get CMV. Other than getting treated for it, I never asked any further questions, like if it keeps coming back.

I hope they get on top of it and are able to keep you from getting it again. I know sitting around getting an IV that takes 6 hrs is a pain in the neck. How long ago was your transplant?

Liza · Nov 12, 2008

Hi Karla,
My daughter, Anna, was CMV negative and her donor was CMV positive. Right after transplant they gave her some meds by IV for this, then a scheduled IV of ??? can't recall the name for a total of 6 doses spaced apart. She was done with the IV meds. by the end of Nov. (transplant was on July 25). The IV run time was usually about 2hrs but it ran for 3 one time. She was on oral during this time as well, Mmmm, Valcyte, for the first year. All this time they checked her blood work for CMV. At the end of her first year they changed her from Valcyte to Vancyclovir. She was lucky, that she never(knock on wood here) got CMV. We know a guy that got his double lung in March '07, same thing as Anna, he was -, donor was +, same treatment, same transplant center even, he did have a bout with CMV, once or twice. I think he's not gotten it again after his first year. I could ask him if you like.

I'm sorry I can't offer up any real help, but I thought you might like to know what my daughter's regimen was. All I really remember about CMV is that alot of people can be CMV+ and it's not any big deal, it still isn't too big a deal with transplant not enough to render the organs unusable, and it's not an issue when both the recipient and donor are CMV +. The "problem" can arise because of the suppressed immune system and you get CMV. Other than getting treated for it, I never asked any further questions, like if it keeps coming back.

I hope they get on top of it and are able to keep you from getting it again. I know sitting around getting an IV that takes 6 hrs is a pain in the neck. How long ago was your transplant?

Liza · Nov 12, 2008

Hi Karla,
 My daughter, Anna, was CMV negative and her donor was CMV positive. Right after transplant they gave her some meds by IV for this, then a scheduled IV of ??? can't recall the name for a total of 6 doses spaced apart. She was done with the IV meds. by the end of Nov. (transplant was on July 25). The IV run time was usually about 2hrs but it ran for 3 one time. She was on oral during this time as well, Mmmm, Valcyte, for the first year. All this time they checked her blood work for CMV. At the end of her first year they changed her from Valcyte to Vancyclovir. She was lucky, that she never(knock on wood here) got CMV. We know a guy that got his double lung in March '07, same thing as Anna, he was -, donor was +, same treatment, same transplant center even, he did have a bout with CMV, once or twice. I think he's not gotten it again after his first year. I could ask him if you like.
 
 I'm sorry I can't offer up any real help, but I thought you might like to know what my daughter's regimen was. All I really remember about CMV is that alot of people can be CMV+ and it's not any big deal, it still isn't too big a deal with transplant not enough to render the organs unusable, and it's not an issue when both the recipient and donor are CMV +. The "problem" can arise because of the suppressed immune system and you get CMV. Other than getting treated for it, I never asked any further questions, like if it keeps coming back.
 
 I hope they get on top of it and are able to keep you from getting it again. I know sitting around getting an IV that takes 6 hrs is a pain in the neck. How long ago was your transplant?

cutiepatootie · Nov 12, 2008

Hey Liza thanks for writing, I had my Tx last year on May 10, 2007. I was also CMV- before Tx and I got a CMV+ set of lungs. Any ways I was on IV for CMV for 3 weeks after Tx and then put on Valcyte for 6 months after I went of the Valcyte I got CMV like 5 weeks later and then I went back on Valcyte. Its been like this on and off for the last year, so this last time I got CMV, the Drs. desided to do the IV thing and Valcyte, because they were suprised that it did go away on its own. Its good to hear that your daughter didn't get CMV after her Tx. If you don't mind asking that guy if he did get CMV again that would be great, thanks.

cutiepatootie · Nov 12, 2008

Hey Liza thanks for writing, I had my Tx last year on May 10, 2007. I was also CMV- before Tx and I got a CMV+ set of lungs. Any ways I was on IV for CMV for 3 weeks after Tx and then put on Valcyte for 6 months after I went of the Valcyte I got CMV like 5 weeks later and then I went back on Valcyte. Its been like this on and off for the last year, so this last time I got CMV, the Drs. desided to do the IV thing and Valcyte, because they were suprised that it did go away on its own. Its good to hear that your daughter didn't get CMV after her Tx. If you don't mind asking that guy if he did get CMV again that would be great, thanks.

cutiepatootie · Nov 12, 2008

Hey Liza thanks for writing, I had my Tx last year on May 10, 2007. I was also CMV- before Tx and I got a CMV+ set of lungs. Any ways I was on IV for CMV for 3 weeks after Tx and then put on Valcyte for 6 months after I went of the Valcyte I got CMV like 5 weeks later and then I went back on Valcyte. Its been like this on and off for the last year, so this last time I got CMV, the Drs. desided to do the IV thing and Valcyte, because they were suprised that it did go away on its own. Its good to hear that your daughter didn't get CMV after her Tx. If you don't mind asking that guy if he did get CMV again that would be great, thanks.

cutiepatootie · Nov 12, 2008

Hey Liza thanks for writing, I had my Tx last year on May 10, 2007. I was also CMV- before Tx and I got a CMV+ set of lungs. Any ways I was on IV for CMV for 3 weeks after Tx and then put on Valcyte for 6 months after I went of the Valcyte I got CMV like 5 weeks later and then I went back on Valcyte. Its been like this on and off for the last year, so this last time I got CMV, the Drs. desided to do the IV thing and Valcyte, because they were suprised that it did go away on its own. Its good to hear that your daughter didn't get CMV after her Tx. If you don't mind asking that guy if he did get CMV again that would be great, thanks.

cutiepatootie · Nov 12, 2008

Hey Liza thanks for writing, I had my Tx last year on May 10, 2007. I was also CMV- before Tx and I got a CMV+ set of lungs. Any ways I was on IV for CMV for 3 weeks after Tx and then put on Valcyte for 6 months after I went of the Valcyte I got CMV like 5 weeks later and then I went back on Valcyte. Its been like this on and off for the last year, so this last time I got CMV, the Drs. desided to do the IV thing and Valcyte, because they were suprised that it did go away on its own. Its good to hear that your daughter didn't get CMV after her Tx. If you don't mind asking that guy if he did get CMV again that would be great, thanks.

Liza · Nov 12, 2008