mackenziesmom
New member
We were just told my son grew some fungus in his last culture but that it was nothing to worry about. We heard this from the CF clinic not his transplant Dr. Should we be concerned?
j
j
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fungus and transplants
- Thread starter mackenziesmom
- Start date
mackenziesmom
New member
We were just told my son grew some fungus in his last culture but that it was nothing to worry about. We heard this from the CF clinic not his transplant Dr. Should we be concerned?
j
j
mackenziesmom
New member
We were just told my son grew some fungus in his last culture but that it was nothing to worry about. We heard this from the CF clinic not his transplant Dr. Should we be concerned?
j
j
mackenziesmom
New member
We were just told my son grew some fungus in his last culture but that it was nothing to worry about. We heard this from the CF clinic not his transplant Dr. Should we be concerned?
j
j
mackenziesmom
New member
We were just told my son grew some fungus in his last culture but that it was nothing to worry about. We heard this from the CF clinic not his transplant Dr. Should we be concerned?
<br />j
<br />j
It may just be me and my need for reassurance from Anna's transplant team but I would say "yes". Until the tx team tells us what to do and how it will effect Anna, I worry.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
It may just be me and my need for reassurance from Anna's transplant team but I would say "yes". Until the tx team tells us what to do and how it will effect Anna, I worry.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
It may just be me and my need for reassurance from Anna's transplant team but I would say "yes". Until the tx team tells us what to do and how it will effect Anna, I worry.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
It may just be me and my need for reassurance from Anna's transplant team but I would say "yes". Until the tx team tells us what to do and how it will effect Anna, I worry.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
It may just be me and my need for reassurance from Anna's transplant team but I would say "yes". Until the tx team tells us what to do and how it will effect Anna, I worry.
<br />
<br />What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
<br />
<br />I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
<br />
<br />Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
<br />
<br />What fungus? Did they at least tell you that? Aspergillus? Sorry to say this on a friday, but yes, be concerned. Where it may not be of great concern pre-tx for a CF'er, it can be post-tx. It can be treated, so you can take a breath now. It can be difficult to get rid of post-tx, I think it just depends on the patient. Anna cultured aspergillus just weeks after returning to school in NE in the dead of winter! She was given V-Fend and a course of inhaled Amphotericin B. It cleard up in a reasonable amount of time, it didn't take a really long time.
<br />
<br />I guess it depends on your tx clinic but Anna's is very hands on. She doesn't take anything new from any doctor without it being cleared through her tx docs first. When she goes to her CF clinic, everything is sent over to her tx team after her appt. Ok, maybe not everything, they don't send a copy of her x-rays if she gets them, just the report.
<br />
<br />Even if the CF team says to not be concerned I would call and ask the tx team or at least ask them if they talked to the tx team.
mackenziesmom
New member
Liza,
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
mackenziesmom
New member
Liza,
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
mackenziesmom
New member
Liza,
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
mackenziesmom
New member
Liza,
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
I've read your posts in the past. I hope Anna is doing well.
joan
mackenziesmom
New member
Liza,
<br /> Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
<br />I've read your posts in the past. I hope Anna is doing well.
<br />joan
<br /> Thanks for the info. It was very helpful. I know the CF dr. sent the report to th tx dr.
<br />I've read your posts in the past. I hope Anna is doing well.
<br />joan
Hi Joan, I didn't want to alarm you too much, if that's possible. But I did want you to be on top of things and ask, ask, ask when it comes to just about anything and everything post tx. We had one issue pertaining to Anna's course for her aspergillus where she/we thought she was doen with her amphoteracin B, now I/we ask, which doctor gave the instructions and if it's a resident we are not familiar with we ask for it be passed by one of the docs a little higher up on the chain because he'd had her stop it too soon and the doc was not pleased. But hey, this is our kids lives we're talking about here. I guess they drove it into us very well though, be aware of any changes and call in with any questions or concerns, and we do.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Hi Joan, I didn't want to alarm you too much, if that's possible. But I did want you to be on top of things and ask, ask, ask when it comes to just about anything and everything post tx. We had one issue pertaining to Anna's course for her aspergillus where she/we thought she was doen with her amphoteracin B, now I/we ask, which doctor gave the instructions and if it's a resident we are not familiar with we ask for it be passed by one of the docs a little higher up on the chain because he'd had her stop it too soon and the doc was not pleased. But hey, this is our kids lives we're talking about here. I guess they drove it into us very well though, be aware of any changes and call in with any questions or concerns, and we do.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Hi Joan, I didn't want to alarm you too much, if that's possible. But I did want you to be on top of things and ask, ask, ask when it comes to just about anything and everything post tx. We had one issue pertaining to Anna's course for her aspergillus where she/we thought she was doen with her amphoteracin B, now I/we ask, which doctor gave the instructions and if it's a resident we are not familiar with we ask for it be passed by one of the docs a little higher up on the chain because he'd had her stop it too soon and the doc was not pleased. But hey, this is our kids lives we're talking about here. I guess they drove it into us very well though, be aware of any changes and call in with any questions or concerns, and we do.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Hi Joan, I didn't want to alarm you too much, if that's possible. But I did want you to be on top of things and ask, ask, ask when it comes to just about anything and everything post tx. We had one issue pertaining to Anna's course for her aspergillus where she/we thought she was doen with her amphoteracin B, now I/we ask, which doctor gave the instructions and if it's a resident we are not familiar with we ask for it be passed by one of the docs a little higher up on the chain because he'd had her stop it too soon and the doc was not pleased. But hey, this is our kids lives we're talking about here. I guess they drove it into us very well though, be aware of any changes and call in with any questions or concerns, and we do.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
I hope that your sons fungus really isn't anything to be concerned about.
Hi Joan, I didn't want to alarm you too much, if that's possible. But I did want you to be on top of things and ask, ask, ask when it comes to just about anything and everything post tx. We had one issue pertaining to Anna's course for her aspergillus where she/we thought she was doen with her amphoteracin B, now I/we ask, which doctor gave the instructions and if it's a resident we are not familiar with we ask for it be passed by one of the docs a little higher up on the chain because he'd had her stop it too soon and the doc was not pleased. But hey, this is our kids lives we're talking about here. I guess they drove it into us very well though, be aware of any changes and call in with any questions or concerns, and we do.
<br />
<br />Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
<br />
<br />I hope that your sons fungus really isn't anything to be concerned about.
<br />
<br />Anna is stable for the moment and seems to be doing pretty good. Thanks for asking! She's enrolled in classes and just got back from a trip to Denver to see how the elevation was on her. She's looking into centers that do second tx's. Turns out Denver won't do them on anyone other than their own original patients. But Denver treated her well which was amazing considering her pfts are hovering between 27-32. No O2 needed.
<br />
<br />I hope that your sons fungus really isn't anything to be concerned about.