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big drop in pft, trouble coping

angelrn00

New member
Hi Lauren! How do i update my signiture? is that in the profile? Also, yes, they have been talking about transplant more and more in the past year. Originally the mds told us that they typically start thinking transplant with a pft under 30. and with this last hospitalization they were talking about it alot more. They say of course, not to do it until you cannot get anymore out of your own lungs...but i don't know. it's a scary line to walk!! I think when he goes back to the md in a wk and a half, he is going to talk to them about starting the workup. they told him he can do the workup, but not do transplant until he's ready... just be a little ahead of the game. He has just been at 37-40 for so long, and been functioning so well, that i guess they have felt like he will be able to hold out a little longer, and if his drop had been more gradual, i agree. but when you are already that low a 10% drop is huge. also, i was wondering what all of these number things mean... like your g551d and df508? I am not familiar with these? pft is the only numbers we really talk about. is this like the genetic mutation or something? does knowing these numbers help in deciding treatment options? thanks for all the help!!
 

Lisapatg

New member
I was wondering the same thing about the mutations. I'm not sure what my husband's mutations are or what they even mean. I'm 36 my husband is 42 with cf. Feel free to pm me anytime you would like to talk. Lisa
 

Lisapatg

New member
I was wondering the same thing about the mutations. I'm not sure what my husband's mutations are or what they even mean. I'm 36 my husband is 42 with cf. Feel free to pm me anytime you would like to talk. Lisa
 

Lisapatg

New member
I was wondering the same thing about the mutations. I'm not sure what my husband's mutations are or what they even mean. I'm 36 my husband is 42 with cf. Feel free to pm me anytime you would like to talk. Lisa
 

LouLou

New member
Hi Angel and Lisa, In the not so distant future genetic mutation will effect treatment. It already does for me since I am in a clinical trial due to my G551D mutation. The drugs to follow that are in the CFF pipeline that are for specific mutations are VX770, VX890, and Ataluren.

What mutations do your spouses have?
 

LouLou

New member
Hi Angel and Lisa, In the not so distant future genetic mutation will effect treatment. It already does for me since I am in a clinical trial due to my G551D mutation. The drugs to follow that are in the CFF pipeline that are for specific mutations are VX770, VX890, and Ataluren.

What mutations do your spouses have?
 

LouLou

New member
Hi Angel and Lisa, In the not so distant future genetic mutation will effect treatment. It already does for me since I am in a clinical trial due to my G551D mutation. The drugs to follow that are in the CFF pipeline that are for specific mutations are VX770, VX890, and Ataluren.
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<br />What mutations do your spouses have?
 

angelrn00

New member
is that info that every dr should have on file? my husband has no clue!! lol. we have an appt in less than 2 wks, so maybe i could find out..and i love the loulou!! that is my daughters nickname since she was little!
 

angelrn00

New member
is that info that every dr should have on file? my husband has no clue!! lol. we have an appt in less than 2 wks, so maybe i could find out..and i love the loulou!! that is my daughters nickname since she was little!
 

angelrn00

New member
is that info that every dr should have on file? my husband has no clue!! lol. we have an appt in less than 2 wks, so maybe i could find out..and i love the loulou!! that is my daughters nickname since she was little!
 

angelrn00

New member
how long have you been in this clinical trial, Lauren? Does it seem to be helping you? is it oral, inhaled or iv or combo?....always eager to find a new treatment!!!
 

angelrn00

New member
how long have you been in this clinical trial, Lauren? Does it seem to be helping you? is it oral, inhaled or iv or combo?....always eager to find a new treatment!!!
 

angelrn00

New member
how long have you been in this clinical trial, Lauren? Does it seem to be helping you? is it oral, inhaled or iv or combo?....always eager to find a new treatment!!!
 

angelrn00

New member
hi chris! nice to meet you!! i am sooo thankful for finding this site!!! and you are right..lots of support! think i will be a member for life!!!
 

angelrn00

New member
hi chris! nice to meet you!! i am sooo thankful for finding this site!!! and you are right..lots of support! think i will be a member for life!!!
 

angelrn00

New member
hi chris! nice to meet you!! i am sooo thankful for finding this site!!! and you are right..lots of support! think i will be a member for life!!!
 
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