big drop in pft, trouble coping

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angelrn00

New member
I just joined the group tonight.. it has been a rough month. My husband has had a baseline pft of 37-40 for the past 10ish years. In the beginning of Dec, he got sick and his pft is down to 28! this is after 2 wks oral antibx, 1wk outpt iv antibx, and 2 wks of coliston inpt. we are both having a hard time with this. It feels as if it is becoming all consuming. I feel like there is no one to talk to, because no one really understands. I try to stay upbeat around him because he has been so down...but it is getting hard. he was d/c'd on tues and started prednisone for the first time wed. I guess I was hoping it would be the miracle drug...not so much. I am an oncology nurse and am very familiar with prednisone. so i know it can have some really crappy side effects, but it can also have some great benefits. I don't know. I guess I am hoping to connect with some other young spouses (yes, I call myself young!!!lol) for support and encouragement!
thanks for listening! so glad i found this site!
 
A

angelrn00

New member
I just joined the group tonight.. it has been a rough month. My husband has had a baseline pft of 37-40 for the past 10ish years. In the beginning of Dec, he got sick and his pft is down to 28! this is after 2 wks oral antibx, 1wk outpt iv antibx, and 2 wks of coliston inpt. we are both having a hard time with this. It feels as if it is becoming all consuming. I feel like there is no one to talk to, because no one really understands. I try to stay upbeat around him because he has been so down...but it is getting hard. he was d/c'd on tues and started prednisone for the first time wed. I guess I was hoping it would be the miracle drug...not so much. I am an oncology nurse and am very familiar with prednisone. so i know it can have some really crappy side effects, but it can also have some great benefits. I don't know. I guess I am hoping to connect with some other young spouses (yes, I call myself young!!!lol) for support and encouragement!
thanks for listening! so glad i found this site!
 
A

angelrn00

New member
I just joined the group tonight.. it has been a rough month. My husband has had a baseline pft of 37-40 for the past 10ish years. In the beginning of Dec, he got sick and his pft is down to 28! this is after 2 wks oral antibx, 1wk outpt iv antibx, and 2 wks of coliston inpt. we are both having a hard time with this. It feels as if it is becoming all consuming. I feel like there is no one to talk to, because no one really understands. I try to stay upbeat around him because he has been so down...but it is getting hard. he was d/c'd on tues and started prednisone for the first time wed. I guess I was hoping it would be the miracle drug...not so much. I am an oncology nurse and am very familiar with prednisone. so i know it can have some really crappy side effects, but it can also have some great benefits. I don't know. I guess I am hoping to connect with some other young spouses (yes, I call myself young!!!lol) for support and encouragement!
<br />thanks for listening! so glad i found this site!
 
A

auntcob

New member
Hi--I am by no means a young spouse, but a middle-aged mother. Welcome to the site! I am confident you will find the support you need here. I have. I've met a couple women here who have similar situations to mine and we PM regularly. I know there are other young spouses from reading other's posts. One thing for sure--you are in a unique position that most do not understand---you will find that here.

Best to you and your husband,

Chris

\
 
A

auntcob

New member
Hi--I am by no means a young spouse, but a middle-aged mother. Welcome to the site! I am confident you will find the support you need here. I have. I've met a couple women here who have similar situations to mine and we PM regularly. I know there are other young spouses from reading other's posts. One thing for sure--you are in a unique position that most do not understand---you will find that here.

Best to you and your husband,

Chris

\
 
A

auntcob

New member
Hi--I am by no means a young spouse, but a middle-aged mother. Welcome to the site! I am confident you will find the support you need here. I have. I've met a couple women here who have similar situations to mine and we PM regularly. I know there are other young spouses from reading other's posts. One thing for sure--you are in a unique position that most do not understand---you will find that here.
<br />
<br />Best to you and your husband,
<br />
<br />Chris
<br />
<br />\
 
S

serendipity730

New member
Hi,

Sorry to hear about your husband's recent downturn. A drop in pft's isn't always permanent by any means. My pft's had dropped by about 15% pts over the last yr or soand recently bounced back 10% pts.

Anyway, if you are looking to chat with another CF spouse, my husband would be happy to speak (he is almost 29; we've been married 4 1/2 yrs). His name is Erik. You can email him at erikhudzik@yahoo.com.
 
S

serendipity730

New member
Hi,

Sorry to hear about your husband's recent downturn. A drop in pft's isn't always permanent by any means. My pft's had dropped by about 15% pts over the last yr or soand recently bounced back 10% pts.

Anyway, if you are looking to chat with another CF spouse, my husband would be happy to speak (he is almost 29; we've been married 4 1/2 yrs). His name is Erik. You can email him at erikhudzik@yahoo.com.
 
S

serendipity730

New member
Hi,
<br />
<br />Sorry to hear about your husband's recent downturn. A drop in pft's isn't always permanent by any means. My pft's had dropped by about 15% pts over the last yr or soand recently bounced back 10% pts.
<br />
<br />Anyway, if you are looking to chat with another CF spouse, my husband would be happy to speak (he is almost 29; we've been married 4 1/2 yrs). His name is Erik. You can email him at erikhudzik@yahoo.com.
 
L

LouLou

New member
Welcome! I think you'll find some good support here. Update your signature so people know more about you and post often. Opinions are appreciated! As is a listening ear :) We are the experts so have confidence and post often. Is your husband beginning to discuss/eval for transplant? Many suggest doing the evaulation in the high 30s when the person can still handle it. Then get listed when ready. I hope to see you around.
 
L

LouLou

New member
Welcome! I think you'll find some good support here. Update your signature so people know more about you and post often. Opinions are appreciated! As is a listening ear :) We are the experts so have confidence and post often. Is your husband beginning to discuss/eval for transplant? Many suggest doing the evaulation in the high 30s when the person can still handle it. Then get listed when ready. I hope to see you around.
 
L

LouLou

New member
Welcome! I think you'll find some good support here. Update your signature so people know more about you and post often. Opinions are appreciated! As is a listening ear :) We are the experts so have confidence and post often. Is your husband beginning to discuss/eval for transplant? Many suggest doing the evaulation in the high 30s when the person can still handle it. Then get listed when ready. I hope to see you around.
 
A

angelrn00

New member
Hello! Yea, we are accustomed to drops, he has dropped to the high 20s/low 30s before and then rebounded after some good clean out. but that is what worries me. he has had 3 weeks of iv stuff, and 2 wks oral and he actually dropped a percent! He is also c/o of feeling sob all the time, which i am sure he does since it is such a big drop. I don't know. he started prednisone wed, keeping fingers crossed that that will help. I also (trying not to nag....) but encourage him to do some cardio..But i think he is just so frustrated with everything right now that he doesn't want to/doesn't feel like he can. I try to stay positive and have said, you know, just get on with a goal of 2 minutes. every little bit could help. i am trying not to say too much, because i know sometimes you just need to be left alone and be grumpy for awhile, but at this low, i am afraid not doing anything for too long will only hurt. not giving up!! repeat pft in a wk and a half...hoping for any improvement. any suggestions on exercise?? or anything else we can do at home? he does saline nasal rinses. and hhns 3-4x a day. thank you so much for responding!!
 
A

angelrn00

New member
Hello! Yea, we are accustomed to drops, he has dropped to the high 20s/low 30s before and then rebounded after some good clean out. but that is what worries me. he has had 3 weeks of iv stuff, and 2 wks oral and he actually dropped a percent! He is also c/o of feeling sob all the time, which i am sure he does since it is such a big drop. I don't know. he started prednisone wed, keeping fingers crossed that that will help. I also (trying not to nag....) but encourage him to do some cardio..But i think he is just so frustrated with everything right now that he doesn't want to/doesn't feel like he can. I try to stay positive and have said, you know, just get on with a goal of 2 minutes. every little bit could help. i am trying not to say too much, because i know sometimes you just need to be left alone and be grumpy for awhile, but at this low, i am afraid not doing anything for too long will only hurt. not giving up!! repeat pft in a wk and a half...hoping for any improvement. any suggestions on exercise?? or anything else we can do at home? he does saline nasal rinses. and hhns 3-4x a day. thank you so much for responding!!
 
A

angelrn00

New member
Hello! Yea, we are accustomed to drops, he has dropped to the high 20s/low 30s before and then rebounded after some good clean out. but that is what worries me. he has had 3 weeks of iv stuff, and 2 wks oral and he actually dropped a percent! He is also c/o of feeling sob all the time, which i am sure he does since it is such a big drop. I don't know. he started prednisone wed, keeping fingers crossed that that will help. I also (trying not to nag....) but encourage him to do some cardio..But i think he is just so frustrated with everything right now that he doesn't want to/doesn't feel like he can. I try to stay positive and have said, you know, just get on with a goal of 2 minutes. every little bit could help. i am trying not to say too much, because i know sometimes you just need to be left alone and be grumpy for awhile, but at this low, i am afraid not doing anything for too long will only hurt. not giving up!! repeat pft in a wk and a half...hoping for any improvement. any suggestions on exercise?? or anything else we can do at home? he does saline nasal rinses. and hhns 3-4x a day. thank you so much for responding!!
 
A

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!!
 
A

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!!
 
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