Need some help with dealing with all this...

[ReneeP]

I want to preface by saying that I am usually a very "together" type of person who rarely breaks down, at least in front of anyone... I realize that's not always healthy, but I have a very hard time with emotions so I try really hard to keep them inside. But I am having a bit of a break down here and I really need some help...

I have 2 daughters with CF (both DDF508). We have been extremely lucky in that they have always been very healthy. We are definatly agressive in prevention and always doing treatments, but other than that CF has always kind of been in the back ground... It hasn't really effected them very much up until recently.

My oldest daughter turned 13 last Friday. Up until last December her FEV1 had always been way over 100%... I think the lowest it had ever been was 123%. Her baseline was in the 125% range. She got a virus last December totally out of the blue that floored her. Her FEV1 dropped to the low 70's and she had all sorts of problems (steriod induced diabetes included). She was in the hospital for 2 weeks and it took her over a month to recover. At her very best she got back up to 103%. So there was defintately some permanent loss.

She has had several other issues this year that have caused problems. It has been by far her worst year ever. A couple of weeks ago she got sick again (another virus). She was admitted again for 8 days and then home on IV's for another week. Her last day on IV anti's was last Friday. I took her back to clinic today for a follow and to have her PICC removed. I was floored to see that her FEV1 was 81% at her absolute best. I was there watching her and she was working her a** off trying to get it higher and couldn't do it. I didn't react in front of her but inside I was flipping out. We had a 6 hour drive home from clinic which went fine... but as soon as I walked in the door and into my bedroom I lost it...

Now, I realize that 81% isn't tragic... I'm sure there are people who would love to have an FEV1 of 81%... but in less than one year she went from 125% to 81%. That's quite a large drop in a very short time (at least it seems like it to me). If this rate of decline continues things sure aren't looking very good for her.... I'm totally and completely freaking out.

I don't know exactly what I am looking for here... reassurance that the decline will stop... reassurance that she can re-gain some of that... I don't really know. I just don't know where else to turn. I feel like falling apart... It's Christmas, I have 2 children with B-days this month, I have missed 2 weeks of work this month which sucks for the checkbook, and I just don't know how to handle all of this... Maybe I am just feeling sorry for myself and need to stop... I don't know... Not sure what to do...

 

[ReneeP]

I want to preface by saying that I am usually a very "together" type of person who rarely breaks down, at least in front of anyone... I realize that's not always healthy, but I have a very hard time with emotions so I try really hard to keep them inside. But I am having a bit of a break down here and I really need some help...

I have 2 daughters with CF (both DDF508). We have been extremely lucky in that they have always been very healthy. We are definatly agressive in prevention and always doing treatments, but other than that CF has always kind of been in the back ground... It hasn't really effected them very much up until recently.

My oldest daughter turned 13 last Friday. Up until last December her FEV1 had always been way over 100%... I think the lowest it had ever been was 123%. Her baseline was in the 125% range. She got a virus last December totally out of the blue that floored her. Her FEV1 dropped to the low 70's and she had all sorts of problems (steriod induced diabetes included). She was in the hospital for 2 weeks and it took her over a month to recover. At her very best she got back up to 103%. So there was defintately some permanent loss.

She has had several other issues this year that have caused problems. It has been by far her worst year ever. A couple of weeks ago she got sick again (another virus). She was admitted again for 8 days and then home on IV's for another week. Her last day on IV anti's was last Friday. I took her back to clinic today for a follow and to have her PICC removed. I was floored to see that her FEV1 was 81% at her absolute best. I was there watching her and she was working her a** off trying to get it higher and couldn't do it. I didn't react in front of her but inside I was flipping out. We had a 6 hour drive home from clinic which went fine... but as soon as I walked in the door and into my bedroom I lost it...

Now, I realize that 81% isn't tragic... I'm sure there are people who would love to have an FEV1 of 81%... but in less than one year she went from 125% to 81%. That's quite a large drop in a very short time (at least it seems like it to me). If this rate of decline continues things sure aren't looking very good for her.... I'm totally and completely freaking out.

I don't know exactly what I am looking for here... reassurance that the decline will stop... reassurance that she can re-gain some of that... I don't really know. I just don't know where else to turn. I feel like falling apart... It's Christmas, I have 2 children with B-days this month, I have missed 2 weeks of work this month which sucks for the checkbook, and I just don't know how to handle all of this... Maybe I am just feeling sorry for myself and need to stop... I don't know... Not sure what to do...

 

[ReneeP]

I want to preface by saying that I am usually a very "together" type of person who rarely breaks down, at least in front of anyone... I realize that's not always healthy, but I have a very hard time with emotions so I try really hard to keep them inside. But I am having a bit of a break down here and I really need some help...

I have 2 daughters with CF (both DDF508). We have been extremely lucky in that they have always been very healthy. We are definatly agressive in prevention and always doing treatments, but other than that CF has always kind of been in the back ground... It hasn't really effected them very much up until recently.

My oldest daughter turned 13 last Friday. Up until last December her FEV1 had always been way over 100%... I think the lowest it had ever been was 123%. Her baseline was in the 125% range. She got a virus last December totally out of the blue that floored her. Her FEV1 dropped to the low 70's and she had all sorts of problems (steriod induced diabetes included). She was in the hospital for 2 weeks and it took her over a month to recover. At her very best she got back up to 103%. So there was defintately some permanent loss.

She has had several other issues this year that have caused problems. It has been by far her worst year ever. A couple of weeks ago she got sick again (another virus). She was admitted again for 8 days and then home on IV's for another week. Her last day on IV anti's was last Friday. I took her back to clinic today for a follow and to have her PICC removed. I was floored to see that her FEV1 was 81% at her absolute best. I was there watching her and she was working her a** off trying to get it higher and couldn't do it. I didn't react in front of her but inside I was flipping out. We had a 6 hour drive home from clinic which went fine... but as soon as I walked in the door and into my bedroom I lost it...

Now, I realize that 81% isn't tragic... I'm sure there are people who would love to have an FEV1 of 81%... but in less than one year she went from 125% to 81%. That's quite a large drop in a very short time (at least it seems like it to me). If this rate of decline continues things sure aren't looking very good for her.... I'm totally and completely freaking out.

I don't know exactly what I am looking for here... reassurance that the decline will stop... reassurance that she can re-gain some of that... I don't really know. I just don't know where else to turn. I feel like falling apart... It's Christmas, I have 2 children with B-days this month, I have missed 2 weeks of work this month which sucks for the checkbook, and I just don't know how to handle all of this... Maybe I am just feeling sorry for myself and need to stop... I don't know... Not sure what to do...

 

[ReneeP]

I want to preface by saying that I am usually a very "together" type of person who rarely breaks down, at least in front of anyone... I realize that's not always healthy, but I have a very hard time with emotions so I try really hard to keep them inside. But I am having a bit of a break down here and I really need some help...

I have 2 daughters with CF (both DDF508). We have been extremely lucky in that they have always been very healthy. We are definatly agressive in prevention and always doing treatments, but other than that CF has always kind of been in the back ground... It hasn't really effected them very much up until recently.

My oldest daughter turned 13 last Friday. Up until last December her FEV1 had always been way over 100%... I think the lowest it had ever been was 123%. Her baseline was in the 125% range. She got a virus last December totally out of the blue that floored her. Her FEV1 dropped to the low 70's and she had all sorts of problems (steriod induced diabetes included). She was in the hospital for 2 weeks and it took her over a month to recover. At her very best she got back up to 103%. So there was defintately some permanent loss.

She has had several other issues this year that have caused problems. It has been by far her worst year ever. A couple of weeks ago she got sick again (another virus). She was admitted again for 8 days and then home on IV's for another week. Her last day on IV anti's was last Friday. I took her back to clinic today for a follow and to have her PICC removed. I was floored to see that her FEV1 was 81% at her absolute best. I was there watching her and she was working her a** off trying to get it higher and couldn't do it. I didn't react in front of her but inside I was flipping out. We had a 6 hour drive home from clinic which went fine... but as soon as I walked in the door and into my bedroom I lost it...

Now, I realize that 81% isn't tragic... I'm sure there are people who would love to have an FEV1 of 81%... but in less than one year she went from 125% to 81%. That's quite a large drop in a very short time (at least it seems like it to me). If this rate of decline continues things sure aren't looking very good for her.... I'm totally and completely freaking out.

I don't know exactly what I am looking for here... reassurance that the decline will stop... reassurance that she can re-gain some of that... I don't really know. I just don't know where else to turn. I feel like falling apart... It's Christmas, I have 2 children with B-days this month, I have missed 2 weeks of work this month which sucks for the checkbook, and I just don't know how to handle all of this... Maybe I am just feeling sorry for myself and need to stop... I don't know... Not sure what to do...

 

[ReneeP]

I want to preface by saying that I am usually a very "together" type of person who rarely breaks down, at least in front of anyone... I realize that's not always healthy, but I have a very hard time with emotions so I try really hard to keep them inside. But I am having a bit of a break down here and I really need some help...

I have 2 daughters with CF (both DDF508). We have been extremely lucky in that they have always been very healthy. We are definatly agressive in prevention and always doing treatments, but other than that CF has always kind of been in the back ground... It hasn't really effected them very much up until recently.

My oldest daughter turned 13 last Friday. Up until last December her FEV1 had always been way over 100%... I think the lowest it had ever been was 123%. Her baseline was in the 125% range. She got a virus last December totally out of the blue that floored her. Her FEV1 dropped to the low 70's and she had all sorts of problems (steriod induced diabetes included). She was in the hospital for 2 weeks and it took her over a month to recover. At her very best she got back up to 103%. So there was defintately some permanent loss.

She has had several other issues this year that have caused problems. It has been by far her worst year ever. A couple of weeks ago she got sick again (another virus). She was admitted again for 8 days and then home on IV's for another week. Her last day on IV anti's was last Friday. I took her back to clinic today for a follow and to have her PICC removed. I was floored to see that her FEV1 was 81% at her absolute best. I was there watching her and she was working her a** off trying to get it higher and couldn't do it. I didn't react in front of her but inside I was flipping out. We had a 6 hour drive home from clinic which went fine... but as soon as I walked in the door and into my bedroom I lost it...

Now, I realize that 81% isn't tragic... I'm sure there are people who would love to have an FEV1 of 81%... but in less than one year she went from 125% to 81%. That's quite a large drop in a very short time (at least it seems like it to me). If this rate of decline continues things sure aren't looking very good for her.... I'm totally and completely freaking out.

I don't know exactly what I am looking for here... reassurance that the decline will stop... reassurance that she can re-gain some of that... I don't really know. I just don't know where else to turn. I feel like falling apart... It's Christmas, I have 2 children with B-days this month, I have missed 2 weeks of work this month which sucks for the checkbook, and I just don't know how to handle all of this... Maybe I am just feeling sorry for myself and need to stop... I don't know... Not sure what to do...

 

[Diane]

Renee,
Im sorry you are going thru this....
The lower fev1 might be temporary till she is completely over whatever virus is affecting her. I have also heard of people with cf reaching a plateau in their pft's and stay there for years. This may happen also. I know everyone tells us not too get too hung up on #'s and its hard not to, but it does depend on how she feels. If she is feeling really well, that is good, but if she is still feeling run down and crappy then maybe she needs something else. It is entirely possible she will get back those #'s in time. I know that i dont recover my baseline #'s right after a course of iv's . It takes a while....sort of a delayed reaction. I hope you feel better about things, and i hope she is feeling much better and gets her #'s back up to where you are both comfortable <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Renee,
Im sorry you are going thru this....
The lower fev1 might be temporary till she is completely over whatever virus is affecting her. I have also heard of people with cf reaching a plateau in their pft's and stay there for years. This may happen also. I know everyone tells us not too get too hung up on #'s and its hard not to, but it does depend on how she feels. If she is feeling really well, that is good, but if she is still feeling run down and crappy then maybe she needs something else. It is entirely possible she will get back those #'s in time. I know that i dont recover my baseline #'s right after a course of iv's . It takes a while....sort of a delayed reaction. I hope you feel better about things, and i hope she is feeling much better and gets her #'s back up to where you are both comfortable <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Renee,
Im sorry you are going thru this....
The lower fev1 might be temporary till she is completely over whatever virus is affecting her. I have also heard of people with cf reaching a plateau in their pft's and stay there for years. This may happen also. I know everyone tells us not too get too hung up on #'s and its hard not to, but it does depend on how she feels. If she is feeling really well, that is good, but if she is still feeling run down and crappy then maybe she needs something else. It is entirely possible she will get back those #'s in time. I know that i dont recover my baseline #'s right after a course of iv's . It takes a while....sort of a delayed reaction. I hope you feel better about things, and i hope she is feeling much better and gets her #'s back up to where you are both comfortable <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Renee,
Im sorry you are going thru this....
The lower fev1 might be temporary till she is completely over whatever virus is affecting her. I have also heard of people with cf reaching a plateau in their pft's and stay there for years. This may happen also. I know everyone tells us not too get too hung up on #'s and its hard not to, but it does depend on how she feels. If she is feeling really well, that is good, but if she is still feeling run down and crappy then maybe she needs something else. It is entirely possible she will get back those #'s in time. I know that i dont recover my baseline #'s right after a course of iv's . It takes a while....sort of a delayed reaction. I hope you feel better about things, and i hope she is feeling much better and gets her #'s back up to where you are both comfortable <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Renee,
Im sorry you are going thru this....
The lower fev1 might be temporary till she is completely over whatever virus is affecting her. I have also heard of people with cf reaching a plateau in their pft's and stay there for years. This may happen also. I know everyone tells us not too get too hung up on #'s and its hard not to, but it does depend on how she feels. If she is feeling really well, that is good, but if she is still feeling run down and crappy then maybe she needs something else. It is entirely possible she will get back those #'s in time. I know that i dont recover my baseline #'s right after a course of iv's . It takes a while....sort of a delayed reaction. I hope you feel better about things, and i hope she is feeling much better and gets her #'s back up to where you are both comfortable <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lightNlife]

Hi Renee, good news, you're normal! There are some seasons with CF where it can be so overwhelming that it's difficult to believe that things will improve. Last year I felt like that. Last year was one of my worst on record...loss of so many things healthwise, and I too flipped out a bit. There was a lot of fear and a lot of crying and frustration. But here I am a year later, doing so much better than I thought was possible. I've regained lung function, added weight, and been able to return to work.

I can't relate to the frustration you're feeling as a parent, but I know others here can. I can certainly see why you'd feel overwhelmed.

One thing I can offer that might help, is that CF can be quite a ride at the age your daughter is. In addition to all the usual body issues, CF has a mind of its own in a teenager. At least, that was the case for me. When I was that age my FEV1s were all over the place. Then when my growth spurt was over and I leveled off, my FEV1 stabilized at a nice, high level.

Try not to freak out, just do what you can to help her not lose any ground from carelessness. We're all here for you! It's okay to freak out occasionally. THe holiday season can make people more emotional anyway because of stress and emotion. {hugs} I wish I had exactly the right words you need to read. Just know that I'll be thinking of you and praying that your daughters will enjoy health to the greatest extent possible for as long as possible.

 

[lightNlife]

Hi Renee, good news, you're normal! There are some seasons with CF where it can be so overwhelming that it's difficult to believe that things will improve. Last year I felt like that. Last year was one of my worst on record...loss of so many things healthwise, and I too flipped out a bit. There was a lot of fear and a lot of crying and frustration. But here I am a year later, doing so much better than I thought was possible. I've regained lung function, added weight, and been able to return to work.

I can't relate to the frustration you're feeling as a parent, but I know others here can. I can certainly see why you'd feel overwhelmed.

One thing I can offer that might help, is that CF can be quite a ride at the age your daughter is. In addition to all the usual body issues, CF has a mind of its own in a teenager. At least, that was the case for me. When I was that age my FEV1s were all over the place. Then when my growth spurt was over and I leveled off, my FEV1 stabilized at a nice, high level.

Try not to freak out, just do what you can to help her not lose any ground from carelessness. We're all here for you! It's okay to freak out occasionally. THe holiday season can make people more emotional anyway because of stress and emotion. {hugs} I wish I had exactly the right words you need to read. Just know that I'll be thinking of you and praying that your daughters will enjoy health to the greatest extent possible for as long as possible.

 

[lightNlife]

Hi Renee, good news, you're normal! There are some seasons with CF where it can be so overwhelming that it's difficult to believe that things will improve. Last year I felt like that. Last year was one of my worst on record...loss of so many things healthwise, and I too flipped out a bit. There was a lot of fear and a lot of crying and frustration. But here I am a year later, doing so much better than I thought was possible. I've regained lung function, added weight, and been able to return to work.

I can't relate to the frustration you're feeling as a parent, but I know others here can. I can certainly see why you'd feel overwhelmed.

One thing I can offer that might help, is that CF can be quite a ride at the age your daughter is. In addition to all the usual body issues, CF has a mind of its own in a teenager. At least, that was the case for me. When I was that age my FEV1s were all over the place. Then when my growth spurt was over and I leveled off, my FEV1 stabilized at a nice, high level.

Try not to freak out, just do what you can to help her not lose any ground from carelessness. We're all here for you! It's okay to freak out occasionally. THe holiday season can make people more emotional anyway because of stress and emotion. {hugs} I wish I had exactly the right words you need to read. Just know that I'll be thinking of you and praying that your daughters will enjoy health to the greatest extent possible for as long as possible.

 

[lightNlife]

Hi Renee, good news, you're normal! There are some seasons with CF where it can be so overwhelming that it's difficult to believe that things will improve. Last year I felt like that. Last year was one of my worst on record...loss of so many things healthwise, and I too flipped out a bit. There was a lot of fear and a lot of crying and frustration. But here I am a year later, doing so much better than I thought was possible. I've regained lung function, added weight, and been able to return to work.

I can't relate to the frustration you're feeling as a parent, but I know others here can. I can certainly see why you'd feel overwhelmed.

One thing I can offer that might help, is that CF can be quite a ride at the age your daughter is. In addition to all the usual body issues, CF has a mind of its own in a teenager. At least, that was the case for me. When I was that age my FEV1s were all over the place. Then when my growth spurt was over and I leveled off, my FEV1 stabilized at a nice, high level.

Try not to freak out, just do what you can to help her not lose any ground from carelessness. We're all here for you! It's okay to freak out occasionally. THe holiday season can make people more emotional anyway because of stress and emotion. {hugs} I wish I had exactly the right words you need to read. Just know that I'll be thinking of you and praying that your daughters will enjoy health to the greatest extent possible for as long as possible.

 

[lightNlife]

Hi Renee, good news, you're normal! There are some seasons with CF where it can be so overwhelming that it's difficult to believe that things will improve. Last year I felt like that. Last year was one of my worst on record...loss of so many things healthwise, and I too flipped out a bit. There was a lot of fear and a lot of crying and frustration. But here I am a year later, doing so much better than I thought was possible. I've regained lung function, added weight, and been able to return to work.

I can't relate to the frustration you're feeling as a parent, but I know others here can. I can certainly see why you'd feel overwhelmed.

One thing I can offer that might help, is that CF can be quite a ride at the age your daughter is. In addition to all the usual body issues, CF has a mind of its own in a teenager. At least, that was the case for me. When I was that age my FEV1s were all over the place. Then when my growth spurt was over and I leveled off, my FEV1 stabilized at a nice, high level.

Try not to freak out, just do what you can to help her not lose any ground from carelessness. We're all here for you! It's okay to freak out occasionally. THe holiday season can make people more emotional anyway because of stress and emotion. {hugs} I wish I had exactly the right words you need to read. Just know that I'll be thinking of you and praying that your daughters will enjoy health to the greatest extent possible for as long as possible.

 

[ReneeP]

Thank you both very much for taking the time to give me some encouragement. I'm feeling a little bit better. I think I took for granted that the girls were so healthy and I had niavely allowed myself to believe that as long as we did their treatments, they'd stay that way.

The dr switched some of her meds around today so hopefully that will help. He bumped her from 10% Mucomyst to 20% and added Hypertonic Saline 7% which she had not been taking before at all. It will be Thursday before we can get it, but hopefully it will help her.

I am terrified...there is no doubt about it. But as with everything else, time makes it easier... It's just another bump in the road... we just have to get up, dust ourselves off as much as possible and keep on walking... Sometimes instead of walking I just want to stand in the middle of the street and scream at the top of my lungs how blanking unfair this is.... I guess that's what I did tonight. Thanks for allowing me to do that...

 

[ReneeP]

Thank you both very much for taking the time to give me some encouragement. I'm feeling a little bit better. I think I took for granted that the girls were so healthy and I had niavely allowed myself to believe that as long as we did their treatments, they'd stay that way.

The dr switched some of her meds around today so hopefully that will help. He bumped her from 10% Mucomyst to 20% and added Hypertonic Saline 7% which she had not been taking before at all. It will be Thursday before we can get it, but hopefully it will help her.

I am terrified...there is no doubt about it. But as with everything else, time makes it easier... It's just another bump in the road... we just have to get up, dust ourselves off as much as possible and keep on walking... Sometimes instead of walking I just want to stand in the middle of the street and scream at the top of my lungs how blanking unfair this is.... I guess that's what I did tonight. Thanks for allowing me to do that...

 

[ReneeP]

Thank you both very much for taking the time to give me some encouragement. I'm feeling a little bit better. I think I took for granted that the girls were so healthy and I had niavely allowed myself to believe that as long as we did their treatments, they'd stay that way.

The dr switched some of her meds around today so hopefully that will help. He bumped her from 10% Mucomyst to 20% and added Hypertonic Saline 7% which she had not been taking before at all. It will be Thursday before we can get it, but hopefully it will help her.

I am terrified...there is no doubt about it. But as with everything else, time makes it easier... It's just another bump in the road... we just have to get up, dust ourselves off as much as possible and keep on walking... Sometimes instead of walking I just want to stand in the middle of the street and scream at the top of my lungs how blanking unfair this is.... I guess that's what I did tonight. Thanks for allowing me to do that...

 

[ReneeP]

Thank you both very much for taking the time to give me some encouragement. I'm feeling a little bit better. I think I took for granted that the girls were so healthy and I had niavely allowed myself to believe that as long as we did their treatments, they'd stay that way.

The dr switched some of her meds around today so hopefully that will help. He bumped her from 10% Mucomyst to 20% and added Hypertonic Saline 7% which she had not been taking before at all. It will be Thursday before we can get it, but hopefully it will help her.

I am terrified...there is no doubt about it. But as with everything else, time makes it easier... It's just another bump in the road... we just have to get up, dust ourselves off as much as possible and keep on walking... Sometimes instead of walking I just want to stand in the middle of the street and scream at the top of my lungs how blanking unfair this is.... I guess that's what I did tonight. Thanks for allowing me to do that...

 

[ReneeP]

Thank you both very much for taking the time to give me some encouragement. I'm feeling a little bit better. I think I took for granted that the girls were so healthy and I had niavely allowed myself to believe that as long as we did their treatments, they'd stay that way.

The dr switched some of her meds around today so hopefully that will help. He bumped her from 10% Mucomyst to 20% and added Hypertonic Saline 7% which she had not been taking before at all. It will be Thursday before we can get it, but hopefully it will help her.

I am terrified...there is no doubt about it. But as with everything else, time makes it easier... It's just another bump in the road... we just have to get up, dust ourselves off as much as possible and keep on walking... Sometimes instead of walking I just want to stand in the middle of the street and scream at the top of my lungs how blanking unfair this is.... I guess that's what I did tonight. Thanks for allowing me to do that...