When do you lower your baseline?

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TonyaH

Guest
Andrew went to clinic yesterday. It was our first 3 month since his hospitalization and picc in November. He has been back on two abx for three weeks for a productive cough. His FEV1 was down 25 points from where it was the day he was released from the hospital. He does not feel sick. In fact, he's doing all of the activities he likes to do. He just "looks" sick to my husband and I..sunken eyes, pasty skin.

Is this when we just expect this as CF life? He is 10 now, and I know he's not going to be healthy forever. Our doc said she's not ruling out another round of ivs, which is fine, but is it time for me to stop "expecting" those huge FEV1 numbers? I mean, I am going to always work toward keeping him at his best health possible, but I also don't want to be impractically worrying about the fact that he's not in the 100s anymore when statistics say he won't be in the 100s forever. Am I making any sense?
 
T

TonyaH

Guest
Andrew went to clinic yesterday. It was our first 3 month since his hospitalization and picc in November. He has been back on two abx for three weeks for a productive cough. His FEV1 was down 25 points from where it was the day he was released from the hospital. He does not feel sick. In fact, he's doing all of the activities he likes to do. He just "looks" sick to my husband and I..sunken eyes, pasty skin.

Is this when we just expect this as CF life? He is 10 now, and I know he's not going to be healthy forever. Our doc said she's not ruling out another round of ivs, which is fine, but is it time for me to stop "expecting" those huge FEV1 numbers? I mean, I am going to always work toward keeping him at his best health possible, but I also don't want to be impractically worrying about the fact that he's not in the 100s anymore when statistics say he won't be in the 100s forever. Am I making any sense?
 
T

TonyaH

Guest
Andrew went to clinic yesterday. It was our first 3 month since his hospitalization and picc in November. He has been back on two abx for three weeks for a productive cough. His FEV1 was down 25 points from where it was the day he was released from the hospital. He does not feel sick. In fact, he's doing all of the activities he likes to do. He just "looks" sick to my husband and I..sunken eyes, pasty skin.

Is this when we just expect this as CF life? He is 10 now, and I know he's not going to be healthy forever. Our doc said she's not ruling out another round of ivs, which is fine, but is it time for me to stop "expecting" those huge FEV1 numbers? I mean, I am going to always work toward keeping him at his best health possible, but I also don't want to be impractically worrying about the fact that he's not in the 100s anymore when statistics say he won't be in the 100s forever. Am I making any sense?
 
T

TonyaH

Guest
Andrew went to clinic yesterday. It was our first 3 month since his hospitalization and picc in November. He has been back on two abx for three weeks for a productive cough. His FEV1 was down 25 points from where it was the day he was released from the hospital. He does not feel sick. In fact, he's doing all of the activities he likes to do. He just "looks" sick to my husband and I..sunken eyes, pasty skin.

Is this when we just expect this as CF life? He is 10 now, and I know he's not going to be healthy forever. Our doc said she's not ruling out another round of ivs, which is fine, but is it time for me to stop "expecting" those huge FEV1 numbers? I mean, I am going to always work toward keeping him at his best health possible, but I also don't want to be impractically worrying about the fact that he's not in the 100s anymore when statistics say he won't be in the 100s forever. Am I making any sense?
 
T

TonyaH

Guest
Andrew went to clinic yesterday. It was our first 3 month since his hospitalization and picc in November. He has been back on two abx for three weeks for a productive cough. His FEV1 was down 25 points from where it was the day he was released from the hospital. He does not feel sick. In fact, he's doing all of the activities he likes to do. He just "looks" sick to my husband and I..sunken eyes, pasty skin.

Is this when we just expect this as CF life? He is 10 now, and I know he's not going to be healthy forever. Our doc said she's not ruling out another round of ivs, which is fine, but is it time for me to stop "expecting" those huge FEV1 numbers? I mean, I am going to always work toward keeping him at his best health possible, but I also don't want to be impractically worrying about the fact that he's not in the 100s anymore when statistics say he won't be in the 100s forever. Am I making any sense?
 
R

rubyroselee

New member
Hi Tonya,

Sorry to hear that Andrew doesn't seem to be up to par. As far as a new baseline, I wouldn't count on a new baseline until it's consistently lower for awhile.

For example, my PFT's were in the 70's consistently since my teens. I was always stable in the 70's. I told myself that if I ever reached 80% that I would throw myself a party because I knew it was a stretch. Then a couple years ago I somehow blew 82%. I was so surprised that I celebrated just like I said I would. I have since then been stable ranging in the 80-93% range.

I couldn't tell you how it happened. Maybe it's exercise, maybe it's better antibiotics, maybe it was an asthma component that's now under control - who knows! But now I never rule out the possibility that my PFT's could improve.

At least he's feeling well and able to do his normal kid activities. As far as his PFT's, maybe he's just got something going on that he just can't kick easily. Keep us updated.

Take care!
 
R

rubyroselee

New member
Hi Tonya,

Sorry to hear that Andrew doesn't seem to be up to par. As far as a new baseline, I wouldn't count on a new baseline until it's consistently lower for awhile.

For example, my PFT's were in the 70's consistently since my teens. I was always stable in the 70's. I told myself that if I ever reached 80% that I would throw myself a party because I knew it was a stretch. Then a couple years ago I somehow blew 82%. I was so surprised that I celebrated just like I said I would. I have since then been stable ranging in the 80-93% range.

I couldn't tell you how it happened. Maybe it's exercise, maybe it's better antibiotics, maybe it was an asthma component that's now under control - who knows! But now I never rule out the possibility that my PFT's could improve.

At least he's feeling well and able to do his normal kid activities. As far as his PFT's, maybe he's just got something going on that he just can't kick easily. Keep us updated.

Take care!
 
R

rubyroselee

New member
Hi Tonya,

Sorry to hear that Andrew doesn't seem to be up to par. As far as a new baseline, I wouldn't count on a new baseline until it's consistently lower for awhile.

For example, my PFT's were in the 70's consistently since my teens. I was always stable in the 70's. I told myself that if I ever reached 80% that I would throw myself a party because I knew it was a stretch. Then a couple years ago I somehow blew 82%. I was so surprised that I celebrated just like I said I would. I have since then been stable ranging in the 80-93% range.

I couldn't tell you how it happened. Maybe it's exercise, maybe it's better antibiotics, maybe it was an asthma component that's now under control - who knows! But now I never rule out the possibility that my PFT's could improve.

At least he's feeling well and able to do his normal kid activities. As far as his PFT's, maybe he's just got something going on that he just can't kick easily. Keep us updated.

Take care!
 
R

rubyroselee

New member
Hi Tonya,

Sorry to hear that Andrew doesn't seem to be up to par. As far as a new baseline, I wouldn't count on a new baseline until it's consistently lower for awhile.

For example, my PFT's were in the 70's consistently since my teens. I was always stable in the 70's. I told myself that if I ever reached 80% that I would throw myself a party because I knew it was a stretch. Then a couple years ago I somehow blew 82%. I was so surprised that I celebrated just like I said I would. I have since then been stable ranging in the 80-93% range.

I couldn't tell you how it happened. Maybe it's exercise, maybe it's better antibiotics, maybe it was an asthma component that's now under control - who knows! But now I never rule out the possibility that my PFT's could improve.

At least he's feeling well and able to do his normal kid activities. As far as his PFT's, maybe he's just got something going on that he just can't kick easily. Keep us updated.

Take care!
 
R

rubyroselee

New member
Hi Tonya,

Sorry to hear that Andrew doesn't seem to be up to par. As far as a new baseline, I wouldn't count on a new baseline until it's consistently lower for awhile.

For example, my PFT's were in the 70's consistently since my teens. I was always stable in the 70's. I told myself that if I ever reached 80% that I would throw myself a party because I knew it was a stretch. Then a couple years ago I somehow blew 82%. I was so surprised that I celebrated just like I said I would. I have since then been stable ranging in the 80-93% range.

I couldn't tell you how it happened. Maybe it's exercise, maybe it's better antibiotics, maybe it was an asthma component that's now under control - who knows! But now I never rule out the possibility that my PFT's could improve.

At least he's feeling well and able to do his normal kid activities. As far as his PFT's, maybe he's just got something going on that he just can't kick easily. Keep us updated.

Take care!
 
P

pjspiegle

New member
Personally, I think you don't give up getting back to baseline for 18 months or more before you accept a new baseline. It has taken Nathan over a year to get back to his baseline before and he has done it. We are still fighting to get back to 112% currently, yesterday he was 107%, and were just beginning to accept that 100% was going to be the new baseline after over another year of struggling, but then yesterday it was up almost to baseline and we have found some new hope.

Keep in mind that we have been doing 21 days of IV's about every 3-4 months for 3 years now. We dropped all the way into the 70's and we have been making it almost back to baseline for the last 3 years with ups and downs on the way back to baseline. Original baseline was 122%, doubt we will ever see that again but are hopeful of the 112% and will be happy to accept the 107% if need be.

Experience says that it is not uncommon to need a 2nd round of IV's and sometimes even a 3rd one to get back to baseline. I say not to give up until it has been 18 months of no more improvement.

Also, experience with Nathan has been that he can be very sick and not know that he is himself. Then, we will go ahead and do a tune-up based on clinical stuff, like PFT's, and he starts to feel so much better that only then does he realize he was sick. It is also my understanding that this is normal for "normal" kids and teens as well. So sometimes, you have to go by the numbers to make the decision and then when he feels how much better he feels, he will start to "know" his body better and have more of a clue on his own. Boys especially need to feel the difference after starting a tune-up to put the "feelings" together, girls generally are better at knowing their bodies, not all, but most.

Again, my advice, don't throw the towel in quite yet,
 
P

pjspiegle

New member
Personally, I think you don't give up getting back to baseline for 18 months or more before you accept a new baseline. It has taken Nathan over a year to get back to his baseline before and he has done it. We are still fighting to get back to 112% currently, yesterday he was 107%, and were just beginning to accept that 100% was going to be the new baseline after over another year of struggling, but then yesterday it was up almost to baseline and we have found some new hope.

Keep in mind that we have been doing 21 days of IV's about every 3-4 months for 3 years now. We dropped all the way into the 70's and we have been making it almost back to baseline for the last 3 years with ups and downs on the way back to baseline. Original baseline was 122%, doubt we will ever see that again but are hopeful of the 112% and will be happy to accept the 107% if need be.

Experience says that it is not uncommon to need a 2nd round of IV's and sometimes even a 3rd one to get back to baseline. I say not to give up until it has been 18 months of no more improvement.

Also, experience with Nathan has been that he can be very sick and not know that he is himself. Then, we will go ahead and do a tune-up based on clinical stuff, like PFT's, and he starts to feel so much better that only then does he realize he was sick. It is also my understanding that this is normal for "normal" kids and teens as well. So sometimes, you have to go by the numbers to make the decision and then when he feels how much better he feels, he will start to "know" his body better and have more of a clue on his own. Boys especially need to feel the difference after starting a tune-up to put the "feelings" together, girls generally are better at knowing their bodies, not all, but most.

Again, my advice, don't throw the towel in quite yet,
 
P

pjspiegle

New member
Personally, I think you don't give up getting back to baseline for 18 months or more before you accept a new baseline. It has taken Nathan over a year to get back to his baseline before and he has done it. We are still fighting to get back to 112% currently, yesterday he was 107%, and were just beginning to accept that 100% was going to be the new baseline after over another year of struggling, but then yesterday it was up almost to baseline and we have found some new hope.

Keep in mind that we have been doing 21 days of IV's about every 3-4 months for 3 years now. We dropped all the way into the 70's and we have been making it almost back to baseline for the last 3 years with ups and downs on the way back to baseline. Original baseline was 122%, doubt we will ever see that again but are hopeful of the 112% and will be happy to accept the 107% if need be.

Experience says that it is not uncommon to need a 2nd round of IV's and sometimes even a 3rd one to get back to baseline. I say not to give up until it has been 18 months of no more improvement.

Also, experience with Nathan has been that he can be very sick and not know that he is himself. Then, we will go ahead and do a tune-up based on clinical stuff, like PFT's, and he starts to feel so much better that only then does he realize he was sick. It is also my understanding that this is normal for "normal" kids and teens as well. So sometimes, you have to go by the numbers to make the decision and then when he feels how much better he feels, he will start to "know" his body better and have more of a clue on his own. Boys especially need to feel the difference after starting a tune-up to put the "feelings" together, girls generally are better at knowing their bodies, not all, but most.

Again, my advice, don't throw the towel in quite yet,
 
P

pjspiegle

New member
Personally, I think you don't give up getting back to baseline for 18 months or more before you accept a new baseline. It has taken Nathan over a year to get back to his baseline before and he has done it. We are still fighting to get back to 112% currently, yesterday he was 107%, and were just beginning to accept that 100% was going to be the new baseline after over another year of struggling, but then yesterday it was up almost to baseline and we have found some new hope.

Keep in mind that we have been doing 21 days of IV's about every 3-4 months for 3 years now. We dropped all the way into the 70's and we have been making it almost back to baseline for the last 3 years with ups and downs on the way back to baseline. Original baseline was 122%, doubt we will ever see that again but are hopeful of the 112% and will be happy to accept the 107% if need be.

Experience says that it is not uncommon to need a 2nd round of IV's and sometimes even a 3rd one to get back to baseline. I say not to give up until it has been 18 months of no more improvement.

Also, experience with Nathan has been that he can be very sick and not know that he is himself. Then, we will go ahead and do a tune-up based on clinical stuff, like PFT's, and he starts to feel so much better that only then does he realize he was sick. It is also my understanding that this is normal for "normal" kids and teens as well. So sometimes, you have to go by the numbers to make the decision and then when he feels how much better he feels, he will start to "know" his body better and have more of a clue on his own. Boys especially need to feel the difference after starting a tune-up to put the "feelings" together, girls generally are better at knowing their bodies, not all, but most.

Again, my advice, don't throw the towel in quite yet,
 
P

pjspiegle

New member
Personally, I think you don't give up getting back to baseline for 18 months or more before you accept a new baseline. It has taken Nathan over a year to get back to his baseline before and he has done it. We are still fighting to get back to 112% currently, yesterday he was 107%, and were just beginning to accept that 100% was going to be the new baseline after over another year of struggling, but then yesterday it was up almost to baseline and we have found some new hope.

Keep in mind that we have been doing 21 days of IV's about every 3-4 months for 3 years now. We dropped all the way into the 70's and we have been making it almost back to baseline for the last 3 years with ups and downs on the way back to baseline. Original baseline was 122%, doubt we will ever see that again but are hopeful of the 112% and will be happy to accept the 107% if need be.

Experience says that it is not uncommon to need a 2nd round of IV's and sometimes even a 3rd one to get back to baseline. I say not to give up until it has been 18 months of no more improvement.

Also, experience with Nathan has been that he can be very sick and not know that he is himself. Then, we will go ahead and do a tune-up based on clinical stuff, like PFT's, and he starts to feel so much better that only then does he realize he was sick. It is also my understanding that this is normal for "normal" kids and teens as well. So sometimes, you have to go by the numbers to make the decision and then when he feels how much better he feels, he will start to "know" his body better and have more of a clue on his own. Boys especially need to feel the difference after starting a tune-up to put the "feelings" together, girls generally are better at knowing their bodies, not all, but most.

Again, my advice, don't throw the towel in quite yet,
 
T

tammykrumrey

Guest
Tonya,

I agree, don't give up yet. I had assumed that both of my girls PFTs were a baseline mid to low 90s, because that is where they were as a norm for years, and lo and behold, last clinic they were both over 100%!! I was literally blown away, and I could tell by their little faces they were just as excited as I was.

In my opinion 25 points is too much to not be taking action. Maybe he does need another round of IV meds to help get him back up. Maybe he is not on the right antibiotic for what he cultures. I think my girls doctor would be admitting them and starting something pretty quickly and not waiting, from what you are describing.

I'm sorry he isn't feeling well again<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Tonya,

I agree, don't give up yet. I had assumed that both of my girls PFTs were a baseline mid to low 90s, because that is where they were as a norm for years, and lo and behold, last clinic they were both over 100%!! I was literally blown away, and I could tell by their little faces they were just as excited as I was.

In my opinion 25 points is too much to not be taking action. Maybe he does need another round of IV meds to help get him back up. Maybe he is not on the right antibiotic for what he cultures. I think my girls doctor would be admitting them and starting something pretty quickly and not waiting, from what you are describing.

I'm sorry he isn't feeling well again<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Tonya,

I agree, don't give up yet. I had assumed that both of my girls PFTs were a baseline mid to low 90s, because that is where they were as a norm for years, and lo and behold, last clinic they were both over 100%!! I was literally blown away, and I could tell by their little faces they were just as excited as I was.

In my opinion 25 points is too much to not be taking action. Maybe he does need another round of IV meds to help get him back up. Maybe he is not on the right antibiotic for what he cultures. I think my girls doctor would be admitting them and starting something pretty quickly and not waiting, from what you are describing.

I'm sorry he isn't feeling well again<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Tonya,

I agree, don't give up yet. I had assumed that both of my girls PFTs were a baseline mid to low 90s, because that is where they were as a norm for years, and lo and behold, last clinic they were both over 100%!! I was literally blown away, and I could tell by their little faces they were just as excited as I was.

In my opinion 25 points is too much to not be taking action. Maybe he does need another round of IV meds to help get him back up. Maybe he is not on the right antibiotic for what he cultures. I think my girls doctor would be admitting them and starting something pretty quickly and not waiting, from what you are describing.

I'm sorry he isn't feeling well again<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
Tonya,

I agree, don't give up yet. I had assumed that both of my girls PFTs were a baseline mid to low 90s, because that is where they were as a norm for years, and lo and behold, last clinic they were both over 100%!! I was literally blown away, and I could tell by their little faces they were just as excited as I was.

In my opinion 25 points is too much to not be taking action. Maybe he does need another round of IV meds to help get him back up. Maybe he is not on the right antibiotic for what he cultures. I think my girls doctor would be admitting them and starting something pretty quickly and not waiting, from what you are describing.

I'm sorry he isn't feeling well again<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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