CF Doc. gives negative survival rate for 9 yr. old,Do I get second opinion??

[katlynnsmom]

My daughter ,Katlynn,has Cf. She just got out of the hospital about 3 weeks ago. After being there for 2 1/2 weeks.This is her 3rd time this year. The first time she had gotten staph. And now it still stays with her.This has been the worst year . She use to only go in about once a year.But after this last stay they put her on new med's ..hypertonic saline and Tobi. She seems to be doing better. Coughing up more stuff from her lungs when she does the hyper.Two weeks ago she caught a bug from school. So we took her out to do the homebound thing.What else?So today she went back to the CF doc. in Birmingham. Not her reg. cf doc. This one she has seen about three times while in hospital and today.Well, her ox. level was 100%. I thought was great....but her lung function test,blow test, that has never been too good. Was in the 40's...So the doc. comes in and starts telling me ..and katlynn..the lung function was not good enough. Her lungs are still sick and with the stuff we are doing now will not make them better ,just stable.And giving me a time length on her life. Her survival rate looks short...3 to 5 years he said.
She is a very active child . Has not been on the new med's long...And I thought for her oxygen level to pick up from 89 a few weeks ago to 100 was a good thing. Not only I feel the blow test has alot to do with technique.What else can I do .She is on all these med's ...took her out of school....can't keep her in a bubble!!!Have to take her back in 4 weeks ,if not any better on the lung function test he said to bring your suitcase.I am considering calling Childrens Hospital in Nashville ..to see if I can get her in there.This has been a bad year and to have to sit there with her and be told 3 to 5 years, my heart dropped. She got upset too....she only got the part he mentioned about a lung transplant. She thought that was what they were going to do..Any advice will help.
Thanks,
Nora

 

[katlynnsmom]

My daughter ,Katlynn,has Cf. She just got out of the hospital about 3 weeks ago. After being there for 2 1/2 weeks.This is her 3rd time this year. The first time she had gotten staph. And now it still stays with her.This has been the worst year . She use to only go in about once a year.But after this last stay they put her on new med's ..hypertonic saline and Tobi. She seems to be doing better. Coughing up more stuff from her lungs when she does the hyper.Two weeks ago she caught a bug from school. So we took her out to do the homebound thing.What else?So today she went back to the CF doc. in Birmingham. Not her reg. cf doc. This one she has seen about three times while in hospital and today.Well, her ox. level was 100%. I thought was great....but her lung function test,blow test, that has never been too good. Was in the 40's...So the doc. comes in and starts telling me ..and katlynn..the lung function was not good enough. Her lungs are still sick and with the stuff we are doing now will not make them better ,just stable.And giving me a time length on her life. Her survival rate looks short...3 to 5 years he said.
She is a very active child . Has not been on the new med's long...And I thought for her oxygen level to pick up from 89 a few weeks ago to 100 was a good thing. Not only I feel the blow test has alot to do with technique.What else can I do .She is on all these med's ...took her out of school....can't keep her in a bubble!!!Have to take her back in 4 weeks ,if not any better on the lung function test he said to bring your suitcase.I am considering calling Childrens Hospital in Nashville ..to see if I can get her in there.This has been a bad year and to have to sit there with her and be told 3 to 5 years, my heart dropped. She got upset too....she only got the part he mentioned about a lung transplant. She thought that was what they were going to do..Any advice will help.
Thanks,
Nora

 

[katlynnsmom]

My daughter ,Katlynn,has Cf. She just got out of the hospital about 3 weeks ago. After being there for 2 1/2 weeks.This is her 3rd time this year. The first time she had gotten staph. And now it still stays with her.This has been the worst year . She use to only go in about once a year.But after this last stay they put her on new med's ..hypertonic saline and Tobi. She seems to be doing better. Coughing up more stuff from her lungs when she does the hyper.Two weeks ago she caught a bug from school. So we took her out to do the homebound thing.What else?So today she went back to the CF doc. in Birmingham. Not her reg. cf doc. This one she has seen about three times while in hospital and today.Well, her ox. level was 100%. I thought was great....but her lung function test,blow test, that has never been too good. Was in the 40's...So the doc. comes in and starts telling me ..and katlynn..the lung function was not good enough. Her lungs are still sick and with the stuff we are doing now will not make them better ,just stable.And giving me a time length on her life. Her survival rate looks short...3 to 5 years he said.
She is a very active child . Has not been on the new med's long...And I thought for her oxygen level to pick up from 89 a few weeks ago to 100 was a good thing. Not only I feel the blow test has alot to do with technique.What else can I do .She is on all these med's ...took her out of school....can't keep her in a bubble!!!Have to take her back in 4 weeks ,if not any better on the lung function test he said to bring your suitcase.I am considering calling Childrens Hospital in Nashville ..to see if I can get her in there.This has been a bad year and to have to sit there with her and be told 3 to 5 years, my heart dropped. She got upset too....she only got the part he mentioned about a lung transplant. She thought that was what they were going to do..Any advice will help.
Thanks,
Nora

 

[katlynnsmom]

My daughter ,Katlynn,has Cf. She just got out of the hospital about 3 weeks ago. After being there for 2 1/2 weeks.This is her 3rd time this year. The first time she had gotten staph. And now it still stays with her.This has been the worst year . She use to only go in about once a year.But after this last stay they put her on new med's ..hypertonic saline and Tobi. She seems to be doing better. Coughing up more stuff from her lungs when she does the hyper.Two weeks ago she caught a bug from school. So we took her out to do the homebound thing.What else?So today she went back to the CF doc. in Birmingham. Not her reg. cf doc. This one she has seen about three times while in hospital and today.Well, her ox. level was 100%. I thought was great....but her lung function test,blow test, that has never been too good. Was in the 40's...So the doc. comes in and starts telling me ..and katlynn..the lung function was not good enough. Her lungs are still sick and with the stuff we are doing now will not make them better ,just stable.And giving me a time length on her life. Her survival rate looks short...3 to 5 years he said.
She is a very active child . Has not been on the new med's long...And I thought for her oxygen level to pick up from 89 a few weeks ago to 100 was a good thing. Not only I feel the blow test has alot to do with technique.What else can I do .She is on all these med's ...took her out of school....can't keep her in a bubble!!!Have to take her back in 4 weeks ,if not any better on the lung function test he said to bring your suitcase.I am considering calling Childrens Hospital in Nashville ..to see if I can get her in there.This has been a bad year and to have to sit there with her and be told 3 to 5 years, my heart dropped. She got upset too....she only got the part he mentioned about a lung transplant. She thought that was what they were going to do..Any advice will help.
Thanks,
Nora

 

[katlynnsmom]

My daughter ,Katlynn,has Cf. She just got out of the hospital about 3 weeks ago. After being there for 2 1/2 weeks.This is her 3rd time this year. The first time she had gotten staph. And now it still stays with her.This has been the worst year . She use to only go in about once a year.But after this last stay they put her on new med's ..hypertonic saline and Tobi. She seems to be doing better. Coughing up more stuff from her lungs when she does the hyper.Two weeks ago she caught a bug from school. So we took her out to do the homebound thing.What else?So today she went back to the CF doc. in Birmingham. Not her reg. cf doc. This one she has seen about three times while in hospital and today.Well, her ox. level was 100%. I thought was great....but her lung function test,blow test, that has never been too good. Was in the 40's...So the doc. comes in and starts telling me ..and katlynn..the lung function was not good enough. Her lungs are still sick and with the stuff we are doing now will not make them better ,just stable.And giving me a time length on her life. Her survival rate looks short...3 to 5 years he said.
<br /> She is a very active child . Has not been on the new med's long...And I thought for her oxygen level to pick up from 89 a few weeks ago to 100 was a good thing. Not only I feel the blow test has alot to do with technique.What else can I do .She is on all these med's ...took her out of school....can't keep her in a bubble!!!Have to take her back in 4 weeks ,if not any better on the lung function test he said to bring your suitcase.I am considering calling Childrens Hospital in Nashville ..to see if I can get her in there.This has been a bad year and to have to sit there with her and be told 3 to 5 years, my heart dropped. She got upset too....she only got the part he mentioned about a lung transplant. She thought that was what they were going to do..Any advice will help.
<br /> Thanks,
<br /> Nora

 

[laurenwinn]

Hi there,
I'm sorry to hear your having a hard time, but if the doctor has the nerve to say something like that in front of a child I would change hospitals for that reason alone. It can never hurt to get new opinions, and your limiting yourself by sticking to that one. Hope this helps a little. Stay strong!

 

[laurenwinn]

Hi there,
I'm sorry to hear your having a hard time, but if the doctor has the nerve to say something like that in front of a child I would change hospitals for that reason alone. It can never hurt to get new opinions, and your limiting yourself by sticking to that one. Hope this helps a little. Stay strong!

 

[laurenwinn]

Hi there,
I'm sorry to hear your having a hard time, but if the doctor has the nerve to say something like that in front of a child I would change hospitals for that reason alone. It can never hurt to get new opinions, and your limiting yourself by sticking to that one. Hope this helps a little. Stay strong!

 

[laurenwinn]

Hi there,
I'm sorry to hear your having a hard time, but if the doctor has the nerve to say something like that in front of a child I would change hospitals for that reason alone. It can never hurt to get new opinions, and your limiting yourself by sticking to that one. Hope this helps a little. Stay strong!

 

[laurenwinn]

Hi there,
<br />I'm sorry to hear your having a hard time, but if the doctor has the nerve to say something like that in front of a child I would change hospitals for that reason alone. It can never hurt to get new opinions, and your limiting yourself by sticking to that one. Hope this helps a little. Stay strong!

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
She got upset too....she only got the part he mentioned about a lung transplat. She thought that was what they were going to do..Any advice will help.

Thanks,

Nora</end quote></div>

I hope you will get a second opinion. If it were me, I would make sure my child understands that the doctor was really, really wrong to say all that in front of her and I might even suggest that a doctor who is so stupid he can't figure out he shouldn't do that probably is too stupid to figure out her life expectancy too.

The only other thing I can suggest is that you check out <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org">my website</a> if you haven't done so yet. My son with atypical CF has not been on antibiotics in 10 years and I have not been on antibiotics in nearly 5 years. Some folks who have tried some of my suggestions are telling me they need fewer enzymes, they need less insulin, they have better PFT's...etc.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
She got upset too....she only got the part he mentioned about a lung transplat. She thought that was what they were going to do..Any advice will help.

Thanks,

Nora</end quote></div>

I hope you will get a second opinion. If it were me, I would make sure my child understands that the doctor was really, really wrong to say all that in front of her and I might even suggest that a doctor who is so stupid he can't figure out he shouldn't do that probably is too stupid to figure out her life expectancy too.

The only other thing I can suggest is that you check out <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org">my website</a> if you haven't done so yet. My son with atypical CF has not been on antibiotics in 10 years and I have not been on antibiotics in nearly 5 years. Some folks who have tried some of my suggestions are telling me they need fewer enzymes, they need less insulin, they have better PFT's...etc.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
She got upset too....she only got the part he mentioned about a lung transplat. She thought that was what they were going to do..Any advice will help.

Thanks,

Nora</end quote></div>

I hope you will get a second opinion. If it were me, I would make sure my child understands that the doctor was really, really wrong to say all that in front of her and I might even suggest that a doctor who is so stupid he can't figure out he shouldn't do that probably is too stupid to figure out her life expectancy too.

The only other thing I can suggest is that you check out <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org">my website</a> if you haven't done so yet. My son with atypical CF has not been on antibiotics in 10 years and I have not been on antibiotics in nearly 5 years. Some folks who have tried some of my suggestions are telling me they need fewer enzymes, they need less insulin, they have better PFT's...etc.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
She got upset too....she only got the part he mentioned about a lung transplat. She thought that was what they were going to do..Any advice will help.

Thanks,

Nora</end quote>

I hope you will get a second opinion. If it were me, I would make sure my child understands that the doctor was really, really wrong to say all that in front of her and I might even suggest that a doctor who is so stupid he can't figure out he shouldn't do that probably is too stupid to figure out her life expectancy too.

The only other thing I can suggest is that you check out <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org">my website</a> if you haven't done so yet. My son with atypical CF has not been on antibiotics in 10 years and I have not been on antibiotics in nearly 5 years. Some folks who have tried some of my suggestions are telling me they need fewer enzymes, they need less insulin, they have better PFT's...etc.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
<br /> She got upset too....she only got the part he mentioned about a lung transplat. She thought that was what they were going to do..Any advice will help.
<br />
<br /> Thanks,
<br />
<br /> Nora</end quote>
<br />
<br />I hope you will get a second opinion. If it were me, I would make sure my child understands that the doctor was really, really wrong to say all that in front of her and I might even suggest that a doctor who is so stupid he can't figure out he shouldn't do that probably is too stupid to figure out her life expectancy too.
<br />
<br />The only other thing I can suggest is that you check out <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org">my website</a> if you haven't done so yet. My son with atypical CF has not been on antibiotics in 10 years and I have not been on antibiotics in nearly 5 years. Some folks who have tried some of my suggestions are telling me they need fewer enzymes, they need less insulin, they have better PFT's...etc.

 

[Nightwriter]

Nora,

I've just read your post a few times, because I want to make sure I understand it. I couldn't tell how old your child is and what exactly her history has been. Are you saying that a doctor who hardly knows your daughter who is going through a bad period who was just sick, came up with a prognosis like that? And said this in front of a child? I'm horrified.

I have several comments. Eleven years ago, my FEV1 dipped as low as 32% after a horrible year. And after finding a different doctor, one who believes there's always room for improvement, it started climbing steadily up. The other doctor had once told me I would just get gradually worse and under his care I did!

Most Cfer's have asthma, because we have hyperactive airways. Is Katlynn being treated for asthma? You question the "blow test." And you are right, technique can change the numbers. Also, is the "blow test" (are you talking peak flow or the full PFT tests) done after hypertonic saline and Tobi? I know that if I had to take a peak flow test after Tobi, it would be extremely low. Tobi especially contricts the airways. And the aftermath of a cold -- her lungs would be so irritated. And she just got the cold, after being sick when her lungs would have so much inflamation. I'm not a doctor, but his prognosis is based on what? And how dare he make a prognosis? Does he have a crystal ball?

It also amazes me that a doctor would offer no treatments. My doctor changes my medications as I go through good and bad patches. She doesn't just throw her hands up and say, "Bring a suitcase." In fact, my experience was the complete opposite. When I met my doctor, she said, "My patients don't go to the hospital." I had had many hospitalizations and found that hard to believe. But it was true.

I have written lots of posts on controlling the asthma component of CF. If you can help reduce inflamation in her lungs, her airways can open up more and she won't have to have bugs like Staph trapped, just sitting in the lungs causing infection. There are lots of things you can do, in additition to medications.

If I were you, I would find a better doctor. I would start looking into the asthma component of CF by reading some of the posts here on the topic (I can refer you to some) and do what you can to make her environment healthier. And remember, not all doctors are right. Especially one who already exhibited such poor judgement.

Over the years, I also have my heart drop at things that doctors have said. So I know how you feel. You are on this site. You've already taken a step. I really believe there is much you can do.

 

[Nightwriter]

Nora,

I've just read your post a few times, because I want to make sure I understand it. I couldn't tell how old your child is and what exactly her history has been. Are you saying that a doctor who hardly knows your daughter who is going through a bad period who was just sick, came up with a prognosis like that? And said this in front of a child? I'm horrified.

I have several comments. Eleven years ago, my FEV1 dipped as low as 32% after a horrible year. And after finding a different doctor, one who believes there's always room for improvement, it started climbing steadily up. The other doctor had once told me I would just get gradually worse and under his care I did!

Most Cfer's have asthma, because we have hyperactive airways. Is Katlynn being treated for asthma? You question the "blow test." And you are right, technique can change the numbers. Also, is the "blow test" (are you talking peak flow or the full PFT tests) done after hypertonic saline and Tobi? I know that if I had to take a peak flow test after Tobi, it would be extremely low. Tobi especially contricts the airways. And the aftermath of a cold -- her lungs would be so irritated. And she just got the cold, after being sick when her lungs would have so much inflamation. I'm not a doctor, but his prognosis is based on what? And how dare he make a prognosis? Does he have a crystal ball?

It also amazes me that a doctor would offer no treatments. My doctor changes my medications as I go through good and bad patches. She doesn't just throw her hands up and say, "Bring a suitcase." In fact, my experience was the complete opposite. When I met my doctor, she said, "My patients don't go to the hospital." I had had many hospitalizations and found that hard to believe. But it was true.

I have written lots of posts on controlling the asthma component of CF. If you can help reduce inflamation in her lungs, her airways can open up more and she won't have to have bugs like Staph trapped, just sitting in the lungs causing infection. There are lots of things you can do, in additition to medications.

If I were you, I would find a better doctor. I would start looking into the asthma component of CF by reading some of the posts here on the topic (I can refer you to some) and do what you can to make her environment healthier. And remember, not all doctors are right. Especially one who already exhibited such poor judgement.

Over the years, I also have my heart drop at things that doctors have said. So I know how you feel. You are on this site. You've already taken a step. I really believe there is much you can do.

 

[Nightwriter]

Nora,

I've just read your post a few times, because I want to make sure I understand it. I couldn't tell how old your child is and what exactly her history has been. Are you saying that a doctor who hardly knows your daughter who is going through a bad period who was just sick, came up with a prognosis like that? And said this in front of a child? I'm horrified.

I have several comments. Eleven years ago, my FEV1 dipped as low as 32% after a horrible year. And after finding a different doctor, one who believes there's always room for improvement, it started climbing steadily up. The other doctor had once told me I would just get gradually worse and under his care I did!

Most Cfer's have asthma, because we have hyperactive airways. Is Katlynn being treated for asthma? You question the "blow test." And you are right, technique can change the numbers. Also, is the "blow test" (are you talking peak flow or the full PFT tests) done after hypertonic saline and Tobi? I know that if I had to take a peak flow test after Tobi, it would be extremely low. Tobi especially contricts the airways. And the aftermath of a cold -- her lungs would be so irritated. And she just got the cold, after being sick when her lungs would have so much inflamation. I'm not a doctor, but his prognosis is based on what? And how dare he make a prognosis? Does he have a crystal ball?

It also amazes me that a doctor would offer no treatments. My doctor changes my medications as I go through good and bad patches. She doesn't just throw her hands up and say, "Bring a suitcase." In fact, my experience was the complete opposite. When I met my doctor, she said, "My patients don't go to the hospital." I had had many hospitalizations and found that hard to believe. But it was true.

I have written lots of posts on controlling the asthma component of CF. If you can help reduce inflamation in her lungs, her airways can open up more and she won't have to have bugs like Staph trapped, just sitting in the lungs causing infection. There are lots of things you can do, in additition to medications.

If I were you, I would find a better doctor. I would start looking into the asthma component of CF by reading some of the posts here on the topic (I can refer you to some) and do what you can to make her environment healthier. And remember, not all doctors are right. Especially one who already exhibited such poor judgement.

Over the years, I also have my heart drop at things that doctors have said. So I know how you feel. You are on this site. You've already taken a step. I really believe there is much you can do.

 

[Nightwriter]

Nora,

I've just read your post a few times, because I want to make sure I understand it. I couldn't tell how old your child is and what exactly her history has been. Are you saying that a doctor who hardly knows your daughter who is going through a bad period who was just sick, came up with a prognosis like that? And said this in front of a child? I'm horrified.

I have several comments. Eleven years ago, my FEV1 dipped as low as 32% after a horrible year. And after finding a different doctor, one who believes there's always room for improvement, it started climbing steadily up. The other doctor had once told me I would just get gradually worse and under his care I did!

Most Cfer's have asthma, because we have hyperactive airways. Is Katlynn being treated for asthma? You question the "blow test." And you are right, technique can change the numbers. Also, is the "blow test" (are you talking peak flow or the full PFT tests) done after hypertonic saline and Tobi? I know that if I had to take a peak flow test after Tobi, it would be extremely low. Tobi especially contricts the airways. And the aftermath of a cold -- her lungs would be so irritated. And she just got the cold, after being sick when her lungs would have so much inflamation. I'm not a doctor, but his prognosis is based on what? And how dare he make a prognosis? Does he have a crystal ball?

It also amazes me that a doctor would offer no treatments. My doctor changes my medications as I go through good and bad patches. She doesn't just throw her hands up and say, "Bring a suitcase." In fact, my experience was the complete opposite. When I met my doctor, she said, "My patients don't go to the hospital." I had had many hospitalizations and found that hard to believe. But it was true.

I have written lots of posts on controlling the asthma component of CF. If you can help reduce inflamation in her lungs, her airways can open up more and she won't have to have bugs like Staph trapped, just sitting in the lungs causing infection. There are lots of things you can do, in additition to medications.

If I were you, I would find a better doctor. I would start looking into the asthma component of CF by reading some of the posts here on the topic (I can refer you to some) and do what you can to make her environment healthier. And remember, not all doctors are right. Especially one who already exhibited such poor judgement.

Over the years, I also have my heart drop at things that doctors have said. So I know how you feel. You are on this site. You've already taken a step. I really believe there is much you can do.

 

[Nightwriter]

Nora,
<br />
<br />I've just read your post a few times, because I want to make sure I understand it. I couldn't tell how old your child is and what exactly her history has been. Are you saying that a doctor who hardly knows your daughter who is going through a bad period who was just sick, came up with a prognosis like that? And said this in front of a child? I'm horrified.
<br />
<br />I have several comments. Eleven years ago, my FEV1 dipped as low as 32% after a horrible year. And after finding a different doctor, one who believes there's always room for improvement, it started climbing steadily up. The other doctor had once told me I would just get gradually worse and under his care I did!
<br />
<br />Most Cfer's have asthma, because we have hyperactive airways. Is Katlynn being treated for asthma? You question the "blow test." And you are right, technique can change the numbers. Also, is the "blow test" (are you talking peak flow or the full PFT tests) done after hypertonic saline and Tobi? I know that if I had to take a peak flow test after Tobi, it would be extremely low. Tobi especially contricts the airways. And the aftermath of a cold -- her lungs would be so irritated. And she just got the cold, after being sick when her lungs would have so much inflamation. I'm not a doctor, but his prognosis is based on what? And how dare he make a prognosis? Does he have a crystal ball?
<br />
<br />It also amazes me that a doctor would offer no treatments. My doctor changes my medications as I go through good and bad patches. She doesn't just throw her hands up and say, "Bring a suitcase." In fact, my experience was the complete opposite. When I met my doctor, she said, "My patients don't go to the hospital." I had had many hospitalizations and found that hard to believe. But it was true.
<br />
<br />I have written lots of posts on controlling the asthma component of CF. If you can help reduce inflamation in her lungs, her airways can open up more and she won't have to have bugs like Staph trapped, just sitting in the lungs causing infection. There are lots of things you can do, in additition to medications.
<br />
<br />If I were you, I would find a better doctor. I would start looking into the asthma component of CF by reading some of the posts here on the topic (I can refer you to some) and do what you can to make her environment healthier. And remember, not all doctors are right. Especially one who already exhibited such poor judgement.
<br />
<br />Over the years, I also have my heart drop at things that doctors have said. So I know how you feel. You are on this site. You've already taken a step. I really believe there is much you can do.