Mild CF - no need for treatment?

Jeana · Jun 25, 2009

I know I responded to your PM, but I wanted to reiterate what I said here.

First of all, did she have testing to decide that she had CF? Sweat test? Genetic test? If not, that would be my first step. Secondly, if the tests proved that she had CF, I disagree about her having a mild case and therefore doing no treatment. Even if she seems to have mild symptoms now, all cases of CF are progressive.

I was told that I had a mild case of CF, when I was younger, because the progression was slower, but I still see the progression. I wish I had done more preventative maintenance and saw an actual CF doc instead of pulmonologists and ENT docs who had me take repeated courses of antibiotics for sinus infections that made my MRSA and PA so much more resistant.

In my opinion, after confirming that she does indeed have CF through a genetic test, I would begin preventative care (pulmozyme, cpt, sinus rinses, etc.) so that she has as long as possible before her lungs sustain damage. She should have a second opinion, perhaps doing some research to find a CF doctor that is highly trusted in the CF community.

Jeana · Jun 25, 2009

I know I responded to your PM, but I wanted to reiterate what I said here.

First of all, did she have testing to decide that she had CF? Sweat test? Genetic test? If not, that would be my first step. Secondly, if the tests proved that she had CF, I disagree about her having a mild case and therefore doing no treatment. Even if she seems to have mild symptoms now, all cases of CF are progressive.

I was told that I had a mild case of CF, when I was younger, because the progression was slower, but I still see the progression. I wish I had done more preventative maintenance and saw an actual CF doc instead of pulmonologists and ENT docs who had me take repeated courses of antibiotics for sinus infections that made my MRSA and PA so much more resistant.

In my opinion, after confirming that she does indeed have CF through a genetic test, I would begin preventative care (pulmozyme, cpt, sinus rinses, etc.) so that she has as long as possible before her lungs sustain damage. She should have a second opinion, perhaps doing some research to find a CF doctor that is highly trusted in the CF community.

Jeana · Jun 25, 2009

I know I responded to your PM, but I wanted to reiterate what I said here.

First of all, did she have testing to decide that she had CF? Sweat test? Genetic test? If not, that would be my first step. Secondly, if the tests proved that she had CF, I disagree about her having a mild case and therefore doing no treatment. Even if she seems to have mild symptoms now, all cases of CF are progressive.

I was told that I had a mild case of CF, when I was younger, because the progression was slower, but I still see the progression. I wish I had done more preventative maintenance and saw an actual CF doc instead of pulmonologists and ENT docs who had me take repeated courses of antibiotics for sinus infections that made my MRSA and PA so much more resistant.

In my opinion, after confirming that she does indeed have CF through a genetic test, I would begin preventative care (pulmozyme, cpt, sinus rinses, etc.) so that she has as long as possible before her lungs sustain damage. She should have a second opinion, perhaps doing some research to find a CF doctor that is highly trusted in the CF community.

Jeana · Jun 25, 2009

I know I responded to your PM, but I wanted to reiterate what I said here.

First of all, did she have testing to decide that she had CF? Sweat test? Genetic test? If not, that would be my first step. Secondly, if the tests proved that she had CF, I disagree about her having a mild case and therefore doing no treatment. Even if she seems to have mild symptoms now, all cases of CF are progressive.

I was told that I had a mild case of CF, when I was younger, because the progression was slower, but I still see the progression. I wish I had done more preventative maintenance and saw an actual CF doc instead of pulmonologists and ENT docs who had me take repeated courses of antibiotics for sinus infections that made my MRSA and PA so much more resistant.

In my opinion, after confirming that she does indeed have CF through a genetic test, I would begin preventative care (pulmozyme, cpt, sinus rinses, etc.) so that she has as long as possible before her lungs sustain damage. She should have a second opinion, perhaps doing some research to find a CF doctor that is highly trusted in the CF community.

Jeana · Jun 25, 2009

I know I responded to your PM, but I wanted to reiterate what I said here.
 
 First of all, did she have testing to decide that she had CF? Sweat test? Genetic test? If not, that would be my first step. Secondly, if the tests proved that she had CF, I disagree about her having a mild case and therefore doing no treatment. Even if she seems to have mild symptoms now, all cases of CF are progressive.
 
 I was told that I had a mild case of CF, when I was younger, because the progression was slower, but I still see the progression. I wish I had done more preventative maintenance and saw an actual CF doc instead of pulmonologists and ENT docs who had me take repeated courses of antibiotics for sinus infections that made my MRSA and PA so much more resistant.
 
 In my opinion, after confirming that she does indeed have CF through a genetic test, I would begin preventative care (pulmozyme, cpt, sinus rinses, etc.) so that she has as long as possible before her lungs sustain damage. She should have a second opinion, perhaps doing some research to find a CF doctor that is highly trusted in the CF community.

MicheleGazelle · Jun 25, 2009

I have a mild form. I had to nearly die to get diagnosed. Even though I was deathly ill, I had to advocate hard to get any treatment. For example, I wasn't given digestive enzymes until I asked for them and I had no idea they existed at first. It was only after my son was put on them that I knew to ask. I think CF doctors don't take it seriously because "you are healthy for a person with CF" -- even if you are waaaay sick. I have gradually gotten off the prescription drugs I used to take and so on but it was with a lot of work, a lot of lifestyle and dietary changes (etc). I think not treating mild CF is medical neglect.

MicheleGazelle · Jun 25, 2009

I have a mild form. I had to nearly die to get diagnosed. Even though I was deathly ill, I had to advocate hard to get any treatment. For example, I wasn't given digestive enzymes until I asked for them and I had no idea they existed at first. It was only after my son was put on them that I knew to ask. I think CF doctors don't take it seriously because "you are healthy for a person with CF" -- even if you are waaaay sick. I have gradually gotten off the prescription drugs I used to take and so on but it was with a lot of work, a lot of lifestyle and dietary changes (etc). I think not treating mild CF is medical neglect.

MicheleGazelle · Jun 25, 2009

I have a mild form. I had to nearly die to get diagnosed. Even though I was deathly ill, I had to advocate hard to get any treatment. For example, I wasn't given digestive enzymes until I asked for them and I had no idea they existed at first. It was only after my son was put on them that I knew to ask. I think CF doctors don't take it seriously because "you are healthy for a person with CF" -- even if you are waaaay sick. I have gradually gotten off the prescription drugs I used to take and so on but it was with a lot of work, a lot of lifestyle and dietary changes (etc). I think not treating mild CF is medical neglect.

MicheleGazelle · Jun 25, 2009

I have a mild form. I had to nearly die to get diagnosed. Even though I was deathly ill, I had to advocate hard to get any treatment. For example, I wasn't given digestive enzymes until I asked for them and I had no idea they existed at first. It was only after my son was put on them that I knew to ask. I think CF doctors don't take it seriously because "you are healthy for a person with CF" -- even if you are waaaay sick. I have gradually gotten off the prescription drugs I used to take and so on but it was with a lot of work, a lot of lifestyle and dietary changes (etc). I think not treating mild CF is medical neglect.

MicheleGazelle · Jun 25, 2009

I have a mild form. I had to nearly die to get diagnosed. Even though I was deathly ill, I had to advocate hard to get any treatment. For example, I wasn't given digestive enzymes until I asked for them and I had no idea they existed at first. It was only after my son was put on them that I knew to ask. I think CF doctors don't take it seriously because "you are healthy for a person with CF" -- even if you are waaaay sick. I have gradually gotten off the prescription drugs I used to take and so on but it was with a lot of work, a lot of lifestyle and dietary changes (etc). I think not treating mild CF is medical neglect.

just1more · Jun 25, 2009

If she has CF, then she will ultimately need care, however, it is not likely available in Haiti.

At some point, she may be forced to chose between her work there and treating her CF, if the diagnosis is confirmed.

That said, it takes more than someone saying you have CF or declaring it yourself to gain or need treatment. If she feels she has the signs of CF, which it sounds possible, then the next time she is state-side I would strongly suggest she seek out a CF specialist for a consultation and some testing.

Only by being tested and formally diagnosed will she have cf and at that point the decision on Haiti vs US would need to be had unfortunately.

just1more · Jun 25, 2009

If she has CF, then she will ultimately need care, however, it is not likely available in Haiti.

At some point, she may be forced to chose between her work there and treating her CF, if the diagnosis is confirmed.

That said, it takes more than someone saying you have CF or declaring it yourself to gain or need treatment. If she feels she has the signs of CF, which it sounds possible, then the next time she is state-side I would strongly suggest she seek out a CF specialist for a consultation and some testing.

Only by being tested and formally diagnosed will she have cf and at that point the decision on Haiti vs US would need to be had unfortunately.

just1more · Jun 25, 2009

If she has CF, then she will ultimately need care, however, it is not likely available in Haiti.

At some point, she may be forced to chose between her work there and treating her CF, if the diagnosis is confirmed.

That said, it takes more than someone saying you have CF or declaring it yourself to gain or need treatment. If she feels she has the signs of CF, which it sounds possible, then the next time she is state-side I would strongly suggest she seek out a CF specialist for a consultation and some testing.

Only by being tested and formally diagnosed will she have cf and at that point the decision on Haiti vs US would need to be had unfortunately.

just1more · Jun 25, 2009

If she has CF, then she will ultimately need care, however, it is not likely available in Haiti.

At some point, she may be forced to chose between her work there and treating her CF, if the diagnosis is confirmed.

That said, it takes more than someone saying you have CF or declaring it yourself to gain or need treatment. If she feels she has the signs of CF, which it sounds possible, then the next time she is state-side I would strongly suggest she seek out a CF specialist for a consultation and some testing.

Only by being tested and formally diagnosed will she have cf and at that point the decision on Haiti vs US would need to be had unfortunately.

just1more · Jun 25, 2009

If she has CF, then she will ultimately need care, however, it is not likely available in Haiti.
 
 At some point, she may be forced to chose between her work there and treating her CF, if the diagnosis is confirmed.
 
 That said, it takes more than someone saying you have CF or declaring it yourself to gain or need treatment. If she feels she has the signs of CF, which it sounds possible, then the next time she is state-side I would strongly suggest she seek out a CF specialist for a consultation and some testing.
 
 Only by being tested and formally diagnosed will she have cf and at that point the decision on Haiti vs US would need to be had unfortunately.

JazzysMom · Jun 25, 2009