mistylavon
New member
Hi - I was just wondering if it's the normal thing to do at the CF Clinic you go to to put the CF patient in the hospital every 3 - 4 months for a tune-up? At what age does your clinic start this?
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Hospital Tune-ups
- Thread starter mistylavon
- Start date
mistylavon
New member
Hi - I was just wondering if it's the normal thing to do at the CF Clinic you go to to put the CF patient in the hospital every 3 - 4 months for a tune-up? At what age does your clinic start this?
mistylavon
New member
Hi - I was just wondering if it's the normal thing to do at the CF Clinic you go to to put the CF patient in the hospital every 3 - 4 months for a tune-up? At what age does your clinic start this?
LeneSouthAfrica
New member
They do this 3 monthly with all the young ones at the hospital I attend. But after a few hospital admissions, they usually let them do the drip at home if the medical aid/insurance pays, the child is well and the parents are comfortable with the ordeal. The theory is to try and to keep them bug-free as long as possible as it is almost impossible to get rid of an established Pseudomonas-and-company,which are bound to pop up some time. They can't always test the sputum positively for the bug before giving IV, as it may already be growing deep down in the lungs where they cannot get a swab, and since they don't want to miss anything they do it anyway. Our guys are convinced this is working as there are many children who are still bug-free after, say, ten years - an improvement from when I grew up. When they get older the frequency of IV is assessed individually.
LeneSouthAfrica
New member
They do this 3 monthly with all the young ones at the hospital I attend. But after a few hospital admissions, they usually let them do the drip at home if the medical aid/insurance pays, the child is well and the parents are comfortable with the ordeal. The theory is to try and to keep them bug-free as long as possible as it is almost impossible to get rid of an established Pseudomonas-and-company,which are bound to pop up some time. They can't always test the sputum positively for the bug before giving IV, as it may already be growing deep down in the lungs where they cannot get a swab, and since they don't want to miss anything they do it anyway. Our guys are convinced this is working as there are many children who are still bug-free after, say, ten years - an improvement from when I grew up. When they get older the frequency of IV is assessed individually.
LeneSouthAfrica
New member
They do this 3 monthly with all the young ones at the hospital I attend. But after a few hospital admissions, they usually let them do the drip at home if the medical aid/insurance pays, the child is well and the parents are comfortable with the ordeal. The theory is to try and to keep them bug-free as long as possible as it is almost impossible to get rid of an established Pseudomonas-and-company,which are bound to pop up some time. They can't always test the sputum positively for the bug before giving IV, as it may already be growing deep down in the lungs where they cannot get a swab, and since they don't want to miss anything they do it anyway. Our guys are convinced this is working as there are many children who are still bug-free after, say, ten years - an improvement from when I grew up. When they get older the frequency of IV is assessed individually.
IV's every 3-4 to months regardless of health is called the Denmark way. This technique was pioneered there, and has shown to prolong life of CFers there into their 5th decade quite frequently.
The issue can often be resistance with so much antibiotic treatment so frequently. But, patients with CF rarely die of resistance. They most frequently lie due to lack of lung function (repeated infections over time, causing lung damage). Rarely do you hear "oh, the patient had an FEV1 of 60%, got an infection that was pan-resistant, and died a month later).
So many physicians, especially in the US, are giving strong consideration to the Denmark Way.
The issue can often be resistance with so much antibiotic treatment so frequently. But, patients with CF rarely die of resistance. They most frequently lie due to lack of lung function (repeated infections over time, causing lung damage). Rarely do you hear "oh, the patient had an FEV1 of 60%, got an infection that was pan-resistant, and died a month later).
So many physicians, especially in the US, are giving strong consideration to the Denmark Way.
IV's every 3-4 to months regardless of health is called the Denmark way. This technique was pioneered there, and has shown to prolong life of CFers there into their 5th decade quite frequently.
The issue can often be resistance with so much antibiotic treatment so frequently. But, patients with CF rarely die of resistance. They most frequently lie due to lack of lung function (repeated infections over time, causing lung damage). Rarely do you hear "oh, the patient had an FEV1 of 60%, got an infection that was pan-resistant, and died a month later).
So many physicians, especially in the US, are giving strong consideration to the Denmark Way.
The issue can often be resistance with so much antibiotic treatment so frequently. But, patients with CF rarely die of resistance. They most frequently lie due to lack of lung function (repeated infections over time, causing lung damage). Rarely do you hear "oh, the patient had an FEV1 of 60%, got an infection that was pan-resistant, and died a month later).
So many physicians, especially in the US, are giving strong consideration to the Denmark Way.
IV's every 3-4 to months regardless of health is called the Denmark way. This technique was pioneered there, and has shown to prolong life of CFers there into their 5th decade quite frequently.
The issue can often be resistance with so much antibiotic treatment so frequently. But, patients with CF rarely die of resistance. They most frequently lie due to lack of lung function (repeated infections over time, causing lung damage). Rarely do you hear "oh, the patient had an FEV1 of 60%, got an infection that was pan-resistant, and died a month later).
So many physicians, especially in the US, are giving strong consideration to the Denmark Way.
The issue can often be resistance with so much antibiotic treatment so frequently. But, patients with CF rarely die of resistance. They most frequently lie due to lack of lung function (repeated infections over time, causing lung damage). Rarely do you hear "oh, the patient had an FEV1 of 60%, got an infection that was pan-resistant, and died a month later).
So many physicians, especially in the US, are giving strong consideration to the Denmark Way.
So what do you all think of this? I go in for a tune up every year in the fall. I have chronic Pseudo and usually culture other stuff too, NO staph though. I think I would probably benefit every 6 months but you all know how much it sucks so I have not done it yet. I can not imagine every 3 months.
What do you think? I mean to try to keep the infection low or non-existent would be great and one could live longer.
Jennifer 35 years old with CF and CFRD
What do you think? I mean to try to keep the infection low or non-existent would be great and one could live longer.
Jennifer 35 years old with CF and CFRD
So what do you all think of this? I go in for a tune up every year in the fall. I have chronic Pseudo and usually culture other stuff too, NO staph though. I think I would probably benefit every 6 months but you all know how much it sucks so I have not done it yet. I can not imagine every 3 months.
What do you think? I mean to try to keep the infection low or non-existent would be great and one could live longer.
Jennifer 35 years old with CF and CFRD
What do you think? I mean to try to keep the infection low or non-existent would be great and one could live longer.
Jennifer 35 years old with CF and CFRD