How often do you go on iv's?

M

minimedic304

New member
DIANE,

I JUST CAME OFF OF THREE WEEKS OF ANTIBITOTICS. I USUALLY HAVE THEN 3 OR 4 TIMES A YEAR. IT SOUNDS CRZY BUT I LOVE THEM. I FEEL SO AWESOME AFTERWORDS THAT I DONT MIND DOING THEM. IF YOU ARE GETTING THEM ALOT THEN YOU SHOULD GET A MED PORT. WHEN YOU FIRST GET IT YOU ARE PRETTY SORE FOR A WEEK BUT WHEN YOU ARE ON THE ANTIBITOTICS YOU ARE VIRTUALLY PAIN FREE. WHEN I GET STUCK WITH THE MED PORT NEEDLE IT DOESNT HURT ONE BIT. WHEN I AM ON THE ANTIBIOTICS I CAN DO EVERYTHING LIKE WORK OUT, AND MOST IMPORTANTLY FISH. WHEN I DO A TOURNAMENT I WILL CAST MY LINE ABOUT 900 TIMES IN 6 HOURS. EVEN AFTER ALL THAT UPPER BODY WORK MY MEDPORT DOESNT HURT.
 
M

minimedic304

New member
DIANE,

I JUST CAME OFF OF THREE WEEKS OF ANTIBITOTICS. I USUALLY HAVE THEN 3 OR 4 TIMES A YEAR. IT SOUNDS CRZY BUT I LOVE THEM. I FEEL SO AWESOME AFTERWORDS THAT I DONT MIND DOING THEM. IF YOU ARE GETTING THEM ALOT THEN YOU SHOULD GET A MED PORT. WHEN YOU FIRST GET IT YOU ARE PRETTY SORE FOR A WEEK BUT WHEN YOU ARE ON THE ANTIBITOTICS YOU ARE VIRTUALLY PAIN FREE. WHEN I GET STUCK WITH THE MED PORT NEEDLE IT DOESNT HURT ONE BIT. WHEN I AM ON THE ANTIBIOTICS I CAN DO EVERYTHING LIKE WORK OUT, AND MOST IMPORTANTLY FISH. WHEN I DO A TOURNAMENT I WILL CAST MY LINE ABOUT 900 TIMES IN 6 HOURS. EVEN AFTER ALL THAT UPPER BODY WORK MY MEDPORT DOESNT HURT.
 
M

minimedic304

New member
DIANE,

I JUST CAME OFF OF THREE WEEKS OF ANTIBITOTICS. I USUALLY HAVE THEN 3 OR 4 TIMES A YEAR. IT SOUNDS CRZY BUT I LOVE THEM. I FEEL SO AWESOME AFTERWORDS THAT I DONT MIND DOING THEM. IF YOU ARE GETTING THEM ALOT THEN YOU SHOULD GET A MED PORT. WHEN YOU FIRST GET IT YOU ARE PRETTY SORE FOR A WEEK BUT WHEN YOU ARE ON THE ANTIBITOTICS YOU ARE VIRTUALLY PAIN FREE. WHEN I GET STUCK WITH THE MED PORT NEEDLE IT DOESNT HURT ONE BIT. WHEN I AM ON THE ANTIBIOTICS I CAN DO EVERYTHING LIKE WORK OUT, AND MOST IMPORTANTLY FISH. WHEN I DO A TOURNAMENT I WILL CAST MY LINE ABOUT 900 TIMES IN 6 HOURS. EVEN AFTER ALL THAT UPPER BODY WORK MY MEDPORT DOESNT HURT.
 
M

minimedic304

New member
DIANE,

I JUST CAME OFF OF THREE WEEKS OF ANTIBITOTICS. I USUALLY HAVE THEN 3 OR 4 TIMES A YEAR. IT SOUNDS CRZY BUT I LOVE THEM. I FEEL SO AWESOME AFTERWORDS THAT I DONT MIND DOING THEM. IF YOU ARE GETTING THEM ALOT THEN YOU SHOULD GET A MED PORT. WHEN YOU FIRST GET IT YOU ARE PRETTY SORE FOR A WEEK BUT WHEN YOU ARE ON THE ANTIBITOTICS YOU ARE VIRTUALLY PAIN FREE. WHEN I GET STUCK WITH THE MED PORT NEEDLE IT DOESNT HURT ONE BIT. WHEN I AM ON THE ANTIBIOTICS I CAN DO EVERYTHING LIKE WORK OUT, AND MOST IMPORTANTLY FISH. WHEN I DO A TOURNAMENT I WILL CAST MY LINE ABOUT 900 TIMES IN 6 HOURS. EVEN AFTER ALL THAT UPPER BODY WORK MY MEDPORT DOESNT HURT.
 
M

minimedic304

New member
DIANE,

I JUST CAME OFF OF THREE WEEKS OF ANTIBITOTICS. I USUALLY HAVE THEN 3 OR 4 TIMES A YEAR. IT SOUNDS CRZY BUT I LOVE THEM. I FEEL SO AWESOME AFTERWORDS THAT I DONT MIND DOING THEM. IF YOU ARE GETTING THEM ALOT THEN YOU SHOULD GET A MED PORT. WHEN YOU FIRST GET IT YOU ARE PRETTY SORE FOR A WEEK BUT WHEN YOU ARE ON THE ANTIBITOTICS YOU ARE VIRTUALLY PAIN FREE. WHEN I GET STUCK WITH THE MED PORT NEEDLE IT DOESNT HURT ONE BIT. WHEN I AM ON THE ANTIBIOTICS I CAN DO EVERYTHING LIKE WORK OUT, AND MOST IMPORTANTLY FISH. WHEN I DO A TOURNAMENT I WILL CAST MY LINE ABOUT 900 TIMES IN 6 HOURS. EVEN AFTER ALL THAT UPPER BODY WORK MY MEDPORT DOESNT HURT.
 
L

lightNlife

New member
Last night at dinner I was explaining the different between preventive tune-ups and necessary IVs for exacerbation.

It's my understanding that tune-ups are most effective when they're done on a regular basis for those (particularly younger CFers) who have not yet been colonized by PA or other bugs. Studies have shown--research in Denmark in particular--that preventive tune-ups every 6 months can prolong a state of good health in a CFer.

By contrast, older patients like myself, who are colonized with PA, B. cepacia, aspergillus or other bacteria, do not benefit as greatly from IV antibiotics when an exacerbation is not occuring. The reason is, the bugs are already strong enough that feeding them abx can increase the likelihood of antibiotic resistance.

Here's how I think of it:

Suppose you have a relatively neat home that only gets a little bit of clutter here and there. By straightening up on a regular basis, maybe by spending 5 minutes each night putting things away, you can help keep the clutter from getting out of control.

<i>In this scenario the "clutter" represents the more basic infections in a mild stage of CF</i>

Now assume your house is a slovenly mess most of the time. 5 minutes of straightening up is going to have little or no impact on the cleanliness of your house. It's better to spend a much larger effort when you truly can't stand the mess anymore. That way, you get it all picked up and can coast with mild sloppiness for another few weeks.

<i>In this scenario, the "mess" represent colonization of the lungs by persistent infection</i>

I hope that helps explain it a little bit.

A note to Diane,
The reason they do the same antibiotics each time is very likely because your cultures have shown that their susceptible to those specific drugs. Also, the drugs they're probably treating you with are broad-spectrum antibiotics that are much more likely to wipe out any type of infection than if they were to do something else. Don't mistake "routine" with inattention on your doctor's part. Trust his judgment.
 
L

lightNlife

New member
Last night at dinner I was explaining the different between preventive tune-ups and necessary IVs for exacerbation.

It's my understanding that tune-ups are most effective when they're done on a regular basis for those (particularly younger CFers) who have not yet been colonized by PA or other bugs. Studies have shown--research in Denmark in particular--that preventive tune-ups every 6 months can prolong a state of good health in a CFer.

By contrast, older patients like myself, who are colonized with PA, B. cepacia, aspergillus or other bacteria, do not benefit as greatly from IV antibiotics when an exacerbation is not occuring. The reason is, the bugs are already strong enough that feeding them abx can increase the likelihood of antibiotic resistance.

Here's how I think of it:

Suppose you have a relatively neat home that only gets a little bit of clutter here and there. By straightening up on a regular basis, maybe by spending 5 minutes each night putting things away, you can help keep the clutter from getting out of control.

<i>In this scenario the "clutter" represents the more basic infections in a mild stage of CF</i>

Now assume your house is a slovenly mess most of the time. 5 minutes of straightening up is going to have little or no impact on the cleanliness of your house. It's better to spend a much larger effort when you truly can't stand the mess anymore. That way, you get it all picked up and can coast with mild sloppiness for another few weeks.

<i>In this scenario, the "mess" represent colonization of the lungs by persistent infection</i>

I hope that helps explain it a little bit.

A note to Diane,
The reason they do the same antibiotics each time is very likely because your cultures have shown that their susceptible to those specific drugs. Also, the drugs they're probably treating you with are broad-spectrum antibiotics that are much more likely to wipe out any type of infection than if they were to do something else. Don't mistake "routine" with inattention on your doctor's part. Trust his judgment.
 
L

lightNlife

New member
Last night at dinner I was explaining the different between preventive tune-ups and necessary IVs for exacerbation.

It's my understanding that tune-ups are most effective when they're done on a regular basis for those (particularly younger CFers) who have not yet been colonized by PA or other bugs. Studies have shown--research in Denmark in particular--that preventive tune-ups every 6 months can prolong a state of good health in a CFer.

By contrast, older patients like myself, who are colonized with PA, B. cepacia, aspergillus or other bacteria, do not benefit as greatly from IV antibiotics when an exacerbation is not occuring. The reason is, the bugs are already strong enough that feeding them abx can increase the likelihood of antibiotic resistance.

Here's how I think of it:

Suppose you have a relatively neat home that only gets a little bit of clutter here and there. By straightening up on a regular basis, maybe by spending 5 minutes each night putting things away, you can help keep the clutter from getting out of control.

<i>In this scenario the "clutter" represents the more basic infections in a mild stage of CF</i>

Now assume your house is a slovenly mess most of the time. 5 minutes of straightening up is going to have little or no impact on the cleanliness of your house. It's better to spend a much larger effort when you truly can't stand the mess anymore. That way, you get it all picked up and can coast with mild sloppiness for another few weeks.

<i>In this scenario, the "mess" represent colonization of the lungs by persistent infection</i>

I hope that helps explain it a little bit.

A note to Diane,
The reason they do the same antibiotics each time is very likely because your cultures have shown that their susceptible to those specific drugs. Also, the drugs they're probably treating you with are broad-spectrum antibiotics that are much more likely to wipe out any type of infection than if they were to do something else. Don't mistake "routine" with inattention on your doctor's part. Trust his judgment.
 
L

lightNlife

New member
Last night at dinner I was explaining the different between preventive tune-ups and necessary IVs for exacerbation.

It's my understanding that tune-ups are most effective when they're done on a regular basis for those (particularly younger CFers) who have not yet been colonized by PA or other bugs. Studies have shown--research in Denmark in particular--that preventive tune-ups every 6 months can prolong a state of good health in a CFer.

By contrast, older patients like myself, who are colonized with PA, B. cepacia, aspergillus or other bacteria, do not benefit as greatly from IV antibiotics when an exacerbation is not occuring. The reason is, the bugs are already strong enough that feeding them abx can increase the likelihood of antibiotic resistance.

Here's how I think of it:

Suppose you have a relatively neat home that only gets a little bit of clutter here and there. By straightening up on a regular basis, maybe by spending 5 minutes each night putting things away, you can help keep the clutter from getting out of control.

<i>In this scenario the "clutter" represents the more basic infections in a mild stage of CF</i>

Now assume your house is a slovenly mess most of the time. 5 minutes of straightening up is going to have little or no impact on the cleanliness of your house. It's better to spend a much larger effort when you truly can't stand the mess anymore. That way, you get it all picked up and can coast with mild sloppiness for another few weeks.

<i>In this scenario, the "mess" represent colonization of the lungs by persistent infection</i>

I hope that helps explain it a little bit.

A note to Diane,
The reason they do the same antibiotics each time is very likely because your cultures have shown that their susceptible to those specific drugs. Also, the drugs they're probably treating you with are broad-spectrum antibiotics that are much more likely to wipe out any type of infection than if they were to do something else. Don't mistake "routine" with inattention on your doctor's part. Trust his judgment.
 
L

lightNlife

New member
Last night at dinner I was explaining the different between preventive tune-ups and necessary IVs for exacerbation.

It's my understanding that tune-ups are most effective when they're done on a regular basis for those (particularly younger CFers) who have not yet been colonized by PA or other bugs. Studies have shown--research in Denmark in particular--that preventive tune-ups every 6 months can prolong a state of good health in a CFer.

By contrast, older patients like myself, who are colonized with PA, B. cepacia, aspergillus or other bacteria, do not benefit as greatly from IV antibiotics when an exacerbation is not occuring. The reason is, the bugs are already strong enough that feeding them abx can increase the likelihood of antibiotic resistance.

Here's how I think of it:

Suppose you have a relatively neat home that only gets a little bit of clutter here and there. By straightening up on a regular basis, maybe by spending 5 minutes each night putting things away, you can help keep the clutter from getting out of control.

<i>In this scenario the "clutter" represents the more basic infections in a mild stage of CF</i>

Now assume your house is a slovenly mess most of the time. 5 minutes of straightening up is going to have little or no impact on the cleanliness of your house. It's better to spend a much larger effort when you truly can't stand the mess anymore. That way, you get it all picked up and can coast with mild sloppiness for another few weeks.

<i>In this scenario, the "mess" represent colonization of the lungs by persistent infection</i>

I hope that helps explain it a little bit.

A note to Diane,
The reason they do the same antibiotics each time is very likely because your cultures have shown that their susceptible to those specific drugs. Also, the drugs they're probably treating you with are broad-spectrum antibiotics that are much more likely to wipe out any type of infection than if they were to do something else. Don't mistake "routine" with inattention on your doctor's part. Trust his judgment.
 
G

Giggles

New member
Personally my experience has been the following. I use to wait til I was SUPER sick before I went into the hospital and because of that is was hell. I was just so ill and fighting to get better and then fighting to get back to my baseline was just so very hard. I then started a few years back to proactivley go in for a tune up in the fall to gear up for winter. IT has worked out good in terms of I am not fighting horrible infections other than the ones I always have Psuedo and some other stuff. It has worked for me and I have been able to hold it at one per year. However, I have a HORRIBLE time while on IV drugs with MAJOR side effects and the whole process has become HORRIBLE because of that on top of the fact now I am resistant to some of the drugs the Dr. has been using and he now wants to put me on one that will pack a better punch which I am happy for since I have not gotten good results after tune upi BUT I am allergic so will have to be desensitized. Interesting. Not looking forward to it.

All in all I have found bottom line that Proactive tune ups and not waiting til I am super sick have been better for me to handle physically and mentally.

Good Luck and Feel Better

Jennifer 36 Years old with CF and CFRD
 
G

Giggles

New member
Personally my experience has been the following. I use to wait til I was SUPER sick before I went into the hospital and because of that is was hell. I was just so ill and fighting to get better and then fighting to get back to my baseline was just so very hard. I then started a few years back to proactivley go in for a tune up in the fall to gear up for winter. IT has worked out good in terms of I am not fighting horrible infections other than the ones I always have Psuedo and some other stuff. It has worked for me and I have been able to hold it at one per year. However, I have a HORRIBLE time while on IV drugs with MAJOR side effects and the whole process has become HORRIBLE because of that on top of the fact now I am resistant to some of the drugs the Dr. has been using and he now wants to put me on one that will pack a better punch which I am happy for since I have not gotten good results after tune upi BUT I am allergic so will have to be desensitized. Interesting. Not looking forward to it.

All in all I have found bottom line that Proactive tune ups and not waiting til I am super sick have been better for me to handle physically and mentally.

Good Luck and Feel Better

Jennifer 36 Years old with CF and CFRD
 
G

Giggles

New member
Personally my experience has been the following. I use to wait til I was SUPER sick before I went into the hospital and because of that is was hell. I was just so ill and fighting to get better and then fighting to get back to my baseline was just so very hard. I then started a few years back to proactivley go in for a tune up in the fall to gear up for winter. IT has worked out good in terms of I am not fighting horrible infections other than the ones I always have Psuedo and some other stuff. It has worked for me and I have been able to hold it at one per year. However, I have a HORRIBLE time while on IV drugs with MAJOR side effects and the whole process has become HORRIBLE because of that on top of the fact now I am resistant to some of the drugs the Dr. has been using and he now wants to put me on one that will pack a better punch which I am happy for since I have not gotten good results after tune upi BUT I am allergic so will have to be desensitized. Interesting. Not looking forward to it.

All in all I have found bottom line that Proactive tune ups and not waiting til I am super sick have been better for me to handle physically and mentally.

Good Luck and Feel Better

Jennifer 36 Years old with CF and CFRD
 
G

Giggles

New member
Personally my experience has been the following. I use to wait til I was SUPER sick before I went into the hospital and because of that is was hell. I was just so ill and fighting to get better and then fighting to get back to my baseline was just so very hard. I then started a few years back to proactivley go in for a tune up in the fall to gear up for winter. IT has worked out good in terms of I am not fighting horrible infections other than the ones I always have Psuedo and some other stuff. It has worked for me and I have been able to hold it at one per year. However, I have a HORRIBLE time while on IV drugs with MAJOR side effects and the whole process has become HORRIBLE because of that on top of the fact now I am resistant to some of the drugs the Dr. has been using and he now wants to put me on one that will pack a better punch which I am happy for since I have not gotten good results after tune upi BUT I am allergic so will have to be desensitized. Interesting. Not looking forward to it.

All in all I have found bottom line that Proactive tune ups and not waiting til I am super sick have been better for me to handle physically and mentally.

Good Luck and Feel Better

Jennifer 36 Years old with CF and CFRD
 
G

Giggles

New member
Personally my experience has been the following. I use to wait til I was SUPER sick before I went into the hospital and because of that is was hell. I was just so ill and fighting to get better and then fighting to get back to my baseline was just so very hard. I then started a few years back to proactivley go in for a tune up in the fall to gear up for winter. IT has worked out good in terms of I am not fighting horrible infections other than the ones I always have Psuedo and some other stuff. It has worked for me and I have been able to hold it at one per year. However, I have a HORRIBLE time while on IV drugs with MAJOR side effects and the whole process has become HORRIBLE because of that on top of the fact now I am resistant to some of the drugs the Dr. has been using and he now wants to put me on one that will pack a better punch which I am happy for since I have not gotten good results after tune upi BUT I am allergic so will have to be desensitized. Interesting. Not looking forward to it.

All in all I have found bottom line that Proactive tune ups and not waiting til I am super sick have been better for me to handle physically and mentally.

Good Luck and Feel Better

Jennifer 36 Years old with CF and CFRD
 
C

chonkie

New member
I use to only get ivs every 6-8 months when I was 19. I am 24 now and these days my PA is pretty relentless, I would go on Ivs for 2 weeks and after the first week I will start getting sick again. Non-stop coughing 24/7, and major pain and tiredness. I would then give in and phone the doctor. I am also resistant to almost all antibiotics. Last year I was on Ivs 13 times. The worst is my lung function is still great, fev1 42% and on no oxygen, just this PA that never says die. =)

don
 
C

chonkie

New member
I use to only get ivs every 6-8 months when I was 19. I am 24 now and these days my PA is pretty relentless, I would go on Ivs for 2 weeks and after the first week I will start getting sick again. Non-stop coughing 24/7, and major pain and tiredness. I would then give in and phone the doctor. I am also resistant to almost all antibiotics. Last year I was on Ivs 13 times. The worst is my lung function is still great, fev1 42% and on no oxygen, just this PA that never says die. =)

don
 
C

chonkie

New member
I use to only get ivs every 6-8 months when I was 19. I am 24 now and these days my PA is pretty relentless, I would go on Ivs for 2 weeks and after the first week I will start getting sick again. Non-stop coughing 24/7, and major pain and tiredness. I would then give in and phone the doctor. I am also resistant to almost all antibiotics. Last year I was on Ivs 13 times. The worst is my lung function is still great, fev1 42% and on no oxygen, just this PA that never says die. =)

don
 
C

chonkie

New member
I use to only get ivs every 6-8 months when I was 19. I am 24 now and these days my PA is pretty relentless, I would go on Ivs for 2 weeks and after the first week I will start getting sick again. Non-stop coughing 24/7, and major pain and tiredness. I would then give in and phone the doctor. I am also resistant to almost all antibiotics. Last year I was on Ivs 13 times. The worst is my lung function is still great, fev1 42% and on no oxygen, just this PA that never says die. =)

don
 
C

chonkie

New member
I use to only get ivs every 6-8 months when I was 19. I am 24 now and these days my PA is pretty relentless, I would go on Ivs for 2 weeks and after the first week I will start getting sick again. Non-stop coughing 24/7, and major pain and tiredness. I would then give in and phone the doctor. I am also resistant to almost all antibiotics. Last year I was on Ivs 13 times. The worst is my lung function is still great, fev1 42% and on no oxygen, just this PA that never says die. =)
<br />
<br />don
 
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