What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

CF advancement or another bad summer...

D

dsarver

New member
When was the last time you gave a sputum culture? I am worried about some type of low grade infection of a bug that the TOBI and CIPRO are not covering. Especially since you are running low grade temps. I think you should push hard to get your doc to listen to you. We know ourselves best. Yes, you could be having worsening CF but CF itself doesn't cause fevers-right? Infection does.

Good luck
Dawn, 45 w/cf, retired nurse practitioner
 
D

dsarver

New member
When was the last time you gave a sputum culture? I am worried about some type of low grade infection of a bug that the TOBI and CIPRO are not covering. Especially since you are running low grade temps. I think you should push hard to get your doc to listen to you. We know ourselves best. Yes, you could be having worsening CF but CF itself doesn't cause fevers-right? Infection does.

Good luck
Dawn, 45 w/cf, retired nurse practitioner
 
D

dsarver

New member
When was the last time you gave a sputum culture? I am worried about some type of low grade infection of a bug that the TOBI and CIPRO are not covering. Especially since you are running low grade temps. I think you should push hard to get your doc to listen to you. We know ourselves best. Yes, you could be having worsening CF but CF itself doesn't cause fevers-right? Infection does.

Good luck
Dawn, 45 w/cf, retired nurse practitioner
 
D

dsarver

New member
When was the last time you gave a sputum culture? I am worried about some type of low grade infection of a bug that the TOBI and CIPRO are not covering. Especially since you are running low grade temps. I think you should push hard to get your doc to listen to you. We know ourselves best. Yes, you could be having worsening CF but CF itself doesn't cause fevers-right? Infection does.

Good luck
Dawn, 45 w/cf, retired nurse practitioner
 
D

dsarver

New member
When was the last time you gave a sputum culture? I am worried about some type of low grade infection of a bug that the TOBI and CIPRO are not covering. Especially since you are running low grade temps. I think you should push hard to get your doc to listen to you. We know ourselves best. Yes, you could be having worsening CF but CF itself doesn't cause fevers-right? Infection does.
<br />
<br />Good luck
<br />Dawn, 45 w/cf, retired nurse practitioner
 
T

Transplantmommy

New member
Jenny,
I would look into the Prednisone thing too because of the weather. It may help! You could also do another treatment...I actually have done about 6 in one day (that includes getting up in the middle of the night to do one because I couldn't breathe). Of course, this was with the approval of the doctor.

Are you on oxygen at all? If you are not, maybe being on oxygen while you are exercising will help. I was probably at about 80% FEV1 when I was started on O2 while I was sleeping. I was placed on O2 24/7 about a year pre-transplant and it helped for the most part.

I don't know what else to suggest....I hope you feel better soon.
 
T

Transplantmommy

New member
Jenny,
I would look into the Prednisone thing too because of the weather. It may help! You could also do another treatment...I actually have done about 6 in one day (that includes getting up in the middle of the night to do one because I couldn't breathe). Of course, this was with the approval of the doctor.

Are you on oxygen at all? If you are not, maybe being on oxygen while you are exercising will help. I was probably at about 80% FEV1 when I was started on O2 while I was sleeping. I was placed on O2 24/7 about a year pre-transplant and it helped for the most part.

I don't know what else to suggest....I hope you feel better soon.
 
T

Transplantmommy

New member
Jenny,
I would look into the Prednisone thing too because of the weather. It may help! You could also do another treatment...I actually have done about 6 in one day (that includes getting up in the middle of the night to do one because I couldn't breathe). Of course, this was with the approval of the doctor.

Are you on oxygen at all? If you are not, maybe being on oxygen while you are exercising will help. I was probably at about 80% FEV1 when I was started on O2 while I was sleeping. I was placed on O2 24/7 about a year pre-transplant and it helped for the most part.

I don't know what else to suggest....I hope you feel better soon.
 
T

Transplantmommy

New member
Jenny,
I would look into the Prednisone thing too because of the weather. It may help! You could also do another treatment...I actually have done about 6 in one day (that includes getting up in the middle of the night to do one because I couldn't breathe). Of course, this was with the approval of the doctor.

Are you on oxygen at all? If you are not, maybe being on oxygen while you are exercising will help. I was probably at about 80% FEV1 when I was started on O2 while I was sleeping. I was placed on O2 24/7 about a year pre-transplant and it helped for the most part.

I don't know what else to suggest....I hope you feel better soon.
 
T

Transplantmommy

New member
Jenny,
<br />I would look into the Prednisone thing too because of the weather. It may help! You could also do another treatment...I actually have done about 6 in one day (that includes getting up in the middle of the night to do one because I couldn't breathe). Of course, this was with the approval of the doctor.
<br />
<br />Are you on oxygen at all? If you are not, maybe being on oxygen while you are exercising will help. I was probably at about 80% FEV1 when I was started on O2 while I was sleeping. I was placed on O2 24/7 about a year pre-transplant and it helped for the most part.
<br />
<br />I don't know what else to suggest....I hope you feel better soon.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>
I'm not too sure what to think. I did tell my CF doctor about the blood episode, and again he wasn't really concerned. <b> He still feels it's my CF advancing...</b>


Any thoughts??? Any new things to try???



I only do Albuterol, Hypertonic Saline, and Pulmozyme. That's it! Thank you!</end quote></div>

Right after I was diagnosed, my doctor told me "People like you don't get well. Symptom management is the name of the game." My reply to that was "It may be true that I will spend the rest of my life fighting off the next infection but this particular infection has to GO because it's killing me." He physically took a step backwards and looked like I had slapped him in the face. It ticks me off to no end that doctor's make no real effort to get people with CF well and then chalk it up to their genes. To me such statements sound like self-fulfilling prophesy: If you make no effort to get me well, of course my condition will "progress".

At one time, I was on 8 or 9 prescription drugs. The only medication I currently take is guaifenisen in the morning and I keep dayquil in my desk at work. The rest is all dietary changes, supplements, herbs and lifestyle changes. I am well enough to work a full time job. The hole in my left lung has closed. My fingernails are stronger and nicer than they have ever been before in my life. I always had really crappy fingernails until roughly last November. As people here undoubtedly know, fingertip health is directly related to lung health (clubbing, cianosis, etc). So I know from that (and other things) that my lungs work better than they ever have, even though I haven't seen a doctor recently to do PFT's.

Sea salt has done a lot for my ability to tolerate hot weather. It has also helped my lung function and gut function.

I also work hard on my ph balance and that helped me get off all kinds of anti-inflammatory drugs. If you have gout, doctors know that your problem with inflammation is caused by excess acidity and they may even tell you to not eat certain foods which make it worse. But if you have CF, even though it's common knowledge that pwcf are way too acid, they seem to not realize it works the same way: the acidity is the root cause of inflammation and if you address that, you don't need so many anti-inflammatory drugs and you are less vulnerable to infection.

It just so happens that the modern American diet is generally inflammatory and this fact is most likely at least partly to blame for the rise in diabetes and certain other ailments. So if someone has cf and they eat a typical american diet....




Peace and good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>
I'm not too sure what to think. I did tell my CF doctor about the blood episode, and again he wasn't really concerned. <b> He still feels it's my CF advancing...</b>


Any thoughts??? Any new things to try???



I only do Albuterol, Hypertonic Saline, and Pulmozyme. That's it! Thank you!</end quote></div>

Right after I was diagnosed, my doctor told me "People like you don't get well. Symptom management is the name of the game." My reply to that was "It may be true that I will spend the rest of my life fighting off the next infection but this particular infection has to GO because it's killing me." He physically took a step backwards and looked like I had slapped him in the face. It ticks me off to no end that doctor's make no real effort to get people with CF well and then chalk it up to their genes. To me such statements sound like self-fulfilling prophesy: If you make no effort to get me well, of course my condition will "progress".

At one time, I was on 8 or 9 prescription drugs. The only medication I currently take is guaifenisen in the morning and I keep dayquil in my desk at work. The rest is all dietary changes, supplements, herbs and lifestyle changes. I am well enough to work a full time job. The hole in my left lung has closed. My fingernails are stronger and nicer than they have ever been before in my life. I always had really crappy fingernails until roughly last November. As people here undoubtedly know, fingertip health is directly related to lung health (clubbing, cianosis, etc). So I know from that (and other things) that my lungs work better than they ever have, even though I haven't seen a doctor recently to do PFT's.

Sea salt has done a lot for my ability to tolerate hot weather. It has also helped my lung function and gut function.

I also work hard on my ph balance and that helped me get off all kinds of anti-inflammatory drugs. If you have gout, doctors know that your problem with inflammation is caused by excess acidity and they may even tell you to not eat certain foods which make it worse. But if you have CF, even though it's common knowledge that pwcf are way too acid, they seem to not realize it works the same way: the acidity is the root cause of inflammation and if you address that, you don't need so many anti-inflammatory drugs and you are less vulnerable to infection.

It just so happens that the modern American diet is generally inflammatory and this fact is most likely at least partly to blame for the rise in diabetes and certain other ailments. So if someone has cf and they eat a typical american diet....




Peace and good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>
I'm not too sure what to think. I did tell my CF doctor about the blood episode, and again he wasn't really concerned. <b> He still feels it's my CF advancing...</b>


Any thoughts??? Any new things to try???



I only do Albuterol, Hypertonic Saline, and Pulmozyme. That's it! Thank you!</end quote></div>

Right after I was diagnosed, my doctor told me "People like you don't get well. Symptom management is the name of the game." My reply to that was "It may be true that I will spend the rest of my life fighting off the next infection but this particular infection has to GO because it's killing me." He physically took a step backwards and looked like I had slapped him in the face. It ticks me off to no end that doctor's make no real effort to get people with CF well and then chalk it up to their genes. To me such statements sound like self-fulfilling prophesy: If you make no effort to get me well, of course my condition will "progress".

At one time, I was on 8 or 9 prescription drugs. The only medication I currently take is guaifenisen in the morning and I keep dayquil in my desk at work. The rest is all dietary changes, supplements, herbs and lifestyle changes. I am well enough to work a full time job. The hole in my left lung has closed. My fingernails are stronger and nicer than they have ever been before in my life. I always had really crappy fingernails until roughly last November. As people here undoubtedly know, fingertip health is directly related to lung health (clubbing, cianosis, etc). So I know from that (and other things) that my lungs work better than they ever have, even though I haven't seen a doctor recently to do PFT's.

Sea salt has done a lot for my ability to tolerate hot weather. It has also helped my lung function and gut function.

I also work hard on my ph balance and that helped me get off all kinds of anti-inflammatory drugs. If you have gout, doctors know that your problem with inflammation is caused by excess acidity and they may even tell you to not eat certain foods which make it worse. But if you have CF, even though it's common knowledge that pwcf are way too acid, they seem to not realize it works the same way: the acidity is the root cause of inflammation and if you address that, you don't need so many anti-inflammatory drugs and you are less vulnerable to infection.

It just so happens that the modern American diet is generally inflammatory and this fact is most likely at least partly to blame for the rise in diabetes and certain other ailments. So if someone has cf and they eat a typical american diet....




Peace and good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>
I'm not too sure what to think. I did tell my CF doctor about the blood episode, and again he wasn't really concerned. <b> He still feels it's my CF advancing...</b>


Any thoughts??? Any new things to try???



I only do Albuterol, Hypertonic Saline, and Pulmozyme. That's it! Thank you!</end quote>

Right after I was diagnosed, my doctor told me "People like you don't get well. Symptom management is the name of the game." My reply to that was "It may be true that I will spend the rest of my life fighting off the next infection but this particular infection has to GO because it's killing me." He physically took a step backwards and looked like I had slapped him in the face. It ticks me off to no end that doctor's make no real effort to get people with CF well and then chalk it up to their genes. To me such statements sound like self-fulfilling prophesy: If you make no effort to get me well, of course my condition will "progress".

At one time, I was on 8 or 9 prescription drugs. The only medication I currently take is guaifenisen in the morning and I keep dayquil in my desk at work. The rest is all dietary changes, supplements, herbs and lifestyle changes. I am well enough to work a full time job. The hole in my left lung has closed. My fingernails are stronger and nicer than they have ever been before in my life. I always had really crappy fingernails until roughly last November. As people here undoubtedly know, fingertip health is directly related to lung health (clubbing, cianosis, etc). So I know from that (and other things) that my lungs work better than they ever have, even though I haven't seen a doctor recently to do PFT's.

Sea salt has done a lot for my ability to tolerate hot weather. It has also helped my lung function and gut function.

I also work hard on my ph balance and that helped me get off all kinds of anti-inflammatory drugs. If you have gout, doctors know that your problem with inflammation is caused by excess acidity and they may even tell you to not eat certain foods which make it worse. But if you have CF, even though it's common knowledge that pwcf are way too acid, they seem to not realize it works the same way: the acidity is the root cause of inflammation and if you address that, you don't need so many anti-inflammatory drugs and you are less vulnerable to infection.

It just so happens that the modern American diet is generally inflammatory and this fact is most likely at least partly to blame for the rise in diabetes and certain other ailments. So if someone has cf and they eat a typical american diet....




Peace and good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>
<br />I'm not too sure what to think. I did tell my CF doctor about the blood episode, and again he wasn't really concerned. <b> He still feels it's my CF advancing...</b>
<br />
<br />
<br />Any thoughts??? Any new things to try???
<br />
<br />
<br />
<br />I only do Albuterol, Hypertonic Saline, and Pulmozyme. That's it! Thank you!</end quote>
<br />
<br />Right after I was diagnosed, my doctor told me "People like you don't get well. Symptom management is the name of the game." My reply to that was "It may be true that I will spend the rest of my life fighting off the next infection but this particular infection has to GO because it's killing me." He physically took a step backwards and looked like I had slapped him in the face. It ticks me off to no end that doctor's make no real effort to get people with CF well and then chalk it up to their genes. To me such statements sound like self-fulfilling prophesy: If you make no effort to get me well, of course my condition will "progress".
<br />
<br />At one time, I was on 8 or 9 prescription drugs. The only medication I currently take is guaifenisen in the morning and I keep dayquil in my desk at work. The rest is all dietary changes, supplements, herbs and lifestyle changes. I am well enough to work a full time job. The hole in my left lung has closed. My fingernails are stronger and nicer than they have ever been before in my life. I always had really crappy fingernails until roughly last November. As people here undoubtedly know, fingertip health is directly related to lung health (clubbing, cianosis, etc). So I know from that (and other things) that my lungs work better than they ever have, even though I haven't seen a doctor recently to do PFT's.
<br />
<br />Sea salt has done a lot for my ability to tolerate hot weather. It has also helped my lung function and gut function.
<br />
<br />I also work hard on my ph balance and that helped me get off all kinds of anti-inflammatory drugs. If you have gout, doctors know that your problem with inflammation is caused by excess acidity and they may even tell you to not eat certain foods which make it worse. But if you have CF, even though it's common knowledge that pwcf are way too acid, they seem to not realize it works the same way: the acidity is the root cause of inflammation and if you address that, you don't need so many anti-inflammatory drugs and you are less vulnerable to infection.
<br />
<br />It just so happens that the modern American diet is generally inflammatory and this fact is most likely at least partly to blame for the rise in diabetes and certain other ailments. So if someone has cf and they eat a typical american diet....
<br />
<br />
<br />
<br />
<br />Peace and good luck with this.
 
F

fondreflections

New member
Thank you, Everyone, for your advice.

My CF doctor has suggested Doxy with Prednisone for 2 weeks to try and get me over the hump.

I've noticed that on the days that I'm working out, my lungs seem to feel better for the remainder of the day. On my off days, my lungs are pretty crappy come nightfall.

Still I'm not so sure how much of this is summer-related. I think I'll do the 2 weeks of meds then wait until fall. Hopefully, I will bounce back like usual. Each summer just seems to get worse...

Someone asked me where I live...I live in PA. I only feel crappy June, July, and August so 3 months out of 12 isn't too bad.

Also, I have been eating a little less healthy lately. I should also be drinking far more water. Michele, thank you for your information. I actually googled acidic foods and need to make some changes...I really need to start adding more alkaline foods into my diet. I use to be pretty good, but for the past 2 months, I have been on 'vacation'...I just get tired of it all...

My last sputum culture was in June 2008 and showed PA and MRSA like always.

So basically, I'll do the 2 weeks of meds and continue with my exercising. I won't be jumping into anything until late September, if needed. Hopefully, this will resolve itself. Meanwhile, back to a better diet!

<b>Edited to Add: According to my doctor, my FEV1 dropped to 48% 2 summers ago. By the following winter, it was back up to 70%!!! So that kind of puts the ball in my court, as far as I'm concerned. I made sure to point that out to him too. He still has his doubts but whatever. It's not like it's the first time. Some just can't handle the heat and humidity...</b>

<b>Does anyone know if MRSA is aggrevated by humidity??? It seems that since I got MRSA 5 years ago that summers are harder. I still only require IVs maybe every 1.5 - 2 years, but I seem worse with humidity. I cough up twice as much each morning.</b>
 
F

fondreflections

New member
Thank you, Everyone, for your advice.

My CF doctor has suggested Doxy with Prednisone for 2 weeks to try and get me over the hump.

I've noticed that on the days that I'm working out, my lungs seem to feel better for the remainder of the day. On my off days, my lungs are pretty crappy come nightfall.

Still I'm not so sure how much of this is summer-related. I think I'll do the 2 weeks of meds then wait until fall. Hopefully, I will bounce back like usual. Each summer just seems to get worse...

Someone asked me where I live...I live in PA. I only feel crappy June, July, and August so 3 months out of 12 isn't too bad.

Also, I have been eating a little less healthy lately. I should also be drinking far more water. Michele, thank you for your information. I actually googled acidic foods and need to make some changes...I really need to start adding more alkaline foods into my diet. I use to be pretty good, but for the past 2 months, I have been on 'vacation'...I just get tired of it all...

My last sputum culture was in June 2008 and showed PA and MRSA like always.

So basically, I'll do the 2 weeks of meds and continue with my exercising. I won't be jumping into anything until late September, if needed. Hopefully, this will resolve itself. Meanwhile, back to a better diet!

<b>Edited to Add: According to my doctor, my FEV1 dropped to 48% 2 summers ago. By the following winter, it was back up to 70%!!! So that kind of puts the ball in my court, as far as I'm concerned. I made sure to point that out to him too. He still has his doubts but whatever. It's not like it's the first time. Some just can't handle the heat and humidity...</b>

<b>Does anyone know if MRSA is aggrevated by humidity??? It seems that since I got MRSA 5 years ago that summers are harder. I still only require IVs maybe every 1.5 - 2 years, but I seem worse with humidity. I cough up twice as much each morning.</b>
 
F

fondreflections

New member
Thank you, Everyone, for your advice.

My CF doctor has suggested Doxy with Prednisone for 2 weeks to try and get me over the hump.

I've noticed that on the days that I'm working out, my lungs seem to feel better for the remainder of the day. On my off days, my lungs are pretty crappy come nightfall.

Still I'm not so sure how much of this is summer-related. I think I'll do the 2 weeks of meds then wait until fall. Hopefully, I will bounce back like usual. Each summer just seems to get worse...

Someone asked me where I live...I live in PA. I only feel crappy June, July, and August so 3 months out of 12 isn't too bad.

Also, I have been eating a little less healthy lately. I should also be drinking far more water. Michele, thank you for your information. I actually googled acidic foods and need to make some changes...I really need to start adding more alkaline foods into my diet. I use to be pretty good, but for the past 2 months, I have been on 'vacation'...I just get tired of it all...

My last sputum culture was in June 2008 and showed PA and MRSA like always.

So basically, I'll do the 2 weeks of meds and continue with my exercising. I won't be jumping into anything until late September, if needed. Hopefully, this will resolve itself. Meanwhile, back to a better diet!

<b>Edited to Add: According to my doctor, my FEV1 dropped to 48% 2 summers ago. By the following winter, it was back up to 70%!!! So that kind of puts the ball in my court, as far as I'm concerned. I made sure to point that out to him too. He still has his doubts but whatever. It's not like it's the first time. Some just can't handle the heat and humidity...</b>

<b>Does anyone know if MRSA is aggrevated by humidity??? It seems that since I got MRSA 5 years ago that summers are harder. I still only require IVs maybe every 1.5 - 2 years, but I seem worse with humidity. I cough up twice as much each morning.</b>
 
F

fondreflections

New member
Thank you, Everyone, for your advice.

My CF doctor has suggested Doxy with Prednisone for 2 weeks to try and get me over the hump.

I've noticed that on the days that I'm working out, my lungs seem to feel better for the remainder of the day. On my off days, my lungs are pretty crappy come nightfall.

Still I'm not so sure how much of this is summer-related. I think I'll do the 2 weeks of meds then wait until fall. Hopefully, I will bounce back like usual. Each summer just seems to get worse...

Someone asked me where I live...I live in PA. I only feel crappy June, July, and August so 3 months out of 12 isn't too bad.

Also, I have been eating a little less healthy lately. I should also be drinking far more water. Michele, thank you for your information. I actually googled acidic foods and need to make some changes...I really need to start adding more alkaline foods into my diet. I use to be pretty good, but for the past 2 months, I have been on 'vacation'...I just get tired of it all...

My last sputum culture was in June 2008 and showed PA and MRSA like always.

So basically, I'll do the 2 weeks of meds and continue with my exercising. I won't be jumping into anything until late September, if needed. Hopefully, this will resolve itself. Meanwhile, back to a better diet!

<b>Edited to Add: According to my doctor, my FEV1 dropped to 48% 2 summers ago. By the following winter, it was back up to 70%!!! So that kind of puts the ball in my court, as far as I'm concerned. I made sure to point that out to him too. He still has his doubts but whatever. It's not like it's the first time. Some just can't handle the heat and humidity...</b>

<b>Does anyone know if MRSA is aggrevated by humidity??? It seems that since I got MRSA 5 years ago that summers are harder. I still only require IVs maybe every 1.5 - 2 years, but I seem worse with humidity. I cough up twice as much each morning.</b>
 
F

fondreflections

New member
Thank you, Everyone, for your advice.
<br />
<br />My CF doctor has suggested Doxy with Prednisone for 2 weeks to try and get me over the hump.
<br />
<br />I've noticed that on the days that I'm working out, my lungs seem to feel better for the remainder of the day. On my off days, my lungs are pretty crappy come nightfall.
<br />
<br />Still I'm not so sure how much of this is summer-related. I think I'll do the 2 weeks of meds then wait until fall. Hopefully, I will bounce back like usual. Each summer just seems to get worse...
<br />
<br />Someone asked me where I live...I live in PA. I only feel crappy June, July, and August so 3 months out of 12 isn't too bad.
<br />
<br />Also, I have been eating a little less healthy lately. I should also be drinking far more water. Michele, thank you for your information. I actually googled acidic foods and need to make some changes...I really need to start adding more alkaline foods into my diet. I use to be pretty good, but for the past 2 months, I have been on 'vacation'...I just get tired of it all...
<br />
<br />My last sputum culture was in June 2008 and showed PA and MRSA like always.
<br />
<br />So basically, I'll do the 2 weeks of meds and continue with my exercising. I won't be jumping into anything until late September, if needed. Hopefully, this will resolve itself. Meanwhile, back to a better diet!
<br />
<br /><b>Edited to Add: According to my doctor, my FEV1 dropped to 48% 2 summers ago. By the following winter, it was back up to 70%!!! So that kind of puts the ball in my court, as far as I'm concerned. I made sure to point that out to him too. He still has his doubts but whatever. It's not like it's the first time. Some just can't handle the heat and humidity...</b>
<br />
<br /><b>Does anyone know if MRSA is aggrevated by humidity??? It seems that since I got MRSA 5 years ago that summers are harder. I still only require IVs maybe every 1.5 - 2 years, but I seem worse with humidity. I cough up twice as much each morning.</b>
 
You must log in or register to reply here.
Top