Do you regularly use any of these "Asthma" meds?

Giggles

New member
Some people can have CF but only have digestive issues. I know someone, and adult CF'r that has CF but only has digestive involvement, nothing with their lungs.
<br />
<br />
<br />I use to take Pulmicort but no longer.
<br />
<br />Jennifer 38 with CF and CFRD
 

cmorgan

New member
Well. I currently use Albuterol Inhalation solution, Hypertonic Saline, 2 puffs (am + pm) of Fluticasone (Anti-Inflammatory drug in Advair). I also use the flutter device here and there, along with a daily 15min jog until my knee started acting up. And..the theory proposed was correct. I had primarily digestive issues until I was hospitalized with bilateral pneumonia at the end of 2006. Now, it seems like the lungs are "awake" and exhibiting cf symptoms. I don't know if this might explain the delay..but ethnically, I am somewhat unique. I have two black parents, yet one looks like a native american and the other looks like John Goodman and had blonde hair and blue eyes upon birth. He also has no outward africoid phenotypes and is always perceived as caucasian. My mother also has a hefty infusion of caucasoid and,excuse the term: mongloid blood. So, that's my mixture..and from what I hear, I have a version of cf that is typically found in caucasians. Apparently there is one that is typical to African Americans, but I don't have it. Maybe you guys know more about all that. Anyhow..the cf community has always been amazed by my situation. I smoked for years, partied,etc...did MORE than folk with or without CF should do. I had 30% lung function entering the hospital..10 days later..98%. However, I think my karma and luck with cf has finally subsided. Sorry for length.

-Bink
 

cmorgan

New member
Well. I currently use Albuterol Inhalation solution, Hypertonic Saline, 2 puffs (am + pm) of Fluticasone (Anti-Inflammatory drug in Advair). I also use the flutter device here and there, along with a daily 15min jog until my knee started acting up. And..the theory proposed was correct. I had primarily digestive issues until I was hospitalized with bilateral pneumonia at the end of 2006. Now, it seems like the lungs are "awake" and exhibiting cf symptoms. I don't know if this might explain the delay..but ethnically, I am somewhat unique. I have two black parents, yet one looks like a native american and the other looks like John Goodman and had blonde hair and blue eyes upon birth. He also has no outward africoid phenotypes and is always perceived as caucasian. My mother also has a hefty infusion of caucasoid and,excuse the term: mongloid blood. So, that's my mixture..and from what I hear, I have a version of cf that is typically found in caucasians. Apparently there is one that is typical to African Americans, but I don't have it. Maybe you guys know more about all that. Anyhow..the cf community has always been amazed by my situation. I smoked for years, partied,etc...did MORE than folk with or without CF should do. I had 30% lung function entering the hospital..10 days later..98%. However, I think my karma and luck with cf has finally subsided. Sorry for length.

-Bink
 

cmorgan

New member
Well. I currently use Albuterol Inhalation solution, Hypertonic Saline, 2 puffs (am + pm) of Fluticasone (Anti-Inflammatory drug in Advair). I also use the flutter device here and there, along with a daily 15min jog until my knee started acting up. And..the theory proposed was correct. I had primarily digestive issues until I was hospitalized with bilateral pneumonia at the end of 2006. Now, it seems like the lungs are "awake" and exhibiting cf symptoms. I don't know if this might explain the delay..but ethnically, I am somewhat unique. I have two black parents, yet one looks like a native american and the other looks like John Goodman and had blonde hair and blue eyes upon birth. He also has no outward africoid phenotypes and is always perceived as caucasian. My mother also has a hefty infusion of caucasoid and,excuse the term: mongloid blood. So, that's my mixture..and from what I hear, I have a version of cf that is typically found in caucasians. Apparently there is one that is typical to African Americans, but I don't have it. Maybe you guys know more about all that. Anyhow..the cf community has always been amazed by my situation. I smoked for years, partied,etc...did MORE than folk with or without CF should do. I had 30% lung function entering the hospital..10 days later..98%. However, I think my karma and luck with cf has finally subsided. Sorry for length.
<br />
<br />-Bink
 

Marjolein

New member
Post tx
I used Spiriva for a little while. But didn't think that worked well enough. It should have worked for 24 hours but I feld like I needed another dose about 12 hours later. So I went back to Serevent twice a day.

I am now on Combivent nebs. Serevent and Alvesco puffs and have Salbutamol puff always in my bag incase I need it while away. At home I try to always do another neb when I feel I need something, as that seems to help best.

Pre tx I only used Serevent
 

Marjolein

New member
Post tx
I used Spiriva for a little while. But didn't think that worked well enough. It should have worked for 24 hours but I feld like I needed another dose about 12 hours later. So I went back to Serevent twice a day.

I am now on Combivent nebs. Serevent and Alvesco puffs and have Salbutamol puff always in my bag incase I need it while away. At home I try to always do another neb when I feel I need something, as that seems to help best.

Pre tx I only used Serevent
 

Marjolein

New member
Post tx
<br />I used Spiriva for a little while. But didn't think that worked well enough. It should have worked for 24 hours but I feld like I needed another dose about 12 hours later. So I went back to Serevent twice a day.
<br />
<br />I am now on Combivent nebs. Serevent and Alvesco puffs and have Salbutamol puff always in my bag incase I need it while away. At home I try to always do another neb when I feel I need something, as that seems to help best.
<br />
<br />Pre tx I only used Serevent
 

MaksNana

New member
Hi Bink,
Thanks for answering some of my questions. I'm always serching/reserching, wondering why some people have hardly any symptoms and some like my little one, has been in the hospital so many times in the last few months, you stop counting.And she's on soooooooo many daily treatments. Right now she's telling me her chest is hurting and her arms,and legs, so she's fixing to have to take f_____ing, codeine for pain.That's only when we can't get her pain under control with motrin.
They think she just doesn't have enough muscle mass and it doesn't take much at all for her to hurt.She is really little for her age. She is strong willed and will over exert herself and she tolerates pain until it gets so bad it get's out of control sometimes , and she has to take the strong stuff to help.
The last few hospital trips they had her on Morphine!I was scared to death, but, they watched her really close.

I always wonder if some where else a CF Clinic is doing things differently,of course they do, but I always want to know what, and where in the World, how doctors treat patients. She's even had weird pancreatitis and she is PI.

What kind of stomach issues did you have?

I do not think being African American, white, blue , whatever has anything to do with CF, either you have it or you don't, right. If you have the CF genes it doesn't matter the color of your skin. There's so much controvercy over genes. Myself, believe genes do play a role in this disease. Many believe it does not,and that's okay, it's good to see all the opinions.Thats how we can learn.

This is such a complex disease, and I want to learn all that I can. You said, the CF community has always been amazed by your situation. But, really ,each situation is pretty amazing, it sucks, you can do everything they say to do and have the same genes as someone else, but, different outcomes. The genes though can give knowledge of a lot of things, in my opinion. I'v spent probly the past 5 yrs reserching the genes and the pattern of them. I admire the doctors and Scientist that specialize in the study of the genes.

So, if you don't mind I would love to learn more about your CF.Would you share your CF mutations , and would you share what they are and more about your CF symtoms ?<img src="i/expressions/rose.gif" border="0">

Thank you for sharing with us,,,, and I'm sorry you are having lung issues, but, hope you are doing okay.

Bless You, and hope good health continues,,karla<img src="i/expressions/heart.gif" border="0">
 

MaksNana

New member
Hi Bink,
Thanks for answering some of my questions. I'm always serching/reserching, wondering why some people have hardly any symptoms and some like my little one, has been in the hospital so many times in the last few months, you stop counting.And she's on soooooooo many daily treatments. Right now she's telling me her chest is hurting and her arms,and legs, so she's fixing to have to take f_____ing, codeine for pain.That's only when we can't get her pain under control with motrin.
They think she just doesn't have enough muscle mass and it doesn't take much at all for her to hurt.She is really little for her age. She is strong willed and will over exert herself and she tolerates pain until it gets so bad it get's out of control sometimes , and she has to take the strong stuff to help.
The last few hospital trips they had her on Morphine!I was scared to death, but, they watched her really close.

I always wonder if some where else a CF Clinic is doing things differently,of course they do, but I always want to know what, and where in the World, how doctors treat patients. She's even had weird pancreatitis and she is PI.

What kind of stomach issues did you have?

I do not think being African American, white, blue , whatever has anything to do with CF, either you have it or you don't, right. If you have the CF genes it doesn't matter the color of your skin. There's so much controvercy over genes. Myself, believe genes do play a role in this disease. Many believe it does not,and that's okay, it's good to see all the opinions.Thats how we can learn.

This is such a complex disease, and I want to learn all that I can. You said, the CF community has always been amazed by your situation. But, really ,each situation is pretty amazing, it sucks, you can do everything they say to do and have the same genes as someone else, but, different outcomes. The genes though can give knowledge of a lot of things, in my opinion. I'v spent probly the past 5 yrs reserching the genes and the pattern of them. I admire the doctors and Scientist that specialize in the study of the genes.

So, if you don't mind I would love to learn more about your CF.Would you share your CF mutations , and would you share what they are and more about your CF symtoms ?<img src="i/expressions/rose.gif" border="0">

Thank you for sharing with us,,,, and I'm sorry you are having lung issues, but, hope you are doing okay.

Bless You, and hope good health continues,,karla<img src="i/expressions/heart.gif" border="0">
 

MaksNana

New member
Hi Bink,
<br />Thanks for answering some of my questions. I'm always serching/reserching, wondering why some people have hardly any symptoms and some like my little one, has been in the hospital so many times in the last few months, you stop counting.And she's on soooooooo many daily treatments. Right now she's telling me her chest is hurting and her arms,and legs, so she's fixing to have to take f_____ing, codeine for pain.That's only when we can't get her pain under control with motrin.
<br /> They think she just doesn't have enough muscle mass and it doesn't take much at all for her to hurt.She is really little for her age. She is strong willed and will over exert herself and she tolerates pain until it gets so bad it get's out of control sometimes , and she has to take the strong stuff to help.
<br />The last few hospital trips they had her on Morphine!I was scared to death, but, they watched her really close.
<br />
<br />I always wonder if some where else a CF Clinic is doing things differently,of course they do, but I always want to know what, and where in the World, how doctors treat patients. She's even had weird pancreatitis and she is PI.
<br />
<br />What kind of stomach issues did you have?
<br />
<br />I do not think being African American, white, blue , whatever has anything to do with CF, either you have it or you don't, right. If you have the CF genes it doesn't matter the color of your skin. There's so much controvercy over genes. Myself, believe genes do play a role in this disease. Many believe it does not,and that's okay, it's good to see all the opinions.Thats how we can learn.
<br />
<br />This is such a complex disease, and I want to learn all that I can. You said, the CF community has always been amazed by your situation. But, really ,each situation is pretty amazing, it sucks, you can do everything they say to do and have the same genes as someone else, but, different outcomes. The genes though can give knowledge of a lot of things, in my opinion. I'v spent probly the past 5 yrs reserching the genes and the pattern of them. I admire the doctors and Scientist that specialize in the study of the genes.
<br />
<br />So, if you don't mind I would love to learn more about your CF.Would you share your CF mutations , and would you share what they are and more about your CF symtoms ?<img src="i/expressions/rose.gif" border="0">
<br />
<br /> Thank you for sharing with us,,,, and I'm sorry you are having lung issues, but, hope you are doing okay.
<br />
<br />Bless You, and hope good health continues,,karla<img src="i/expressions/heart.gif" border="0">
 

cmorgan

New member
Do you regularly use any of these

As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however Delta 5 "something" sounds familiar. Other than that, Lung symptoms are typical: tons of mucus being coughed up, especially if I don't keep up with my usual regimen. Low grade fevers after said expectoration are common.
 

cmorgan

New member
Do you regularly use any of these

As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however Delta 5 "something" sounds familiar. Other than that, Lung symptoms are typical: tons of mucus being coughed up, especially if I don't keep up with my usual regimen. Low grade fevers after said expectoration are common.
 

cmorgan

New member
Do you regularly use any of these

As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however Delta 5 "something" sounds familiar. Other than that, Lung symptoms are typical: tons of mucus being coughed up, especially if I don't keep up with my usual regimen. Low grade fevers after said expectoration are common.
 

BaylorCrew07

New member
Do you regularly use any of these

i use advair 2x/day also... i have for as long as i can remember, but i also have an asthma compenant to my CF. i ran out of advair and did not refill for a few months and had a lot of issues...docs got me back on it asap.
 

BaylorCrew07

New member
Do you regularly use any of these

i use advair 2x/day also... i have for as long as i can remember, but i also have an asthma compenant to my CF. i ran out of advair and did not refill for a few months and had a lot of issues...docs got me back on it asap.
 

BaylorCrew07

New member
Do you regularly use any of these

i use advair 2x/day also... i have for as long as i can remember, but i also have an asthma compenant to my CF. i ran out of advair and did not refill for a few months and had a lot of issues...docs got me back on it asap.
 

crickit715

New member
Do you regularly use any of these

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cmorgan</b></i>

As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however Delta 5 "something" sounds familiar. Other than that, Lung symptoms are typical: tons of mucus being coughed up, especially if I don't keep up with my usual regimen. Low grade fevers after said expectoration are common.</end quote></div>

you would actually have 2 mutations..one from each parent...could they possibly be both Delta f508? does that sound like it??
 

crickit715

New member
Do you regularly use any of these

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cmorgan</b></i>

As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however Delta 5 "something" sounds familiar. Other than that, Lung symptoms are typical: tons of mucus being coughed up, especially if I don't keep up with my usual regimen. Low grade fevers after said expectoration are common.</end quote>

you would actually have 2 mutations..one from each parent...could they possibly be both Delta f508? does that sound like it??
 

crickit715

New member
Do you regularly use any of these

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cmorgan</b></i>
<br />
<br />As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however Delta 5 "something" sounds familiar. Other than that, Lung symptoms are typical: tons of mucus being coughed up, especially if I don't keep up with my usual regimen. Low grade fevers after said expectoration are common.</end quote>
<br />
<br />you would actually have 2 mutations..one from each parent...could they possibly be both Delta f508? does that sound like it??
 

crickit715

New member
Do you regularly use any of these

quoting from above: ((I do not think being African American, white, blue , whatever has anything to do with CF, either you have it or you don't, right))

FYI: actually some mutations are specific to certain nationalites. when they performed my daughters dna test they did specific testing for mutations known to populate the hispanic/latino cf individuals because her father is from central america. there are specific mutations they check for in the african american population as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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