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girl 14 needs answers!
- Thread starter vikki14
- Start date
evilkitty13
New member
CF is a rare diease that effects the lungs, stomache, and nose.
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
evilkitty13
New member
CF is a rare diease that effects the lungs, stomache, and nose.
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
evilkitty13
New member
CF is a rare diease that effects the lungs, stomache, and nose.
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
evilkitty13
New member
CF is a rare diease that effects the lungs, stomache, and nose.
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
evilkitty13
New member
CF is a rare diease that effects the lungs, stomache, and nose.
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
CF is life changing, we have take many medications and treatments. You also have to explain what CF is to everyone
CF does effect me, but i try not to let it. I dream big. Many kids ask what i take medicine for, why i cough so much.
i explained it to them. but they dont really get it. They dont understand how it changes my life
my friends, teachers TRY to treat me diffrent, but i dont let them. I tell them i dont like being treated diffrent from everyone else
No they cant live a normal life, but we do try to succed as much as we can
medicine!!!!
its varys from perosn but this is mine
~5 pill before EVERY snack and meal
~stomache pill, twice a day
~adex
~AVI Vest
~ 3 treatments in a nebulizer
~ inhalers
~a little white pill
~ nose spray
~adex
there more but thats all i can name
as being healthy i dont take to much time off of school
my future is diffrent from most. I plan to go to college and live in Japan. In japan there is only about 900 cases since 1980
none of my family has CF
im glad your doing research on this!
Emily65Roses
New member
<b>1. do you know what cystic fibrosis is?</b> Yes, I do. Would you like me to explain it in my own words, or will you take me at my word that I know what it is? In short, it's a genetic disease that affects the salt transfer between cells.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
Emily65Roses
New member
<b>1. do you know what cystic fibrosis is?</b> Yes, I do. Would you like me to explain it in my own words, or will you take me at my word that I know what it is? In short, it's a genetic disease that affects the salt transfer between cells.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
Emily65Roses
New member
<b>1. do you know what cystic fibrosis is?</b> Yes, I do. Would you like me to explain it in my own words, or will you take me at my word that I know what it is? In short, it's a genetic disease that affects the salt transfer between cells.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
Emily65Roses
New member
<b>1. do you know what cystic fibrosis is?</b> Yes, I do. Would you like me to explain it in my own words, or will you take me at my word that I know what it is? In short, it's a genetic disease that affects the salt transfer between cells.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
Emily65Roses
New member
<b>1. do you know what cystic fibrosis is?</b> Yes, I do. Would you like me to explain it in my own words, or will you take me at my word that I know what it is? In short, it's a genetic disease that affects the salt transfer between cells.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
<b>2. what are the affects of CF?</b> There are many. The primary ones are the respiratory system, the digestive system, and the reproductive system. The lungs are clogged with thick mucus and are prone to infection. The digestive enzymes don't work, don't exist, or are blocked, and therefore lots of digestive problems exist. 98% of CF men, while they have sperm, are considered infertile because they can only have natural children if their sperm is extracted with scientific procedures. At the same time, it's hard for CF women to get pregnant because of the thick mucus in their reproductive system, and many women who <i>can</i> get pregnant have a hard time with the pregnancy. It's hard enough on a healthy woman's body, so a CF body can really struggle with pregnancy. We also get prone to things like: diabetes, osteoporosis, arthritis, osteoarthritis, depression, sinus problems, liver problems, and many more.
<b>3. how does CF affect your everyday life?</b> In almost any way you could imagine. Meds and therapy take hours a day. I go to the gym 2 or 3 times a week. Walking to class on campus, stairs always slow me down. As do other students who are smoking (I <u>hate</u> that). Laughing is a bit of a chore, and gets me coughing pretty hard usually. I spend longer in the bathroom than do most people. I currently have a cold, and that's a pain because I can't take any of the cold meds that most people take (Nyquil, Dayquil), because they have cough suppressants in them. So I just have to suffer through it, and it's tougher for me anyways because of the CF. I'm sure there's more, but that's all I can come up with this instant.
<b>4. do your friends understand how your illness affects you?</b> The people I actually consider my friends do, yes. My classmates and acquaintances do not. My friends understand how serious it is, how much it gets in the way. But the person who understands it best (besides my CF friends online, of course), is my fiance. He's with me every day and goes to my appointments, he does my chest therapy, he helps me with meds. He's about as understanding of CF as a person who does not have it <i>can</i> be.
<b>5. do you get treated differently because of your illness?</b> Overall, I'd say no. People who know me don't treat me any differently. Really, the only people that do are strangers that hear or see me coughing. They treat me like I'm contagious and I'm going to poison the world and I'm disgusting for going out while I'm sick, and risking infecting all these other people. Even that's pretty rare. Most people ignore it, or ask me if I'm okay. Some will offer water, stuff like that. But I do get the occasional rude comment, or ugly stare.
<b>6. Can a person with Cf lead a normal life?</b> This is a difficult one to answer because "normal" is a really relative term. What is normal to me may not be normal to you, or vice versa. I would say though, overall, no. You can still lead a life. You can go to school and get a job, and get married and have kids... but it doesn't take away the fact that you do meds and therapies for hours a day and will still not likely live to a "ripe old age."
<b>7. How much medication do you take and how often?</b> Okay let's see. I take 350 mg. of Wellbutrin (anti-depressant) every morning. I take 40 mg. of Nexium (med to control acid reflux) every morning. Every night I take an over the counter Melatonin to help me sleep. I also take ABDEKs (a special CF vitamin) every night. In my morning routine, I have a nebulized med to do. I alternate from one month to the next, but during January, March, May, July, September, November I do hypertonic saline (a neb to help clear the lungs), and in February, April, June, August, October, and December, I do Colistin (a neb antibiotic). My night routine is as follows: I start with a squirt of Nasacort in each nostrol to control nasal polyps. I then go to two puffs of Albuterol (inhaler). Then I move on to my neb Pulmozyme (mucus thinner), and then I go to my neb hypertonic saline or Colistin depending on the month (see the list above). Then my fiance hits my back for half an hour every night to help clear my lungs. Finally, I take 5 Ultrase MT 20s (enzymes) with meals, and 2 or 3 with snacks. And that's it, unless I'm also on antibiotics or something. Then several meds get added.
<b>8. do you have much time of school/work because off your illness?</b> I did more so in high school when it didn't matter as much. Now, in college, I don't really have that option. If I skip a class or my internship, I get really screwed. So I only miss if it's absolutely necessary. Generally, that's a max of twice a semester. So basically... I go to school even when I feel lousy.
<b>9. what does the future hold for a person with CF?</b> Depends on who you're talking about. Current adults don't have as much of a chance as kids born with CF more recently. They have more meds from day one. I didn't start nebs until I was 9 years old, so I had 9 years of irreversible damage done. But more meds, more therapies, additional visits and tests and stuff as time goes on. More therapy time added, more meds added. Then eventually, you are forced to make a decision whether or not to get a double-lung transplant. If you do, you may live. If not, you will die -- it's just a matter of time. And that's really it for choices.
<b>10. do any of yor other family members have CF?</b> In short, no. My mom is one of 6 kids. I have more than 12 cousins (many of whom already have kids of their own). I am the first and still the only one with CF in my whole family. I have a sister, and she doesn't even carry the CF gene.
xLifesEscapex
New member
1. do you know what cystic fibrosis is?
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
xLifesEscapex
New member
1. do you know what cystic fibrosis is?
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
xLifesEscapex
New member
1. do you know what cystic fibrosis is?
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
xLifesEscapex
New member
1. do you know what cystic fibrosis is?
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
xLifesEscapex
New member
1. do you know what cystic fibrosis is?
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.
yes, its a disease that affects your lungs and digestive system.
2. what are the affects of CF?
it makes it really hard to breath and it makes you have a lot of stomach aces
3. how does CF affect your everyday life?
its hard because i cant normally breath and i have to do breathing treatments a lot....when i do things i get more tired then people without CF.
4. do your friends understand how your illness affects you?
yup. they understand everything.
5. do you get treated differently because of your illness?
not really. exept adults watch over me a little more then other kids.
6. Can a person with Cf lead a normal life?
it depends on how bad their CF is.
7. How much medication do you take and how often?
i take 13 medicines everyday.
8. do you have much time of school/work because off your illness?
im not going to school right now and i get tutors at home...i normally miss more then half the school year every year
9. what does the future hold for a person with CF?
it depends on how bad the cf is....if it isnt that bad then im sure they could have a normal life....but if its bad like me then life is going to be really difficult.
10. do any of yor other family members have CF?
nope.