Hello everyone! as you might have seen I am a new member! I am trying to write a paper on cystic Fibrosis. Part of my paper includes other peoples point of views! If you have chosen to answer me you can keep it anonymous if you feel more comfortable that way! Here are some questions that i have put together.... <OL></OL>1 how old were you whne you were first diagnost with cf? 2 how has treatment changed since then 3 what are the symptoms 4 do you see a cure in the future 5 what have your experiences been like 6 Any other information that you can give will be greatly appreciatedThank you
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I am trying to write a paper........would really appreciate any info
- Thread starter bubbaf429
- Start date
Hello everyone! as you might have seen I am a new member! I am trying to write a paper on cystic Fibrosis. Part of my paper includes other peoples point of views! If you have chosen to answer me you can keep it anonymous if you feel more comfortable that way! Here are some questions that i have put together.... <OL></OL>1 how old were you whne you were first diagnost with cf? 2 how has treatment changed since then 3 what are the symptoms 4 do you see a cure in the future 5 what have your experiences been like 6 Any other information that you can give will be greatly appreciatedThank you
Emily65Roses
New member
1. They pretty much knew I had CF when I was 2 days old, because I had the blockage called meconium ileus. But this was back in 1984, so they couldn't do a sweat test on me until I was 6 months old. That's when I was diagnosed "for sure."2. Treatment has changed a lot since then. For one, they found the specific gene that caused CF in 1989. I've been on a breathing med called Pulmozyme since I was 9 years old. I have yet to have a transplant, but those are getting much better too. 3. I have gastrointestinal problems. Often diarrhea (especially with greasier foods), and a lot of gas. I have a lot of lung problems too. I have 3 or 4 strains of pseudomonas, and had MRSA when I was 16. I can't run anymore, I can't really climb stairs. I get winded walking to and from class (and I live on campus). I cough a lot. I can't really allow myself to laugh heartily anymore, because it causes me to choke. Etc etc. 4. I'm sure there will be a cure in the future sometime. I don't expect to see it in my own lifetime, though. 5. This question needs to be more specific. Surgeries, hospitalizations, school, jobs, what? If you make this question more specific, I'll answer it at a later time. I don't care if you use my name. It doesn't matter to me. And if you like, you can IM or email me. IM is Emily65Roses. And my email is Emily65Roses@yahoo.com
Emily65Roses
New member
1. They pretty much knew I had CF when I was 2 days old, because I had the blockage called meconium ileus. But this was back in 1984, so they couldn't do a sweat test on me until I was 6 months old. That's when I was diagnosed "for sure."2. Treatment has changed a lot since then. For one, they found the specific gene that caused CF in 1989. I've been on a breathing med called Pulmozyme since I was 9 years old. I have yet to have a transplant, but those are getting much better too. 3. I have gastrointestinal problems. Often diarrhea (especially with greasier foods), and a lot of gas. I have a lot of lung problems too. I have 3 or 4 strains of pseudomonas, and had MRSA when I was 16. I can't run anymore, I can't really climb stairs. I get winded walking to and from class (and I live on campus). I cough a lot. I can't really allow myself to laugh heartily anymore, because it causes me to choke. Etc etc. 4. I'm sure there will be a cure in the future sometime. I don't expect to see it in my own lifetime, though. 5. This question needs to be more specific. Surgeries, hospitalizations, school, jobs, what? If you make this question more specific, I'll answer it at a later time. I don't care if you use my name. It doesn't matter to me. And if you like, you can IM or email me. IM is Emily65Roses. And my email is Emily65Roses@yahoo.com
HollyCatheryn
New member
1 - I was 7 months old and a sweat test was done that confirmed CF rather than the nebulous "failure to thrive"2 - I remember before percussors and the Vest when my parents had to do manual CPT (chest percussion therapy) on me. It took about an hour and was mildly effective. The percussors they used in the hospital when they came out shortened the time and made treatments more effeicient because the tech's hands and arms didn't wear out as fast. But, the vest has been awesome because I was able to get one for home and it shortened the therapy time even further to 30 mintues and I get quite a bit of junk up and moving from my lungs. The new enzymes are more powerful so now I am only taking 3 with meals (ultrase MT20) even though I was taking 12 with meals when I was 13 or so. 3 - I had originally just digestive issues - inability to gain weight, stomach upset, diarrhea, gas. Then came sinus infections and polyps and the surgeries to allieviate pain and prevent the spread of infection to my lungs. Most recently I have developed some bronchiectysis (sp?) which is dialation of the airways preventing the efficient moving of mucus and making the lungs more sucseptible to infection - it is permanent damage. I also had a difficult time getting pregnant because of irregular cycles and thick cervical mucus.4 - amazing things are always happening in science and I hope for a cure, but I am not counting on it for myself.5 - the teen years (partially because of hormone/puberty related stress) were particularly difficult health-wise. Exercise always improves my health and emotional outlook. I was never able to complete college because of the stress on my body, but I am considering going back and trying again when my husband finishes his degree. Most people don't know what CF is right off the bat, but are open to hearing about it and are mostly positive and receptive to me. Working in restaurants was a poor job-choice on my part because of all the coughing, but I liked the free food and I kept weight on.
HollyCatheryn
New member
1 - I was 7 months old and a sweat test was done that confirmed CF rather than the nebulous "failure to thrive"2 - I remember before percussors and the Vest when my parents had to do manual CPT (chest percussion therapy) on me. It took about an hour and was mildly effective. The percussors they used in the hospital when they came out shortened the time and made treatments more effeicient because the tech's hands and arms didn't wear out as fast. But, the vest has been awesome because I was able to get one for home and it shortened the therapy time even further to 30 mintues and I get quite a bit of junk up and moving from my lungs. The new enzymes are more powerful so now I am only taking 3 with meals (ultrase MT20) even though I was taking 12 with meals when I was 13 or so. 3 - I had originally just digestive issues - inability to gain weight, stomach upset, diarrhea, gas. Then came sinus infections and polyps and the surgeries to allieviate pain and prevent the spread of infection to my lungs. Most recently I have developed some bronchiectysis (sp?) which is dialation of the airways preventing the efficient moving of mucus and making the lungs more sucseptible to infection - it is permanent damage. I also had a difficult time getting pregnant because of irregular cycles and thick cervical mucus.4 - amazing things are always happening in science and I hope for a cure, but I am not counting on it for myself.5 - the teen years (partially because of hormone/puberty related stress) were particularly difficult health-wise. Exercise always improves my health and emotional outlook. I was never able to complete college because of the stress on my body, but I am considering going back and trying again when my husband finishes his degree. Most people don't know what CF is right off the bat, but are open to hearing about it and are mostly positive and receptive to me. Working in restaurants was a poor job-choice on my part because of all the coughing, but I liked the free food and I kept weight on.
serendipity730
New member
1. I was diagnosed a few days after birth, because I had meconeum illeus (like Emily.)
2. Treatment has changed greatly since then. I remember when pulmozyme first came out when I was around 11, they made it sound like a miracle drug. It was quite disappointing for me. They came out with the Vest when I was 12, and I was one of the first people to get it.
3. I have digestive, lung, and sinus problems. I need IV meds about 3x a year. I have had two bowel blockages, and a few other near bowel blockages. I also had a surgery for hemoptysis (coughing up blood.)
4. I am not sure if I see a cure in the future. I anticipate a great deal of progress, and we have already come a long way. I'm 22 yrs old, and I doubt my parents ever thought I would live to graduate college. There are still a lot of unknown about CF, and for now, I am just hoping for more progress and greater CF awareness.
5. From a mental health perspective, I battled depression toward the end of hs and the beginning of college. During hs, I was on steriods A LOT, which didn't help my mood. There is no worse time to be puffy cheeked than in hs! I was on steriods for ABPA, an allergic reaction to a fungus that grows in the lungs of a lot of CF patients. Thankfully, that is under control now. I am graduate school now, for genetic counseling - a career choice that was very much affected by my CF. It took me a long time to be comfortable about having CF and talking about it. Oh, and I am engaged a wonderful man who isn't a CF carrier<img src="i/expressions/heart.gif" border="0">
If you need anymore info, e mail me at mar_md@yahoo.com
Mary
2. Treatment has changed greatly since then. I remember when pulmozyme first came out when I was around 11, they made it sound like a miracle drug. It was quite disappointing for me. They came out with the Vest when I was 12, and I was one of the first people to get it.
3. I have digestive, lung, and sinus problems. I need IV meds about 3x a year. I have had two bowel blockages, and a few other near bowel blockages. I also had a surgery for hemoptysis (coughing up blood.)
4. I am not sure if I see a cure in the future. I anticipate a great deal of progress, and we have already come a long way. I'm 22 yrs old, and I doubt my parents ever thought I would live to graduate college. There are still a lot of unknown about CF, and for now, I am just hoping for more progress and greater CF awareness.
5. From a mental health perspective, I battled depression toward the end of hs and the beginning of college. During hs, I was on steriods A LOT, which didn't help my mood. There is no worse time to be puffy cheeked than in hs! I was on steriods for ABPA, an allergic reaction to a fungus that grows in the lungs of a lot of CF patients. Thankfully, that is under control now. I am graduate school now, for genetic counseling - a career choice that was very much affected by my CF. It took me a long time to be comfortable about having CF and talking about it. Oh, and I am engaged a wonderful man who isn't a CF carrier<img src="i/expressions/heart.gif" border="0">
If you need anymore info, e mail me at mar_md@yahoo.com
Mary
serendipity730
New member
1. I was diagnosed a few days after birth, because I had meconeum illeus (like Emily.)
2. Treatment has changed greatly since then. I remember when pulmozyme first came out when I was around 11, they made it sound like a miracle drug. It was quite disappointing for me. They came out with the Vest when I was 12, and I was one of the first people to get it.
3. I have digestive, lung, and sinus problems. I need IV meds about 3x a year. I have had two bowel blockages, and a few other near bowel blockages. I also had a surgery for hemoptysis (coughing up blood.)
4. I am not sure if I see a cure in the future. I anticipate a great deal of progress, and we have already come a long way. I'm 22 yrs old, and I doubt my parents ever thought I would live to graduate college. There are still a lot of unknown about CF, and for now, I am just hoping for more progress and greater CF awareness.
5. From a mental health perspective, I battled depression toward the end of hs and the beginning of college. During hs, I was on steriods A LOT, which didn't help my mood. There is no worse time to be puffy cheeked than in hs! I was on steriods for ABPA, an allergic reaction to a fungus that grows in the lungs of a lot of CF patients. Thankfully, that is under control now. I am graduate school now, for genetic counseling - a career choice that was very much affected by my CF. It took me a long time to be comfortable about having CF and talking about it. Oh, and I am engaged a wonderful man who isn't a CF carrier<img src="i/expressions/heart.gif" border="0">
If you need anymore info, e mail me at mar_md@yahoo.com
Mary
2. Treatment has changed greatly since then. I remember when pulmozyme first came out when I was around 11, they made it sound like a miracle drug. It was quite disappointing for me. They came out with the Vest when I was 12, and I was one of the first people to get it.
3. I have digestive, lung, and sinus problems. I need IV meds about 3x a year. I have had two bowel blockages, and a few other near bowel blockages. I also had a surgery for hemoptysis (coughing up blood.)
4. I am not sure if I see a cure in the future. I anticipate a great deal of progress, and we have already come a long way. I'm 22 yrs old, and I doubt my parents ever thought I would live to graduate college. There are still a lot of unknown about CF, and for now, I am just hoping for more progress and greater CF awareness.
5. From a mental health perspective, I battled depression toward the end of hs and the beginning of college. During hs, I was on steriods A LOT, which didn't help my mood. There is no worse time to be puffy cheeked than in hs! I was on steriods for ABPA, an allergic reaction to a fungus that grows in the lungs of a lot of CF patients. Thankfully, that is under control now. I am graduate school now, for genetic counseling - a career choice that was very much affected by my CF. It took me a long time to be comfortable about having CF and talking about it. Oh, and I am engaged a wonderful man who isn't a CF carrier<img src="i/expressions/heart.gif" border="0">
If you need anymore info, e mail me at mar_md@yahoo.com
Mary
NoDayButToday
New member
1. On a sonogram, they actually saw my meconium ileus, and at that point the person doing the sonogram asked my mom if there was a history of CF. They said it would either be CF, or just a congenital thing, and it turned out to be CF. I was delivered 2 weeks early by C-section and had 4 surgeries for the meconium ileus, and to insert/reverse and ileostomy bag.
2. Treatment has changed since I was born. Pulmozyme was introduced, I participated in the TOBI study, the Vest came out. More recently a lot of CFers have been put on Zithromax not so much for its antibiotic properties, but as an anti inflammatory. No new antibiotics have come out in awhile though <img src="i/expressions/face-icon-small-frown.gif" border="0">
3. Symptoms include: failure to thrive, excessively salty sweat, bowel blockages, diarhea, thick, green sticky mucus, etc. Pseudomonas is a bacteria that thrives in CF patients, sputum cultures of a lot of CFers would show this, among other things.
4. I would certainly LIKE to see a cure in the future, but they have kind of quieted down about the research they were doing. Gene Therapy was talked alot about when I was younger, but that has sort of died out. Also, they don't really talk about protein therapy much anymore. But I do think at some point there will be a cure.
5. Well I could write you a book on this one <img src="i/expressions/face-icon-small-smile.gif" border="0"> A more specific question would help.
Glad to help
2. Treatment has changed since I was born. Pulmozyme was introduced, I participated in the TOBI study, the Vest came out. More recently a lot of CFers have been put on Zithromax not so much for its antibiotic properties, but as an anti inflammatory. No new antibiotics have come out in awhile though <img src="i/expressions/face-icon-small-frown.gif" border="0">
3. Symptoms include: failure to thrive, excessively salty sweat, bowel blockages, diarhea, thick, green sticky mucus, etc. Pseudomonas is a bacteria that thrives in CF patients, sputum cultures of a lot of CFers would show this, among other things.
4. I would certainly LIKE to see a cure in the future, but they have kind of quieted down about the research they were doing. Gene Therapy was talked alot about when I was younger, but that has sort of died out. Also, they don't really talk about protein therapy much anymore. But I do think at some point there will be a cure.
5. Well I could write you a book on this one <img src="i/expressions/face-icon-small-smile.gif" border="0"> A more specific question would help.
Glad to help
NoDayButToday
New member
1. On a sonogram, they actually saw my meconium ileus, and at that point the person doing the sonogram asked my mom if there was a history of CF. They said it would either be CF, or just a congenital thing, and it turned out to be CF. I was delivered 2 weeks early by C-section and had 4 surgeries for the meconium ileus, and to insert/reverse and ileostomy bag.
2. Treatment has changed since I was born. Pulmozyme was introduced, I participated in the TOBI study, the Vest came out. More recently a lot of CFers have been put on Zithromax not so much for its antibiotic properties, but as an anti inflammatory. No new antibiotics have come out in awhile though <img src="i/expressions/face-icon-small-frown.gif" border="0">
3. Symptoms include: failure to thrive, excessively salty sweat, bowel blockages, diarhea, thick, green sticky mucus, etc. Pseudomonas is a bacteria that thrives in CF patients, sputum cultures of a lot of CFers would show this, among other things.
4. I would certainly LIKE to see a cure in the future, but they have kind of quieted down about the research they were doing. Gene Therapy was talked alot about when I was younger, but that has sort of died out. Also, they don't really talk about protein therapy much anymore. But I do think at some point there will be a cure.
5. Well I could write you a book on this one <img src="i/expressions/face-icon-small-smile.gif" border="0"> A more specific question would help.
Glad to help
2. Treatment has changed since I was born. Pulmozyme was introduced, I participated in the TOBI study, the Vest came out. More recently a lot of CFers have been put on Zithromax not so much for its antibiotic properties, but as an anti inflammatory. No new antibiotics have come out in awhile though <img src="i/expressions/face-icon-small-frown.gif" border="0">
3. Symptoms include: failure to thrive, excessively salty sweat, bowel blockages, diarhea, thick, green sticky mucus, etc. Pseudomonas is a bacteria that thrives in CF patients, sputum cultures of a lot of CFers would show this, among other things.
4. I would certainly LIKE to see a cure in the future, but they have kind of quieted down about the research they were doing. Gene Therapy was talked alot about when I was younger, but that has sort of died out. Also, they don't really talk about protein therapy much anymore. But I do think at some point there will be a cure.
5. Well I could write you a book on this one <img src="i/expressions/face-icon-small-smile.gif" border="0"> A more specific question would help.
Glad to help
serendipity730
New member
It's pretty funny that 3 out of 4 of the people who have responded so far had meconeum illeus, since it only occurs in about 10% of CF patients.<img src="i/expressions/face-icon-small-confused.gif" border="0">
serendipity730
New member
It's pretty funny that 3 out of 4 of the people who have responded so far had meconeum illeus, since it only occurs in about 10% of CF patients.<img src="i/expressions/face-icon-small-confused.gif" border="0">
1 I was two when I was diagnosed with CF, though I started showing symptoms after my mom stopped breast-feeding me, which we always found interesting. I was totally normal and healthy until literally 1-2 weeks after she stopped, then I had cold after cold, and finally pneumonia, and finally was given a sweat test.
2 Treatment has changed a lot, basically knowledge has just grown. Luckily we have a lot more meds than they did now, but still not as many as I could like, especially since I have b. cepacia, and there are very few meds that work for it.
3 like i said, i culture b. cepacia (for the past 4 years), and pseudamonas since I was about 7. I had digestive problems until about age 11 and took enzymes until then, but now do not. This is a mystery to everyone. My symptoms, i.e. infections, have increased since getting cepacia and i have been hospitalized more.
4 i see a cure in the future for some people but not for me. for me the cure is not important but what is is improving treatments and getting MORE MEDS.
5 i have had a million and one experiences like i am sure everyone on this board has. CF is so different from person to person its unbelievable. The thought of trying to write my experiences is exhausting, they range from surgeries to dumb doctors to emotional issues of course, but i would be happy to answer specific questions.
Caitlin
2 Treatment has changed a lot, basically knowledge has just grown. Luckily we have a lot more meds than they did now, but still not as many as I could like, especially since I have b. cepacia, and there are very few meds that work for it.
3 like i said, i culture b. cepacia (for the past 4 years), and pseudamonas since I was about 7. I had digestive problems until about age 11 and took enzymes until then, but now do not. This is a mystery to everyone. My symptoms, i.e. infections, have increased since getting cepacia and i have been hospitalized more.
4 i see a cure in the future for some people but not for me. for me the cure is not important but what is is improving treatments and getting MORE MEDS.
5 i have had a million and one experiences like i am sure everyone on this board has. CF is so different from person to person its unbelievable. The thought of trying to write my experiences is exhausting, they range from surgeries to dumb doctors to emotional issues of course, but i would be happy to answer specific questions.
Caitlin
1 I was two when I was diagnosed with CF, though I started showing symptoms after my mom stopped breast-feeding me, which we always found interesting. I was totally normal and healthy until literally 1-2 weeks after she stopped, then I had cold after cold, and finally pneumonia, and finally was given a sweat test.
2 Treatment has changed a lot, basically knowledge has just grown. Luckily we have a lot more meds than they did now, but still not as many as I could like, especially since I have b. cepacia, and there are very few meds that work for it.
3 like i said, i culture b. cepacia (for the past 4 years), and pseudamonas since I was about 7. I had digestive problems until about age 11 and took enzymes until then, but now do not. This is a mystery to everyone. My symptoms, i.e. infections, have increased since getting cepacia and i have been hospitalized more.
4 i see a cure in the future for some people but not for me. for me the cure is not important but what is is improving treatments and getting MORE MEDS.
5 i have had a million and one experiences like i am sure everyone on this board has. CF is so different from person to person its unbelievable. The thought of trying to write my experiences is exhausting, they range from surgeries to dumb doctors to emotional issues of course, but i would be happy to answer specific questions.
Caitlin
2 Treatment has changed a lot, basically knowledge has just grown. Luckily we have a lot more meds than they did now, but still not as many as I could like, especially since I have b. cepacia, and there are very few meds that work for it.
3 like i said, i culture b. cepacia (for the past 4 years), and pseudamonas since I was about 7. I had digestive problems until about age 11 and took enzymes until then, but now do not. This is a mystery to everyone. My symptoms, i.e. infections, have increased since getting cepacia and i have been hospitalized more.
4 i see a cure in the future for some people but not for me. for me the cure is not important but what is is improving treatments and getting MORE MEDS.
5 i have had a million and one experiences like i am sure everyone on this board has. CF is so different from person to person its unbelievable. The thought of trying to write my experiences is exhausting, they range from surgeries to dumb doctors to emotional issues of course, but i would be happy to answer specific questions.
Caitlin
Mary-
I am interested in your note (see below) regarding meconeum ileus. Any insight or direction would be appreciated.
We are in an interesting situation. We have two girls (ages 8 and 5) without CF, and my wife has tested negative for the carrier gene.
We now have a newborn boy born 8/7/05. He had meconeum ileus, and had to have surgery to address it. It is often made out that if one has meconeum ileus, he certainly has CF. At the same time, some of the NICU nursing staff state that they have seen instances of meconeum ileus without CF. Can you direct me to any data regarding meconeum ileus and its likelihood as an indicator for CF?
Please respond to jonathan.weatherly@nsecare.com
Thanks,
Jonathan
serendipity730
Posts: 214
Joined: Mar 2003
Saturday November 06, 2004 2:41 PM
It's pretty funny that 3 out of 4 of the people who have responded so far had meconeum illeus, since it only occurs in about 10% of CF patients.
-------------------------
Mary 22 w/CF - getting married on July 1, 2006, getting my masters in genetic counseling <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am interested in your note (see below) regarding meconeum ileus. Any insight or direction would be appreciated.
We are in an interesting situation. We have two girls (ages 8 and 5) without CF, and my wife has tested negative for the carrier gene.
We now have a newborn boy born 8/7/05. He had meconeum ileus, and had to have surgery to address it. It is often made out that if one has meconeum ileus, he certainly has CF. At the same time, some of the NICU nursing staff state that they have seen instances of meconeum ileus without CF. Can you direct me to any data regarding meconeum ileus and its likelihood as an indicator for CF?
Please respond to jonathan.weatherly@nsecare.com
Thanks,
Jonathan
serendipity730
Posts: 214
Joined: Mar 2003
Saturday November 06, 2004 2:41 PM
It's pretty funny that 3 out of 4 of the people who have responded so far had meconeum illeus, since it only occurs in about 10% of CF patients.
-------------------------
Mary 22 w/CF - getting married on July 1, 2006, getting my masters in genetic counseling <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jonathan -
I am not Mary, but after reading your post I wanted to respond. You stated that your wife is not a carrier of CF. Did she get tested for all gene mutations? There are over 1,000. Most carrier tests only screen for the 20-30 most prevalant mutations. Only a lab called Ambrey Genetics tests for all 1,000+ mutations.
If your wife has a rare gene mutation it may not have been picked up on a general screening.
Maria (mother of three daughters, the youngest Samantha w/cf)
I am not Mary, but after reading your post I wanted to respond. You stated that your wife is not a carrier of CF. Did she get tested for all gene mutations? There are over 1,000. Most carrier tests only screen for the 20-30 most prevalant mutations. Only a lab called Ambrey Genetics tests for all 1,000+ mutations.
If your wife has a rare gene mutation it may not have been picked up on a general screening.
Maria (mother of three daughters, the youngest Samantha w/cf)
Mockingbird
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>serendipity730</b></i><br>It's pretty funny that 3 out of 4 of the people who have responded so far had meconeum illeus, since it only occurs in about 10% of CF patients.<img src="i/expressions/face-icon-small-confused.gif" border="0"><hr></blockquote>
Ha ha, I think they just take a guess at some of those percentages. =-) Ha ha, like that thing that says, "90% of all statistics are completely made up" =-)
Ha ha, I think they just take a guess at some of those percentages. =-) Ha ha, like that thing that says, "90% of all statistics are completely made up" =-)