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cystic_fibrosis's Journal
Created on 2001-12-15 13:01:57 (#414798), last updated 2009-06-19
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Basic Info| Name: | Sixty-Five Roses ~ Cystic Fibrosis |
|---|---|
| Location: | Cow Land~, United States |
| Membership: | Open |
| Posting Access: | All Members |
Contact:
aubrey_osiris@gryphon.zzn.com About...Sixty-five roses, cystic fibrosis,
Made her so tired, she had to stay in bed.
Sixty-five roses, cystic fibrosis,
I wish she had roses instead.
Sixty-five roses, cystic fibrosis,
I wish that she could come out to play.
Life, one supposes, is no bed of roses,
I wish she had roses instead.
Welcome to the cystic fibrosis community!
If you have CF, have friends/family with CF, or just want to learn more about the illness, feel free to join.
Rules
1.) Be respectful. Intolerance will not be tolerated, as it were. Moderators reserve the right to ban repeat offenders.
2.) Limit any frank discussion of a sexual nature. This isn't to say you may not discuss sexual topics, but try to keep it PG-13, as people have had problems with such posts in the past.
3.) Please also limit religious discussion. For those who are religious: Do not preach. For those who are not religious: Do not make inflammatory remarks about another's religion. This is a touchy subject for many people and censorship is (unfortunately) necessary to avoid heated arguments.
What you can do:
*Discuss how your religion helps you cope with your illness (in a respectful way and without telling others what they should or shouldn't do);
*Seek out others of the same religious faith;
*Offer or receive prayers/healing thoughts/etc for those who ask.
What you cannot do:
*Preach;
*Discuss your religious beliefs in a condescending manner or act as though your religion is fact and that it must apply to everyone;
*Make rude comments about another person and his/her religion.
There is a certain element of "don't like it, don't read it" here. I refuse to ban religion completely, but I will also not hesitate to remove those who fail to follow this rule whether they are religious or not. If you have ANY questions, please don't be afraid to ask a moderator. We want this to be as fair as possible.
---
What is cystic fibrosis?
Cystic fibrosis (CF) is an often fatal inherited disease caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) protein. CFTR mediates chloride transport across many of the body's epithelial cell membranes, but most importantly (in terms of CF pathology) in the lungs, intestine, and pancreas. When chloride transport is somehow impaired or interrupted, mucus produced by these organs and other exocrine glands is unusually thick and sticky. As a result, patients are predisposed to recurrent respiratory infection and inflammation, sinus abnormalities, malnutrition, and in some cases, insulin-dependent diabetes, glucose intolerance, arthritis, liver/gallbladder disease, and kidney disease.
What is "Sixty-five Roses?"
Read the story here.
Treatment (General)
There is currently no cure for cystic fibrosis. However, permanent damage to the lungs can be slowed with the use of antibiotics (administered orally or via IV), bronchodilators, mucolytics, and steroids. Daily chest percussion therapy helps loosen thick secretions so that they can be expectorated.
Preventing and controlling infection is a patient's primary defense, as more than 90% will eventually succumb to respiratory failure.
Pancreatic enzymes and multivitamins are prescribed to patients suffering from pancreatic insufficiency. This allows the body to break down and absorb carbohydrates, proteins, and fats. Bile salts may also be taken in the case of liver or gallbladder disease.
Thankfully, medical technology continues to improve, and many of us are living to the age of 30 and beyond. Future treatments, such as gene therapy, may someday offer relief. (It would be impossible to list all of the current CF studies without gratuitous use of medical jargoncationic liposome complexes, cAMP-activated chloride channels, gene modifiers, oh my!. In the meantime, check out the CF Foundation website.
What is this community for?
This is a source for education and a collection of experiences. Whining and ranting is perfectly acceptable! In fact, updates on your medical status and feelings are encouraged; we're here to help.
Off-topic posts are also fine. Life doesn't have to be all about mucus. ...Or does it? :D
If you have any questions, please contact the Sisters of Doom:![[info]](http://l-stat.livejournal.com/img/userinfo.gif)
aubrey_osiris or cosmicdust.
---
Rest well,reemul, mintfreak, _safira, joymarie72, sunniedaze, deathfromabove6, sick_girl_pinky, cfkitty, twisted_tigress, cmoo, danforththefish, and finding_her. Your inspiration will live with us always.
Made her so tired, she had to stay in bed.
Sixty-five roses, cystic fibrosis,
I wish she had roses instead.
Sixty-five roses, cystic fibrosis,
I wish that she could come out to play.
Life, one supposes, is no bed of roses,
I wish she had roses instead.
Welcome to the cystic fibrosis community!
If you have CF, have friends/family with CF, or just want to learn more about the illness, feel free to join.
Rules
1.) Be respectful. Intolerance will not be tolerated, as it were. Moderators reserve the right to ban repeat offenders.
2.) Limit any frank discussion of a sexual nature. This isn't to say you may not discuss sexual topics, but try to keep it PG-13, as people have had problems with such posts in the past.
3.) Please also limit religious discussion. For those who are religious: Do not preach. For those who are not religious: Do not make inflammatory remarks about another's religion. This is a touchy subject for many people and censorship is (unfortunately) necessary to avoid heated arguments.
What you can do:
*Discuss how your religion helps you cope with your illness (in a respectful way and without telling others what they should or shouldn't do);
*Seek out others of the same religious faith;
*Offer or receive prayers/healing thoughts/etc for those who ask.
What you cannot do:
*Preach;
*Discuss your religious beliefs in a condescending manner or act as though your religion is fact and that it must apply to everyone;
*Make rude comments about another person and his/her religion.
There is a certain element of "don't like it, don't read it" here. I refuse to ban religion completely, but I will also not hesitate to remove those who fail to follow this rule whether they are religious or not. If you have ANY questions, please don't be afraid to ask a moderator. We want this to be as fair as possible.
---
What is cystic fibrosis?
Cystic fibrosis (CF) is an often fatal inherited disease caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) protein. CFTR mediates chloride transport across many of the body's epithelial cell membranes, but most importantly (in terms of CF pathology) in the lungs, intestine, and pancreas. When chloride transport is somehow impaired or interrupted, mucus produced by these organs and other exocrine glands is unusually thick and sticky. As a result, patients are predisposed to recurrent respiratory infection and inflammation, sinus abnormalities, malnutrition, and in some cases, insulin-dependent diabetes, glucose intolerance, arthritis, liver/gallbladder disease, and kidney disease.
What is "Sixty-five Roses?"
Read the story here.
Treatment (General)
There is currently no cure for cystic fibrosis. However, permanent damage to the lungs can be slowed with the use of antibiotics (administered orally or via IV), bronchodilators, mucolytics, and steroids. Daily chest percussion therapy helps loosen thick secretions so that they can be expectorated.
Preventing and controlling infection is a patient's primary defense, as more than 90% will eventually succumb to respiratory failure.
Pancreatic enzymes and multivitamins are prescribed to patients suffering from pancreatic insufficiency. This allows the body to break down and absorb carbohydrates, proteins, and fats. Bile salts may also be taken in the case of liver or gallbladder disease.
Thankfully, medical technology continues to improve, and many of us are living to the age of 30 and beyond. Future treatments, such as gene therapy, may someday offer relief. (It would be impossible to list all of the current CF studies without gratuitous use of medical jargon
What is this community for?
This is a source for education and a collection of experiences. Whining and ranting is perfectly acceptable! In fact, updates on your medical status and feelings are encouraged; we're here to help.
Off-topic posts are also fine. Life doesn't have to be all about mucus. ...Or does it? :D
If you have any questions, please contact the Sisters of Doom:
aubrey_osiris or cosmicdust.---
Rest well,
reemul, mintfreak, _safira, joymarie72, sunniedaze, deathfromabove6, sick_girl_pinky, cfkitty, twisted_tigress, cmoo, danforththefish, and finding_her. Your inspiration will live with us always. ConnectInterests (44):
:p, antibiotics, anxiety, aspergillus fumigatus, being silly, being strange, being weird, burkholderia cepacia, cf, cheese!, coughing, creativity, cystic fibrosis, depression, diabetes, dreaming, eccentricity, enzymes, exercise, fooling doctors, gastroenterology, glucose intolerance, haemophilus influenzae, hope, hospitals, humor, insulin injections, liver transplants, lung transplants, medicine, microbiology, mrsa, nutrition, pfts, pills, pseudomonas aeruginosa, pulmonary function tests, pulmonology, sarcasm, self expression, staphylococcus aureus, streptococcus pneumoniae, vitamins, whining
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