Cystic Fibrosis; after a child’s legendary mispronunciation; popularized by the Cystic Fibrosis Foundation (USA) in the names of fund-raising events (e.g., 65 Roses Dance)
Allergic Bronchio Pulmonary Aspergillosis
A fungal infection of the lungs and/or bronchi to which the victim is allergic.
Atelectasis refers to collapse of the lung, which may be complete or partial. Plugging of a bronchus by various pathologies is a major cause, since gas trapped in the alveoli dissolves in the blood and is carried away. An acute, massive collapse is most often found in patients following an operation, due to both limited respiratory movements in the recovering patient and excess mucus production. Also, should air enter the intrapleural space, which is termed pneuomothorax, the lung on the side affected necessarily collapses.
A medical term meaning a small sac akin to a blister. Blebs are found on the surface of the lung. When a bleb ruptures and causes a leak on the surface of the lung it is called a pneumothorax.
A disease of the lungs in which the structure of the bronchi, the tubes lining the lungs, is distorted so that bronchial secretions cannot easily be expelled and then become infected and very difficult to treat. Bronchiectasis refers to chronic, abnormal dilation of the bronchi. The patient tends to have a persistent, productive cough. Moreover, recurring infections of the airway are common. Dilation of bronchi normally tends to be prevented by smooth muscle and surrounding connective tissue. But as components of a bronchial wall are destroyed by inflammation, negative intrapleural pressure lead to the pathogical expansion.
A “look at the bronchi” via a tube inserted through the nostril and down the trachea (or through a tracheotomy if one is present).
Washing the mucus out of the lungs with saline during a bronchoscopy (may include directly instilling an antibiotic in the lungs, e.g., Tobra or Colistin).
A device permanently placed in the stomach to facilitate supplemental feedings; MIC and Bard buttons are two kinds of buttons.
The unreasonable guilt that sometimes troubles parent(s) of a CFer, arising from having unknowingly passed on a gene mutation that is expressed as Cystic Fibrosis
Chronic Obstructive Pulmonary Disease (COPD)
clubbing – a temporary rounding and splaying of the ends of the fingers and toes due to low oxygen in the blood stream.
A hospital; a joking reference derived from Club Med(ication)
Spitting out blood. A primary cause of hemoptysis is when the secondary-set of blood vessels called the bronchial arteries become large and tortuous due to chronic infection. Tissue destruction due to chronic infection and inflammation can cause these vessels to break down and bleed.
Hypertrophic Pulmonary Osteoarthropathy (HPO)
Hypertrophic refers to, on X-ray, the membrane covering the bone is elevated and there appears to be extra growth. The “Osteo” means bone, “arthro” means joints and “pathy” means something is wrong with. Clubbing of ones fingertips is considered a form of HPO.
Not enough oxygen available to pulmonary tissue to allow for sufficient gas exchange and normal breathing. Normally people have a level of oxygen in their blood called a po2 (Pressure of oxygen) which is from 95-100 mmHg when there is no respiratory problem. When someone has an acute respiratory problem, they often can’t oxygenate sufficiently to meet their demands and this is when you see them blue/cyanosed and struggling to breath. If you measured their p02 then and they were indeed cyanotic, the oxygen level is always below 60 mmHg. That means they are in danger of respiratory arrest unless supplemental oxygen is added. The term is “She is hypoxic” or “She has hypoxemia”. First- person account: “Two weeks ago when I was admitted to the hospital, my P02 was 46. This is not good. I was definitely cyanotic and sick, but with oxygen the value came up to 62 and when I was discharged 2 days ago, my oxygen level was back to 87, which is not 100% but not terribly bad for one with CF”
Blood sugar too high
Blood sugar too low
Idiopathic Pulmonary Fibrosis –
Periodic gatherings of members of CYSTIC-L (primarily BGCL) for social support often involving the use of alcohol. When the BGCL gather for Margarita Therapy, not only are “Bad to the Bone” and “Wild Thing” alternatively played at top volume, but a bound copy of the handbook is displayed in a prominent place, and at least one toast is drunk (I use the word advisedly) in its’ honor. Obviously, when these traditional forms are followed, the gathering has the Reverend Ron’s most solemn (~snicker~) blessing!
meconium ileus equivalent (MIE)
The distal intestinal obstruction syndrome (DIOS) is a ‘meconium ileus equivalent’ that occurs in adolescents and adults with CF.
Generally referred to as Cystic Fibrosis in the United States
Air between the lungs the pleura (the lining of the chest cavity). When a bleb ruptures and causes a leak on the surface of the lung it is called a pneumothorax.
Prime Health Care Manager(s)
Parents (or for mature CFers, oneself); the term connotes that the locus of responsibility for managing health care is properly in the mature CFer or (for minor children) in the CFer’s parents; assumes that the Prime Health Care Manager(s) will consult with appropriate experts before deciding what care is rendered.
The Rev Ron was so yclept because he is quite amazed by the amount of information available in Handbook, and at the slightest excuse will suggest (“preach”, ha ha) that someone seeking information start by looking in the Handbook. In fact he may imply that it is faintly unpatriotic not to do so. In fact, he may point out that it’s a bit irresponsible to take up CYSTIC-L time and space by asking questions WITHOUT having looked in the Handbook first! In fact, it’s hard to understand why someone wouldn’t look in Handbook first. In fact, all *right-thinking* people DO look in the Handbook first! In fact, ONLY *BAD* and *EVIL* people trying to destroy all that is right and good in the world would even think of going to sleep at night without a copy of Handbook under their pillows!!! In fact, N_O_R_M_A_L people keep a small votive candle perpetually burning on a small table in front of a copy of Handbook!!! IN FACT…hey…let me go! Get that white coat away from me!!!! HEY, STOP IT!!! The sleeves are too long anyway…HELP!!!…help!..(help)…
Thank you Ladies and Gentlemen, the Management wishes to convey our sincere apologies for that spot of unpleasantness. Apparently medication levels need readjustment again. We return you now to our regularly scheduled CYSTIC-L.
(rong kes), noun, plural -chi (-ki): a course rattling noise in the bronchial tubes, caused by an accumulation of mucus or other material; rale
Oxygen saturation in the blood.
See 65 roses (at the beginning of this Glossary)
Regular U.S. or international mail