HandbookTitle
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Administration
What Is CF
How Is CF Diagnosed
Will The Child Have CF
What Treatments Are Used
Nutrition
EnzymeSupplements
Physical Therapy
Aerosols
Oral Medications
Intravenous Medications
Procedures & Techniques
Equipment
Difficult To Treat Microbes
Complications Of CF
New Or Investigational
Paying For It
Finding A Physican
Dealing W/ Medical People
Coping With Diagnosis
Coping With Death
Tricks Of The Trade
Separate Clinics For Adults
Alternative Medicine
Traveling With Oxygen
Flying
Is My CF Mild, Severe?
Smoking And CF
Alcohol And CF
Helping Siblings Cope
Colonized W/ P Aeruginosa
Will Moving Help My CF
Lung Transplantation
Donate Organs & Tissues
Job Sharing
Virus Infections in CF
Medic Alert
Neonatal Screening for CF
Antibiotics: Resistance
Impact On Relationships
PFT's Explained For You
Pregnancy and CF
Womens Problems
Who's Who At Club Med
Appendices TOC
5. What Treatments Are Used?

 

Contents:

(*overview* -- details on specific treatments provided in other sections)

Outpatient

Oral pancreatic enzymes (Creon, Pancrease, Cotazym); supplemental vitamin E; IV nutrition; CPT (chest physio therapy); respiratory exercises (Flutter, ...); Deoxyribonuclease to cleave the DNA in sputum to reduce viscosity (or Pulmozyme (Dnase) by Genentech); hypertonic saline inhaled antibiotics (Colystin, Tobramycin, ...) to fight pseudomonas (P.) aeruginosa.

Inpatient

Many of the treatments PWCF use are not well known by standard health professional types. Don't expect to look up any of your therapies up in standard references (like the PDR) and to find them. You won't find aerosolized antibiotics and you won't get the right enzyme dose. So were do you look? The best bet is to look in medical journals (not an easy task) or to check the variety of CF publications. Enzyme dosing is frustrating; it seems to be 25% science and 75% witchcraft.

Around here a typical (routine) hospital stay lasts 2-3 weeks depending on how fast one gets back to one's baseline PFT numbers (or until the docs judge that you won't be getting better). Treatment seems to consist of intravenous antibiotics (1-3 different meds selected for effectiveness at killing whatever bacteria grow from your sputum or throat cultures). In addition chest physical therapy (pounding) in conjunction with postural drainage (you get in various position intended to promote drainage from various lobes of the lung) happens four times a day. The pounding should not (normally, does not) hurt. Aerosolized bronchodialaters are often used, especially for those with an asthmatic component.

More exotic treatments/procedures are available for more difficult cases.

Less clearly needed treatments are also typically applied, as you might imagine (e.g., sleep deprivation, depersonalization, privacy deprivation, bizarre food experiments, testing of annoyance limits, and the like), but it's never clear who orders these things!

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