12 Things to Know Before Coming to the Clinic
Center for CF at Keck Hospital of USC
General CF Info & What is CF?
Medication & Equipment
Finances, Support & Guidance

12 Things to Know Before Coming to the Clinic

Who do I call to make an appointment, and what are the clinic hours during the week?
Answer: To make an appointment, please call (323) 442-8330 and press 1 for scheduling. Clinic hours are Tuesdays from 9 a.m. to 12 p.m. and Wednesdays, 11 a.m. to 4 p.m.

If I have to cancel an appointment, what is the protocol?
Answer: If you need to cancel or reschedule an appointment, please notify our clinic 24 hours in advance so that we can schedule another patient during your time slot. To cancel or reschedule, please call (323) 442-8330 and press 1 for scheduling.

Do we pay copays upfront at the appointment, or are we billed?
Answer: Copays for appointments may be collected at the time of the visit. If the copay is not collected, you will be billed for it after your appointment.

Do I need to bring anything to my first appointment? What about appointments therafter? What can I expect at the first appointment?
Answer: On your first appointment, you should bring the following: CD copy of your previous radiology testing (CT scans, MRI, X-rays), copy of your vaccination records, list of current medications, list of your drug allergies with the reaction to medications, any pertinent past medical history information and any medical records. You may also bring a list of questions or conerns that you may want the doctor or other CF team members to address during your visit. On follow-up appointments, please bring a current medication list. At each appointment, you will be asked to fill out a Personal Assessment Form where you can write down your health concerns.

How long does the first appoinment last? What about appointments thereafter?
Answer: Your first appoinment with the CF team will take approximately 2 to 3 hours. This visit will include an introduction to the CF team, some diagnostic tests and an MD evaluation. Follow-up appointments are typically an hour and a half long.

Are there any precautions taken to prevent the spread of infection between patients? Am I required to wear the mask and gloves while in the room?
Answer: Patient safety is our number one priority. Therefore, all pateints who come to the CF clinic will be asked to wear gloves and a mask to protect themselves and other CF patients they may come in contact with while at the clinic appointment. We have also created specific CF clinic appointment time slots for patients who have multi-drug resistant bacteria versus those who do not. While you are in the rooms during your clinic visit, you may remove your gloves and masks but will be asked to wear them when leaving your room to go to any testing or when leaving your appointment.

Do I see all of the team members at each appointment?
Answer: You may not see all team members at every clinic appointment but all members are available to you at any clinic visit. If there are specific needs or concerns related to your CF care, the CF physician may request that a specific team member visit with you during a clinic appointment.

Do I always see the same doctor? What determines what doctor I see?
Answer: We currently have three CF doctors and a Pulmonary Fellow in our clinic. You may not always see the same CF doctor at each visit. All doctors in our clinic are knowledgeable and capable of caring for all your CF needs. Depending on the availability of the doctor on any given CF clinic day determines which doctor you may visit with. Be assured that all CF doctors have your medical records to review and can adequately manage your CF even if they did not care for you at the last clinic visit.

What testing will be done during my first appointment, and why are these tests done? What testing is done regularly during appointments thereafter?
Answer: During your very first clinic appoinment, the following test will be ordered:

Chest X-ray: to assess your baseline at the time of your first visit with us.

Laboratory work (CBC, CMP, cholesterol, thyroid panel, vitamin levels, urine test, inflammation markers): to assess your current nutritional and medical status

Spirometry: to assess your lung fuction at the time of your visit

On subsequent follow-up clinic appointments, you may be asked to regularly obtain the following tests on various clinic appointments:

Lab (CMP) every 3 months

Sputum culture every 3 months

Spirometry every visit

Chest X-ray every 6 months

How often am I required to see the doctor?
Answer: Per the CF Foundation guideline recommendations, all CF patients should be seen on a quarterly basis (once every 3 months) for an evaluation of their nutrition and respiratory status. This recommendation is based on improved survival rates and patient outcomes.

Do you suggest that a patient brings a person for support during the appointments?
Answer: You are always invited to bring someone to your clinic appointment. Please be aware that by allowing any individual in your clinic exam room that you have given permission for them to listen to your personal health information. At any time during your visit, you can always ask your support person to leave the room. Please be advised that your support person may be excused to leave the exam room if his or her presence disrupts the visit.

Where can I park for my appointment?
Answer: Parking is available at the hospital parking structure located on the left side of the hospital. You may access the entrance of this parking structure as you drive toward the hospital. The maximum parking cost $7 per day and the parking structure kiosk does accept major credit cards and cash for payment. Please note that there is no parking validation given at your clinic appointment.

Other parking around our clinic is also available such as parking meters (4 to 10 hours and they accept major credit cards and quarters) as well as other parking garages underneath adjacent buildings to the hospital. Please note that if you have a handicap decal, you may use them at the parking meters for free parking.

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Center for CF at Keck Hospital of USC

How does the USC CF Clinic handle patients with sudden flare ups and getting them in to see the Doctor as soon as possible?
Answer: Once you call to let them know you’re having a sudden flare up, they try their best to get each patient in as soon as possible to see Dr. Rao. It could be as quick as the next day.

What happens when you’re sick and need to be admitted for IVs?
Answer: If you are having symptoms of an exacerbation (e.g. increased cough, increased sputum, shortness of breath, recent loss of weight, poor appetite, etc) call the Nurse Coordinator at (323) 442-8522. The Nurse Coordinator will contact Dr. Rao and will submit your admitting paperwork to the Admitting Case Manager. The Admitting Case Manager will contact you as soon as your paperwork is processed and a bed is available for you.

How do you contact the doctor after hours?
Answer: You can contact the CF Center Monday through Friday from 8 a.m. to 4:30 p.m. at (323) 442-8522. For after-hour emergencies, you can call 1-800-USC-CARE and ask to speak with the Pulmonary Attending on call.

How long do culture results take to come back?
Answer: Final CF Sputum culture results are received within 5 to 7 days.

What tests are included in the yearly screening?
Answer: The following diagnostic tests are ordered for your yearly screening: Oral Glucose tolerance test, Bone Density/Dexa Scan, Chest X-ray (if none within the past 6 months), complete blood count (CBC), Comprehensive metabolic panel (CMP), Vitamin levels (A, D, E, PT/INR), Thyroid stimulating hormone (TSH), Inflammatory markers (IgE level and Cardio CRP), Urine collection ( Urine for mircroalbumin and urine creatinine), Cystatin C, Full pulmonary function test, Testosterone levels (males only).

What specific yearly tests should I get outside of my CF clinic visit?
Answer: A yearly pap smear for women (all women over 18 regardless of sexual activity), Mammograms (women over 40 unless otherwise ordered), Prostate exam (men over 40), Eye exam (anyone with known CFRD (diabetes) are required to have their eyes dilated and examined), and Dental care (all patients).

Who do you call to get prescription refills?
Be sure to contact your local pharmacy to check if you have any refills. If you do not have any refills left please contact your pharmacy and have them fax a refill request to us at (323) 442-8415 or you can contact us at (323) 442-8522. Be sure to provide us the name of the drug, the dose, the frequency, the route in which you take the medication, 30-day or 90-day supply, and the name and phone number of your pharmacy. Please note that all refill requests will be completed within 3 to 5 business days.

What is the protocol if you have to visit the ER due to a sudden emergency? Who do you call to notify and how do you get in touch with your CF doctor once you’re there?
Answer: If you go to the Emergency Room, inform the doctor that you have CF and you are a patient at the CF Center at Keck Hospital of USC. Ask the ER doctor to call the CF Center or the after hours phone number to speak to Dr. Rao. If your ER visit results in an admission, you can request for your care to be transferred to Keck Hospital of USC. The doctor will contact Dr. Rao to initiate the transfer to our hospital.

When should you contact your doctor if you’re feeling sick or if you suspect you have an infection?
Answer: It is very important to communicate early with your CF doctor if you’re feeling sick. This is key for adults who are managing their own care.

How can I find out about clinical research studies for CF?
Answer: If you are interested in clinical research studies, you can contact the Research Coordinator at (323) 442-9580 to determine if you qualify for any current or upcoming studies. Keep in mind that not all clinical research studies are for everyone, studies differ in their criteria.

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General CF Info & What is CF?

What causes CF?
Answer: Cystic Fibrosis (CF) is caused by a defect in a gene called the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene. This gene makes a protein that controls the movement of salt and water in and out of the cells in your body. In people with CF, the gene does not work effectively. This causes the thick, sticky mucus and very salty sweat that are the main features of CF.

What is a CF mutation?
Answer: Genes are strung together on Chromosomes, rodlike structures found in the nucleus of each cell. Human beings have 46 chromosomes, arranged in 23 pairs. In each pair, one chromosome is contributed by the mother, the other by the father. The gene involved in CF is found on chromosome 7. Each person has two copies of the gene, one on each chromosome. Because this gene is recessive, a person must inherit two genes containing a mutation - one from the mother, one from the father - to experience the symptoms of CF. If only one gene has a mutation, the person will be a carrier, who can pass the gene on but will not have symptoms of the disease.

Is CF contagious?
Answer: No, CF is not contagious, it is genetic. Those with CF are more susceptible to germs and may catch others’ colds easily, but CF itself is not contagious.

Is it important for individuals with CF to exercise?
Answer: It is very important for those with CF to exercise regularly in order to strengthen their lungs and to build muscle mass. It also serves as secondary Chest Purcussion Therapy (CPT) to help clear out the thick mucous.

Are there different levels of severity with CF?
Answer: CF can affect people differently. There are more than 1,300 mutations of the defective CF gene. These mutations impact people differently. Some people have more severe lung disease at an early age, and others have more problems with their digestive system. Scientists are studying gene modifiers to find out what may affect the CF gene and the severity of the disease.

Is it inevitable that a person with CF will need a lung transplant in the future?
Answer: CF is a progressive disease and lung transplant will not cure CF. Fortunately, a lung transplant allows a patient to have a quality of life they once hoped for. Lung transplant is a difficult and personal decision. It is crucial that you communicate to the CF team about your thoughts on lung transplantation.

What is the average lifespan?
Answer: In 2008, the median predicted age of survival rose to 37.4 years. This was up from 2004’s figure of 35.1 years.

How many people have Cystic Fibrosis?
Answer: There are approximately 30,000 people in the United States who have Cystic Fibrosis.

What is a PFT and is it routine for those with CF to have it done?
Answer: PFT stands for Pulmonary Function Test. It is used to measure a person's breathing behavior. PFTs measure many aspects of your lung function, from small airways to large airways, etc. The purpose of the PFT is to help you and your doctor to be on top of any lung damage, pulmonary decline or improvement. At USC Adult CF Clinic, we administer a PFT for each patient at least once a year and more frequently if needed.

Why do some people with CF have clubbed fingers?
Answer: Clubbed fingers is a symptom of Cystic Fibrosis which comes from malabsorption.

What is Pseudomonas?
Answer: Pseudomonas aeruginosa is a versatile Gram-negative bacterium that grows in soil, marshes and coastal marine habitats, as well as on plant and animal tissues. People with cystic fibrosis are particularly at risk of disease resulting from P. aeruginosa infection.

What is MRSA?
Answer: MRSA is short for Methicillin-Resistant Staphyloccus aureus. Methicillin was an antibiotic used to treat S. aureus in the early 1960s before it was replaced by less toxic 'cousins' such as flucloxacillin. MRSA is resistant to flucloxacillin, the most commonly used antibiotic for anti-staphylococcal prophylaxis and treatment of patients with cystic fibrosis (CF).

What is Hemoptysis?
Answer: Hemoptysis is the coughing up of blood or blood-stained sputum. If you are having hemoptysis, please notify the CF center immediately at (323) 442-8522.

What is CFRD?
Answer: Cystic Fibrosis related diabetes (CFRD) is a unique type of diabetes. It is not the same as diabetes in people without CF. The diagosis and treatment is not exactly the same. CFRD is extremely common in people with CF as they get older. CFRD is found in 35% of adults aged 20 to 29 and 43% for those over the age of 30. CFRD has some features of type 1 and type 2 diabetes. People with CF don't make enough insulin. This is a result of scarring in the pancrease. Insulin resistance is another reason people develop CFRD. Insulin resistance means that your body does not use insulin normally. Insulin resistance is caused by chronic underlying infections. Another cause is high levels of cortisol. Cortisol is a steroid produced in the adrenal glands of the body. Cortisol levels in the body increase in response to stress, like an infection. Increased cortisol levels interfere with insulin levels in the body, thus increasing a persons blood sugar.

What is 65 Roses?
Answer: 65 Roses is what some children with CF call the disease. The pronunciation between Cystic Fibrosis and 65 roses is very similar.

Can men with CF produce children?
Answer: Although approximately 90% of CF males are infertile. CF males can have children. It is recommended that males with CF have a sperm analysis to determine their fertility status. Fertility procedures are available to assist CF males and their partners to have children. The intracytoplasmic sperm injection procedure also known as ICSI can be performed allowing CF males and their partners to conceive outside the womb. For more information regarding this please contact a CF team member or request a CF patient mentor for further details.

Can women with CF produce children?
Answer: CF women can have children. The fluidity of mucous varies in women. Vaginal mucous is often thicker making it more difficult for the sperm to travel and for fertilization to take place. It may take longer for women with CF to become pregnant, although this in no way affects the pregnancy itself or the fetus. Fertility procedures are available to assist a pregnancy. For more information regarding this please contact a CF team member or request a CF patient mentor for further details.

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Medication & Equipment

What is the best way to sterilize neb cups?
Answer: Let the neb cups soak in warm soapy water for 5 to 10 minutes. Then rinse and put the nebs in a large bowl of tap water, place it in the microwave for 10 to 15 minutes so the water boils.

Which nebs are you suppose to use for which meds?
Answer: You should have a nebulizer for each inhaled medication prescribed to you. For example, if you are prescribed 4 inhaled medications, then you should have 4 nebulizers. Nebulizers must be sterilized after each treatment to reduce bacteria.

What are your airway clearance choices?
Answer: The Vest (by Hillrom), Flutter, Accapella, and exercise.

What do all of the inhaled medications do? In what order are they supposed to be taken?
Answer: Inhaled medications should be done in the following order:
1. Bronchodilators (Albuterol) – open the airways to help clear mucus and make breathing easier. They are given before performing ACTs.
2. Hypertonic Saline – helps to stimulate cough and to moisten thick mucus in the airways.
3. Pulmozyme – helps to thin the mucus so it is easier to cough up.
4. TOBI or Colistin – antibiotic that helps to fight infection, this medication should be taken after performing ACTs.

What happens if you don’t do your treatments? Why do you have to do this every day?
Answer: Daily treatments can help extend the lives and improve the quality of life of our patients. Poor adherence to treatments can cause a decline in FEV1, resulting in hospitalization.

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Finances, Support & Guidance

Who can you contact regarding insurance, disability, or billing questions?
Answer: You can contact the CF Center Social Worker at (323) 442-8358 on questions or concerns you may have regarding insurance, disability, or billing.

What is the difference between Medicare and Medicaid?
Answer: Medicare is a federal health insurance program. It is federally funded and is administered to those who are elderly or disabled. Every legally employed individual contributes to Medicare during their working years. Medicaid is a program that provides medical aid to those of all ages who have low income and do not have the means of paying for medical expenses. The program is run by both the federal and the state governments. Eligibility is based on income and medical necessity.

Is it possible to find financial assistance to help pay for your CF medications?
Answer: Patient Assistance Programs are available for those patients having difficulties obtaining medications due to insurance barriers or high share of cost. The following programs are available to those who meet criteria: TOBI PAP, Pulmozyme Access Solution, CFF PAP, and Axcan Pharma for enzymes.

What is GHPP and how do I qualify?
Answer: GHPP stands for Genetically Handicapped Persons Program. GHPP is a State funded program and it is available to anyone with a genetic disease. To be eligible for GHPP, you must be a California resident and be 21 years old. GHPP will cover all health services related to CF. Annual enrollment fees are based on family size and household income. If you have additional questions, please contact the CF Center Social Worker at (323) 442-8358.

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