Adult Cystic Fibrosis Program


What is Cystic Fibrosis?

Cystic fibrosis (CF) is an inherited disease that affects the lungs, digestive system, sweat glands and male fertility. Its name derives from the fibrous scar tissue that develops in the lung and the pancreas, the two principal organs affected by the disease. CF affects the body’s ability to move salt and water in and out of cells; and this defect causes the lungs and pancreas to secrete thick mucus, blocking passageways and preventing proper function. The gene that, when defective, causes CF, is called the CFTR gene, which stands for cystic fibrosis transmembrane conductance regulator. Of those with a defective CFTR gene, 70 percent have the same defect, known as delta-F508. CF is the most common genetic disease found in the Caucasian population and affects approximately 30,000 children and young adults in the United States. Individuals with CF have a variety of symptoms including:

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Wheezing or shortness of breath
  • An excessive appetite but poor weight gain
  • Greasy, floating, bulky stools.

Overview of Our Center

The Adult Cystic Fibrosis (CF) Center at the University of Florida provides personalized care and support to patients and families affected by cystic fibrosis. Our center takes a team approach, bringing together specialists from a wide variety of backgrounds and areas to ensure that we address the many unique needs of our patients. Our team includes:

  • A group of physician providers specializing in CF
  • Experienced Researchers
  • Dedicated nurses and nurse practitioners
  • Social workers
  • Physician Assistant
  • Nutritionists
  • Respiratory Therapist

The CF Center at the University of Florida is accredited by the Cystic Fibrosis Foundation.

The Foundation accredits and provides partial funding for interdisciplinary pediatric and adult CF care centers nationwide. Care centers also participate in CF clinical research; and work to educate healthcare professionals and families about CF and the care people living with the disease require.

To find the CF Foundation’s evaluation of our center (#230), please visit the access care center data at www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData


Meet the Team

  • Jorge Lascano, M.D. – Director Adult CF Program Associate Director
  • Cesar Trillo, MD
  • Julio Leey, MD
  • Giuseppe Morelli, MD
  • Wanda Nichols, RN – Adult CF Program Coordinator
  • Palma Schmidt, ARNP – Outpatient Clinic Nurse Practitioner
  • Heather Simpson – CF Social Worker
  • Jennifer Hillan – Dietitian
  • Matt Barnes – In-patient Nurse Practitioner
  • Noni Graham – Clinical Research Coordinator

To contact a member of our team, please send an e-mail or call Wanda Nichols, RN


Visiting Our Center

Location:

Address:

  • 2000 SW Archer Rd.
    Gainesville, FL 32608

Hours:

  • CF clinics are held each Wednesday of every month from 12:45 p.m. – 5:00 p.m

Appointments:

  • To schedule or cancel an appointment please call 352.273.8740
  • In the event you must cancel your appointment, the clinic requires notification at least 24 hours in advance. If you cancel an appointment, please be sure to reschedule at the time of cancellation
  • No show appointments are subject to a $25.00 charge

What to bring with you:

  • Insurance card(s)
  • Sweat test and Genetic test results
  • One years worth of records to include: PFT, sputum cultures, hospitalizations, bone density results, oral glucose tolerance test, lab test and CXR/chest CT
  • Copayment for office visit (if applicable)
  • The “New Patient Packet – mailed to you from our clinic”

Transition Clinic – Pediatric to Adult

Location:

Hours:

  • Every 5th Wednesday of the month

About:

  • This clinic was started in January 2014 as a way to minimize pediatric patients and their families concerns and anxiety regarding transition. We understand that transition is a process, not a one time event. Our clinic has been very successful  at decreasing anxieties and giving patients an upfront look at adult care.

Our Services

Quarterly CF clinic visits as recommended by the CF Foundation to include:

  • Diagnostic testing such as:
    • Sweat tests
    • DEXA Scan (every 3 years)
    • Annual 2 hour Oral Glucose Tolerance Test (OGTT)
    • Genetic tests
    • Quarterly Sputum cultures
    • Annual Blood work
    • Chest CT/Chest x-rays (every other year)
    • Quarterly Spirometry function tests with each clinic visit
    • Annual Nutritional assessments
    • Annual Social Worker assessments
    • Patient education
    • Annual Respiratory Therapist Assessment – evaluate airway clearance techniques
    • Exercise regimens

Patient Resources


Research

Research is an important part of Cystic Fibrosis (CF) care because it is the only way we can develop better treatments and, hopefully a cure for CF in the near future. There are two types of research: Clinical trials, which involve people living with CF who volunteer to help scientists answer specific questions about a new treatment or a new way of using an old treatment; and medication trials, which test a specific use for a specific medication.

For more information on our ongoing clinical research studies, please contact our clinical research coordinator, Noni Graham:

About clinical trials:  www.cff.org/research/clinicalresearch
About medical research: www.cff.org/treatments/Pipeline

Pill That Hits A Cause Of Cystic Fibrosis Beats Expectations http://www.npr.org/blogs/health/2011/02/24/133995182/pill-that-hits-a-cause-of-cystic-fibrosis-beats-expectations?sc=emaf