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
  • Pharmacist

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


Events

  • Tailgate Kickoff to a Cure is an annual fundraising event coordinated by the CF Foundation through their Jacksonville office. The fun event offers lots of great food, silent auction, and football. It is held each fall in the Touchdown Terrace at Ben Hill Griffin Stadium, University of Florida Campus. If you are interested in helping with or attending this event, contact the Jacksonville office at 904.733.3560.
  • Great Strides: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation’s largest national fund-raising event. Tens of thousands of co-workers, friends, and family come together each year as one community for one cause to help find a cure for CF. In 2007, more that $34 million was raised to support vital CF programs. If you are interested in helping with or attending this event, call the Jacksonville office at 904.733.3560.

Meet the Team

  • Jorge Lascano, M.D. – Director Adult CF Program Associate Director
  • Cesar Trillo, MD – Adult CF Assistant Director
  • Julio Leey, MD– Adult CF Endocrinologist
  • Giuseppe Morelli, MD– Adult CF Hepatologist
  • Matt Barnes, PA – In-patient Nurse Practitioner
  • Sandra Baumstein, PharmD – Ourpatient Pharmacist
  • Palma Schmidt, ARNP – Outpatient Clinic Nurse Practitioner
  • Tracy Tanner, CPT, CPFT – Outpatient Respiratory Therapist
  • Carlos Torres-Rios, RRT – Inpatient Respiratory Therapist
  • Wanda Nichols, RN – Adult CF Program Coordinator
  • Shenika Vilton, BS – Assistant Adult CF Program Coordinator
  • Noni Graham, MPH – Clinical Research Coordinator
  • Heather Simpson – CF Social Worker
  • Jennifer Hillan – Dietitian
  • Shenetta Mann, LPN – Pulmonary Triage Nurse
  • Amanda Lazenby– CF Administrative Support Staff

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

Adult CF Center Quarterly Newsletter

Summer 2017 Newsletter

Fall 2017 Newsletter

Winter 2018 Newsletter 2

Spring 2018 Newsletter

Summer 2018 Newsletter


News and Events

Tailgate Kick Off!

Date- Saturday, October 13, 2018

The Adult Cystic Fibrosis Center hosted their inaugural North Central Florida Cystic Fibrosis Conference on Friday March 9th, 2018. With an audience of about 150 people from North and Central Florida, the event explored CF care and management from the care team’s perspective, as well as a patient’s perspective. Speakers included Dr. Jorge Lascano, Dr. Julio Leey, Dr. Guiseppe Morelli, and guest speakers Dr. Marcia Katz (UCF) and Nikolas Job (individual with Cystic Fibrosis). A one-hour airway clearance training was also conducted. To view the day’s presentation, please visit https://mediasite.video.ufl.edu/Mediasite/Catalog/catalogs/-north-central-florida-cystic-fibrosis-conference-2018


Visiting Our Center

Location:

Address:

  • Medical Plaza/Cancer Pavilion, 2000 SW Archer Rd. Gainesville, FL 32610

Hours:

  • CF clinics are held each Wednesday of every month from 9:00 a.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)
  • Copy of CF Original Diagnosis
  • Two years worth of records to include: PFT, sputum cultures, hospitalizations, bone density results, oral glucose tolerance test, lab test and CXR/chest CT
  • Co-payment 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.

Services Provided by Our Care Center

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

  • CF visits as recommended by the CF Foundation
  • Yearly pharmacist assessment
  • Diagnostic testing such as:
    • DEXA Scan (every 3 years)
    • Yearly 2 hour Oral Glucose Tolerance Test (OGTT)
    • Quarterly Sputum cultures
    • Yearly Blood work (liver, kidney, vitamins)
    • Chest CT/Chest x-rays (every other year)
    • Spirometry function tests with each clinic visit
    • Yearly Nutritional assessments
    • Yearly Social Worker assessments
    • Patient education
    • Yearly 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