Sat, 24 December 2005
It's people like you that make life so special...
Wishing ALL moments of pure happiness, health, and love this holiday season
Holiday Photo Album
-- posted at: 12:12pm EDT
Fri, 23 December 2005
Laurie McDonald Podcast
Laurie McDonald, Social Worker at UNC Transplant Center Makes a Difference
Jerry Cahill interviews Laurie McDonald, Transplant Social Worker at UNC Medical
Center in Chapel Hill, North Carolina. Laurie works closely with the medical
team, patient, and family to make sure everything runs smoothly with the
- Laurie is involved in lung, heart, liver, and kidney transplant social
- Cystic Fibrosis disease progression is the reason for over 50% of lung
transplants at UNC.
- “Financial issues as well as re-locating and waiting for the transplant
are the biggest challenges for patient and family? states Laurie
- UNC Transplant Center offers support groups to patients and family that
is both educational and good forum for stress release.
- Laurie recommends setting up a “fundraising team? ASAP once you are
listed to help ease the financial burden of unexpected expenses.
- Laurie’s advice:
1. “Live everyday /minute of your life and don’t count on transplant to turn
your life around?
2. “Prepare Financially?
3. “Exercise – the surgery and recovery will go smoother?
Direct download: CF-12-23-05-LaurieMcDonald_copy_2.mp3
-- posted at: 8:17pm EDT
Wed, 14 December 2005
Al Iannello Gives the “Gift of Breath? this Holiday Season
Jerry Cahill interviews Al Iannello.
Al is 41 years old with cystic fibrosis and another adult “living, breathing,
and succeeding with CF. Al Iannello recently donated a therapy vest to another
individual in need with CF.
* Al Iannello was diagnosed at birth after he “died at birth?
* Al has 1 brother and 2 sisters and his older sister also has CF and is 48
* Growing up Al was very involved in baseball, football, and basketball.
* Al states: “ I just deal with my condition and live a normal life?
* “I come from a very close family and they ALWAYS are by my side?
* Al is always positive and a fighter - “having CF is not the end of the world?
* “Don’t live in the North Pole and be isolated, you should be part of and get
involved in the community? states Al Iannello.
* Al’s recommendation: “Do what you have to do to stay healthy and move forward
Direct download: CF-12-13-05-AlIannello.mp3
-- posted at: 12:19pm EDT
Mon, 28 November 2005
Scott Johnson: The Tri-Athlete (swim, bike, run)
Jerry Cahill interviews Scott Johnson about training for an “Ironman? Triathlon
Scott Johnson at age 33 has been living with CF, living 4 years out with a
double lung transplant, and now living with the accomplishment of competing in
over 18 triathlons.
Scott recently competed in the FLORIDA IRONMAN – the most elite of triathlon
competitions – on November 5th in Panama City, Florida.
- IRONMAN Triathlon consists of swimming 2.4 miles, biking 112 miles, and
finishing with a 26.2 mile run
- Scott states: “Prior to my transplant, I made a list of things I’d like to
accomplish and a triathlon was one of my wishes?
- “One year after my double lung transplant I started training hard?
- Scott is sponsored by the Wilmington YMCA
- Scott trains 6 days a week for a total of 30 hours.
- Additional nutritional supplements include pre-natal vitamins and protein
- “Life is precious and I am living it to the fullest? states Scott
Direct download: CF-11-29-05-ScottJohnsonIII.mp3
-- posted at: 3:02pm EDT
Mon, 14 November 2005
Scott Johnson: The Double Lung Transplant (Part II)
Jerry Cahill interviews Scott Johnson about his double lung transplant
Scott Johnson is 33 years old with cystic fibrosis and had a double lung
transplant 4 years ago on September 15th 2001 at University North Carolina
Medical Center in Chapel Hill, North Carolina.
- Scott grew up in Jacksonville, North Carolina
- At 27 years old with a sinus infection Scott’s lung x-rays looked like a
- Scott was listed for 2 years, the surgery was 9 hours, and he was
hospitalized for 17 days.
- Scott prepared for the transplant by exercising on a treadmill and
weights and going to support groups.
- “Exercise and a Positive Attitude? helped Scott make it through the
- Scott states: “My quality of life with my new lungs is better than
living with CF?.
- Scott words of encouragement for others listed for a transplant:
“Maintain a positive outlook and keep exercising!?
Direct download: CF-10-14-05-ScottJohnsonII.mp3
-- posted at: 12:03pm EDT
Fri, 4 November 2005
Scott Johnson: Growing up with CF (part 1)
Jerry Cahill interviews Scott Johnson in 3 parts:
1. Growing up with CF
2. The Double Lung Transplant
3. The Triathlete
Scott Johnson is 33 years old with cystic fibrosis and training hard in sports
regardless of the fact that he has CF and underwent a double lung transplant 4
years ago at UNC Chapel Hill, North Carolina.
- Scott grew up in Jacksonville, North Carolina
- Diagnosed with CF at 2 months due to pneumonia and a lung collapsing
- Scott was always embarrassed about hi coughing growing up but still was
very involved in sports.
- Scott states: “CF has shaped and played a MOJOR role in my life growing
up – people with CF don’t make plans for the future…?
- “Exercise and a Positive Attitude? these are Scott’s most important
factors to maintaining Scott’s health.
- Scott states: “The biggest challenges facing adults with CF is insurance
and medical expenses as people are living a lot longer with cystic fibrosis?
- Scott believes, “you have to own it and manage your CF?
- “I have CF but it does NOT have me…
Direct download: CF-11-04-05-ScottJohnson_copy_2.mp3
-- posted at: 2:32pm EDT
Fri, 21 October 2005
National Transplant Assistance Fund -The Financial Link to
Jerry Cahill interviews Lynne Samson, the Executive Director of the NTAF on how
they can help with fundraising for a costly lung transplant.
Mission Statement: To help raise funds for transplant and catastrophic injury
patients by providing compassionate support, education and expertise to them,
their families and communities.
- NTAF is a nonprofit 501 (c) 3 charitable organization and contributions
to NTAF are tax-deductible. NTAF was founded in 1983
- Lynne states: "it's better to start fundraising as soon as you are
listed at a transplant center"
- Lynn states: "people in the community love to support a cause and this
gives emotional support to the patient and family going through the crisis"
- Fundraising events include: golf outings, spaghetti dinners, chicken
fries, dances, and car washes, to name a few.
- Money can be used for insurance co-pays, medications, re-locating for a
transplant, meals, lodging, and living donor costs.
- NTAF has over 1200 active patient accounts and has risen over $4 million
- "The goal of NTAF is to help the patient and family feel financially,
emotionally, and mentally secure and that through the community support they
will feel cared for"
National Transplant Assistance Fund
Direct download: CF-10-23-05-LYNNESAMSON.mp3
-- posted at: 1:02pm EDT
Fri, 14 October 2005
Medical Information Template for your Jump Drive
Direct download: JumpDriveTemplate.doc
-- posted at: 1:24pm EDT
Thu, 6 October 2005
“Jump Drive? for Better Health Care
Jerry Cahill interviews Dr. Jamie Wells on putting medical information on a
- "Jump Drive?: also know as a USB drive or flash drive is a “plug-and-play?
portable storage device that is lightweight enough to attach to a key chain
that cost under $20.
- Dr. Wells states: “jump drives empowers us in our health care and enables
patients to be their own advocates
- Medical information & records can be stored on a “jump drive? and this is
extremely important to someone with a chronic disease or medical condition for
doctor visits and emergency room visits.
- “Jump Drives? contain such information as emergency contacts, physicians
contacts, past medical history, allergies/adverse effects, current
medications, and laboratory test information.
- The BOOMER ESIASON FOUNDATION will be putting a “Jump Drive? Medical
Template up on their site (www.esiason.org) and offering the drives to
individuals with CF with proper documentation.
Direct download: CF-10-06-05-JamieWells.mp3
-- posted at: 1:32pm EDT
Wed, 21 September 2005
The “Pod Daddy? wants to hear your comments on the Cystic Fibrosis Podcast.
Please click on comments or email me at firstname.lastname@example.org and let me know your
thoughts and what you want to hear more about.
I really love the podcasts! These things are exactly what kids and young adults
with CF need to see and hear. I can’t tell you how often I fell alone in my
fight with CF. Your site, I think, is out there to give the same support that I
found in my family. This site has so much hope in it! (Ohio)
I really like your site – it’s very informative. (Louisiana)
I am impressed with the podcasts and would like to hear more about CF
individuals with digestive, kidney, and liver issues.
I found the podcasts ‘fascinating? It was wonderful to listen to the
inspirational stories of others LIVING with cystic fibrosis. I found it
incredible how open and honest the people you interviewed were.
-- posted at: 12:49pm EDT