54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis
Merry Christmas 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

Category:general -- posted at: 12:12pm EDT

Laurie McDonald, Social Worker at UNC Transplant Center Makes a Difference

Laurie McDonald Podcast


Title:
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 transplant.

  • Laurie is involved in lung, heart, liver, and kidney transplant social work.
  • 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
Category:podcasts -- posted at: 8:17pm EDT

Al Iannello Gives the “Gift of Breath? this Holiday Season

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 years old
* 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 in life!?

Direct download: CF-12-13-05-AlIannello.mp3
Category:podcasts -- posted at: 12:19pm EDT

Scott Johnson: The Tri-Athlete

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 shakes.
  • “Life is precious and I am living it to the fullest? states Scott
Direct download: CF-11-29-05-ScottJohnsonIII.mp3
Category:podcasts -- posted at: 3:02pm EDT

Scott Johnson: The Double Lung Transplant (Part II) 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 “blizzard?
  • 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 surgery
  • 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
Category:podcasts -- posted at: 12:03pm EDT

Scott Johnson: Growing up with CF (Part I) 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
Category:podcasts -- posted at: 2:32pm EDT

National Transplant Assistance Fund – “The Financial Link to Transplantation

National Transplant Assistance Fund -The Financial Link to Transplantation


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 this year.
  • "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
Category:podcasts -- posted at: 1:02pm EDT

Medical Information Template for your Jump Drive
Direct download: JumpDriveTemplate.doc
Category:podcasts -- posted at: 1:24pm EDT

“Jump Drive? for Better Health Care

“Jump Drive? for Better Health Care
 
Jerry Cahill interviews Dr. Jamie Wells on putting medical information on a “jump drive?

  • "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
Category:podcasts -- posted at: 1:32pm EDT

The “Pod Daddy? wants to hear your comments on the Cystic Fibrosis Podcast

The “Pod Daddy? wants to hear your comments on the Cystic Fibrosis Podcast.



Please click on comments or email me at jcahill@esiason.org and let me know your thoughts and what you want to hear more about.



Recent comments:

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.

“WOW!?

Category:general -- posted at: 12:49pm EDT

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