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

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?

  
  
  
   

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!?

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

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!?

  
   

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…  

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

Medical Information Template for your Jump Drive

“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.
   

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!?

Dylan Mortimer, at 25 "Keeps the Faith",in Battling CF and Focuses on Being an Artist and Graduate School

Jerry Cahill interviews Dylan Mortimer

* Diagnosed at 6 months of age in St. Louis
* Dylan also has a 23 year old brother with cystic fibrosis
* Growing up Dylan had a cough and was not hospitalized for a "tune up" until age 17.
* Dylan exercises at a gym doing the treadmill and weight training
* Dylan moved to NYC about a year ago and is attending the School of Visual Arts Graduate School and got married in May 2005
A newlywed Dylan believes "Love transcends all, even cystic fibrosis"
* "Although living with CF brings a lot more baggage and weighs you down, it makes you appreciate life "states Dylan.
* Dylan states: "My Faith in God helps me accept CF and gives me the energy to fight the battle"

Check out the September 12th issue of NEWSWEEK (page 64). There is an article about people with CYSTIC FIBROSIS who are living well into adulthood - more LIVING, BREATHING PROOF!!!!!! http://www.msnbc.com/id/9189605/site/newsweek

Jerry Cahill interviews Cris Dopher

"I live to Run and Run to Live" States Cris Dopher, 34 Years Old, Who is Taking Cystic Fibrosis by the Throat and Taking Control of His Life.

• Diagnosed at 4 years old due to “failure to thrive?
• Cris grew up in Southern California and Missouri prior to moving to NYC
• “My parents did not panic when they heard the news about my diagnosis with CF?
• Cris has 2 sisters and I brother
• Attended Missouri State University as an undergraduate and New York University for graduate work in Fine Arts.
• Mount Sinai in New York is Cris’ CF Center
• Biggest challenge: “Time spent on treatments?
• “Although having CF is a major wake-up call… I try to see things in a more positive way and that opens up new doors and possibilities…?
• Cris believes the most important factors that keep him healthy are: “Family support, great doctors, and his motivation to research?
• Cris completed the Flying Pig Marathon in Cincinnati, Ohio in a time of 5 hours 25 minutes.
• Cris plans on running the New York City Marathon in 2006 and his goal is sub 5 hours
• “You are not alone with CF and therefore I like to contribute to the CF community.

Maggie Talboy interviews Jerry Cahill - "Better Living Through Chemistry"

• “My life is not about the cystic fibrosis… it’s about living and enjoying everyday!?
• Jerry was diagnosed at age 11 after several hospitalizations for pneumonia.
• Jerry comes from a very athletic family that includes 4 brothers and 1 sister.
• Jerry attended Xaverian High School in Brooklyn, NY and then went on to the University of Connecticut where he competed in varsity track &  field specializing in the pole vault.
• CF is a challenge and a competition… I will beat it as best I can because life is NOT a controlled experience?
• Jerry states: “I do not have time to sit around with IMPENDING DOOM – go out and experience life and manage your disease?
• Jerry “exercises for life? and believes that “exercise can slow down the progression of the disease?
• Jerry believes in being pro-active with his health and is very involved in NUTRITION including: I.V. vitamin drips, “lot’s of vitamins and juicing? and of course “exercise?
• Listed for a double lung transplant at NEW YORK PRESBYTERIAN and also seen at UNIVERSITY of NORTH CAROLINA at CHAPEL HILL – Jerry is very happy with his TEAM of doctors.
• Maggie asked Jerry what keeps him going...? “A passion for life and being involved with people, watching people grow and most important giving of yourself – not materialistic things.
• Jerry states: “I have my FULL METAL JACKET on and am ready for the transplant…!

  
   

Jerry Cahill interviews Dr. Jamie Wells

• Dr. Wells grew up in Philadelphia before attending YALE UNIVERSITY majoring in American Studies.
• Dr. Wells attending JEFFERSON MEDICAL SCHOOL in Philadelphia where she started out specializing in brain surgery prior to focusing on
  pediatrics.
• “Medical school = one paragraph on cystic fibrosis… all training comes from hands on at a CF Center? states Dr. Wells
• As an infant with CF: “Burden on parents to understand and deal with everything all at once?
• Dr. Wells states: “The teenage years are the most challenging as the typical teenager is not compliant?
• “Doctors and CF patients must have a PARTNERSHIP?
• Dr. Jamie Wells states: Due to the prognosis of the disease, “cystic fibrosis patients are dynamic and grow up very very quickly…?
• Dr. Wells strongly believes: “People with CF need someone to look up to and see that there are people living at age 49…?
• Regarding Stem Cell Research: “I am an advocate of anything that is going to advance science?
• Dr, Wells Rx for people with CF: “Be consistent with med.’s and therapy, even when you are feeling well, and maintain an optimal nutritional state so you can fight infection?
• “I am honored and privileged to know patients and their families with this disease… people with CF really get what is about to be alive!?

The Boomer Esiason Foundation and the Ohio Society for Respiratory Care award $1500 in memory of Heidi Norris RRT.

Heidi Norris was a Registered Respiratory Therapist who passed away in 2004 after a long hard battle with cystic fibrosis that included a double lung transplant in 1999.

Michael will be attending Youngstown State University in Ohio and majoring in tge field of Respiratory Care "Sharing the Breath of Life with Others"

16 year old Erin Keitges has overcome cystic fibrosis to become one of Nebraska's top distance runners. Her inspiring story is coming soon to Jerry Cahill's Cystic Fibrosis Podcast.

I recently had doctor appointments at the University of North Carolina Adult CF Center in Chapel Hill. I was very impressed with the precautions that the center is taking to avoid the spread of infection among CF patients. The center has a phenomenal hand out entitled: "INFECTION CONTROL". I highly recommend EVERYONE read this memo. The Boomer Esiason Foundation has placed it up on their website: www.esiason.org. Once you are on the site click on "NEWS", go to "CF RESOURCES" and click on "INFECTION CONTROL". The Adult CF Center at UNC is the most impressive and professional adult center that I have encountered in my 49 years living with CF.

Ashley White, Awaiting a Double Lung Transplant at Duke Medical Center, Looks Forward to Being Able to "Breathe Again"

Jerry Cahill interviews Ashley White

• Ashley White was diagnosed with cystic fibrosis at 4 months of age.
• Ashley has 4 sisters and 2 brothers, one brother also has CF.
• Ashley attends home school daily.
• Medication, therapy, more medication, and more therapy Ashley spends many hours a day being compliant to here routine trying to stay healthy along with nightly tube feeding.
• Ashley enjoys scrap booking and spending time with her friends and family.
• Listed for a double lung transplant in March 2005 after being on oxygen 24/7 and when her FEVs dropped below 24.
• Ashley, along with her mom, had to face and make the big decision regarding the double lung transplant surgery.
• My Mom has been the biggest influence on my life
• KEEP GOING! Ashleys advice to others with CF and facing a transplant.
• Without my Mom, who pushes me, I may have giving up
  
   

Lisa White's Daughter Awaits a Double Lung Transplant at Duke Medical Center and Her Faith & Family Give Her Strength

Jerry Cahill interviews Lisa White

• Lisa’s daughter is awaiting a double lung transplant at Duke Medical Center in Durham, North Carolina.
• Lisa has the endless support from her family, friends, and faith.
• Lisa stresses? “Stay positive? and keep on “living life? regardless of the obstacles.
• “Keep researching EVERYTHING on cystic fibrosis and lung transplants? and most of all be “PRO-ACTIVE? and “VIGILANT?
• Lisa states: “Ashley and I never give up, you must have the SURVIVAL INSTINCT or LIFE WILL STOP!?

Stay tuned for an empowering interview with 17 year old Ashley White as she awaits a double lung transplant at Duke Medical Center and another interview with her mom, Lisa White who gives her daughter much love, strength, and support.

Jerry Cahill interviews Amy Purdy


Amy Purdy has been a social worker at Saint Vincent’s CF Center, in New York City, for over 8 years and “loves helping people?

• Amy grew up in Long Island, NY
• SUNY Albany undergraduate degree
• Adelphi University graduate degree in Social Work
• St. Vincent’s has over 170 cystic fibrosis patients where Amy works full time for the center.
• Amy has great relationships with her patients and knows “what there favorite flavor is in bubble gum?
• Amy deals with various issues including; medical insurance, medication compliance, educating families on CF, transplant issues, and “just being there? for the patients?.
• Amy states: “Teen years are critical for medication/therapy compliance, as this sets the stage for your future health?.
• St. Vincent’s has a “phone a friend? program for CF teens to speak to adults with CF
• Amy’s goal: “Take the burden off the young adults by becoming like a personal assistant?
• Amy’s advice to families: “Use ALL the resources at your CF Center?

I just received my new T-shirt that says "CF Sucks" and it does...
I have been on iv antibiotics for over 4 weeks and still have a lot of congestion... I am at the point these medications don't work - WE NEED NEW DRUGS!!!

Kristy Denninger Enjoying Life at age 28 with Cystic Fibrosis

Jerry Cahill Interviews Kristy Denninger

Kristy Denninger is 28 years old and has a phenomenal support team of family, boyfriend, and friends.

• Kristy was diagnosed with CF at 3 months do to “failure to thrive?.
• Kristy at age 14 also diagnosed with Diabetes.
• Degree in Social Work from St. Thomas College in New York.
• Kristy enjoys: “Family, Friends, and Vacationing?
• “Relaxing on the Beach is great for my Spiritual and Physical Health?.
• Kristy raised over $10,000 this year for CFF “Great Strides?.
• Kristy states: “Exercising on the treadmill for 20 minutes per day helps keep me healthy?.
• Kristy believes in “staying positive? and is empowered by the online Cystic-L Support Group.

Get ready for MORE!!! New and informative interviews set with vivacious, Kristy Denninger, 28 years old with CF and Amy Purdy, CF Social Worker at prestigious St. Vincent's CF Center

Jerry Cahill interviews Laura Cianci


Laura Cianci has been a Home Infusion Nurse for the past 16 years working with patients with acute illnesses. Home infusion therapy offers flexibility to both the patient and the nurse.

• Laura has many CF patients that receive numerous antibiotics and steroids by IV.
  Patients can start home infusion care as young as 18 months
• “I love my patients, they are the reason why I do what I do?
• Laura states: “It’s important to mobilize the secretions, not only through IV antibiotics but also through postural drainage?
• Laura believes CF patients need to be more pro-active in their care.
• “I have learned to appreciate life more after working with my patients and seeing the fortitude they have for life…
• Laura states: CF has an effect on the entire family

   

Sorry for the delays but I have to start some iv antibiotic therapy today of Ceftaz and amikacyn - thank God for ports as I am tired of getting stuck with needles for iv's. Just to let you know I will have the new interviews up and running by next Tuesday Interviews: Laura Cianci - homecare iv infusion nurse and K - 32 year old male with CF

I will have some new and exciting interviews coming your way within the next week. I am finalizing an interview with a 32 year old young man with CF and another chat with a CF doctor that has been involved with CF for over 50 years and has experienced a lot of transformation.

Cystic Fibrosis Podcast Intro (38:05 Minutes)

Jerry Cahill Interviews Michael Marten

About three years ago Michael Marten received a double lung transplant at Duke University. In this interview Michael discusses his life experiences both pre and post transplant with host Jerry Cahill.

Michael Marten Background Information

• Age 45 -will be 46 in May
•  Those crazy "Mist Tents"
• 4 Years Old when diagnosed
• Fairly normal life until graduate school (St. Johns University).
• 1991- Graduated Grad School
• 1993- Started to Repeated infections (Disability from work)
• 1996- First put on oxygen
• 1999- Put on oxygen full-time
• 2001- Duke University Evaluation
• 2002 -July, Michael Moves to North Carolina with Family
• 2002-August 1, Goes to hospital for transplant
• 3 Years Post Transplant-Still Going Strong

Importance of Family Support Mechanism

Jerry Interview Questions

Allergy season is kicking in and I always get a lot more wheezing this time of year. I have found that doing aerosol treatments of hypertonic saline (3% and 10%) 6 times per day vs. 4 times helps keep my airways a little clearer.

Stay tuned later this week for an exciting interview with a cystic fibosis individual that is the recipient of a double lung transplant. Learn first hand what one person has gone through pre and post transplant.

I'm back... I've been out of commission for a few days due to developing some growth of Aspergillus fungus in my lungs. The doctors have started me on some medications that have caused some bad reactions like blurred vision, red face, and blisters on my lips. Besides these side effects I am doing fine and "keep on truckin"

Show Notes 4-20-2005

1. DISCLAIMER:
The views expressed on the Cystic Fibrosis Podcast are those of Jerry Cahill and his guests, and not necessarily of the Boomer Esiason Foundation.

NOTHING ON THE CFPODCAST SHOULD BE CONSIDERED MEDICAL ADVICE.
SUCH ADVICE CAN ONLY BE GIVEN BY A PHYSICIAN WHO IS EXPERIENCED WITH CYSTIC FIBROSIS.
THE CONTRIBUTORS ON THIS PODCAST CANNOT BE HELD RESPONSIBLE FOR ANY DAMAGE WHICH MAY RESULT FROM USING THE INFORMATION ON THIS PODCAST WITHOUT PERMISSION OF THEIR MEDICAL DOCTOR

2. Dave Rimington Intro
Introducing Jerry Cahill and Natalie Stout

3. Intro-Jerry Cahill's Cystic Fibrosis Podcast

4. About Jerry:
Jerry and Natalie discuss Jerry's background and his involvement with the Boomer Esiason Foundation.

5. For more information on cystic fibrosis go to: www.esiason.org

6. Email Comments/Questions to podcast@esiason.org

Welcome! My name is Jerry and I am 48 with cystic fibrosis and listed for a double lung transplant. My goal, while my health permits, is to share with all of you my ups & downs with CF and how I have "beaten the odds" and "living life to the fullest". Stay tuned for information as I get more familiar with the system and I welcome your comments.