Are you concerned about maintaining nutrition but even more concerned about getting a feeding tube? This is a topic that you certainly should discuss with your doctor, but it can also help to get the perspective of one of your peers with CF. Gunnar Esiason has provided that opportunity.
Gunnar has produced a number of videos to discuss his experience with the gastric feeding tube. To date, he has released three videos under the caption "Own Your Feeding Tube." These offerings are:
Episode 1: First day home - showing how easy it is to use a feeding tube and demonstrating the ENFit connection system
Episode 2: What can I expect from my feeding tube - covering some frequently asked questions and some of the benefits of feeding tubes
Episode 3: Normalcy with the feeding tube - how to maintain a physically active young adult life style
These links have also been added to our Information Resources, Life with CF section under the "Daily Life" heading.
The Boomer Esiason Foundation offers financial assistance for people living with CF who are pursuing lung transplantation. A new link - Tx Grants - has been added to our Information Resources, Financial Assistance page. Here is the explanation provided by BEF:
While the cost of transplantation is typically covered by most insurance companies, travel and relocation costs are typically absorbed by the patient’s families. The BEF Lung Transplant Grant Program is one way the Foundation works to give back to people with CF in the here and now, by helping families pay for the expenses that are not covered by their insurance.
Possible expenses to the recipient and family include, but are not limited to: patient and family costs for transportation to and from the surgery site, and to and from clinic visits after the transplant; and housing, food, and living expenses associated with relocation to the transplant site. Last year, the Foundation awarded nearly $100,000 in transplant grants.
Cystic Fibrosis Patient Assistance Foundation (CFPAF), a subsidiary of the Cystic Fibrosis Foundation, is a non-profit organization that helps people with CF afford the medications and devices they need to manage complications of their disease. CFPAF not only helps with co-pay and co-insurance costs but also connects patients and families up with available pharmaceutical company assistance as well as state and federal entitlement benefits if they are eligible.
A link to CFPAF has been added to our Financial Assistance resources page.
The Cystic Fibrosis Foundation (CFF) provides a wealth of information through its Patient Assistance Resource Library (PARL). To help you keep up with the contents of this site, we have added a page to our Information Resources section that lists new and update items in the PARL. Updates will be added to this page based on notifications from CFF. We will also publish a "New Links" post to let you know new information is available.
Have you ever wondered how to get in touch with the doctors or other staff at the Adult CF Center? Or how your call will be handled? The answers to those questions are now on our web site.
The center staff started the process by documenting the flow of calls through their office, noting the differences between: (a) calls received during normal office hours versus off-hours calls, and (b) calls classified as urgent versus routine. CFFC consulted on this project to provide the caller's perspective. The result - three new pages:
Contacting the Adult CF Center provides background and certain basic information like the phone number, office hours, and descriptions of urgent and routine issues.
Adult CF Center - Calling during Office Hours describes the how calls are handled (including the response to your call) when you call while staff are available at the Culver Medical Group.
Adult CF Center - Calling Off Hours describes the how calls are handled (including the response to your call) when you call outside the normal operating times at the Culver Medical Group.
You can access the general page through the menu at the top of each page by hovering your cursor over "Info Resources" and then clicking on "Contacting the Adult CF Center." The detailed pages can be accessed through links in the text of the general page or using the supplemental menu in the right hand column of each of these pages.
No need to feel sorry if you missed the 34th Annual Kit Taylor Memorial Lecture. Thanks to the Pediatric Pulmonology team at Golisano Children's Hospital (our CF Center), you can watch a video of Dr. John LiPuma's presentation on "Infection Prevention in CF." Just click here to access the video. A link to this presentation has also been added to our Information Resources section on the Medical Care page.
The presentation, which runs an hour and ten minutes, starts with a general description of infection in CF and then covers the Infection Protection and Control Policy adopted by the CF Foundation in 2013. As a member of the committee that produced those guidelines, Dr. LiPuma shared first-hand knowledge of: the information used to develop the guidelines, the process for producing the guidelines, the rationale for changes over time and the ways guidelines are put into effect.
As an epidemeiologist, Dr. LiPuma was very informative in his discussion of the techniques to used to discover the source of infections and how they are spread. Of particular relevance to the new guidelines, he noted the improved understanding of the distances covered by, and longevity of, bacteria in droplet transmission.
Interesting side note: Using video-conferencing technology for the Kit Taylor Lecture implements one of the recommendations to reduce the risk of spreading infection through face-to-face contact.
Just like sunshine breaking through the clouds can brighten our mood, a wish coming true can buoy the spirits of a child facing the challenges of CF. That's the driving principle behind the Make-A-Wish Foundation. As stated on their web site:
"A wish come true helps children feel stronger, more energetic, more willing and able to battle their life-threatening medical conditions. For many, the wish marks a turning point in the fight against their illnesses. Doctors, nurses and other health professionals say, the wish experience works in concert with medicine to make their patients feel better emotionally and even physically. That is why wishes matter. That is why we grant wishes."
The Make-A-Wish Foundation grants wishes (on the average of one every 38 minutes) to children between the ages of 2½ and 18 who has been diagnosed with a life-threatening condition, i.e., a progressive, degenerative or malignant condition that is placing the child's life in jeopardy. Unfortunately, children with CF meet this criterion.
Each granted wish starts with a referral. A parent, guardian, family member, medical professional - anyone with detailed knowledge of the child's current medical condition - can submit a referral online. To help with that process, we have added links to the "Refer a Child" page in our Information Resources section on both the "Living with CF" (under Brighten the Day) and "Financial Assistance" (under Living with CF) pages.
For more information about the Make-A-Wish Foundation you can visit their web site - http://wish.org/ - or contact the Rochester regional office by phone (585-272-9474), by e-mail (WNYChapter@wny.wish.org) or through their web site (wny.wish.org).
New and updated information has been added to our Information Resources pages.
Living with CF
Planning for College and Beyond - a webcast produced by the Boomer Esiason Foundation dealing with CF in adulthood
CF Living (update) - providing links to a wide variety of resources arranged by age-based categories
An Introduction to Postural Drainage and Percussion - a CFF consumer fact sheet on PD&P techniques
CF Patient Assistance Resource Library - a CFF library of fact sheets, forms and other informational resources
A new page for topics that are relevant to CF although not specifically about CF.
Plain Language Thesaurus for Health Communications
NOVA - Cracking the Code of Life - 2 hour documentary on the genome project
A new link has been added to our Medical Care resource page that launches a recorded webinar. The webinar provides information on the various programs covered under the CFF Patient Assistance Resource Center including: the Patient Assistance Foundation, legal information hotline, and case management and technical assistance. This link will open a dialog box that gives you the option of playing or downloading the video.
You can also launch the video from here: CFF-Patient-Assistance-Resource-Center
The UnitedHealthcare Children’s Foundation (UHCCF) is seeking grant applications from families in need of financial assistance to help pay for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Click here to access the UHCCF application page. This link has also been added to our Financial Assistance page in the Information Resources section.
Here is some information from the UHCCF site:
The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans.
The grants provide financial relief for families who have children with medical needs not covered or not fully covered by their commercial health benefit plan. The Foundation aims to fill the gap between what medical services/items your child needs and what your commercial health benefit plan will pay for.
If a grant is approved by the Regional Board of Directors for your child, the grant will help pay for approved medical services/items after your commercial health benefit plan submits payment, if any. The grant funds are not paid to you or the child outright - you work with the Foundation on submitting invoices/bills for approved medical services/items after your commercial health benefit plan submits initial payment (if any) to the health care provider.