Agenda
Wednesday, August 15, 2018


Program Planning Work Group

These events would not be possible without volunteers from the CF community: Somer Love (Co-Chair), Laima Manomaitis (Co-Chair), Ashley Wilson, Brenna Maas, Carl Riedy, Elizabeth Amber, Fanny Vlahos, Kasey Raffensperger, Katie Fielding, Leah Chase, Samantha Rick, Sean Sullivan, Tara Goodwin

6:30 - 7:00 p.m. ET 
Keynote: Three Journeys, One Goal

Three individuals share their transplant experience. Hear from a pre-transplant adult with cystic fibrosis tackling the transplant world, a post-transplant adult with cystic fibrosis discussing the challenges that were overcome and adjusting to a new normal, and a spouse of an adult with CF who supported his wife through the transplant process. 

Brad Dell
Lea Faraone
Ray Poole
7:00 - 7:15 p.m. ET
Break 
7:15 - 8:20 p.m. ET
Breakout Sessions Round 1
  • Transplant 101
    Do you feel like you need to be a doctor, social worker, dietitian, financial expert, and more when going through transplant? Attend a presentation with Dr. Joseph Pilewski, assistant professor of medicine and pediatrics at the University of Pittsburgh, to get a better grasp on the pre- and post-transplant process. We know how overwhelming transplant is with new doctors, medical jargon, medicines, and tests this session will help you get the basics under control. Dr. Pilewski and a post-transplant patient will explain all aspects of transplant and answer your questions. This session will be recorded and be made available to registrants upon request after the event.
    Audience: Open to all
    Format: Presentation and Q&A with Dr. Joseph Pilewski
     
  • Life While Being Listed
    In a group discussion led by one pre- and one post-transplant individual, we’ll talk about coming to terms with the “T” word and what life is like on the list. Hear about their various challenges and unexpected connections that were part of their journey. The second half of this session will be for questions and discussion.
    Audience: Pre-transplant adults with CF
    Format: Group discussion
     
  • Why I Got My Transplant

    The decision to get a transplant can be one of the most difficult decisions for people with CF and their families. Join for storytelling time from a few different individuals who have made the decision. Learn what pushed people to make the decision and what the most important decision factors are for you. Share your hopes and dreams for life after transplant and what pushes you to go for it!

    Audience: Open to all

    Format: Storytelling panel and discussion

  • Transplant Prep

    Group discussion led by individuals who have gone through transplant prep, received a transplant, or serve as a caregiver. Learn about how they got ready or are planning on getting ready for the big day. Hear about their experiences with fundraising, handling insurance, social workers, and becoming emotionally and physically ready. We will also discuss dry runs and what to pack in your “to go” bag for the hospital. The second half of the session will be open to questions and discussion. 

    Audience: Open to all

    Format: Storytelling panel and discussion
     

  • Post-Transplant Life

    You’ve had your transplant, and now it is time to get back to life. Socially, physically, and professionally – life is much different than before. In this breakout session, come ready to share your experiences and challenges adjusting to your new life after a lung transplant.

    Audience: Post-transplant adults with CF

    Format: Group discussion
     

  • Caregiver: The Unsung Hero

    A group discussion for any caregiver in the beginning, middle or post-transplant phase. Share your experiences of caring for a loved one during the transplant journey and discuss everything from how to deal with becoming a new caregiver to tackling the transplant world. Come discuss self-care and the emotional and mental health of being a caregiver as well as how to advocate and assist your loved one.
    Audience: Caregivers
    Format: Group discussion

8:20 - 8:35 p.m. ET
Break 
8:35 - 9:40 p.m. ET
Breakout Sessions Round 2
  • Is Transplant Right for You?

    To transplant, or not to transplant, that is the question. Forget Pandora's box, in this session, we are opening the transplant box. Join for an open, candid discussion about transplant – from the anxiety and fear you feel when transplant is first suggested, to deciding if you even want to embark on the transplant journey. If you're feeling lost in transplant limbo, know that you're not alone! Come connect with others who can truly relate to the often overwhelming pre-transplant life.

    Audience: Pre-transplant adults with CF

    Format: Group discussion
     

  • The Evaluation

    Learn about the world of evaluation, from picking a center that’s right for you to doing endless tests. Not every center is the same, so you may encounter different ways they perform tests as well as the information they give you pre- and post-transplant. Post-transplant patients and a transplant coordinator will share their different experiences and answer questions. Join if you or a loved one have been discussing getting evaluated with your doctor or are in the process now.

    Audience: Open to all

    Format: Storytelling panel and Q&A
     

  • Post-Transplant, Looking Back

    Hear from people who have had a transplant as they discuss what they wish they knew before getting the transplant and provide some tips and tricks to get through the process. Gain insight into the overall transplant experience and find out if there is anything they would change about their transplant process. There will be time for questions and an open discussion.

    Audience: Open to all

    Format: Storytelling panel and discussion
     

  • Managing Care Post-Transplant

    Join other post-transplant CF adults in an open discussion about the ins and outs of post-transplant care, including keeping up with appointments and lab work after the transplant, anti-rejection medications, side effects, and more. Come share your tips and tricks to adjusting and managing a new care routine.

    Audience: Post-transplant adults with CF

    Format: Group discussion

  • Real Talk: The Good, The Bad, The Ugly
    In this storytelling panel, we’ll discuss the good, the bad, and the ugly – things most people don’t want to talk about. We’ll bring to light the struggles that come along with this major surgery, including rejection, relocation, second transplants, dry runs, and the fact that transplant is not a cure but a temporary solution. There will be time for questions and an open discussion after the storytelling.

    Audience: Open to all
    Format: Storytelling panel and discussion

     

  • You & Your Caregiver

    Hear from a few caregivers and people with CF as they discuss how to navigate the patient and caregiver partnership while taking on a double-lung transplant, and share stories about how they communicate and keep a positive attitude. Other topics will include listening to your care team, learning to lead a normal life, being on oxygen 24/7, resolving issues, coping with dry runs, and much more. There will be time for questions and an open discussion at the end.
    Audience: Open to all

    Format: Storytelling panel and discussion
     

  • Not Your Average Caregiver
    This storytelling session is specifically geared towards non-traditional caregivers: siblings, spouses, partners, friends and family members. A sibling, girlfriend, and spouse will share their stories of why and how they stepped into the caregiver role, and how they navigated the emotional and physical aspects, from how to take care of yourself even when you might feel guilty, to becoming as prepared as possible for the big day and days after. There will be time for questions and an open discussion.

    Audience: Caregivers -- specifically spouses, siblings, and friends.

    Format: Storytelling panel and discussion

9:40 - 9:45 p.m. ET
Break 
9:45 - 10:00 p.m. ET 
Closing: It Takes A Village
Hear from a post-transplant adult with cystic fibrosis and her family about how together they have tackled the transplant world. This dynamic team continues to  push forward and celebrate every moment even when faced with the emotional and physical challenges transplant presents.