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CFFC Facebook Posts – July 2019 – Part 1

07/01/2019An Emotional Reunion With My Donor’s Family – Lung transplantation is emotionally complex. That complexity increases if the recipient gets to meet the donor’s family.

07/02/2019Diet Tips from a ‘Dying’ Girl – This is not a blog about what to eat. It is an honest look the emotions generated by the body CF gives you. It is one piece of the mental health struggle of CF.

07/03/2019Food and CF – Caregivers’ Perspective – Unlike yesterday’s post, this blog on food includes observations from Canadian CF caregivers for maintaining nutrition.

07/04/2019Bonding With My Son During Daily Treatments – On one of the biggest family holidays, this story shows how the challenges of CF can build a stronger family unit.

07/05/2019Adding CF-specific Variables More Accurately Prioritizes Patients on Lung Transplant Waitlist, Study Says – This study raises two questions. (1) What is the process for changing the evaluation criteria? (2) Are there factors for non-CF individuals on the wait lists that could also affect their status? Still, it is an interesting finding.

07/06/2019Time to Tee Up for the 2019 Living with CF Golf Tournament – Come join us on 9/14 for a fun time that supports CFFC’s mission.

07/07/2019Staying Positive After My First Hospitalization – Like everything else with CF, hospitalizations are different for everyone, but this story probably sounds familiar.

07/08/2019Research blast on the ABC of the CF lung – This article explains the science behind the familiar defects in CF lungs – and research being spurred by that knowledge.

07/09/2019 – Is it Ethical to Have Another Child Once You’ve Had One with CF? – Challenging diseases raise challenging moral questions for which there may be no universal “right” answer, but they deserve consideration.

07/10/2019Jumping Over My Fear to Join a CF Clinical Trial – Last month we posted thoughts on clinical trials expressed by a patient and a parent from Canada. Here is a first-person perspective from the US.

07/11/2019 – Scott PelleyCF Foundation Tribute – This tribute was published a year and a half ago, but it is a good follow up to yesterday’s testimonial on participating in clinical trials.

07/12/2019Coverage Tips for Costly Drugs (and other musings on paying for medications with CF) – Part 2, Medicare – Two weeks ago we posted the first of a three part series on covering drug costs. Here is the link to part 2 and the part 3 link is in the following comment.

07/12/2019Coverage Tips for Costly Drugs (and other musings on paying for medications with CF) – Part 3, Accumulator Adjustment Third Party Assistance Programs

07/13/2019When Anxiety Attacks – This blog post reminds us that mental health is a big part of CF life.

07/14/2019AzurRx BioPharma Launches Phase 2 Trial Testing MS1819-SD Combined With PERT for EPI – This article reminds us that lungs are not the only organ affected by CF. This research could help improve nutrition which, in turn, aids the effectiveness of other treatments.

07/15/2019A Resource Guide For When the Crippling Stress of CF is About to Take Over – This is Gunnar Esiason’s list of strategies for dealing with stress and depression. You can probably build a similar list using resources that are meaningful to you.

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