Jerry Cahill’s CF Podcast: The Pre-Transplant Process with Dr. Emily DiMango

The latest video in The Path Forward with Cystic Fibrosis series, Dr. Emily DiMango, Director of the Gunnar Esiason Adult CF Program at Columbia University Medical Center, discusses the lung transplant process through the lens of a CF doctor.

First, she reviews the importance of CF patients participating in drug trials in order to start life-changing medications sooner. She then answers the following questions:

· What does pre-transplant management look like for a CF patient?
· When is the right time to be referred to the list?
· What is the referral process like?

Finally, she reiterates the importance of well-rounded treatment that includes physical health, nutritional health, and emotional health.

This video was originally posted on JerryCahill.com

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

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I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

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Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

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The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

Women with CF, we need your expertise and opinions!

Become a member of the CF-Patient Task Force to discuss sexual and reproductive health issues that affect women with CF.  As patients with CF live longer, CFReSHC is committed to patient-engaged research through partnerships with people with CF, researchers, and advocates.  Continue reading The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

These are the health benefits of spending time by the ocean

https://m.mic.com/articles/181359/these-are-the-health-benefits-of-spending-time-by-the-ocean#.UVNSy7ncP

The sea is miraculous. Just the sight of the seemingly boundless body of water is humbling for many. And in the 18th century, the ocean was often regarded as a panacea, with doctors prescribing drinking a pint of sea water to cure Continue reading These are the health benefits of spending time by the ocean

Making it Matter Ep. 27 – Can Drug Development be a Stress Point?

Drug discovery and development in the cystic fibrosis community is moving at an incredible pace. With that, though, comes a feel of stress or anxiety, as the science behind all of this is both complex and constantly moving through seemingly never ending clinical trials. For Continue reading Making it Matter Ep. 27 – Can Drug Development be a Stress Point?

Making it Matter Ep. 24 – Dealing with Disease Progression

Julia and I take a question from my most recent Facebook Live on the Boomer Esiason Foundation page, which asks about the progression of cystic fibrosis and how we deal with it.

Since cystic fibrosis is a progressive disease, it can take an emotional Continue reading Making it Matter Ep. 24 – Dealing with Disease Progression

Making it Matter Ep. 19

Making it Matter Ep. 19: Psychological Impact of Hospital Stays

Julia and I take a question from a listener on Twitter for this episode of Making it Matter:

@Ruth_Hochberg: I’d be interested to learn about coping & psychosocial effects of long term hospital stays on Making It Matter! Continue reading Making it Matter Ep. 19

Music, Cystic Fibrosis, and Mental Health

There’s a myth in the world of cystic fibrosis that one of our airway clearance devices was developed after a CF patient went to a concert and stood near a speaker blaring some really deep beats only to find himself coughing uncontrollably. The next day he felt great and quickly put together some quick Continue reading Music, Cystic Fibrosis, and Mental Health

Webcast: CF and Mental Health

As part of “Cystic Fibrosis Week at the ATS” and in conjunction with ATS PAR partner the Cystic Fibrosis Foundation, the ATS will host a live webinar at 11 a.m. ET, Thursday, Aug. 25. The webinar, “There is No Health Without Mental Health- Exploring Mental Health Issues Faced by People with Cystic Fibrosis and their Continue reading Webcast: CF and Mental Health