Cystic Fibrosis News Today Weekly Forum Digest

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I Am Struggling With Realistic Health Goals in 2020

Jan 06, 2020 09:09 am | Bailey Vincent

Replies: 1
QUESTION: Do you struggle with realistic thinking when it comes to your health?
I had an amazing New Years, thankfully, but struggled a lot with my mental health. Mostly, my patience. Due to the holidays, most medical appointments, tests and procedures go on “hold”, and it’s hard to reach the majority of our doctors.
Since I have some uncomfortable health stuff going on (but nothing that I felt warranted a trip to the ER- which is pretty much how I always feel about the ER), I felt trapped in a holding pattern of hurry up and wait. I felt stranded… alone… stuck; knowing that something isn’t right but that there was no fast-track to figuring it out either.
Some of my impatience as a patient is the knowing that 2020 is about to kick off fully, with busy schedules, deadlines and demands… but I’m not ready for it.
I naively wanted to “take care of everything” beforehand, so that I could jump back into life without the constant cloud of hospitalization or complication.
Does anyone else struggle with this way of thinking… or is it just me?

Clinical Trials

Jan 06, 2020 04:04 am | Jenny Livingston

Replies: 0
In 2013, someone approached me in clinic and asked if I wanted to participate in a clinical trial. I didn’t have a clue what I was getting into, but the appointment schedule wasn’t too rigorous and I didn’t have much else going on at the time, so I agreed.
The first trial was very short-term, but it led to other amazing opportunities. I was soon asked to participate in a trial for a CFTR modulator, which ended up being Orkambi. (I wrote about how this trial changed my life here.) Since then, I’ve participated in clinical trials as often as I am able to. It’s one of my favorite things, which might sound a little funny, but it’s true!
I love being able to participate in research! I’ve learned how invaluable the results of these trials are, and it feels good knowing that I’m helping make a difference. Also, I see my doctor more regularly when I’m in a study, which means we keep an even closer eye on my health, and it’s helped strengthen our relationship and mutual trust.
If you’re interested, you can use the Clinical Trials Finder on cff.org to find a trial in your area. Or talk to someone at clinic to see if there are trials taking place at your center.
Have you participated in clinical trials? If so, what has your experience been?

The paradox of CF and exercise

Jan 06, 2020 03:25 am | Jenny Livingston

Replies: 1
The paradox of cystic fibrosis and exercise: the symptoms of this disease can make it incredibly difficult (and sometimes downright painful) to workout, but exercise is known to have significant benefits that reach far beyond better lung function. Regular exercise can also help strengthen bones, manage heart disease and diabetes, and improve mental health.
I’ve fallen off the exercise wagon in recent months, and I’m having a difficult time getting motivated again. I know the benefits, and I know that I feel better when I have an established exercise routine, but I’m in that phase where exercising is exhausting and makes me feel worse rather than better. I’ll eventually get through this, but man… it’s not an easy thing!
How do you get/stay motivated to exercise? What are your favorite types of exercise?

CFF Strives to Improve Lung Transplant Journey for CF Patients

Jan 03, 2020 04:45 am | Cystic Fibrosis News Moderator

Replies: 0
The Cystic Fibrosis Foundation’s Advanced Lung Disease Initiative seeks to improve lung transplant outcomes for people with CF. Read more about the Advanced Lung Disease Initiative here.
What did you think of this column?