CFLF Blog

Weight Gain. The Struggle Is Real.

I know weight gain is a struggle for many of us with CF. When I was in fourth grade I had a feeding tube placed. I ended up having it for around 10 years before I had it removed. At the time, I didn’t like it. It wasn’t towards the end of my time with that tube that I was able to get past my self-consciousness of having it. However, looking back I can now say I am so grateful I had it. I know that without it I would be much sicker. I wouldn’t have the health I do now without it. And if in the future I needed one again, I may not be stoked about it, but I would do it.

I Am.

I’ve started meditating. It’s so hard.

 

My CF - Value Added

Brian in the swing

Finding silver linings is something I find myself talented at. Whenever I have suggested to parents asking for support in facing their child's life with CF that there are many reasons that I consider my cystic fibrosis as a gift in my life, I was always met with complete silence and sometimes a look like I have two heads.

Physical Fitness – Requisite for Happiness*

I had the opportunity earlier this month to represent the CFLF at the Cystic Fibrosis Research Inc. (CFRI) 28th National Cystic Fibrosis Education Conference Partners in Progress in Redwood City, CA. It was a great experience and informative conference. I made lots of connections but was especially pleased to meet a CFLF grant recipient in person. I met Anna Modlin who is now 34 years old. She received a double lung transplant in 2010.

Why I Refuse The Wheelchair

When I can’t remember how many times I’ve been in the hospital I count the scars on the insides of my arms. They’re almost like a map and with each one I can remember vividly the PICC line being placed. Which, in a lot of ways, makes me lucky because so many people with CF can no longer count the scars on their arms, or count on two hands the number of times they’ve been admitted into the hospital, because there have been too many.  There are two scars that are darker than the rest because they’re the most recent.

Sisters: Memories and Time

The President of the United States mentions Cystic Fibrosis, (CF) in the State of the Union address about how we’ve “mapped the human genome to lead a new era of medicine -- one that delivers the right treatment at the right time... In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable.” (Barak Obama, State of the Union January 20, 2015) and my jaw literally drops. A national moment for sure and a very personal one for me - Cystic Fibrosis runs through me and my family.

#MyLifeMatters

A few nights ago, I was wrapped in a blanket, lying on top of an RV off of a scenic overlook in Utah staring up at a sky full of endless, scintillating stars.  The air was cool and crisp, delightfully tickling my lungs as they adjusted to the altitude.  A handsome man with a beautiful soul was holding my hand and pointing out Venus to the south.  Together, we were dreaming about the future.  Something that until Orkambi came, I had all but given up on. 

Fat And Orkambi

Happy July everyone!

I’m guessing the majority of the CF community has heard the exciting news released earlier this month, in fact I would be surprised if you haven’t. Any guesses as to what I’m talking about?
Yep, I’m talking about the FDA approval of Orkambi! This is such big news for our community, following the release of Kalydeco. It means we are moving in the right direction and hopefully closer to a cure.

An Exclusive Interview with Artist Viviann Rose

Viviann Rose is a 61 year old artist living with cystic fibrosis in Utah. Fine art B&W photography enhanced by hand applied color is her medium of choice. Her body of artwork speaks for itself, although Viviann has plenty of life experience and many stories to share. As a fellow artist with CF as well, it was inspiring talking with her, hearing all that she has accomplished so far and viewing her stunning work.

The Unthinkable Transplant

Transplant was a word I never wanted to hear. I was fearful, having been born in the early 80s, when being born with Cystic Fibrosis meant an unpredictable, often rocky future. Defense mechanisms felt necessary. CF used to be labeled a "fatal" disease, a "childhood" illness, and lung transplants, which only became a risky reality in the late 80s, were connected to words like "end-stage" and "last resort." Just the word transplant could make me burst into tears.

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