Hooray! I Celebrated My Fifth Anniversary – Guest Blog by Kathy Russell

October 3rd, 2018, I celebrated five years since having bilateral mastectomies because of cancer. I have had no recurrence of those cancers and no chemo or radiation therapy. Since I am 74 years old and have CF, I feel very fortunate.

My surgeon would have done just a lumpectomy on the left side, where the initial tumor was found, but I opted for removal of both breasts. I didn’t want to have any more surgeries. If I could have had reconstruction surgery at the time of my mastectomy, I might have opted for that. However, since my surgeon and the plastic surgeon both said that was not an option, I chose to get rid of the whole possibility of future trouble by removing both breasts. Continue reading Hooray! I Celebrated My Fifth Anniversary – Guest Blog by Kathy Russell

Bustle for muscle

by Brennen Reeves

A mom who played college basketball. A dad who entered the army at eighteen. A brother who received a football scholarship after high school. That’s my family.
Me, I like theatre and acting.

I like to workout. I can do most anything, though I tire when I run. Running, not a daunting task for anyone else in my family- nor was the ability to put on weight or the ability to gain muscles. Both were and still remain a struggle of mine today. I understand the weight section- I have CF, my heart beats faster than other hearts, my digestive tract is not on track and diabetes is well, diabetes. Sadly, I cannot understand why I cannot gain muscle. Or turn the muscle that now exists to a lean quality.
I exercise just as much as the next person.

My parents and brother, they’re athletes. Sure, being athletic doesn’t necessarily mean you possess muscle, but my family did. I retained some of those genes. I played baseball, I owned a lacrosse stick, I love to golf. I count that as a sport (so what if I ride in the cart?).
I have coordination.

I received a bilateral lung transplant over 7 years ago. Within that gap, and day by day I become more flexible, stronger, newly energized, with no luck of further muscle growth. The weight is there. Up about thirty-five pounds. But how come there is no significant muscle gain, or the leanness to which I work for? Could it be a diet issue? Because the thirty, sixty, ninety day routine after these 7 years has been ineffective. I still come up short and this lets me down, my physical appearance.

I’m 5’6” and weigh around 120lbs. My body is symmetrically balanced. I have new lungs. There’s the determination- so why this outcome or lack of?
This is not a lecturer post but more a collaborative question- what is your secret? Do you have a secret? Is it a secret?

Sure, I still have CF, yes, my heart still beats faster than other hearts, yes, my digestive tract needs aligning, and well, diabetes still remains diabetes. Just about every other facet since my surgery has changed, emotionally, physically, etc., and my body is still present just with a little more weight with nowhere to go.

I challenge this. Could it be the severed nerves under my breast plate have yet to heal or reconnect, making it harder to attract muscle in this area? The numbness from my shoulders on down through the wrists lose feelings during most points of the day, is that a sign indicating powerless limbs?

“7years. Brennen your body needs more time to heal”
Ok.
—–
Wait,
or could it just be my body?

Behaviors, experience and health care utilization in young women with CF

In this issue of the journal, Kazmerski et al. describe the sexual and reproductive health concerns and related healthcare utilization of young women with CF ages 15–24 years at five CF centers compared to that of the general population [[1][2]]. They found that the sexual activity of young women with CF mimics the behaviors of non-CF counterparts; however women with CF have less access to sexual and reproductive health information and services. Continue reading Behaviors, experience and health care utilization in young women with CF

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)

Only I Can Look Into My Mirror

Guest Blog By: Brennen Reeves

If I were to count all of the scars on my body, the ones visible to a bystander at the beach, I’d need your fingers and toes, plus mine. And someone to mark the tallies. Thirty-eight. I’ve counted. From my chest, to my stomach, up to my neck, and down to my ankles the grooves are endless it seems. I don’t think I have any on my back but then again I cannot see my back and I still have trouble with sensation from the bilateral lung transplant I received in 2011, so I wouldn’t be able to feel them either. Continue reading Only I Can Look Into My Mirror

Strength and Fitness in CF Care with Will Schlucter

CF Podcast 163: Strength and Fitness in CF Care with Will Schlucter

In this podcast we meet Will Schlucter, a 26 year-old CF patient who owns his own gym, Will Power Strength and Conditioning. After years during his youth of taking breaks during athletics, Will decided, as an adult, to push Continue reading Strength and Fitness in CF Care with Will Schlucter

Partnering with researchers to discuss women’s health as it relates to having CF

Written by Sandy Sufian, 48 year old woman with CF

I have recently had the great pleasure to join a diverse team of esteemed colleagues and researchers to finally explore a topic I have been passionate about for many years: how women with CF experience our sexual and Continue reading Partnering with researchers to discuss women’s health as it relates to having CF

Own It Audio Podcast Ep. 9

Own It Audio Podcast Ep. 9 – Feeling Great When You’re Sick

LISTEN HERE

In this episode of the Own It Audio Podcast, you will meet Kate Arian. She’s 27 with cystic fibrosis, and just about to celebrate the 5 year anniversary of her Continue reading Own It Audio Podcast Ep. 9

OWN IT: Bulking Up – A Few Recipes That I Use

I received a bunch of awesome responses to my Vitamix blog, with most asking about what I actually put into the Vitamix.

So, I’d like to share a few recipes with everyone.

Now remember, I am a cystic fibrosis patient with a feeding tube, so here are Continue reading OWN IT: Bulking Up – A Few Recipes That I Use

Body Image Issues

Like many women, I have body image issues.  My legs aren’t shapely enough, my stomach isn’t flat enough, my hips aren’t large enough, etc.  And because of CF I add in the bloated belly, skinny arms and legs, and the barrel chest and I am a hodge-podge of awkwardness.  Like many women I struggle with my weight Continue reading Body Image Issues