CFReSHC meeting on Aging, Menopause and CF

What is menopause? I’m 30 years old and have heard it groused about for years, but I really don’t know what it is. I have heard from older women with CF that maybe it starts earlier in CF women and that the experience could be different from the non-CF population. I know it has something to do with hormonal changes, more estrogen, maybe? But I have no idea how it will impact my health in the future or what signs and symptoms I should be on the lookout for. On this one, I will follow the girl scouts’ mantra “always be prepared.”

Luckily, CFReSHC is hosting their next Patient Task Force meeting about the menopause experience. It is a great opportunity for any adult woman with CF to learn about what to expect in a few years’ time or to share your wisdom and questions if you’re experiencing or have experienced it.

The meeting will be December 10th from 2-4pm EST.  Laura Mentch, Health Educator, will be sharing her knowledge on the subject.

Please email info@CFReSHC.org, or follow us on facebook for more information.

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

Check out Jerry Cahill’s new blog: Jerry Unplugged!

Jerry recently launched Jerry Unplugged, a new blog segment on his website where he will share insights, experiences, and more!

Who Am I?

I’m Delta F508. I’m R117H. I’m a cystic fibrosis patient. I’m post double-lung transplant by 5 years and 10 months.
I am all that and so much more. I am Jerry Cahill: athlete, coach, and friend. I have an unrivaled joie de vivre. I am positive, relentless, kind and generous. I am a man, who just happens to have cystic fibrosis. I don’t accept mediocrity. I never give up and always believe You Cannot Fail.
I was born one of six kids and, although I had CF, my parents treated me just like the others. After I was diagnosed, my mother wanted to shelter me, but my dad said, “If his life is going to be shorter, I want him to spend it with his brothers, having fun and being normal.” My dad believed that “you cannot fail as long as you try,” and I made it my life’s mantra.
I attended college and went to nationals in pole vaulting. It isn’t that I didn’t have issues because of CF, it’s just that I chose not to let them get in the way and be roadblocks. They were just detours on the way to my dreams. I went on to have a successful career while juggling the demands of CF. I never have and never will let the disease define me. The more it progressed, the more I pushed back.
Finally, nearly six years ago, at age 56, I needed a lung transplant and received one thanks to the unconditional love and generosity of a grieving family. I am grateful to my donor every day.  Continue reading…

Why I Do What I Do?

Because I can…
I believe in giving back & passing it on. I’ve been given a platform, so I use it to share what I’ve learned and experienced to benefit others. I really like the quote from the movie, The History Boys: “Pass the parcel. That’s sometimes all you can do. Take it, feel it, and pass it on. Not for me, not for you, but for someone, somewhere, one day.” I don’t do all this for myself; I do it to give hope to others, to inspire them to do more, fight harder, and be the best they can be. Everyone has limitations, but I want to inspire every person to go out and be the “hero of your own story.” Continue reading…

Doctor, Doctor!

I walked into the office the other day while Boomer was there and we began to make small talk. He asked how I was doing and I told him I had to see the doctor for my knee, because I’m having knee-replacement surgery in March. Boomer started to laugh and asked, “Just how many doctors do you have? You’re always seeing some doctor, and you act like it’s no big deal. You know, not everybody sees as many doctors as you do.”
“Boomer, I have CF! I’ve had a transplant. I have doctors but not that many, really,” I replied. Continue reading…

Introducing Jerry Unplugged!

We are thrilled to announce that Jerry Cahill has launched, Jerry Unplugged, a new blog segment on his site.  Jerry is a Delta F508 and R117H #CF patient who is post double-lung transplant by 6 years this April! Not only is Jerry an advocate for #CFAwareness, but he is a coach, athlete, and friend! Join him on his journey as he shares his insights, experiences, and explains why he cannot fail❗
Stay tuned for much more of #JerryUnplugged!

Read the first blog here: http://www.jerrycahill.com/who-am-i/

Continue reading Introducing Jerry Unplugged!

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)

Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

As part of his 60th year, Jerry has Activated a “Living List,” and will Complete 60 Events this Year — This is 60:60

New York, June 27, 2016 – The Boomer Esiason Foundation (BEF) today celebrates the 60th birthday of Jerry Cahill, a BEF cystic fibrosis (CF) Ambassador and double lung transplant survivor, who proves that age is truly just a number and that success is possible with a strong commitment to your health. Within the last Continue reading Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

Boomer Esiason Foundation Announces Documentary Up For Air to Inspire Patients with Cystic Fibrosis to Become Active in Their Health

http://www.businesswire.com/news/home/20160607005510/en/Boomer-Esiason-Foundation-Announces-Documentary-Air-Inspire

The Boomer Esiason Foundation (BEF) today announced the documentary, Up For Air, which will premiere in a private screening on June 20, 2016 in New York City. The documentary follows Jerry Cahill, a 60-year-old pole-vaulting coach living Continue reading Boomer Esiason Foundation Announces Documentary Up For Air to Inspire Patients with Cystic Fibrosis to Become Active in Their Health

Celebrating 4 Years Post Transplant with Jerry Cahill

Gunnar Esiason sat down with BEF CF Ambassador Jerry Cahill recently to find out more about his double lung transplant and the way his life has changed since he had the procedure 4 years ago. Jerry shares the many ways in which he has traded certain CF issues for complications that come Continue reading Celebrating 4 Years Post Transplant with Jerry Cahill

Life, 10 years post transplant

Last week marked my 10th anniversary of my bilateral lung transplant. Safe to say, I have beaten the odds once again, and am still around to talk about it. My transplant surgeon, Dr. Bryan Meyers, tells me only 15-20% of patients are still alive at the 10-year mark. Odds are getting better, but it’s a very slow climb in improvements.  Continue reading Life, 10 years post transplant

United States Children with Cystic Fibrosis are Living Longer

MONDAY, Aug. 18, 2014 (HealthDay News) — In the United States, children born in 2010 with cystic fibrosis (CF) are projected to live longer than those born earlier, according to a study published in the Aug. 19 issue of the Annals of Internal Medicine. Continue reading United States Children with Cystic Fibrosis are Living Longer