Ground-Breaking Procedure. A major step for science, medicine, the human condition

by Mary Bulman; Independent UK

“Woman spends record six days without lungs thanks to ground-breaking procedure”

Yes you’ve read that correctly.
Yes, it reads six days.

A true miracle! Definitely an understatement.

Though it’s been over a year since this procedure was carried out, it’s one that I believe cannot be shared enough. A huge step for medicine and science- but perhaps a larger one for the human condition and the willingness to live and fight.

“I still don’t believe it happened. It seems very surreal.” says patient Melissa Benoit.
And that’s because it is, Ms. Benoit.

After coming down with the flu the last year 2016, Ms. Benoit was taken from her home in Burlington, Canada to the ICU in a nearby hospital located right outside of Toronto, Canada.  Doctor’s made the spilt decision to go through with a first time procedure in order to save her life. After becoming resistant to most antibiotics, bacteria began to move throughout her body, eventually causing her to lapse into septic shock. One by one her organs started shutting down, due to the decline of her blood pressure.

“Although it had never been carried out before, doctors decided to remove her lungs entirely.”

“What helped us is the fact that we knew it was a matter of hours before she would die,” said Dr Shaf Keshavjee, one of three surgeons who operated on her. “That gave us the courage to say — if we’re ever going to save this woman, we’re going to do it now.”

To learn more about Ms. Benoit and the new breed of surgery that was carried out please continue onto the article below:
https://www.independent.co.uk/news/world/americas/woman-six-days-without-lungs-waiting-list-donor-organ-burlington-ontario-melissa-benoit-world-first-a7547936.html

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 …

Gabriella-Balasa-Beach-Featured-Rectangle

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.

To continue reading, visit CFF community blog.

“There Are No Alligators in Heaven!” Scores 4-star Review from Portland Books

https://www.benzinga.com/pressreleases/17/09/p10005705/there-are-no-alligators-in-heaven-scores-4-star-review-from-portland-b

Portland Books Editor-in-Chief Whitney Smyth calls the remarkable story of a family wrestling with cystic fibrosis, “a book that manages to be many things: a heartfelt biography … a Continue reading “There Are No Alligators in Heaven!” Scores 4-star Review from Portland Books

Jerry Cahill’s CF Podcast 164

CF Podcast 164: CF Spartan, Honoring the Loss of My Brother feat. Chris Love

In this podcast, we meet 26-year-old CFer, Chris Love, who is a videographer, guitarist, and avid Spartan racer living in New Jersey. Diagnosed at birth, Chris always looked up to his brother and best friend, Patrick. From the time they were Continue reading Jerry Cahill’s CF Podcast 164

The ‘Life Expectancy’ Statistic — By Gunnar Esiason

I Want Us to Stop Using the ‘Life Expectancy’ Statistic

Cystic fibrosis life expectancy gets tossed around like any number of statistics in the medical world. It’s something that people love to talk about, or use to show success and progress. Continue reading The ‘Life Expectancy’ Statistic — By Gunnar Esiason

Searching for Normal: “Breathe. A True Story” Theatrical Autobiography Chronicles CF Struggles, Inspiration

Published in Cystic Fibrosis News Today on September 15, 2015
By Reid D’Amico

http://cysticfibrosisnewstoday.com/2015/09/15/searching-normal-breathe-true-story-theatrical-autobiography-chronicles-cf-struggles-inspiration/

“Brennen Reeves just wanted to be normal. The only problem: the fatal lung disease, cystic fibrosis.  The only solution: a double lung transplant.  Hilarious Continue reading Searching for Normal: “Breathe. A True Story” Theatrical Autobiography Chronicles CF Struggles, Inspiration

Anatomy of an Excellent Doctor, By Elizabeth Scarboro

Please check out the link to The Huffington Post to read published writer Elizabeth Scarboro’s experience with a  a great CF Doctor. Some of us might take it for granted that this is everyone’s experience with doctors but it is just not so.

I met Dr. Stulbarg when I was 22, and had just moved to San Francisco to be with my boyfriend Stephen. Stephen had cystic fibrosis, but he’d been unusually healthy as long as I’d known him. Then, three weeks after my arrival, on a Saturday night, his lung Continue reading Anatomy of an Excellent Doctor, By Elizabeth Scarboro

A must-read blog in NY Times Opinionator column

This blog was written by a woman who dated and then married a young man who had CF. She has written about this in The Modern Love column in the NY Times as well as just had a memoir published about her life with this man. It is so moving and well-written, I highly recommend at least reading her blog and then possibly purchasing her memoir titled, My Foreign Cities. This might not only interest those whose lives have been touched by those around them who have CF but those with CF as well.

The Ways I’ve Worried By Elizabeth Scarboro

Recently, I found myself lying in bed, trying to sleep, a common occurrence. I had forgotten to call my mom back earlier, and I now pictured her standing in her kitchen. Then the next second she had aged 20 years in my mind, she needed help and I worried about where she and my dad would live, since my husband, kids and I are already packed in a 740-square-foot house. (To read the whole article, click on link.) http://opinionator.blogs.nytimes.com/2013/04/01/the-ways-ive-worried/

Losing a good friend to the good fight.

Usually, when a friend of mine dies from CF and its complications, I am sad but am not shocked. Nor does it take me long to accept this. Same goes for losing a friend to complications post-lung transplant. But there are exceptions. And they are never easy. Continue reading Losing a good friend to the good fight.