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The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis

By Survivor and Advocate Andy Lipman

Imagine every breath you take having to be inhaled through a narrow drinking straw. A person with cystic fibrosis does this every day, every moment, every breath. 

The median life expectancy for cystic fibrosis (CF) patients in the United States hovers around 40 years. CF survivor Andy Lipman has defied all odds to become a college graduate, Olympic-torch bearer, runner, husband, father, activist, and author. Lipman has written a new book The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis to celebrate the people who, like him, persevere and live life to the fullest every day even though they have a terminal, invisible disease. The book of hope focuses on 65 different warriors from all over the globe who have one thing in common – they each have cystic fibrosis. It features stories of people who defy the odds, take the cards they are dealt, and go far and beyond what was expected. The CF Warrior Project is set for release in May 2019, which is also Cystic Fibrosis Awareness Month.

Lipman is focusing on 65 stories in the book because that number is significant in the cystic fibrosis community.  The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.” Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease.

Stories of victory in The CF Warrior Project include survivors who have: conquered Mount Everest; become a circus acrobat; received a lung transplant and ran a marathon a year later; and secured approval of breakthrough CF drugs in his country. These people, from teenagers to septuagenarians, have accomplished amazing things. Each story has its own merits, but the common theme among them is how these CF heroes maintain positive attitudes despite the challenges of their disease. 

“Living life requires more than just breathing. It requires loving every minute we have on this earth,” Lipman says. “This is a book about warriors who never give up.  They made their lives purposeful.”

Legendary singer Céline DionTransformers star Megan Fox, volleyball great Gabby Reece, MLB Hall of Famer Chipper Jones, comedian and actor Lewis Black, singer Richard Marx, American Ninja Warrior Isaac Caldiero,The Bachelor’s Colton Underwood,and country music singer Tenille Artsjoin the voices of ambassadors endorsing The CF Warrior Project. Each has been touched in some way by CF. Dion says, “Andy’s book will provide hope for those who so desperately need it. These stories of strength and determination are inspiration to keep fighting in our own lives.”

Lipman was inspired to write The CF Warrior Project because of his lack of CF role models as a child. He became concerned after reading an encyclopedia article as a young boy that said he would not live to see his 25thbirthday.  

“Now in my mid-forties, I thought a book about people living longer with cystic fibrosis was necessary and long overdue,” says 45-year-old Lipman.  “I’m not just talking about people who are living their lives, but people who are also accomplishing amazing things while doing so. These inspiring stories will give hope to a new generation of CF warriors and their families, not to mention those of us in our twenties, thirties, forties and so on who could use a reminder here and there that life is there for the taking.”

Lipman is not just relating stories of survivors; he is also dedicated to finding a cure for this genetic disease. He and his family founded the Wish for Wendy Foundation in memory of his older sister, who died from CF after only 16 days of life. As of 2019, the foundation has contributed nearly $4,000,000 to help raise awareness for cystic fibrosis and fund research for a cure.

The CF Warrior Projectis Lipman’s fourth book. He has two written memoirs telling his story battling the long odds of a CF diagnosis: Alive at 25: How I’m Beating Cystic Fibrosis and The Drive at 35: The Long Road to Beating Cystic Fibrosis. In addition, he wroteA Superhero Needs No Capeabout a young person who grows up wanting to play Major League Baseball, but he must do so while fighting cystic fibrosis. Lipman currently lives in Atlanta, Georgiaa., with his wife Andrea and their 13-year-old daughter Avery and 10-year-old son Ethan.

A portion of the proceeds from The CF Warrior Projectwill go to various charities benefiting cystic fibrosis, including many of those featured in the book. 

You can teach a dog (me) new tricks (insulin pump and CGM).

By Andrea Eisenman

Here I am at 54 years of age, learning new things that sort of overwhelm me but are a necessary evil to keeping my diabetes in check. Even though I was diagnosed with diabetes after my lung transplant in 2000, I only started using an insulin pump 5 years ago. The only reason I started using a pump was because my endocrinologist kept asking me to try it. I finally relented. Continue reading You can teach a dog (me) new tricks (insulin pump and CGM).

The Uncertainties of a Career in Medicine Having Cystic Fibrosis

Guest blog by Jacob Greene

It is a very unique time to have cystic fibrosis. Just over 80 years ago cystic fibrosis was a nameless ailment that caused infants to die months after being born. Today, the CFF’s predicted median life expectancy is just over 40 years. But this statistic does not adequately capture the wide range of CF experiences. Medians, by definition, don’t consider outliers, even though everybody’s CF journey is unique. Another important statistic is that, according to the CFF’s Patient Registry, 50% of people with CF die by the age of 28. Yikes.

Whatever the exact number, my point is that we live in a time in we (people with CF) usually make it to adulthood, but aren’t there for very long. Where does this leave us from an educational/career point of view? Is it worth going to college and graduate school if we are just going to die not too long after getting our degree?

To some people the answer might be “yes, it’s worth it,” to others the answer might be “no, it’s not.” For me personally, my answer aligns with the former. I am currently an undergrad at Stanford pursuing a degree in biochemistry hoping to attend medical school after graduating. To many people this might be unsettling. Two obvious questions that come to mind are, one, “what about bacterial exposure and cross contamination?” and two, “will you be able to keep up with the physical demands of being a doctor?” In response to the first question, there are many specialties that do not deal with infectious patients. Neurology, cardiology, obstetrics and gynecology, most surgical specialties, most oncological specialties, endocrinology, gastroenterology, dermatology, orthopedics, sports medicine, the list goes on. Generally speaking, my CF would not harm these types of patients, and these types of patients would not pose a threat to me. The answer to the second question is less certain. No, I don’t know if I will be physically able to keep up as a doctor. After all CF is a progressive illness. The older I get the sicker I get.

This uncertainty is exactly why I want to pursue a career in medicine. There is a lot of talk about representation in this day in age, but I never hear people talk about individuals with chronic, terminal illnesses becoming doctors. This is unsurprising as it takes many years to become a doctor. We (people with CF) don’t have a lot of time. But that’s why I think it’s so important to pursue a career in medicine. I absolutely adore my doctors and CF team, but every time I go to the hospital I know in the back of my mind that I’m terminal and they’re healthy. As hard as their jobs are, and as much as they see death, there is a fundamental divide between me being sick and their treating sick while being healthy. So, while I hope I can have a long career, I am well aware that this is not a guarantee. In fact, it is an improbability. But that is okay. Even if I drop dead during my residency, I will have been able to help give others life while myself dying. And that’s a pretty beautiful thing.

How to Pick the Perfect College

By Tabby Caldwell

I’ve been thinking about my future lately and realizing how soon its actually coming. I’m planning on going to graduate school next year, and deciding on which schools to apply to has been on my mind. This past week I thought to myself “I’ll be at this school for at least four years, so I should probably find a school with a good CF center nearby”. I realized that this thought never even occurred to me when I was choosing an undergraduate school three years ago. In hindsight, coming to Utah was not the wisest choice. The air is always polluted, the cold winters and the elevation make breathing even harder, and the CF center is not super close. Continue reading How to Pick the Perfect College

Apply for the Abbvie CF Scholarship

AbbVie, a global research and development-based biopharmaceutical company, announced that the AbbVie CF Scholarship program is accepting applications for the 2019-2020 academic school year. Undergraduate and graduate students are invited to apply for the scholarship until May 29, 2019 by visiting www.AbbVieCFScholarship.com. Now in its 27th year, the program has awarded over $3 million in scholarships to deserving students across the country.

“As a recipient of an AbbVie CF Scholarship, I hope that I can inspire other students living with CF to strive to be the best they can be,” said Vinny Holmquist, 2018 recipient of the Thriving Undergraduate Scholarship. “Living with CF presented many challenges for me and my family, but it also motivated me to be a hard worker. I’m proud to say that the AbbVie CF scholarship has enabled me to continue my education and has helped me pursue a degree in business administration.”

AbbVie will select 40 scholars to receive $3,000 for use during the 2019-2020 academic year based on their creativity, academic excellence, community involvement and the ability to serve as a positive role model for the CF community. These scholars will also be given the opportunity to compete for a total of $25,000 for use toward education-related expenses through one of two AbbVie CF Scholarship award categories: Thriving Undergraduate Student and Thriving Graduate Student.

“Students living with CF are able to lead meaningful, impactful lives and make valuable contributions in their schools and local communities,” said John Duffey, vice president, U.S. Specialty, AbbVie. “It’s a privilege to recognize the amazing accomplishments of our AbbVie CF scholarship recipients. We are proud to continue our commitment to these remarkable students.”

Students can apply online or by downloading an application on the scholarship website. For more information about the application criteria, contest rules and upcoming deadlines surrounding the application process, and to view creative submissions of past winners, visit www.AbbVieCFScholarship.com.

I Inhaled Viruses As A Last-Ditch Effort To Fight A Drug-Resistant Bacterial Infection

By Ella Balasa

A few months ago I tried an experimental treatment called phage therapy to treat the relentless Pseudomonas in my lungs. This treatment was documented by the Associated Press and since then I have received many questions from individuals asking how I feel now. Well, I wrote a piece to tell the story from my perspective and hopefully provide some information that you can’t gather from just a news blurb.

I also discuss the importance of understanding scientific knowledge about treatments and disease prognosis. Without this, I would have shied away from trying this treatment that significantly helped me. It’s a vital aspect of being a receiver of health care ― asking questions, probing for answers, and gaining the knowledge to feel empowered to take an active role in shaping your health journey.

If anyone is interested in learning more about this experience, take a read at HuffPost here.

Building a Relationship With Your Women’s Health Provider

By Melissa Shiffman

After I spoke to my CF doctor about my desire to get pregnant, she recommended an ob/gyn who worked with other CF patients. I saw her right before I got pregnant and continued to do so throughout the birth of my daughter, my miscarriage two years later and the birth of my son a year after that. She was kind, caring, thorough and had knowledge of CF that we found comforting. While I was pregnant with my son, we  had an issue over insurance that compromised my trust in her. My CF center recommended a new gynecologist who I saw for a number of years. She was smart, straightforward, attentive and always asked about my CF but I felt rushed during my my appointments. Talking about my concerns was like a going through bullet point checklist rather than a partnership so I asked friends for recommendations. One OB/gyn I tried was fantastic the first time I saw her but when I returned this past year, I waited for hours, then only got  2 minutes with her to explain my concerns about a possible hormonal issue, she sent me to another specialist who told me I did not have breast cancer. That’s not why I went to her but she did not even listen to my actual hormonal concerns. The search is on again and I’m feeling so frustrated.

I would love to build a relationship with a women’s health provider now that I’m on the cusp of perimenopause. I feel like I’m embarking on a journey with no direction.  I am hoping for some guidance from Drs. Emily Godfrey and Sheila Mody, CFReSHC board members and women’s health care providers, who will discuss how to find a women’s health care provider that meets your needs by reviewing what questions to ask and clarifying your goals for each visit at the CFReSHC Patient Task Force meeting on Thursday April 4, 2019 from 1-3pm EST.

Attendees can share their personal experiences, help develop potential research questions to be addressed by the CFReSHC research advisory panel and receive an Amazon gift card for their time.  For more information on CFReSHC and for login information email CFReSHC at info@CFReSHC.org.   

Cystic Fibrosis Research Study

A research study for adults 18 years of age and older, who have been diagnosed with Cystic Fibrosis is now enrolling. This study is being conducted to evaluate the safety and efficacy an experimental treatment for people with Cystic Fibrosis who also have a bacterial infection in their lungs.

You may qualify if you:

  • Are at least 18 years of age
  • Have been diagnosed with Cystic Fibrosis
  • Are currently being treated with inhaled antibiotics (for at least 3 months)

Continue reading Cystic Fibrosis Research Study

Five Feet Apart Review: A Movie Embracing the Beautiful Experience of Life Lived with Cystic Fibrosis

By Beth Sufian

I saw the movie Five Feet Apart and LOVED it.  It was an incredible experience. It has a beautiful message of hope and the importance of friendship and accepting yourself and your situation.

Wipe movie reviews and online comments out of your mind. Create your own opinions about the film, but first, allow yourself to feel the incredible experience of sitting in a movie theater, watching a major motion picture with the three main characters who have CF, just like you.

Honor the memory of Claire Wineland who consulted on the movie and made sure the director and actors knew about how she lived her life with CF. The actress in the movie does an incredible job conveying what it is like to live life as a person with CF. I felt the spirit of Claire whenever the character Stella was on the screen. 

The male lead character, Will, reminded me of so many teens I met when hospitalized in the 1990’s. The character is affected in positive ways when he connects with others who have CF. The other character with CF, Poe, expresses his fears and shows how one can have a deep love for a friend. 

I thought I would cry a lot during the movie but actually I was so engrossed in the story I think my brain didn’t want any tears to block my view. At the end when a picture of Claire came up on the screen the tears started to flow. Today I saw the movie a second time with my staff who work tirelessly on the CF Legal Information Hotline.  My staff cried so much that their noses were red and their eyes were puffy. Everyone was deeply moved by the movie.

The depiction of what people with CF endure daily is extremely accurate and the director takes the time to show scenes with the characters doing breathing treatments, using the Vest, accessing their G-tubes, and wearing oxygen.

I thought the characters taking off their masks at different points in the movie was very realistic.  Many people with CF do not want to wear a mask in the hospital or in CF clinic.  This is a reality. Some people with CF follow cross infection rules set by their hospital or CF Center but other do not. I think the movie raises many important questions about the effect of cross infection rules/concerns within our community.  Some people are terrified of people with CF and others find safe ways to be friends like meeting outside or communicating online.

Our CF community is made up of all types of people with varying levels of health.  We need to share the stories of those who have serious health problems and not just stories of people who run marathons and climb mountains.

The movie shows us that a person with CF can be sick and still have a successful life.  In fact, Claire spoke about this often in her videos which can be found online.

Every day I speak to people with CF who call the CF Legal Information Hotline and tell me they think their life will be worthless if they stop working. I tell them their life is valuable regardless of their ability to be employed. Being employed should not be the way we measure success in the CF community. I think those who retire from employment to spend more time taking care of themselves are extremely successful! There are many ways a person with CF can help others in retirement. Join us at CF Roundtable and you can do great things.

In 2019, let us join together and support each other and embrace our differences.

*For those of you who would rather watch Five Feet Apart at home when it is released online but want to watch a CF movie now I suggest watching the Power of Two Movie. It is a documentary about the incredible twins Ana Stenzel and Isabel Stenzel Byrnes.

Holding Out for 3D-Printed Sinuses

By Sydna Marshall

I often suggest that I should model for the artist-rendering of worst-case scenario CF-sinuses. I’ve had countless sinus surgeries and my ENT (“Dr. E”) has tried everything along the way. Dr. E has opened up my cavities by cutting back some of the bone and membranes, he’s put a flap of sorts in the base of my sinus cavities to help the cheek cavities drain better. He’s fixed my septum and he’s removed a huge number of polyps in multiple surgeries, both under general anesthesia and at his office with local anesthetic. At Dr. E’s suggestion, I’ve also undergone the frontal obliteration. All of this, and my sinuses just plain suck. It’s the number one struggle I have as far as managing my CF.

A year ago, I decided it was time to just see him every two weeks to keep things flushed out routinely and help cut down on hospital time and/or IV antibiotics. Pseudomonas has plagued me for ten years now and just like Bob in the movie, What About Bob, my colonization won’t leave. It’s a resilient little bugger! Because my sinuses are so swollen, we’ve had to think outside the box when it comes to numbing methods before they get washed out in-office. Years ago, three sprays of lidocaine did the trick. Now, I get a spray of lidocaine followed by two gauze pads soaked in lidocaine, which sit in my nostrils for thirty minutes or so. After that, I sometimes get the numbing gel and/or a shot of lidocaine directly in my sinus membranes. Just last week we tried tetracaine, which helped tremendously. It takes roughly 90 minutes for everything to work before we can start the process of suction, extraction, and flushing with huge syringes of water. My favorite part of this whole routine is the immense relief when he extracts something with the alligator tool. It’s the very definition of instant gratification and I’ve spent so much time in his office that my husband bought me my own alligator tool to hang as a Christmas ornament on our tree. One of these days I’m going to ask to decorate what is now my plastic bowl for the rinses. Sydna’s Snot Bowl has a nice ring to it!

Many years ago, I upgraded from the sinus rinse bottle to a SinuPulse machine (think Waterpik for your sinuses) as they really need the extra oomph to power through the mucus and crusting from the infection. I highly recommend it if you’re struggling to get relief from the regular sinus rinse bottle. Over the years, I’ve tried it all: silver sprays, essential oils in my rinse, nebulized antibiotics with a sinus nebulizer, and manuka honey. The latest attempt is a compounded drug consisting of two antibacterial meds, an antifungal, and a steroid, which gets mixed in my sinus rinse along with Alkalol and manuka honey. So far, this seems to help tremendously.

So, what does severe sinus disease look like? It looks like routine visits and trying new therapies, often with little change in outcome and/or comfort. It’s an ever-evolving process and I’ve had a long time to accept that with the therapies available now, my sinuses won’t really get better, as I previously thought they would. Back in 2007 when I first started seeing Dr. E, I mistakenly assumed that one sinus surgery would fix my sinus issues and I’d be on my way to relatively normal sinuses going forward. In hindsight, that was a poor expectation on my part as a routine adenoidectomy at 11 led to my CF diagnosis with the discovery of polyps in my sinuses.

Meanwhile, I’m holding out for 3d-printed sinuses!

Sydna lives in Austin, TX with her husband and fur baby. She loves to read, is a part-time practicing yogi, and enjoys cooking!