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Mental Health Insights

By Jeannine Ricci

Last month brought awareness to not only cystic fibrosis but also mental health.  This is fitting since it’s estimated that CF patients are 2-3 times more likely to suffer from anxiety or depression when compared to the general population.

I haven’t escaped this statistic; I’m one of the estimated 19% of CF adults that struggle with depression and one of estimated 33% of adults that struggle with anxiety. Choosing this topic wasn’t easy. Although it’s not something I hide, having hundreds of readers know my personal mental health battles is daunting, so I’ll keep this post more informative than expressive. Another deterrent was the idea of writing an article could sometimes suggest that you’ve overcome an obstacle and want to share your tools for success. Truth be told, anxiety and depression are still very present in my life and I’m far from being on the other side. Despite these hesitations, I decided to go ahead and choose this topic that is uncomfortable to talk about because that’s the only way to remove the stigma of mental illness– acknowledge and validate it and by doing so, reassuring those challenged by it that they are not alone.

I decided to hone in on 3 insights that I hope to be beneficial for others to hear; this benefit will be defined by impact and not by number of people helped because I’ll be writing about topics that only the minority of those with anxiety and depression can relate to. But reaching this minority is so important because as I can personally attest, it’s such an isolating place to be.  

Insight #1

As counterintuitive as it seems, improved mental health does not always follow improved physical health. Having a disease altering medicine, such as Kalydeco, change the trajectory of your disease may lead to confusing, conflicting emotions, sometimes even leading to worsening of anxiety and depression. When the burden of CF is lightened, other issues that you didn’t have the mental energy and strength to cope with may begin to surface. There can be many facets involved, including regret about past decisions made based on a now altered blueprint of your future, shift in identity, and survivor’s guilt to name just a few. My guess is this is a response shared by a small minority and I don’t expect most to understand as it’s taken me years to delve into the complexities. My goal in sharing isn’t so much to explain to those who can’t grasp how emotional healing doesn’t always accompany physical healing as it is to reassure those reading that have had similar struggles to know that you aren’t alone. I hope that this knowledge in and of itself will bring you comfort.

Insight #2

Panic attacks can lead to symptoms beyond the well-known fight or flight symptoms of increased heart rate, hyperventilation, dizziness, nausea, tingling sensations, sweating, and tremors. They can also cause feelings of being detached from your body and/or surroundings. This is called depersonalization and derealization.

In other words, panic can lead to the terrifying, deeply disturbing feeling that you are going insane. It’s a symptom that’s rarely talked about even though it’s been reported to occur in about 40% of panic attacks. The distress that comes with the feeling of losing touch with reality contributes to the panic cycle and heightens feelings of intense fear. Having the knowledge that this is a temporary symptom and is your body’s defense mechanism built in to protect you will hopefully help to deescalate feelings of anxiety and loss of control when in the midst of a panic attack.

Insight #3

Think outside the box for treatment strategies when conventional treatments aren’t effective for depression.  

For most people, treatment for depression is highly effective. It’s estimated that between 80 to 90 percent of people with depression respond well to traditional treatments such as counseling and/or antidepressants.

But what about the 10-20% of people who aren’t responsive to these treatments?  Becoming your own advocate and researching alternative treatments is crucial to finding a treatment that may benefit you. One such treatment is Transcranial Magnetic Stimulation (TMS). TMS was FDA approved in 2008 for treatment of major depression in adult patients for whom traditional therapies have failed or for those unable to tolerate the side effects of antidepressants. TMS uses a magnetic force in an effort to stimulate areas on the left side of the brain that are usually less active in depressed patients. It’s generally well tolerated and covered by most insurance companies. Its success rate in lessening depressive symptoms in those with treatment resistant depression is about 58%, with a remission rate (total cessation of depressive symptoms) of about 37%. A word of caution for those who have a diagnosis of both anxiety and depression: as TMS lifts your depression, you might have an increase in your anxiety symptoms. Discuss this with your doctor prior to starting and ask if they have a plan should this occur. Some doctors will alter their protocol and administer treatments on the right side of the brain simultaneously to counteract this issue.

My hope is that this post will help someone in their battle against anxiety and depression whether it is through lessening feelings of isolation, alleviating some of their fear, or delivering a flicker of hope where there was none.  

Mental health resources:

Cystic Fibrosis Research Inc. (CFRI) support programs: Psychosocial Support Programs & Classes

TMS information (note: this website doesn’t have up-to-date information on TMS providers. Check with your insurance company to find an in-network provider): What is TMS

Headspace: https://www.headspace.com/

MindShift-CBT: https://anxietycanada.com/resources/mindshift-cbt/

USACFA Scholarship Open for Applications! Due June 30th

CF Roundtable offers the Lauren Melissa Kelly (LMK) Scholarship award each semester, in honor of Lauren Melissa Kelly. The academic scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Nancy Wech, Lauren’s mother, established this scholarship in Lauren’s name and memory. In Nancy’s own words:

Lauren Melissa Kelly was an extraordinary woman. Laughing, gregarious, spontaneous, fun, talkative, driven, thoughtful, smart, kind and loving — all descriptive terms for Lauren, who lost her battle with CF late in her senior year at the University of Georgia. In 1992, Lauren was chosen as one of ten Senior Leaders at University of Georgia. She had distinguished herself as a member of the Golden Key Honor Society, Mortar Board, Phi Upsilon Omicron, Gamma Beta Phi, the Tate Society and Delta Gamma sorority.

Lauren felt the most significant opportunities of her college career included participation in the reconstruction and formation of organizations, which will serve the university in the future. She acted as one of the re-founding members of the Phi Kappa Literary Society and was significant in the metamorphosis of the Z Club into the William Tate Society. Her other activities included Greeks Advocating Mature Management of Alcohol (GAMMA) in which she served as Secretary and Special Events Chair. She was also a member of the Women’s Glee Club for more than two years.

In recognition of her academic performance, Lauren’s degree of Bachelor of Science in Family and Consumer Sciences was awarded posthumously. At the time of her death, Lauren was engaged to be married and living off campus in an apartment. She lived life to the fullest!

Walt Disney said, “Don’t cry because it’s over, smile because it happened. It’s not the days in life you remember, it’s the moments.” As Lauren’s mother stated, “I smile because she happened to me. Now, I want you to smile because she has happened to you.”

Please visit our website for application and full scholarship criteria and details. http://www.cfroundtable.com/community-outreach/united-states-adult-cystic-fibrosis-association-scholarship/

Send any questions to scholarships@usacfa.org.

Consider contributing to CF Roundtable’s summer issue

Focus topic for Summer 2019 CF Roundtable:  ENT Problems and Sinus Disease

(Submissions due June 15, 2019)

Below are thoughts and questions regarding the focus topic to give you some writing prompts. Please feel free to write whatever you want regarding this topic and/or anything you think might help someone else with sinus issues.

General Questions:

  1. Do you have sinus disease or ear problems? Have you had treatments or surgeries that helped? Tell us how you handled your problems.
  2. If post-transplant, did your symptoms worsen or improve?
  3. If you are taking CFTR correctors/modulators (Vertex drugs), did your symptoms improve or worsen?

Sinus-specific

  1. Have you had sinus surgery? How many? Were they beneficial? Frontal obliteration? Removal of turbinates? Removal of polyps? Are you satisfied with surgery? If many, how long do they usually give you relief?
  2. Do you use any nasal lavages? Steaming? Antibiotic rinses? What kind? What do you find helps with your sinus disease other than medications or surgeries?
  3. Do you have post-nasal drip, mucus going into lungs? Coughing at night, inability to sleep without coughing?
  4. Do you have sleep apnea? Do you use a CPAP or BiPAP at night? Does it help with sleeping? Do you wake up feeling better or worse?
  5. Has your ENT or surgeon performed in-office procedures to open up closed sinus cavities or removal or polyps? What helped?
  6. Do you use any alternative therapies to help control your sinuses (e.g. colloidal silver, essential oils, etc.)?
  7. What’s your biggest obstacle in managing your sinuses?

Audioliogy/hearing-specific

  1. Do you have hearing loss (from antibiotics)? What do you do for this? Cochlear implants? Hearing aids?
  2. Inner ear, vestibular and balance issues? Did you try any therapies to help? How has this been treated and if so, did they help alleviate the problem(s)?
  3. Ear infections? Tubes in your ears?

Article submission requirements:

Article and photo requirements for CF Roundtable:

  1. Title
  2. Byline (how you want your name listed)
  3. Lengthis 750 to 1500 words and must be original (not previously published)
  4. Bio- at minimum it includes your age and where you live (city, state) and anything else you’d like to add, e.g. contact to your webpage or email; hobbies, pets, family, SO; If you look at past CF Roundtable issues, you’ll see the bio at the end of each article to give you an idea.
  5. Picture(s)- one high resolution picture (500K to 2MB in size, an unaltered, un-cropped smart-phone pic will do) to go with the article. We would also like an additional picture of you with your friends, family, pets or hobby, etc for our 4-color section. Include a caption (when, where or event) and the first and last names of anyone else in the picture.

Sample caption: Joseph Smith with his sister, Joanne Smith, in New York City.

  1. Article and pics would need to be emailed to the editors (Andrea Eisenman & Sydna Marshall). cfroundtable@usacfa.org

Is Our Sexual Health Affected by CF?

by Jennifer Kyle

For a long time, CF patients were not seen as sexual beings by their doctors but, thankfully, this is changing. Being a patient-partner in CFReSCH (Cystic Fibrosis Reproductive and Sexual Health Collaborative) has enabled me and other women with CF to help target an area of CF that has been long overlooked—our sexual health.

Since my first gynecological visit, I remember vividly the doctor saying my cervix looked “funky” but with any luck I would grow out of it. This led to many years of abnormal pap smears, yeast infections, very painful intercourse and multiple doctors. When one doctor found stage four pre-cancerous cells in my cervix, removing it was the best option. As I entered my thirties, I was still wondering what could be wrong with me and if there were other women who experienced the same issues with sexual health pain and problems. 

At 37, I was finally diagnosed with CF and, as I reflected back on my struggles with sexual health pain, I tried to put the pieces together. Afterward, I was determined to find a gynecologist with a specialty in CF; but this didn’t happen. Instead, I tried new creams, suppositories, oral meds, vaginal meds and I even saw a vaginal physical therapist! Yet, nothing worked. So I gave up and accepted sexual health pain as a lifelong problem. 

Now, at 54, I finally feel I am being heard! Women in CFReSHC, like me, will share their personal CF-Sexual Health Pain stories in a panel discussion on Friday June 14, 2019 from 2-4 pm EST. Attendees can share their personal experiences in break out sessions, 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.   

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.