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/

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. 

Two more weeks to apply for our LMK Scholarship! Due October 15th.

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. Spring 2019 applications due on October 15th, 2018.  Continue reading Two more weeks to apply for our LMK Scholarship! Due October 15th.

You have a new set of lungs! What should you expect next?

Cystic Fibrosis Podcast 183:
The Path Forward with Cystic Fibrosis
By Jerry Cahill
In the latest edition of The Path Forward with Cystic Fibrosis, Dr. Arcasoy from Columbia University Medical Center is back to explain what happens after a patient has a double lung transplant. He discusses pain management and the post-transplant care team in detail.
Here’s what to expect immediately pre and post-surgery:
  • Post-surgical care including pain management
  • Medical care that includes antibiotics, antirejection medication, and anti-infection medication
  • Psycho-social recovery assistance
Dr. Arcasoy also explains who your post-transplant care team is and what they do… it’s a lot, so here’s a cheat sheet:
WHO: Medical Transplant Pulmonologist and the Coordinator
WHAT:
Patients will meet with their Post-transplant team once a week for three months, then every 3-4 weeks for a year. At every meeting, the following occurs:
  • Chest x-ray
  • Lab work
  • Pulmonary function test
  • Physical exam
  • Conversation to review medications and overall health & wellness
  • Follow up lab review and medication changes
The schedule for bronchoscopies vary depending on the center, and additional testing can be added at any time deemed necessary.
Remember – every patient’s experience is completely unique! Do not get discouraged; and work with your care team to prepare both mentally and physically for the bumps along the way.

This video podcast was made possible through an unrestricted educational grant from Columbia University Medical Center and the Lung Transplant Project.

SIX Ways to PAY IT FORWARD to CF ROUNDTABLE!

By Jeanie Hanley, President

Greetings CF Roundtable Subscriber!

May is CF Awareness month. What better way to “Pay It Forward” than by supporting CF Roundtable which has been vital to the CF community! Please consider making a tax-deductible donation today.

This is YOUR CF Roundtable and because of your generosity, YOU have made it possible for nearly 30 years. 100% of your donation goes into the newsletter and many outreach programs. All work is done by volunteers with CF like Andrea, our Executive Editor, whose inspirational words regarding her 18 years of transplant are below:

Eighteen Years of Life Post-Transplant

By Andrea Eisenman, Executive Editor of CF Roundtable

Reflecting back on my life for the last 18 years post-transplant, I am amazed I have lived so long. Way longer than I expected, considering the 50 percent median survival of 5 years after a bilateral lung transplant. I am grateful for this time in which I was able to get married, go back to school for various interests like film and cooking, and care for my mom in her later years, share my life with people I care about and never in recent memory felt this good.

While I have enjoyed a good quality of life, it came with a price of total compliance almost to the point of being neurotic at times (my doctors probably get sick of my calls and emails), a daily exercise regimen and lots of rest. But I found that if I did things I enjoyed like tennis, pickle ball or swimming, it helped get the exercise for that day done while it was fun and social.

I have been extremely fortunate as not only do I have this longevity with transplant and I feel pretty well. Aside from the last 12 months, I have had the ability to travel and do most things my peers do. While I had some setbacks recently, I am starting to feel better. I keep a positive outlook and do what is needed. I can see how precious this gift of life is and I hope that when my time comes to be a donor, the person who gets my organs enjoys them as much as I enjoyed these lungs.

DONATE LIFE!

Please consider Paying It Forward in these six ways:

 

  • Unrestricted Gifts – your contribution will go to the program that needs it most.
  • Milestone Celebration: for a transplant anniversary, birth of a child, wedding, or a birthday. There is no greater reward than celebrating YOU and YOUR accomplishments.
  • Tribute Gifts – donate in honor or in memory of someone.  
  • USACFA Endowment Fund – consider contributing which will get CF Roundtable closer to be self-sustaining forever! Please contact us if you are able to contribute.
  • Matching Gifts – if your employer has this program, then let us know!
  • Bequest – A simple and easy way to remember CF Roundtable in your estate planning.  To establish a bequest, please contact us.

 

To make a donation, click here DONATE NOW!

Or MAIL a check USACFA

(made out to USACFA) to:

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Contact us at cfroundtable@usacfa.org for any further assistance.

USACFA proudly publishes CF Roundtable and all its associated programs; USACFA is a 501(c)(3) nonprofit organization. All donations are tax-deductible.

Thank you!

Freedom!

Guest post by: Kathy Russell

Today was a terrific day! We have just experienced a three-day series of high temperatures in the 80s. In the middle of summer that would be quite normal, but getting that kind of weather in April is extremely rare in my part of Oregon. I made the most of those days.

In our front yard, we have a very old and very large black walnut tree. There is a brick planter built around the base of the tree and there are various plants, including several sword ferns, growing in it. The sword ferns are beautiful if they are properly groomed. Each year, when the weather permits, I get out and cut away all of the old fronds to make room for new growth.

I didn’t get to do that last year because of my health. I just didn’t have the energy to do the bending and twisting that the task entails. Also, since I am on continuous oxygen, it makes getting out to the tree a bit problematic. Dragging my portable oxygen concentrator (POC) while I am pruning the ferns is a bit of a pain. I bend over and cut some old fronds, then I have to stand up and drag the POC to my next position. It makes it more of a chore and a lot less fun than it used to be before I was on oxygen.

Yesterday I worked on a couple of ferns that I could reach with the length of hose that is on my big concentrator. That was fairly workable, but I couldn’t go beyond the range of my hose. Also, I couldn’t reach two of the ferns. After about an hour I was getting too hot and decided to stop working on a large fern that was at the end of my tether.

Today, my husband took my large concentrator outside and plugged it into an outdoor outlet. With the 75 feet of hose that I have on it, I had a lot of freedom to move around. I was able to finish the fern that I left yesterday and finish the final two. I didn’t have to worry about running out of hose length and I felt so unencumbered. It was so great to be able to move around like a normal person. I absolutely loved that feeling of freedom. It was almost like not even being on oxygen.

My oxygen saturation stayed in a very good range and I got a couple of hours of fresh air. I was mostly in shade so I didn’t have to worry about being in the sun too long. Having the ability to move around and not have to drag a POC was a real gift as far as I am concerned.

CFF announces recipients of first annual impact grants

Cystic Fibrosis Foundation Announces Recipients of First Annual Impact Grants to Programs That Serve People With CF and Their Families

The Cystic Fibrosis Foundation has announced the recipients of its first annual Impact Grants.

The program provides funding to support people with cystic fibrosis who are creating unique projects in their communities that serve people with the disease and their families. Cystic fibrosis is a rare, genetic disease that causes chronic lung infections and premature death.

The 2016 grants award $10,000 each to seven diverse programs across the country — from one that teaches singing as an outlet for creativity and wellness, to others that provide personal fitness and health training to individuals with cystic fibrosis. Recipients were chosen by the CF Adult Advisory Council, an external panel comprised entirely of adults with the cystic fibrosis, in partnership with the CF Foundation.

“People with CF have the greatest insights about how to live with this disease,” said Drucy Borowitz, M.D., vice president of community partnerships at the CF Foundation. “We are honored to support these organizations that harness the power of the CF community to help people with this disease and their families live better lives every day.”

Read the blog here.

The grant award recipients include:
The Cystic Fibrosis Lifestyle Foundation (CFLF), a nonprofit organization that helps people with CF maintain a healthy lifestyle. The CFLF provides assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical wellbeing.

The United States Adult CF Association (USACFA), a nonprofit corporation run by adults with CF, offers the community an opportunity to exchange medical and nonmedical information through its quarterly national newsletter, CF Roundtable.

Project CF Spouse is a nonprofit organization dedicated to supporting spouses of people with CF. The grant will be used to grow the 150-person group, expand educational resources and facilitate connections between other spouses as they navigate their own CF journeys.

The sINgSPIRE program, through Breathe Bravely, will provide free, private voice lessons with a qualified voice instructor who will work on strengthening participants’ respiratory systems and improving self-awareness and confidence.

Program NuYou, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a workout plan that is tailored to individual participant’s needs.

Miles for Cystic Fibrosis supports Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath.

Continuing Education for Caregiver/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease.

Continue reading CFF announces recipients of first annual impact grants

OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

This podcast will finish the discussion started last week about a person with CF living alongside roommates in college. You will again meet David O’Kane, Carmen Gatta, Vince Love and Matt Flynn, and hear us talk about the support Continue reading OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

Having CF is the Best Thing that Ever Happened to Me

Having CF is difficult.  There is no denying that.  Some days it is hell, other days it is fairly easy given the circumstances.  But with all the bad that has happened, having CF is the best thing that ever happened to me.

Continue reading Having CF is the Best Thing that Ever Happened to Me