26 Years and Counting with CF

By Ella Balasa

The day I was born, the median life expectancy of someone living with cystic fibrosis was 31. Although I haven’t reached that median yet, I feel like I’ve beaten the odds.

During past birthdays, my parents, brother, and I celebrated with cakes filled with raspberry layers and chocolate frosting. The cake always had my name written across the top in big, pink, block letters, and the number of candles matched the number of years lived. I remember my dad’s voice quivering just slightly by the time he sang the last “Happy Birthday” lyric. I think that he sheds an extra tear of joy, metaphorically, for each year I get older. He’s happier than the year before, that I’m one year closer to living the long life he hopes and prays his little girl would have.

I know my parents have always had a seed of heartache that they’ve kept hidden far in the back of their thoughts, watered by the knowledge that they may outlive their youngest daughter. It’s a feeling unknown to me; I can only imagine the fear.

I realize that my disease continues to progress with each passing year, causing a gradual decline in the intensity of accomplishable physical activities. My birthday is somewhat of a grim reminder of what I’ve lost over time. It’s marked by at least one less thing I can do.

Toward the end of my high school years, my brother was my exercise coach. He was always encouraging (sometimes nagging) me to do frog hops down the driveway and sprints from the mailbox to the stop sign on the corner. I also was running about 1 mile, or half of one, in my neighborhood on the days I felt extra motivated. One early summer day, at the end of my loop, about half a block before I reached the stop sign on my corner, I felt the urge to cough. When I got to the corner, I started coughing globs of pure blood while bracing myself against the sign. It was one of the last times I ran. That was the year I turned 18.

When I turned 21, I stopped working out at a gym and instead got a treadmill and weights at home because I had started to require supplemental oxygen while exercising. Without the extra oxygen, my blood oxygenation levels would dip into a range that could cause damage to my heart. My lungs began failing at the job they are required to do: supply oxygen from the air into my blood vessels and to the rest of my organs.

I was using a nasal cannula and carrying around a machine that puffed loudly with every breath, but I couldn’t allow people to see me as abnormal. I still have a hard time being in public with the supplemental oxygen, and although I don’t yet require using it constantly, it’s caused my illness to become visible rather than invisible, as it typically was — and I struggle with that.

Last year, when I was 25, I learned what it feels like to do a 500-pound deadlift. Except I wasn’t in a competition. I was bringing just two bags of groceries into my house from my car less than 50 feet away. During infection exacerbations in my lungs, I am unable to walk at a normal pace, much less carry anything, due to my airways feeling like they are the diameter of a toothpick, and the lack of oxygen my body is receiving. During these times, I feel my body needing the extra oxygen that I sometimes deprive it of because of my unwillingness to show the signs of my disease.

Based on this column thus far, it might seem as though I lament on the difficulties. Honestly, I don’t notice much when my breathing becomes less limited. It’s easier to notice when my breath is restricted and I feel my body producing less, functioning less.

Despite these reflections on my inabilities, I don’t remember my birthdays for all the things I couldn’t do in that year. I do remember everything I could and did do, both on that day and the 364 days in between. For my 10th birthday, I remember having a picnic in the park and running around the playgrounds playing hide-and-seek. For my 21st, I remember going to a local bar, Baja Bean, and getting the coveted sombrero so everyone would know I was celebrating my big day. For my most recent, the 26th, I rode in a small seaplane over the city, then landed into the river.

Birthdays have always been, and always will be, a celebration of my life. It’s the progression over time, despite my best efforts to stay as healthy as I possibly can, that I’ve found to be somewhat discouraging at times.

When I blow out my 27 candles next year, there will certainly be a diminishment in my physical abilities. But I won’t be dwelling on it. I’ll be thinking about all of the new things I did, the places I went, and the people I met.

To read the original article, please click here.

Lauren Melissa Kelly Academic Scholarship 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.

 

You got the call for transplant… Now what happens?

Cystic Fibrosis Podcast 182:
The Path Forward with Cystic Fibrosis
In Jerry Cahill’s latest edition of The Path Forward with Cystic Fibrosis, Dr. D’Ovidio and Dr. Arcasoy from Columbia University Medical Center explain what happens once a patient receives the official phone call for his or her transplant.
They explain dry runs, the transplant surgery, a patient’s first breath, and more! Keep in mind; the overall transplant experience varies greatly among patients, as each case is completely unique.
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:

PO Box 1618

Gresham, OR 97030

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!

I’m on the transplant list, now what?

In Jerry Cahill’s latest edition of The Path Forward with Cystic Fibrosis, Dr. Selim Arcasoy from Columbia University Medical Center discusses what happens once a patient is on the transplant list.
The first three major steps are:
  1. Create a strict exercise program with the hospital rehab center and integrate it into the patient’s schedule.
  2. Meet with a nutritionist in order to maintain proper weight.
  3. Educate! Meet with the care team in order to understand the entire process – both pre and post transplant.
The transplant process is a long one – and thoroughly detailed – in order to increase the chances of success. Tune in to learn more from Dr. Arcasoy.

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

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.

Cystic Fibrosis Podcast 180: The Pre-Transplant Process

In Jerry Cahill’s latest podcast series, The Path Forward with Cystic Fibrosis, we hear from Dr. Selim Arcasoy from Columbia University Medical Center. He discusses the pre-transplant process by covering the following topics:
  • When should a CF patient consider a lung transplant?
    • When lung function decreases to 30% or below
    • When there is an increased infection resistance
    • When exacerbations resulting in ICU hospital stays become frequent
    • When a patient experiences frequent lung bleeds and collapse
  • What is the transplant listing process?
  • What is the transplant evaluation process?
  • What are some testing and evaluation obstacles, both mental and psychosocial?
  • What is dual listing?
  • What happens when you are actively listed?

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

Stream “Up for Air” Documentary this Month for Free!

Jerry Cahill‘s documentary, “Up for Air”, provides viewers with an inside look at his personal fight for survival while living with #CF. During national #DonateLifeMonth (4/1 – 4/30) use the code: BEANORGANDONOR to watch the documentary for FREE! Tap the link to watch: https://vimeo.com/137872395

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Jerry Unplugged: Bouncin’ Back

Well, here I sit, staring at four walls, unable to ride my bike, work out, coach, or run. I’m stuck here in my apartment for the next two weeks as I recover from a partial knee replacement. This lifestyle is not me at all. I’m frustrated, and it would be easy to get discouraged, but I can’t afford to.
I’ve just listed some of the many things I can’t do, but I’m focusing on what I can and must do in order to live the way I want to live. I must stay focused on the positive and on my recovery. It’s the only way to bounce back to my version of normal.

Continue reading Jerry Unplugged: Bouncin’ Back

Lessons From the Road: Avoid the ER

By: Sydna Marshall

A few weeks ago I found myself in the ER at midnight in a new city.  Let me backup the story a bit. I had planned a road trip to Dallas with my bestie (we’ll call her “A” for now) for a beauty conference. Two days before the trip I ran a 102.6 fever for the better part of the day. The morning of, as I was doing my treatments and finishing my packing, I felt the familiar band of pain around my chest. I mentally ruled it out as merely remnants of pain from my blockage earlier in the week and carried on with my morning. I drove the hour north to pick up A and start our trek up to Dallas. We stopped for tacos and queso along the way. I took some pain meds for that persistent and annoying band of pain. A few hours later, we checked into our hotel, picked up our beauty boxes for the conference, and had a happy hour cocktail in the bar followed by sushi in the rotating tower.

Fast forward to 9p: CF changes on a dime. Suddenly, that pesky band of pain that I’ve absently noticed and ignored for the day is front and center. I can barely take a breath, much less a full breath, post-treatment. By 11p, I’ve laid in bed silently crying as the pain spikes up to an 8 and then back to a 6. It dawns on me that the band of pain is pleuritic pain. After texting multiple Cysters and weighing the pain with the inability to breathe, my recent 20% drop in lung functions and the fever I ran earlier, I finally make the decision to wake up A (who is for once sleeping peacefully, without interruptions, in the absence of her four kiddos) and have her drive me to the ER.

We arrive at the ER with this naïve idea that my CF clinic, albeit on-call at this late hour, will communicate with the CF clinic in Dallas. I’d already given A all of the information, phone numbers, and instructions for getting everyone, including my husband Adam, on the same page. Over the course of the evening and early morning hours, hundreds of texts and calls between A, Adam, and the on-call care team at home transpire in an effort to expedite the process.  Since it’s not my first rodeo with pleuritic pain, I’ve already determined before we even got settled in the ER that I desperately need instant-relief pain meds and a chest X-ray. Am I the only one who self-diagnoses? When you’re in and out of the doctor for the litany of health problems in addition to CF, you become the expert on your own body. I digress.

Over the course of the 12 hours in the ER, my port is accessed a total of four times, with one of them being a needle repositioning, before we get anywhere. To administer IV medication and run blood tests, two different nurses start dueling peripheral lines, one in my left hand and the other in my right elbow.  Meanwhile, other nurses attempt to get my port working, which won’t flush or draw back blood. My vein blows on one of the lines, and the other is dangerously close. I have a chest X-ray taken, a CT scan with contrast of my lungs, every blood test imaginable, an EKG, several rounds of morphine, two doses of vancomycin and two albuterol treatments.  I’m told I have a potential pulmonary embolism, a virus causing pleurisy, a mucus plug, or sepsis. Twelve hours in, and about 10 minutes after Adam arrives at the Dallas ER, my repeated requests to be moved to my home clinic, care team, and hospital are heard and I’m care-flighted from Dallas back home (Adam has to drive back home). Once admitted to my home hospital, they have me repeat nearly every test the Dallas ER did less than 24 hours prior as none of my medical records transferred with me from the ER. Five days later the medical records from the ER finally make their way to my home hospital and care team.  In the end, it was determined that I had a virus, which accounted for the difficulty in breathing, pleuritic pain, and fever. It was a very long, traumatic, stressful, and a trying 12 hours away from home. And, I missed my conference entirely, but that’s another story.

I’ve since had some time to reflect on this jaunt to the ER. The biggest takeaway for me – CF clinics do communicate but getting the ER to communicate with the CF care team is nearly impossible.  Having a port is a blessing, but it requires orders from your doctor, not just any doctor, to access and use heparin or cath flow in the event that it’s not working properly (or, in my case, repeatedly accessed incorrectly).  I learned that complaining of chest pain at a new hospital where none of my medical records are accessible means a round of tests to rule out heart problems, despite knowing that it’s my lungs. I learned that transferring medical records from one hospital to another is a royal pain in the you-know-what.

Hindsight is always 20/20, but I know I could have avoided the entire debacle if only I had heeded my inner voice the morning I left for Dallas when I first felt the band of pain around my lungs.  For me, it’s often hard to gauge when it’s important to say no and upend plans, especially when it impacts friends and family around me. If a trip to Walgreens completes a vacation in my house, am I an overachiever for my trip to the ER?