The Hospital Comfort Kit Is Now Available!

The Hospital Comfort Kit Is Now Available!

When Rebecca Poole was admitted to the hospital in December 2014, she had no idea that she would not be discharged for 219 days. Her husband Ray focused daily on what he could do to make her more comfortable. Friends and family would ask what they could do to help and at the time he didn’t have an Continue reading The Hospital Comfort Kit Is Now Available!

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?

College and CF – Spring 2018 Scholarship Recipient Guest Blog

By: Holly Beasley

Approaching college while living with Cystic Fibrosis can be undoubtedly frightening. Although, great challenges bring great rewards. This is what I have come to learn during my time at the University of North Carolina at Chapel Hill. While I am only a sophomore at the university currently, I hope the knowledge I have gathered through my journey thus far will serve to touch others with CF.

I believe that living with Cystic Fibrosis requires honesty with yourself and others. Therefore, I must be completely honest with you regarding the college experience while living with CF. I do not aim to discourage but to instead challenge you to prevail. I think a unique strength was placed within all of us with Cystic Fibrosis to surmount any challenge that presents itself in our lives. One of these being college, if you so choose.

College with Cystic Fibrosis will certainly not always be easy. As you may know, sick days, lengthy therapy routines, and hospitalizations come with the territory. Combine all of this with the pursuit of higher education and one can become overwhelmed. Balance and prioritization become key in the life of a college student with CF. I know I have spent countless nights reading my textbook while my Vest was simultaneously shaking my lungs. There have also been times when I completed assignments while lying in my hospital bed. This is where balance comes in to play. Finding a system that makes time for both school and health care is crucial, but I want you to be certain that it is also achievable. Despite some extra setbacks and effort, I finished reading all of those pages in my textbook and an assignment has yet to be turned in late. Now, this is where prioritization becomes a major factor. In order to be an efficient student, your health must come first. If doing both becomes too taxing on your body, please remember that it is ok to give yourself a break from school. This has been a difficult lesson for me to learn as a student who always strives for perfect grades. The times I have put school before my health, it has never worked in my favor. I only became sicker, causing a worse impact on my academic performance than if I would have taken the time to recover initially. Carving an hour or so out of my day for therapy when I first noticed signs of sickness would have been much easier than the eventual hospitalizations that resulted from the neglect of this fact. Always put your health first. The aspirations you are seeking through your college journey can only become a reality if you are alive and well to participate in these realized dreams.

All of this may seem rather challenging. So how does all of this ultimately become rewarding? Well, that is entirely up to you. I’d like to give some insight on how this process has rewarded me, personally. This might be the same reasoning that inspires you to pursue higher education or you might have a unique drive that motivates you. Either way, hone in on this sense of why it is all worth it.

Each day attending college rewards me because it serves as a constant reminder that I am equally as capable as anyone without Cystic Fibrosis. We are all different and many of us have encountered at least some degree of a setback in our lives. Mine just happens to be Cystic Fibrosis, but I can work with this along-side my peers. One classmate may have had a parent pass away, another battled a different disease or any other challenge that life may present. Yet, we can all come together in one classroom in order to learn and grow as equals. College allows me to reflect on the fact that the circumstances life presented me with do not define me as lesser. Instead, they exist to strengthen me so that I may become more. Life with Cystic Fibrosis has not been easy and this has never been truer than in my time at college. As I sit here now, I can still honestly say that I am happy to have Cystic Fibrosis. We are forced to realize how special we truly are when challenged by this disease. Yes, I have experienced setbacks and hard times while in college. They have not defeated me and they will not defeat you. At times, I may have to exert extra effort because of my CF. The reward of knowing that I got the job done regardless is much greater than any challenge that college or Cystic Fibrosis may introduce.

Tips for Surviving a Holiday Admission

Guest Blog By: Lauren Jones Hunsaker

Most of us have had to suffer through a holiday admission at one point.  It’s a reality of our disease, which, for most of us, never made a habit of consulting our social calendars before burdening us with an exacerbation.  I’ve spent several Christmases, birthdays, wedding anniversaries and many-a-Thanksgiving admitted.  As far back as middle school, most of my holidays were spent in the hospital simply because it was an advantageous time for an admission.

It’s not an easy thing to endure for kids or adults.  On a good day, being in the hospital is boring, uncomfortable and tedious.  The holidays magnify our misery by adding self-pity and a serious case of F.O.M.O. to the litany of grievances.  However, there are a few easy things you can do to weather the emotional storm of a holiday admission:

  1. Make a To Do List. While a day of nothing but channel-changing can seem never ending, a daily to-do list can help compartmentalize your day and alleviate the monotony of an admission.  Reading, exercising, playing games or journaling at specific times can be helpful distractions and keep you from staring wistfully out of your window.
  2. Enjoy Holiday T.V. Ordinarily, I don’t watch a lot of television.  But during the holidays there are so many classic movies, parades and specials on, allow yourself to indulge in the holiday deluge.  If nothing else, it helps pass the time and connects you to the outside world (“Hey, did you catch It’s a Wonderful Life for the sixteenth time on NBC?”  “I sure did!” “I don’t really understand why ‘Hee Haw!’ is funny.” “Me either, but Clarence is my favorite.”).
  3. Schedule Holiday Events Post-Discharge. The holidays are the holidays because of family.  The pilgrims will not cast a pox on your house if you host Thanksgiving the following weekend so ask family members if they are willing to attend a second family gathering after your discharge.  This gives you something to look forward to and helps temper loneliness while your family memorializes turkey carving on Facebook Live.
  4. Try a Little Empathy. No one wants to be in a hospital on Christmas, including doctors, nurses and nurse’s assistants.  I know what you’re thinking – “they’re getting paid to be there.”    And so as to preempt your next argument, yes, some are getting paid a higher wage for working on a holiday.  But remember that many don’t have a choice in their work schedules, just as we don’t have a choice as to when we’re admitted.  Staff are away from their families and missing holiday gatherings so they can take care of patients.  Take a moment to tell a favorite nurse thank you for working on the holiday.  Sometimes making someone else feel better makes you feel better too.
  5. Order in a Special Meal. Diet restrictions permitting, indulge in a holiday craving (i.e., turkey with stuffing, Chinese takeout, multiple desserts).  Your doctors will love that you’re packing in some extra calories and it’ll give you a break from repetitious hospital food.
  6. Take Advantage of Tech. Twenty years ago, when we would emerge from an admission (shielding our eyes from the blazing sun, unaccustomed to human life), we had no idea what had occurred during our fourteen days of solitude.  Gone are the days.  With social media and constant connectivity, we rarely experience the same isolation we once did.  Use today’s technology to cyber-attend family events from afar—FaceTime into family dinner or Skype into religious celebrations.  Social media can sometimes (and ironically) exacerbate loneliness, but use its advantages to stay connected during the holidays.  Feeling included can boost morale and help you power through an admission.

Study Links PPI Use to Treat Gastroesophageal Reflux with More Frequent Hospitalizations

Doctors should frequently re-evaluate the use of protein pump inhibitors (PPIs) for cystic fibrosis (CF) patients, urges a University of Florida study which warns that long-term PPI use leads to a higher risk of hospitalization for pulmonary exacerbations.

Identifying risk factors associated with pulmonary exacerbations is critical since they cause a decline in pulmonary function and survival rates among CF patients.

PPI use, in particular, is believed to cause community-acquired pneumonia (CAP). Even though most CF patients use PPIs to control gastroesophageal reflux (GER), scientists still don’t fully understand the link between PPIs and pulmonary exacerbations in CF.

In the study, “Proton Pump Inhibitor Use Is Associated With an Increased Frequency of Hospitalization in Patients With Cystic Fibrosis,” which appeared in the journal Gastroenterology Research, researchers investigated that link and the risks it entails.

The study involved 114 adults who had been seen at UF’s Adult Cystic Fibrosis Center in Gainesville, Florida, between January and December 2016. Researchers collected data on PPI use and hospitalization during a one-year follow-up.

Results showed that 59 of the 114 patients (51.7 percent) used PPI for six or more months, and that exactly the same proportion (51.7 percent) had been hospitalized at least once during the one-year follow-up period. Among those who were hospitalized, PPI use was closely linked with the number of hospitalizations for pulmonary exacerbation, though researchers observed no link between frequency of hospitalization and PPI dosage.

No significant difference was found in GER between hospitalized and non-hospitalized patients.

The UF study is limited, in that it’s retrospective and therefore doesn’t establish a cause-effect relationship between PPIs and pulmonary exacerbation. Researchers say there’s still a possibility that GER itself — rather than the subsequent use of PPIs — causes increased pulmonary exacerbations. Yet they point out that the prevalence of GER was similar among hospitalized and non-hospitalized patients, supporting a causative link between PPI and pulmonary exacerbations.

Based on their findings, the UF team suggests that “prescribers of PPI therapy should exercise pharmacovigilance; frequently re-evaluating indications and appropriateness of therapy and in the setting of GER considering alternate management modalities such as anti-reflux surgery where appropriate.”

For original article please visit: https://cysticfibrosisnewstoday.com/2017/12/07/proton-pump-inhibitor-use-is-associated-with-an-increased-frequency-of-hospitalization-in-patients-with-cystic-fibrosis/

Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

Jerry reviews the various leg stretches and workouts he uses during an extended hospital stay. By working out regularly and keeping his legs nimble and strong, he knows that, as soon as he leaves the hospital, he can get back on his bike and back to training for his next adventure. Always remember – Continue reading Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

Cystic Fibrosis Wind Sprint 56: Extended Hospital Stays and Core Workouts

In response to a Facebook message from Alexandra, Jerry reviews the core exercises he uses to stay in shape during an extended hospital stay. Always remember – no matter what workout you do, use gloves and sanitizer for a clean and safe environment!
https://www.youtube.com/watch?v=e0JtzcUXvbY
Continue reading Cystic Fibrosis Wind Sprint 56: Extended Hospital Stays and Core Workouts

Podcast 172: Exercising While in the Hospital

In this podcast, Jerry Cahill reviews several ways that he stays active in the hospital in order to keep his lungs clear and discusses the importance of holding on to your routine.
https://www.youtube.com/watch?v=QEY7y3-rF40&feature=youtu.be

This video podcast was made possible through an unrestricted education grant from Gilead to the Boomer Esiason Foundation.

The things we do for the hospital

Ironically I had this post planned for the end of January but as I mentioned in my last post I caught the flu and needed to be hospitalized.  So this post got pushed back and I got to try out the things I posted in it.

Though most of us don’t let CF define us, there are times when it does dictate our lives.  Sometimes it can be as big as not advancing in our career because we Continue reading The things we do for the hospital

That is NOT pity worthy IMO

By Amy Braid

I’m currently inpatient getting IV antibiotics. I caught the flu a few weeks ago and as per the course it wreaked havoc on my lungs. But after a week I’m feeling better already and counting down to discharge day.

Continue reading That is NOT pity worthy IMO