This  is the season of emerging. I’m writing this as the summer unfolds: the  days are getting longer and warmer, flowers are blooming, the garden is  exploding with growth. Many people are vaccinated, so we are making  plans, going outside, spending time with friends, and even hugging! We  are emerging from our cocoons of safety. It has been a long, dark, and  lonely year-and-a-half for many of us with cystic fibrosis who’ve had to  take extra precautions during the pandemic. And now that a  reintroduction to normal life is beckoning, I’d like to ponder the act  of emergence.

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Emerging  means entering a new world. It takes courage to leave one’s comfort  zone and enter the new unknown. We might peer out into this changed  world and see what’s next for us. For some, our homes have been a safe  haven. This is a place to return to when we feel threatened or afraid.  Emerging can feel shaky—full of trepidation and anxiety. Putting  ourselves “out there” can make us vulnerable. Much like our eyes hurt  when we emerge from a dark cave and are stunned by the sunlight,  sometimes we have to take it slow and adjust before we mobilize.

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Emerging  will come with risks. These include physical risks in the case of  infection rates or threats from the environment, but they also could  include relationship risks. We may be tempted to do riskier things, we  may be judged by others, or we may reevaluate who is most important in  our lives. For example, as someone post-transplant, the vaccine is  likely not effective, so I’m the only one in my workplace now who does  not yet come to the office. I have to explain myself, and it’s hard to  stand out and need special accommodation.

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Emerging  from all kinds of scenarios is a common life experience, but it has  greater relevance in the cystic fibrosis experience. In the simplest of  ways, many of us have emerged from the MRI machine or the OR relieved  that that was over. I remember emerging from so many long hospital  stays, with wobbly knees and weakened muscles, inhaling the fresh air  outside the hospital with great appreciation. It felt so good to be free  again, but I’d have to learn to return to normal activity. It meant  returning to school or disclosing to others about why I had been gone  for so long. And, after my transplant, I remember emerging from the  protected indoors and taking off my mask outdoors for the first time and  inhaling. I felt both scared and mischievous, like a little child  courting trouble. It was just a breath, but my first as an  immunocompromised person. I felt both bold and terrified, together. I  was overwhelmed with gratitude at this miracle.

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Those  with CF who’ve had a transformation in their health, either with a  modifier drug or transplantation, serve as a symbol for emergence. It  has been thrilling to witness some of my CF friends skyrocket into  health after years of unpredictable disease. One friend is backpacking  like crazy, untethered from treatments. One was traveling the world  (before COVID-19 hit). One had a baby. One went back to graduate school.  Our futures, opportunities, and newfound health offer tremendous hope  and possibility. We need to find our next plan and purpose.

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Emerging  can lead to psychological transformation as well. The word itself  implies having a new start or a new perspective. After a difficult  experience, we can emerge with increased confidence and self-awareness  that makes us capable of facing another challenge. I remember so many  times as a child, after I was discharged from the hospital, I was more  determined than ever to stay out of the hospital. I’d start jogging on  my wobbly legs and try my best to keep my lungs clear. This time it’ll  be different, I’d think, with a fierce spark of motivation to fight my  CF.

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And what  can emergence do for spiritual transformation? Of course, there are  many examples of spiritual transformation in religion. When Noah emerged  from the Ark after surviving the flood and found dry land, he built an  altar to make an offering to the Lord. God blessed Noah and told him to  repopulate the Earth. When Jesus emerged from 40 days and nights in the  wilderness, where he was tempted by the Devil, he was ready to begin his  ministry. When Buddha emerged from his protected and opulent palace, he  was stunned to witness all the suffering and struggle in the outside  world. He pledged to study meditation, the ancient doctrines, and  achieve Enlightenment.

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As we  emerge from this strange time of the pandemic, we have the choice to be  changed inside. We might have a renewed appreciation of our friends and  family, of access to food and toilet paper, of a hug, of a restaurant  meal, of essential workers, of vaccine research. We might shift our  priorities and decide what really matters. Some of this is made evident  by the “resignation boom” seen in our country. We also might reevaluate  how we spend our time and decide the slower pace of sheltering life is  healthier than the busy pre-pandemic rat race. Perhaps we might even  have spiritual intentions to emerge from this pandemic with greater  faith or stronger spiritual practices. With all that’s on the news,  maybe we pledge to be kinder, more compassionate, and non-violent toward  others. I know I have a new commitment to surrender my fears of the  unknown to my higher power.

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As we  remember the 600,000 Americans who have died from this pandemic,  including at least 11 people with cystic fibrosis (as of March 2021, per  cff.org), we feel lucky to have the chance to reenter the world again.  Dr. Elisabeth Kübler-Ross became a profound believer in life after death  after studying dying people for decades. She believed that in this  life, our bodies are a chrysalis, and, after death, the soul emerges  from this shell and becomes a butterfly. It is free to roam and fly,  unencumbered by the body. And so, I’d like to believe that the victims  of the pandemic, too, have their own chance to emerge into a better  place.

I  acknowledge and truly respect my CF peers who actually did not have the  luxury to seclude themselves during the pandemic. Those include  essential workers and healthcare providers living with CF. While I have  worked safely from home, as a grief counselor I have been a front-line  worker in a different sense—in mental health. I am changed forever by  the suffering I have witnessed. It sure puts CF into perspective. I am  deeply grateful for my CF community that has spared me from burnout,  depression, and isolation. I emerge slowly from this pandemic with a  renewed intention to enjoy life, to work less, to cross more things off  my bucket list, to strengthen my body, to love more fully and to not  take my relationships for granted. I hope you, too, can ponder what will  change for you after your post-pandemic emergence.

Isa Stenzel Byrnes is 49 years old and has CF. She lives in Redwood City, California. She is 17 years post-lung transplant.

Many  people have submitted questions related to unemployment benefits. Some  states are ending some categories of unemployment benefits early, which  is confusing and causing stress for select individuals with CF who have  been receiving unemployment benefits. Nothing in this article is meant  to be legal advice and is only information.

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If  you have questions about laws related to unemployment benefits, Social  Security benefits, Medicaid, Medicare, health insurance, employment, and  education rights, you may contact the CF Legal Information Hotline at CFLegal@sufianpassamano.com or 1-800-622-0385.

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Question:  I have been receiving unemployment benefits during the pandemic because  it has not been safe for me to return to in-person work and my job  cannot be done remotely. I was receiving an additional $300 per week of  federal pandemic unemployment compensation benefit, but just learned  that the extra $300 per week stopped in June. I thought the additional  $300 per week of Federal Pandemic Unemployment Compen-sation (FPUC)  benefits was supposed to continue until September 2021. Why has it ended  now?

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Answer:  FPUC benefits have been a helpful source of assistance during the last  year. The rules can be confusing because Congress adopted several laws  addressing unemployment compensation during the pandemic: Pandemic  Unemployment Assistance (PUA), Pandemic Emergency Unemployment  Compensation (PEUC), Mixed Earner Unemployment Compensation (MEUC), and  Federal Pandemic Unemployment Compensation (FPUC).

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This  question deals with Federal Pandemic Unemployment Comp-ensation, which  is perhaps the most familiar and widely used unemployment compensation  program. FPUC is a federal supplement offered to states in addition to  the usual state unemployment benefit. FPUC was originally a  $600-per-week federal supplement offered to states under the CARES Act.  However, the $600-per-week supplement provided in the CARES Act expired  on July 21, 2020. In a consolidated appropriations act, Congress  extended the FPUC expiration date from July 21, 2020 through March 14,  2021, but reduced the amount of the federal supplement from $600 per  week to $300 per week.

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In March  2021, Congress adopted the American Rescue Plan Act. This further  extended the $300 per week offer of FPUC to states until September 6,  2021, which is the current expiration date of FPUC.

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An  important aspect of FPUC is that the funding of the benefits is offered  by the federal government to state unemployment agencies. The states,  however, are not obligated to accept the offer of additional federally  funded benefits to workers. States may elect not to participate, and  states that have elected to participate in the expanded unemployment  compensation benefits under FPUC may elect to discontinue participation  at any time before the program expires in September 2021.

A small  number of states have ended their participation in FPUC in June and  others will end their participation in July before the program  expiration date in September 2021.

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Fortunately,  it seems like at least 25 states will continue their participation  through the end of the program in September 2021. Consequently, whether a  particular worker will continue to receive the $300 per week federal  supplement to unemployment compensation benefits will depend on the  state paying the underlying unemployment compensation benefit.

Keep in  mind that this question addresses FPUC, but there are other federal  pandemic-related unemployment compensation programs (PUA, PEUC, MEUC,  etc.). While they all deal generally with unemployment compensation  benefits, they all have important differences regarding eligibility and  benefits. So make sure that any information you may read about changes  in unemployment compensation benefits or eligibility relates to the  specific program from which you receive your benefit. A person can  usually check their online portal on their state’s unemployment website  to determine which type of benefits they are receiving.

Question:  If my state ends participation in the additional $300-per-week federal  unemployment benefit under FPUC, does that mean I will still receive the  other pandemic-related unemployment compensation benefits?

Answer:  It depends on what your state elects to do regarding its participation  in the federal pandemic unemployment compensation programs. But, if your  state opts out of the FPUC, it has probably opted out of the other  pandemic unemployment compensation programs as well.

The FPUC  that provides for the additional $300 per week is one of three new  unemployment compensation programs created in March 2020 by the CARES  Act to address COVID-19-related unemployment. The other two programs are  the PUA and the PEUC. Each of the three programs is designed to meet  different needs, but all provide a benefit in addition to the usual and  regular amount of unemployment compensation typically available under  pre-pandemic circumstances.

The PEUC  is an extension of the eligibility period of the usual and regular  state unemployment compensation benefits. PEUC extends unemployment  compensation benefits for workers who have qualified for unemployment  compensation benefits, but who have exhausted the usual and regular  state unemployment compensation benefits. PEUC benefits are funded by  the federal government and administered through state unemployment  agencies.

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When the  CARES Act first created the PEUC program, it was set to expire on  December 31, 2020. However, like the other federal pandemic unemployment  compensation programs, the expiration date was extended to March 14,  2021 by the Consolidated Appro-priations Act. The PEUC expiry date was  extended again under the American Rescue Plan Act (ARPA) and is now set  to expire on September 6, 2021.

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The  September 6, 2021 expiration date relates to the time period that the  federal government will make funds available to states; it is up to the  states to accept the federal funds and make them available to unemployed  workers. If a state opts out of participation in the pandemic  unemployment programs, then the benefit will not be available in that  state.

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ARPA not  only extended the expiration date of PEUC, but it also increased the  number of weeks a person can receive PEUC benefits. Under ARPA, an  eligible worker can receive up to 53 weeks of PEUC benefits. Again, even  though ARPA extended the number of weeks the federal government will  make pandemic unemployment compensation funding available to states  under PEUC, the states must choose to accept the federal funding for the  PEUC benefits to be available to unemployed workers.

The  situation is similar with the PUA. PUA is designed to temporarily assist  workers who were typically ineligible for regular state unemployment  compensation, such as gig workers, self-employed persons, and  independent contractors. The PUA program was also created under the  CARES Act, and its expiration date and maximum benefit period were  extended by the Consolidated Appropriations Act and ARPA. PUA currently  has a maximum benefit period of up to 79 weeks and the program expires  on September 6, 2021. However, like the PEUC and FPUC, the PUA benefits  are only available to workers if the state is participating in the PUA  program.

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Question: Which states have opted out of federal pandemic unemployment compensation programs?

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Answer:  As of June 26, 2021, the following states have ended or plan to end  their participation in one or more of the federal pandemic unemployment  compensation programs:

June 12, 2021: Alaska, Iowa, Mississippi, and Missouri;

June 19, 2021: Alabama, Idaho, Indiana, Nebraska, New Hampshire, North Dakota, West Virginia, and     Wyoming;

June 26, 2021: Arkansas, Florida, Georgia, Ohio, South Carolina, South Dakota, Texas, and Utah;

June 27, 2021: Montana and Oklahoma;

July 3, 2021: Tennessee;

July 10, 2021: Arizona.

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States  that continue to participate in the federal pandemic unemployment  compensation programs will have federal funding for benefits available  through September 6, 2021.

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The most  up-to-date source of information on unemployment compensation in the  state where you live is your state’s unemployment compensation agency.  Most state agencies have current information and notices on their agency  website.

Beth  Sufian is 55 and has CF. She is an attorney who focuses her law  practice on disability law and is the Treasurer of USACFA. Her contact  information is on page 2. You may contact her with your legal questions  about CF-related issues at CFLegal@sufianpassamano.com.

Trying  to get pregnant was go to the pharmacy and load up on Mucinex  (guaifenesin). I’d been in a Facebook group called Cystic Fibrosis  Mummies for about a year at that point, and I knew that thick cervical  mucus was often an obstacle to women and trans people with CF who wanted  to get pregnant—and that, for many patients, guaifenesin successfully  thinned cervical mucus enough for conception to occur.

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I turned  out to be one of the rare people for whom guaifenesin has zero effect,  but that wasn’t the last alternative therapy I tried in my quest to  overcome the obstacles CF placed on my path to becoming a mother. Over  the years of my fertility journey, I tried special brands of  sperm-friendly lubricant, herbal preparations that promised to even out  my irregular cycles, and even drinking a small cup of grapefruit juice a  day, which did successfully thin my cervical mucus. (Grapefruit  interacts with all Vertex modulators, so please talk to your doctor if  you’re on a modulator therapy before trying anything involving  grapefruit!)

I became  a self-titled expert in fertility, reading book after book about the  complex processes necessary to lead to conception. I learned to chart my  cycles with a dizzying amount of detail, until I was able to pinpoint  specific fertility problems I was having long before my doctors could.

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These  days, Cystic Fibrosis Mummies on Facebook has grown to include over a  thousand members, and other Facebook groups like Moms With Cystic  Fibrosis have also arisen to give space to women and nonbinary people  with CF who have children or are trying to have children. Although many  things have changed in the decade since I loaded up my shopping cart  with Mucinex, there’s still a lively conversation among women with CF  about alternative therapies that can help a CF patient conceive.

In this  article, I’ll share a few of the commonly recommended strategies that  have helped some people with CF overcome problems such as overly thick  cervical mucus and successfully get pregnant. Please know that I am not a  doctor and nothing in this column should be taken as medical advice;  rather, see these suggestions as something that you could potentially  explore with your CF care provider or gynecologist.

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1. Guaifenesin to thin cervical mucus.

As I  mentioned, this is one of the oldest and most-trusted alternative  therapies for thinning cervical mucus in people with CF. Guaifenesin, an  expectorant, helps to thin secretions throughout the body, and many  patients have noticed a positive difference in the texture of their  cervical mucus. Guaifenesin is sold under the brand names Mucinex and  Robitussin, as well as generic labels. When purchasing, make sure to get  a preparation that includes only guaifenesin, as other ingredients in  cold medicines (such as dextromethorphan) may suppress coughing and make  it harder to clear your lungs.

2. Use a fertility-friendly lubricant.

For  conception to happen, cervical mucus has to be the right consistency to  allow sperm to survive long enough to reach an egg. In many CF patients,  cervical mucus is less like egg whites and more like rubber cement,  which can provide very effective birth control! There are several brands  of lubricant on the market that simulate the texture of fertile  cervical mucus, without including ingredients that would be toxic to  sperm. Some brands include Pre-Seed, Conceive Plus, and Yes Baby. (Note  that the method to use these for conception is different than using a  normal lubricant to make sex more comfortable; be sure to read the  directions fully.)

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3. Get to know your menstrual cycle.

For many  people with CF, cervical mucus is the big fertility hurdle and  menstrual cycles are normal. For others, however, CF can cause menstrual  irregularities. Before I started on Kalydeco in 2012, it was common for  me to have four periods a year at most, and not at all uncommon for me  to go nine months or more without a period if I got sick. Learning to  chart your menstrual cycle using morning temperature checks as well as  signs such as cervical position and cervical mucus consistency can give  you a wealth of information about what might be affecting your menstrual  cycle. In learning to chart my own cycles, I realized that I was low in  both estrogen and progesterone—something that helped me pinpoint where  conception was going wrong and helped later, when I had to take  progesterone supplementation during my pregnancy. The book Taking Charge  of Your Fertility is a comprehensive overview into how to use charting  to your advantage; there are also many apps and websites that can help  you figure out how to get started.

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4. Use a menstrual cup after sex to increase the likelihood of conception.

One of  the most common old wives’ tales about upping the chances of pregnancy  is that after sex, a woman should lay for a specified amount of time  with her legs up against the wall. Thanks to modern technology, there’s a  much easier version of this trick! Some CF patients swear by inserting a  menstrual cup immediately after sex and keeping it in for a few hours,  which helps keep sperm close to the cervix for as long as possible.

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5. Try supplements to regulate your cycles.

For some  patients who struggle with irregular menstrual cycles, herbal  supplements might help to support normal menstrual function. Two popular  herbal remedies for irregular cycles are red raspberry leaf (available  in tea form or capsules) and vitex/chasteberry (available in capsules).  Although many cases of irregular menstruation will require more medical  intervention, herbal preparations can help regulate cycles in some  cases.

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For many  women and trans people with CF who struggle with infertility,  conception will take a skilled fertility doctor and medical  interventions such as Clomid, IUI, or IVF. But if you’re just getting  started on your fertility journey and want to maximize your chances as  much as you can, these alternative therapies can be immensely helpful in  overcoming some of the common issues with CF and fertility.

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In the  end, I personally wasn’t able to conceive until I started Kalydeco  shortly after its release. Still, I saw interventions like the ones I’ve  shared here help many people with CF conceive despite the unique  challenges that CF brings to fertility! As always, please make sure that  your medical team is aware of any supplements you’re using. s

Cindy  Baldwin is 32 years old and has CF. She lives near Portland, Oregon,  with her husband and daughter. Cindy is the author of several middle  grade books published by HarperCollins, including The Stars of Whistling Ridge, which released in June 2021.

Growing  up in the 1990s, I always knew on some level that being “alternative”  was cool. But it wasn’t until I became a medical sociologist that I  realized how subjective the “alternative” label really is. In  healthcare, something called “medical authority” determines what gets  commonly regarded as valid treatment. This is basically a system of  power and control in which people regarded as medical experts get to  decide what does and does not count as legitimate care.

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If  you’re interested in learning more about how medical authority works, I  highly recommend the work of Dr. Peter Conrad, especially his book The  Medicalization of Society. For today’s article, all you really need to  know is that deeming things “alternative” is a form of “boundary work.”  This term also comes from sociology; it describes how people  intentionally set up divisions between different things. Sometimes this  is useful, of course—like labeling household cleaning chemicals as  hazardous materials that should not be ingested. But sometimes it can  have harmful consequences too.

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Adults  living with CF often understand well that what works for one of our  peers may not work at all for our own care, and vice versa. This  explains why there are so many different antibiotics out there that may  be effective against the same bacteria—or not, depending on the person  and a host of specific factors. It also explains why some of us take  different pancreatic enzymes than others or get wildly different results  from the same enzyme formulary. And, at one point, none of these  therapies were part of medical research or care at all!

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Think  about the medications you take for your own CF or the medications your  loved ones take to stay well. Were all of these available when you were  born? I suspect not! Regardless of whether you have CF yourself, you  have likely benefited at some point in your life from a treatment that  would have been considered completely fringe—or even inconceivable—in  the past. If you’ve gotten a vaccine for COVID-19 this spring, that’s a  perfect example! So when I think about “alternative” medicine, I make  space for the idea that some of these therapies will one day be part of  commonly accepted scientific wisdom and healthcare practice standards.  My position on “alternative” treatments is thus that everything is  alternative until it isn’t.

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I got to  have one of these experiences of “alternative” therapies becoming  accepted in mainstream biomedical science and the associated  “allopathic” model of medical care just a couple years ago. My  particular presentation of CF—remember, each of us can be quite  different from one another—has often involved recurrent infections in  the bladder and kidneys. Ever since my preteen years I would get several  bladder infections each month that would often migrate up into my  kidneys, causing damage to the membranes and a lot of pain in both  areas. This cycle left me with chronic kidney disease and a host of  other physical issues by my early 20s. It also impacted my mental health  adversely, even leading to thoughts of suicide.

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Just  being on oral antibiotics constantly didn’t seem like an upgrade, given I  would basically have been trading pelvic and flank pain for worse GI  issues and more destruction of my joints. And because I wasn’t open to  being on narcotic pain relievers constantly, pretty much my only option  for treating the acute pain was phenazopyridine, a drug that can help  with pain from urinary tract infections. Phenazopyridine definitely  works, but at a significant cost as the drug itself can be quite rough  on the kidneys.

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So often  I did what a lot of us do and just kind of toughed things out. You get  used to living with that kind of pain, somewhat. Eventually things got  bad enough that I needed surgery to remove scar tissue from my bladder. I  learned to prevent some of the worst damage and scarring by taking  antihistamines when I’d have infections; this at least prevented the  immune cells in the membranes from attacking the rest of the tissue. But  the infections kept happening, and I kept suffering.

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Then one  day when I was discussing all of this on my Facebook page, something I  would often do in the spirit of education and awareness, a colleague  asked if I had ever tried using something called d-mannose to prevent  infections in the urinary and renal systems. I had to Google it; this  was the first time anyone had mentioned d-mannose to me as a possible  therapeutic option. This colleague said they had been skeptical about it  until happening upon a significant evidence basis suggesting it may  help with UTI prevention.

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Finding  anecdotal evidence online about the possible utility of d-mannose was  quite easy. I also learned the basics of how it seems to work. D-mannose  is a sugar alcohol that binds to E. coli bacteria, sort of like fiber  can bind to fat in the digestive tract. Because d-mannose and E. coli  have such an affinity for each other, the presence of d-mannose in  urinary fluids can help these bacteria exit the system instead of  sticking around and colonizing the tissue. And because it is not an  antibiotic but rather something that could already be present in ambient  quantities in food, there are few safety concerns with d-mannose.

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So, I  looked into the clinical literature to see if I could find anything  there to discuss with my providers. Sure enough, I not only found some  recent general studies indicating that d-mannose could be helpful but I  also found some specific literature about exploratory use of d-mannose  for respiratory health among people with CF! D-mannose began as an  “alternative” therapy for UTIs, made its way into the clinical urology  literature, and then caught the attention of specialists in other areas  of allopathic medicine. I found it unsurprising that clinicians who work  with people predisposed to recurrent bacterial infections beyond the  urinary system would be among the first to take interest in its  potential applications beyond urology.

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I  consulted with my clinic about potentially incorporating d-mannose into  my daily medication regimen. After I reviewed both the scientific  literature and some particularly helpful educational resources from more  lay-oriented sources with my CF care providers, they agreed that this  would be a good approach to try for controlling my recurrent urinary and  renal infections. I purchased some d-mannose caplets from a corporate  nutritional supplier and began taking them daily. Not expecting much, I  felt completely shocked when, within just a couple of days, I stopped  having any ambient discomfort in my bladder.

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I kept  careful track of what I experienced over the next few weeks and  presented my data to my clinic team at my next well visit. We observed  clear evidence of a dose-response relationship and temporal association  between me taking d-mannose a couple times daily and experiencing  near-complete remission with my chronic bladder and kidney infections! I  was even able to present observational data about increasing my  d-mannose dosage during times when I experienced early symptoms of acute  infection, and subsequently feeling the discomfort subside within a  couple of days.

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Two  years out from this initial experience, I do feel I have sufficient  experiential data to consider d-mannose an important element of my daily  care. This journey has been an eye-opening exercise engaging my own  skills as an epidemiologist and medical educator. It has also given me  more of a vocabulary to describe how so-called “alternative” therapies  can easily become commonly accepted practice within allopathic medicine.

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The  beauty of evidence-based care is that there are always opportunities to  develop and embrace evidence for new and exciting treatments that offer  better quality of life. We see this happening constantly in the wide and  diverse world of CF care. Getting to be part of the evolving science on  infection control has been a fantastic experience—both because it has  been an exciting intellectual challenge and because my own physical  comfort has improved vastly in the process!

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So  today’s “pearl of wisdom” is to keep an open mind about what may lie  just beyond the horizon of current clinical evidence, and to collaborate  proactively with your care team on leaning into exploration of emerging  therapies from the “alternative” world. Today’s complementary therapy  may be tomorrow’s standard care. And that process of innovation happens  more efficiently and effectively when those of us living with chronic  conditions like CF get educated and activated about helping our care  teams contribute to thoughtful research about emerging therapies.

Dr.  Alexandra “Xan” Nowakowski is 37 years old and has CF. Xan is a  director of CF Roundtable, in addition to being a medical sociologist  and public health program evaluator. They currently serve as an  Assistant Professor in the Geriatrics and Behavioral Sciences and Social  Medicine departments at Florida State University College of Medicine.  They also founded the Write Where It Hurts project (www.writewhereithurts.net)  on scholarship engaging lessons from lived experience of illness and  trauma with their spouse, Dr. J Sumerau. You can find their contact  information on page 2.

Living  with CF is something that many of us have had to gradually learn to  accept at some point in our lives in order to continue moving forward  with life despite the numerous obstacles and setbacks. For me, having  been diagnosed at the age of three, one might think that by now I have  found peace with my reality. The truth is, however, I, like many others,  am not always willing to accept this fact. Nonetheless, over the years  through the process of self-discovery, I have found tremendous benefit  in seeking out not only professional medical help, but also  long-standing wisdom contained within countless spiritual texts from  cultures all around the world in an attempt to deepen my understanding  of life, its purpose, and the meaning of suffering.

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Anyone  who knows me well also knows that I tend to overthink everything.  Recently, I have come to realize that this tendency is perpetuated by my  good fortune of having too much time to think—ruminating and reflecting  on what was and what could have been. I often find myself bursting into  tears at the most innocuous stimuli, largely, in my estimation, due to  unresolved traumas past. Part of my personality is to seek deep  understanding and connection with people, places, and events. In doing  so, however, I often find that this results in an endless “dog chasing  its own tail” scenario. To simply be present, and mindful is an act that  often proves, without discipline and intention, not so simple.

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When  thinking about alternative therapies and CF, there are many that come to  mind. Like other adults with CF, I have found myself at various points  in my healthcare journey desiring more solutions, more options, and  better alternatives than what the traditional western medical  establishment has been able to provide. Taking up the initiative to  heal, fix, and treat myself has always been a road down which I have  always been willing to travel with survival and longevity hanging in the  balance.

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While I  continue and always have believed that you are your own best advocate,  sometimes the added stress and anxiety of trying to fix yourself can  become too big of a burden to bear. When you are fighting for your life,  taking on the roles and responsibilities of many other specialized  professionals who have far more resources, education, experience—not to  mention the fact that they are getting paid to do so—can be  overwhelming.

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This  brings me to the form of alternative therapy which I have found most  beneficial: meditation. My first real exposure to the practice of  meditation came about 20 years ago when I was in the 8th grade. I  attended a Catholic school where a beloved religious studies teacher  decided that rather than following the prescribed curriculum and  teaching from a textbook, he would, instead, teach us how to meditate. I  can remember sitting in the classroom, some students taking this more  seriously than others, being guided to close our eyes, quiet our minds,  and try to bring our conscious awareness to the inflow and outflow of  our breath. When our minds were bombarded with thoughts, as they  inevitably were, we were told to imagine them as one might watch an  airplane pass by as it flies overhead. Observe and acknowledge their  presence, but do not become attached to them. Let them come and go like  the waves rolling up and back down the beach. If anything, at the time  it was a great opportunity to take a nap for those who were so inclined,  but for others including myself, I found the whole process surprisingly  relaxing. It certainly was better than having to read from a textbook.  Through these guided meditations, I slowly began to understand how to  bring my awareness to different parts of my body: fingers, toes, neck,  etc. and recognize whether any tension or unusual sensation was present.  With the addition of controlled breathing, deep breaths in and out in a  deliberate manner, we learned that even if there was pain or discomfort  in our bodies, there was a way to release our attachment from it. By  not focusing our conscious awareness on these sensations we relinquished  them of their power to cause suffering. I began to feel that maybe  there was something to this.

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I didn’t  quite understand the benefits or reasons behind the practice initially,  but as I continued on into high school, group meditations became a  regular part of annual class retreats when reflection and introspection  was encouraged.

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It  wasn’t until several years later, during the second semester of my  junior year in college that the practice of meditation came back into  focus for me personally. While attending a Mardi Gras parade in New  Orleans in 2009, I and seven other innocent bystanders fell victim to an  indiscriminate shooting by two young men who were tasked to do this as  part of a gang initiation. I suffered an abdominal gunshot wound and  afterwards, as part of the healing process, I decided to rekindle a  sincere routine of meditation to help me heal from the trauma in both  body and mind. I read Deepak Chopra’s book, Quantum Healing, during my  recovery and I would regularly listen to guided meditations online. I  found these very helpful as they aided me in mentally visualizing the  healing taking place in my body, which I so desperately hoped for.

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Subsequently,  during my senior year, I elected to take a course on eastern religions.  As part of the required reading for the class my professor had us read,  The Miracle of Mindfulness, by Thich Nhat Hahn. Thich Nhat Hahn is a  Vietnamese Zen Buddhist monk who has written many books on the art and  practice of mindfulness. I remember being very positively impacted by  the message of this book and once again was reminded of the power of  bringing my awareness and attention to the present moment through  purposeful and intentional breathing. In the years since, I have fallen  both in and out of the practice of meditation and mindfulness but always  find it beneficial when I have made time to include them into my daily  life. There are many different forms of meditation and every individual  should seek out that which resonates with him/her. Today, there are many  books, apps, and resources available for anyone desiring to learn and  benefit from this practice.

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One  lesser-known form of airway clearance, which I have been exposed to as a  result of my meditation experience, is autogenic drainage. This  organized, intentional, and controlled form of breath work has been  something that I have found great benefit from at times for clearing  secretions when other forms of airway clearance such as positive  expiratory pressure like the Flutter, Acapella, or Aerobika are not  feasible due to increased friability in my lungs which can lead to  frequent episodes of hemoptysis. If you have experience with meditation  this particular form of airway clearance may come easier as it does  require discipline and controlled technique which may not come easy for  the inexperienced.

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In sum,  it is my hope that the CF community at large, including traditional and  non-traditional medical providers, can take it upon themselves to be  open to and encourage all methods of care and treatment for those who  suffer from this awful disease. Which brings me to the final alternative  practice which everyone can benefit from—gratitude. In my short  lifetime, the process of drug development and the evolution of care for  CF has come a long way and we all stand to benefit. Personally, I am  beyond grateful for the hard work and dedication that all who are  working towards a cure have put into this most noble of causes.

For me,  alternative therapies have always been “on the table”—so to speak—with  regard to my CF care and overall wellness. As an individual who has only  recently had the opportunity to benefit from CFTR modulators,  traditional CF care has always seemed somewhat lacking to me. When faced  with loss, in this case with regard to health and all that that  implies, I have never taken no for an answer nor believed that the only  remedies are those that are prescribed by a physician. In some ways,  this may have overcomplicated things for me mentally, but in other ways  it has added layers of beauty and understanding for which I am ever so  grateful. s

Dave  Tarnow is 32 years old and has CF. He lives in Erie, Colorado. Dave is  the founder of “Dave’s Cycle for a Cure,” which inspired the national  Cystic Fibrosis Foundation event now known as “CF Cycle for Life.” You  may contact him at dtarnow@usacfa.org.

It  seems alternative therapies or ancillary treatments inevitably come up  whenever CF folks gather, which makes immanent sense considering that  most CF adults are either consciously or subconsciously fighting for  every breath. Although I’m tempted to take this opportunity to detail my  alternative therapies of choice, I’ll instead exercise some restraint  and talk about why I think it’s important to pursue alternative  therapies and use all the arrows in our quiver.

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Let me  begin by saying most mornings I drink a glass of orange juice with green  superfood to make up for the fact that I don’t get enough fruits and  vegetables in my diet. Admittedly, the drink is disgusting and tastes  even worse than it sounds, but it prevents me from having to cram bulky  fruits and vegetables into my gut while I’m trying to hit my ambitious  daily protein and caloric targets.

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Additionally,  when I’m feeling run down, I eat oranges every two hours around the  clock. I began doing this after I read about Linus Pauling’s  groundbreaking research on how vitamin C can help fight infection.  However, it should be noted that while Pauling’s research did show that  high doses of vitamin C may enhance immune function in the general  population, those benefits do not necessarily translate to CF patients.  One key reason is that certain immunological responses, such as the  release of large phagocytic cells into the lungs in response to  infection, increase irritation, swelling, and congestion, thereby  exacerbating pulmonary restriction.

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Nevertheless,  I believe the very act of researching, testing, and ultimately  incorporating alternative therapies can benefit us mentally even more  than the direct physical benefits we may derive from the interventions  themselves. To illustrate this, indulge me while I delve deeper into why  I eat oranges when I’m run down. Before I begin, I should point out  that it is fairly well known in dietary medicine that vitamin  supplements in general are a poor substitute for food-based  micronutrient sources because a high percentage of the nutrients in  pills and capsules are never metabolized.

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When I  originally started taking megadoses of vitamin C, it was based on my  somewhat naïve fondness and admiration for Linus Pauling, an iconic  Nobel-prizewinning scientist and one of the world’s most well-known  humanitarians; he is less known for his vitamin C research, which has  been largely discredited. Nevertheless, the world was seemingly as  equally enamored as I because his advocacy of vitamin C tripled the  world’s vitamin C consumption almost overnight and launched the  modern-day vitamin supplement industry. However, it has since been  revealed that his vitamin C advocacy was largely based on his relatively  unscientific observation that children at a snow camp in the Swiss Alps  who received one mg of vitamin C daily had shorter-lasting colds.

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That  begs the question: if I’ve known this all along, why have I continued to  eat oranges every two hours at the onset of a cold? The answer lies in  why I started and how my reasons have evolved over time. I was 19 years  old and studying organic chemistry when I first became fascinated with  Linus Pauling and his vitamin C research. At the time, although I  understood chemistry better than most, I could not even begin to fathom  the complexities of the immune system in a CF patient. Consequently, I  surmised that if I could enhance my immune function, I could shorten the  length of my colds and therefore reduce the number of days I was highly  susceptible to exacerbation. At the time, my lungs were somewhat  healthy and, more often than not, I could weather colds and even mild  exacerbations with just extra rest, vitamin C, and oral antibiotics.

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But I’ve  recently realized there are other mental and emotional reasons for my  continuing this practice even though I no longer believe in the direct  health benefits. Since my earliest and sometimes traumatic encounters  with this disease, I subconsciously developed a bad habit of obsessively  “checking” my throat—swallowing repeatedly and consistently throughout  the day to see if my throat is, in fact, sore or if I’m just overly  worried about the possibility of being sick. The high acidity in the  oranges irritates my throat, thus tricking my brain into interpreting  even negative throat checking results as ambiguous findings. This  effectively mitigates my tendency to catastrophize or project negatively  into the future the worst possible outcomes, which causes me heightened  anxiety, sleep disturbance, emotional instability, and more worry.  Regardless of whether I end up suffering through a full-blown  exacerbation, eating oranges decreases the frequency of my pointless  throat checking, lessens my anxiety, enables me to heal and rest more  easily, which, in turn, diminishes the probability that I’ll suffer a  full exacerbation.

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As I’ve  gotten older, colonized more pernicious and resistant bugs, and my CFRD  has become less stable, my ability to weather a cold without ending up  in full exacerbation mode has lessened, despite the addition of  Trikafta. However, when I’m feeling run down and my wife or I pick up a  bag of oranges, it’s a key step in preparing me for the battle ahead.  I’m telling my body to still have hope that we can get through this  without an exacerbation, Therefore, the mere act of buying and eating  oranges instills hope in me that this battle-worn, tired, old body still  has another fight left in it and maybe, just maybe, this time I’ll be  able to beat the enemy without firing a shot or losing ground.

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Not only  do I believe incorporating alternative therapies is beneficial, but I  also believe that researching, testing, and selecting alternative  therapies is beneficial, both psychologically and emotionally. When we  spend time doing these activities, we are affirming that better health  is within our grasp and we are equipping and empowering ourselves to  play a fundamental role in producing that outcome.

To  explain this, let me tell you about a trip to Belize that I never took. I  played for a rather competitive rugby club in college, and it was every  team’s goal to make it to the playoffs, which meant you got an  all-expense-paid vacation to some exotic location to participate in an  intercollegiate rugby club tournament. Since I grew up in a  middle-income household, in the poorest county of upstate New York, and  hadn’t been anywhere more alluring than Binghamton, New York, in more  than a decade, the goal of going became all consuming.  To that end, I  trained heavy in the weight room, spent more time on the treadmill,  pushed myself harder in practice, and even watched tapes of the great  European teams in an effort to improve my technique. In my junior year  of college, we had a particularly strong rugby team that featured  outstanding seniors. Despite losing two of the best players in the  league during most of the spring season while they were in recovery, we  ended up having a banner year and ended the season with just two losses.

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As soon  as we clinched a playoff spot, I began dreaming of Belize. I became a  non-stop Belize commercial to the great annoyance of my teammates.  However, as the day drew near, San Pedro, the location where we were  slated to go, caught the attention of national media outlets for  political unrest and violence. So, as luck would have it, two days  before we were about to board the plane, the trip was canceled. However,  later that day when the rugby moderator came across me moping in the  library, he sympathized with me and reminded me that, even though the  trip was canceled, it wasn’t all for naught: I had improved my strength  and stamina, I became a darn good rugby player, I helped two of my  buddies get sober, and I took dozens of mental vacations to Belize,  which were probably better than the actual trip would have been. He went  on to say that he spends almost every summer doing missionary work in  Belize and that it’s not as great as it seems. In short, I benefited  from the placebo effect of a Belize trip that never was, which is the  same thing our minds do when we’re proactively pursuing alternative  therapeutic approaches.

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In the  end, I’m confident spending time researching, testing, and selecting  alternative therapies to incorporate into our care routine is  emotionally, psychologically, and mentally beneficial because these  activities are born out of hope for a better future, reinforce our  belief that better health is within our grasp, and empower us to believe  that we can be instrumental in manifesting that better future. Also, in  the context of a disease which constantly reinforces powerlessness,  proactively pursuing alternative therapies can help us feel more  powerful so that we may better enjoy the fruits of a more fulsome  optimism. s

Mark  Tremblay is 52 years old and has CF. He lives in Albany, NY, with his  wife, MaryGrace. He has a Master of Arts in Psychology from Marywood  University and a Master of Public Administration from Syracuse  University. Mark has worked in the New York Governor’s Division of  Budget for six years and presently works full time at the Department of  Health. He is the President of “CF Vests for Life,” which collects  donated therapy vests, nebulizers, and oxygen saturators for  distribution to CF patients around the world. Additionally, he is the  leader of the Attain Health group, “CF Warriors for Recovery and  Freedom.” Mark is also a director of USACFA. His contact information is  on page 2.

Suzanne  Joyce was first interviewed for our “In The Spotlight” column back in  2017. Quite a few things have changed in her life since we ran that  interview, and I thought our readers would love to catch up with her and  hear about her transplant journey. Those who are in a similar situation  may find her experience heartening. She shares the challenges of living  in two different places, which is never an easy feat. Suzanne keeps  herself busy with offering two iRest yoga nidra sessions weekly on Zoom,  walking her dog Jade, and breathing fully again. Meet our latest star,  once again! Spotlight, please.

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How old are you and where do you now live?

I’m 58 years old, and I split my time between living in Clearwater, Florida, and Haverstraw, New York.

In our last interview you had just broached the subject of lung transplantation with your physicians. What has since changed?

I began  using oxygen 24/7 and, in 2018, I was hospitalized three times over an  eight-month period. My doctor in Tampa stressed to me that I was in the  transplant “window,” so I decided to be listed for transplant in January  2019 and had my transplant one month later.

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How was your transplant experience?

For the  first three months, I felt so disoriented and foggy. I was in the  hospital for 23 days, with 11 of those being spent in the ICU. It was  the most traumatic thing that I’ve endured in my life. I had three  episodes of a pneumothorax (a collapsed lung), which were terrifying  events, but they did resolve. Additionally, I was diagnosed with both  gastroparesis and a bezoar, a solid mass of indigestible material that  most often accumulates in the digestive tract, sometimes causing a  blockage. The bezoar took a long time to dissipate and the gastroparesis  still plagues me to some degree, albeit less. I lost 20 pounds while in  the hospital and my weight was down to 88 pounds when I was discharged.  I never felt more dependent on others, more vulnerable, or more  insecure than during this period of time. That being said, I don’t for  one minute regret having gone through transplant.

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What are the benefits and drawbacks to lung transplant, in your experience?

The  benefits are truly life changing. I no longer constantly hack up mucus  or blood, I no longer have daily nebulizer and Vest treatments, and I’m  no longer chronically exhausted, just to name a few advantages. The  drawbacks for me, currently, are increased anxiety and other side  effects from the transplant medications, as well as concerns about  facing a new kind of uncertainty about my life span and, more  importantly, what am I going to do with this new life?! That’s a good  problem to have.

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Were the downsides resolved? If yes, how?

Over  time, the bezoars eventually disappeared on their own. Medications did  not help with that. With gastroparesis, which is caused by nerve damage,  including damage to the vagus nerve, I had to switch to a low-fiber  diet, could not eat large meals in one sitting, and I felt sick after  eating. I tried all kinds of things to stimulate my vagus nerve—humming,  stomach massage, chewing gum, deep relaxation, cold water, walking, and  more. My symptoms improved, but I can’t say what really helped. I still  do stomach massage to help my GI system to keep moving. For anxiety, I  take Wellbutrin and Lexapro, which I have taken for years. I exercise  intensely and often, and I practice yoga nidra and pranayama (breath  work) to deeply relax.

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How do you feel now, post-transplant?

I feel  fantastic physically! I am thrilled to draw in a full breath of air and,  if I want to very slowly exhale it all the way out, without difficulty  and without coughing, I can. I feel strong, healthy, and vibrant. I’m  very grateful for my donor, my medical teams, and all my caregivers,  both near and far.

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I did  not have clear expectations about what to expect as it seems that, with  CF, each transplant experience is different. I guess I thought I’d just  take each issue as it comes. I would have liked more information on what  to expect during the early part of recovery. And no one told me about  the pockets of cellulite!

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How did you decide to get your transplant where you did? What was the deciding factor (or factors)?

I had  been in Naples, Florida, where there was no CF center, during most  winters, and my strategy was more of “if I get sick, I’ll fly back to  NY” plan. As my disease progressed, I realized this wasn’t such a good  strategy. I considered visiting CF centers in Florida and started with  Tampa General Hospital (TGH). I liked the fact that they were also a  transplant center, should I decide to take that path. My CF clinic at  Beth Israel/Mt. Sinai did not have a transplant center, so I knew I  would have to leave Dr. Walker, my pulmonologist, for a transplant no  matter where I went. I was impressed with Tampa General and decided I  would continue my care there. However, if I were to be hospitalized or  transplanted at Tampa General, it would involve a three-hour drive from  Naples and that was too far away for me and my caregivers at the time.  So, I relocated to Clearwater, Florida, about an hour from TGH.

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I  contacted Peer Connect (run by the CFF) for a mentor who had her  transplant later in life because receiving a transplant at 26 must be  different in some ways than receiving one at 56. Lisa Stackhouse was  (and still is) my mentor—she educated me a lot as far as the various  stages of her transplant. We have become close friends ever since then.

What do you think is important to share about transplant for those considering one?

It’s  important to be informed and prepare yourself for the mental and  emotional part of your recovery. Just like you will need the strength of  your abs and legs to get you off the couch, you will need a go-to  self-regulation tool such as calming breath work, guided meditation,  biofeedback, somatic therapy, yoga nidra, etc. It’s a good idea to  experiment with different practices and learn one or more that work for  you. Have your caregivers join in or at least know about what works for  you so they can remind you to use it when you need it.

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Were you hesitant to get a lung transplant at your age?

I had  just turned 56 when I was transplanted. Pre-transplant I questioned if I  should consider it at all because I felt I had lived a life full of  interesting experiences and accomplishments, and maybe it was time to  just let my body follow its natural path. I’ve been prepared to die  since I was 12 years old, when life expectancy with CF was 16 years. I  also felt so tired of life centering around keeping myself alive that  part of me just wanted to slip away. When I got to TGH, I realized how  many people (mostly those without CF) were transplanted who were older  than me. That took care of any concerns I had heard about age being a  problem. Then I was left with deciding existentially whether to go  forward with transplant. In the end, I decided I had it in me for one  more fight.

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What was your experience with Trikafta?

I tried  Trikafta for two months last fall. Immediately my sinus issues were  completely cleared up and my insulin usage decreased after a few weeks. I  experienced a mix of new GI issues so there was no net gain there. I  had to stop taking it because my existing anxiety increased overall and  skyrocketed with any situational triggers. I also had to change some of  my meds in order to take Trikafta, which also contributed to increased  anxiety. For me, the cons outweighed the pros.

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Are you still able to teach yoga remotely? What else are you teaching remotely?

I  haven’t taught yoga since 2018. Being on oxygen just doesn’t work for a  teacher. I do offer iRest yoga nidra weekly over Zoom to the CF  community. I’ve wanted to offer this guided meditation to the CF  community for a long time. iRest has been such an effective way to help  me in anxious times and in my daily life. Using Zoom, etc., so much last  year, it seemed like an accessible platform for guided meditation and a  good time to offer iRest to support others in experiencing some deep  relaxation. If you are interested in joining my iRest classes, which are  on Fridays at 3 p.m. EDT, or just want more information, please email  me and I’ll get you in the loop: exesq1@gmail.com

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How are you staying in shape physically and mentally?

I  exercise often and I like variation. I enjoy Pilates reformer, Peloton  (bike, HIIT, and strength classes), BEAM classes, yoga, and stand up  paddle boarding. To maintain my mental health, I do take meds and meet  with my NYC therapist every two weeks over the phone, as well as  exercise, practice pranayama, and iRest.

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What does getting the COVID vaccine mean for you?

I got my  second vaccine March 12, 2021. It does not seem at this time that I’ll  be able to travel or see others more because my immunosuppressant drugs  prevent me from mounting as much of an antibody response as others who  are not immunosuppressed.

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What are you doing for fun or to relax?

I like  to read, talk, and laugh on the phone or via Zoom. I love to walk on the  beach or take my dog at the dog park, and of course lots of streaming.

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Are you still in touch with your doctors in NY?

I am and  I miss them all very much. I hope to see them if I go back to New York  in late summer. I’d like to activate my plan, which was six months in  Florida and six months in New York once I’m comfortable with the  COVID-19 situation. I’ll certainly need to see a transplant center in  NYC but I don’t know which one yet.

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What do you miss about New York? What is better in Florida?

What I  miss most about New York is the city and its sense of place. I miss  walking on the streets of NYC and along the water, trying new  restaurants, discovering a small shop I never noticed before, museums,  meeting a friend for coffee in some interesting café, the parks, and so,  so, much more. The weather in Florida is superb. Even if it’s not beach  weather, the sky is usually a beautiful blue and there is so much  greenery everywhere. That helps my mood.

Jeanie  Hanley is 59 and has CF. She is a Director and the past President of  USACFA. Andrea Eisenman is 56 and has CF. She is a Director of USACFA  and is both the Webmaster and Executive Editor of CF Roundtable. Their  contact information is on page 2.

If you would like to be interviewed for “In The Spotlight,” please contact either Andrea or Jeanie.

I  have always gravitated toward alternative therapies to add to my  repertoire of CF care. For years, I often felt like a lab rat in some  bad science experiment. The clinicians in my CF team in Columbus, Ohio,  were amazing, competent, and caring. However, back in the 70s and 80s,  and even the early 90s, cystic fibrosis treatment options were limited.  For 30-plus years I took a lot of the same medications and nebulizer  treatments day in and day out. Years and years of heavy antibiotic doses  and steroid treatments take a toll on the body—inflamed joints, damaged  veins, kidney damage, early tooth decay, and tinnitus to name a few.  Don’t get me wrong, I realize I would not be writing this article right  now if it were not for those doctors and the science of western  medicine. However, the eastern medical approach to treating disease was  captivating as I have discovered additional treatments that could  possibly prolong the next “clean out” and help my body best deal with  medication side effects.

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Eastern  medicine takes a whole-body approach to treating illness. Having  originated out of Asia, it focuses on balancing the entire body.  Alternative therapy treats the body, mind, and spirit, all of which make  up an individual’s life force or qi (a/k/a chi). Both eastern and  western medicine have evolved for thousands of years. The western  medicine approach was developed by the Greeks and incorporates a  scientific, evidence-based diagnosis that focuses on treating the  symptoms. Both philosophies have their merits and, since their paths  often cross, it only seems natural to try to incorporate therapeutic  treatments from each spectrum.

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The  first alternative therapy I tried, and still love to this day, is  massage therapy. It is my go-to when it comes to sore coughing muscles.  There is a seemingly vast array of types of massages. I have found that  deep tissue massages are too much for my body. The result ends up  agitating whatever inflamed muscle group I have, which is painful and  causes my body to tense up rather than relax. Personally, I favor the  Swedish massage, which has the right mixture of gentle pressure to work  out the kinks.

Reiki is  another therapy that has yielded positive results with helping body  fatigue and pulled muscles. I will never forget my one and only  professional Reiki session. I was super stressed from work and  physically exhausted from constant coughing fits throughout the day and  night—basically on the verge of yet another hospitalization. The Reiki  specialist never touched my body. Instead, she held her hands over me as  I lay on a message table and moved them above my body to administer  healing energy. She went from chakra to chakra: there are seven total,  starting from the root at the base of your spine and continuing to the  crown of your head. With my eyes closed I could feel calming waves of  sensation run through my core. I will never forget the coolest and  strangest feeling as she went over my left lung, creating a deep inner  vibration within the individual lobes. It just so happens that my left  lung is in the poorest condition and was often where infections usually  began. Afterward, we sat down and discussed what I had felt versus what  she had felt during the session. She told me that all my chakras were on  fire…awesome! I thought, yeah, baby, I still got my mojo; and then she  explained this was not good and that my entire body was inflamed.

Regardless  of being metaphorically on fire, I walked out of there feeling  energized, refreshed, peaceful, and, this may sound hokey, but I swear I  had a euphoric glow (of course that could be due to the chakra fire  thing). Overall, I would try Reiki again despite insurance not covering  the therapy. Unfortunately, when I got around to booking another  appointment, the facility no longer offered Reiki. I have yet to take  the time to seek out another recommended Reiki master, but all in due  time.

Acupuncture,  another alternative therapy, has always fascinated me. A lot of my  peers could not understand why I would want to subject myself to more  needles; however, needles do not bother me and are just another tool in  life needed to survive, and acupuncture needles are so tiny you can  barely feel them. I finally found a highly recommended acupuncturist and  started treatments this past April. Dr. Peter Shaw is a seasoned  Chinese acupuncture doctor located in Melbourne, Florida. As we sat down  in his peaceful office to go over my paperwork, we began to discuss my  ailments. My main complaints for the day included achy sore joints,  sinusitis, and peri-menopausal symptoms. He asked to feel my pulse and  took my hand, placing it on a small pillow on his desk. Dr. Shaw closed  his eyes while feeling my pulse and turned his head almost as if he were  listening to a secret. Then he asked if I had been having a lot of  stomach pain. Eureka! Yes, I have been having a massive amount of  digestion issues. For the previous four months I was experiencing a lot  of bloating and gas, along with inconsistent bowel  movements—constipation one day and the opposite the next. That is when  it dawned on me how out of touch I had been with my body recently. Dr.  Shaw, who has never treated or met me, knew in just a few minutes what  my symptoms were simply by feeling my pulse! I was blown away.

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Dr. Shaw  began to explain that acupuncture works by unblocking the body’s energy  systems known as meridians. There are 12 principal meridians that  circulate throughout the body. Each meridian carries the energy life  force or qi and relates to an organ or group of organs. He described the  meridian systems by using the ocean’s currents as a metaphor. The  currents continually circulate nutrients, shape land, balance  ecosystems, affect weather patterns, and are the Earth’s main sustenance  to life. Just like the ocean’s currents, the meridian systems in the  body also circulate to keep us balanced and nourished promoting optimum  health function. When the ocean currents are interrupted there are great  consequences that affect the health of our planet’s ecosystems. The  same is true when our energy channels become blocked possibly due to bad  living habits (diet, lack of exercise, and addictions, to name a few),  trauma, or stress, which cause an imbalance resulting in disease, in  turn affecting our spiritual, physical, and/or mental health.

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My first  acupuncture session included nine different needles in my legs, feet,  and right hand that targeted the digestion meridian channels. Dr. Shaw  would come in about every 15 minutes, feel my pulse and either adjust a  previously placed needle or add more. I could not feel any of the  needles initially go in, but there were crazy sensations that reminded  me of an electric wave traveling to different parts of my body as he  adjusted the needles to the accurate point on each meridian. The session  lasted over an hour. I felt fatigued and spacey as I walked out of the  clinic equipped with a four-day supply of Chinese herbs to aid with  digestion, along with instructions to drink large quantities of water  and avoid all the things I love like coffee, spicy foods, and alcohol.

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After  four days of taking the herbs 15 minutes before each meal and avoiding  everything as instructed except coffee (my family’s safety would have  been endangered), I noticed a massive difference. My stomach did not  bloat immediately after eating, gas decreased, and bowel movements  became more regular. On the sixth night however, I experienced sharp  cramping and constipation. Dr. Shaw said my body was trying to move the  built-up toxins out of the large intestine.

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During  the second acupuncture session (one week after the first appointment) I  had 12 needles that targeted digestion flow and achy joints. He placed  one needle in the left forearm, one in the right hand, and more in the  top of my feet to stimulate the whole-body meridians. Halfway through,  Dr. Shaw came in and realized I had a migraine. He placed a needle in my  temple and the migraine instantly disappeared. I was given more Chinese  herbs (stronger dose) to take for four days before each meal for  digestion flow. This time I felt very tired and spacey, but also my  joints were noticeably more irritated. I reasoned that it was probably  sensitivity due to deteriorated tendons from years of quinolone  antibiotics. However, it took longer than I suspected to recover my  energy and my joints felt worse, as opposed to better. I decided to  cancel the next week’s appointment to take a break with the intention of  going back on the fourth week. However, life happened with the end of  my daughter’s school year and now there is little time to spend half a  day doing an acupuncture treatment.

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Overall,  my digestion was noticeably better post-treatment, in coordination with  the Chinese herbs. I am thinking my joints would improve with  acupuncture, but it will most likely take time and quite a few  sessions.  One thing that stands out is when Dr. Shaw said that the idea  is for me not to have to come back. He said that his treatments are not  meant as a lifetime prescription; instead, the purpose is to get my  body back into balance and working as efficiently as possible.  Ironically, eastern medicine now resonates with me more today because of  my improved health due to the recent progress that western medicine has  made in CF treatments (modulators). These western medications are  adding quality and longevity to our lives, in turn making our bodies  more receptive to alternative therapies.

Sonya  Ostensen is 45 years old and has CF. She lives in Melbourne, Florida,  with her husband and daughter. She received her Bachelor’s in Science in  Environmental Sustainable Resource Management from Ohio State  University. She loves to travel with her family and experience new  cultures, and she has a passion for wildlife rehabilitation. Her  favorite activities include gardening, baking, walking the beach, and  climbing trees with her beautiful daughter. Sonya is a CF Roundtable  director. Her contact information is on page 2. You may also message her  through Facebook at Facebook.com/Sonya.Ostensen.

Medical  Waiver: none of the plants and herbs in the article below is intended  to replace recommended treatment from your CF physician or care clinic.  Please consult with your doctor before adding any herbal and therapeutic  remedies to your existing regimen.

As I  reflect on my health journey throughout my life, I am amazed that I will  turn 59 on August 16, 2021. But I’m all the more astonished and  grateful considering that I was not diagnosed with cystic fibrosis (CF)  until the age of 54. This means that I went almost five-and-a-half  decades without access to the appropriate western medicine and  treatments that are often so desperately needed for CF care.

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It took  an extreme and devastating health crisis (that went unnamed for decades)  in my life to help me fully embrace something that my grandmother, the  late Clara Bolden, had instilled in me from an early age—herbs can  contribute to good health and better quality of life and wellbeing. My  first memory of being in a garden or around plants was at the age of 13  when I assisted my grandmother, who ran our family’s own chicken yard  and garden located by the original Little Rock Airport. At that young  age, not only did I assist with my grandmother’s chicken farming and  gardening endeavors, I also became an integral part of ensuring her  garden’s continued growth and success.

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Following  my 1981 graduation from Little Rock’s Hall high school and the  unfortunate death of my beloved grandmother—which led to the abandonment  of her longstanding home, chicken farm, and garden—my health began to  worsen (including having difficulty breathing and severe stomach pains),  but my love and passion for herbs, gardening, and horticulture  continued to blossom all the more. These two extremes in my life would  soon expand to new heights and intersect in ways I couldn’t even begin  to imagine.

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In my  20s, I was determined not to let my grandmother’s land go barren. I  started to plant an array of herbs and plants to which my adopted  mentor, Curtis Johnson, introduced me. I also quickly learned how even  just the smell of certain herbs would calm my anxiety. Needless to say,  it didn’t take long for me to recognize that I had a God-given gift and a  unique green thumb. I felt like I was on the same growing field as the  herbs, plants, and the very land itself. I knew I had so much more to  learn, which I continued to do faithfully over the next two decades.

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In 2010,  I was hospitalized yet again for the typical double pneumonia,  sinusitis, bronchitis, and an array of other medical issues. However,  during this particular stay, I received a phone call that would change  the course of my herbal studies for the better. I received an  opportunity to interview for a program to study for and become an  Arkansas Certified Master Gardener. I gladly interviewed right from my  hospital bed, which became my temporary home and office for over a  month. Following my discharge, I learned that I was accepted into the  program, which further cultivated my longstanding passion for gardening.

I earned  the title of Arkansas Certified Master Gardener in 2010 after  completing all of the required coursework and extensive training. The  following year, I also became an Arkansas Certified Master Naturalist.  Now, it was time for me to step up not only my herbal game but my  health, which continued to experience its share of ups and down with  surgeries, pain, suffering, and unforeseen events. Although I did not  yet have the answers as to the root of my health issues, I did know that  my expertise in plants and herbs would help me in alleviating some of  the symptoms from my recurring and thus far undiagnosed medical issues.  As such, my garden of roughly 150 trees, plants, and herbs spread across  multiple garden beds and became my medicinal haven and edible  landscape:

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Fruit trees: pomegranate trees, peach trees, plum trees, persimmon trees, lemon trees, lime trees, and orange trees;

Countless  plants and herbs: basil, rosemary, sage, thyme, oregano, chives, hardy  hibiscus, hyssop, bloody dock, lavender, mullein, fennel, horehound,  pineapple sage, peppermint, spearmint, pineapple mint, garlic, ginger,  eucalyptus, menthol, echinacea, bee balm, lemon balm, and beauty berry;

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Even  more fruits and vegetables: poke salet, prickly cacti, passion flower,  blueberries, blackberries, muscadine grapes, strawberries, tomatoes,  cucumbers, squash, string beans, lettuce, broccoli, brussels sprouts,  corn, bell peppers, collards, turnip greens, sweet potatoes, okra,  cabbage, jalapeno peppers, onions, leeks, cantaloupe, honeydew melon,  and watermelon;

Numerous  other flowers: sedum, elephant ear, coreopsis, wormwood, vertigo grass,  ligularia, angelonia, begonia, portulaca, butterfly bush, coleus,  salvia, artemisia, gaura, zebra grass, sunflower, marigold, nasturtium,  gunnera, vinca, phlox, roses, Japanese maples, daisies, yarrow, astilbe,  creeping speedwell, ajuga, and celosia, among many others.

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I  further assured the success of my multiple gardens by making my own  uniquely created compost and utilizing rainwater (collected via rain  barrels attached to gutters) in lieu of regular fountain water, all  while maintaining my current status as a Master Gardener and Master  Naturalist. I was pleasantly surprised to be awarded the 2016 Pulaski  County Master Gardner of the Year, in addition to being a finalist for  the 2017 Arkansas Master Gardener of the Year Award.

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Interestingly  enough, 2017 was not only a year for award recognition, it was also,  after 54 years, the year for finally getting the correct  diagnosis—cystic fibrosis. With this new diagnosis, I could finally  receive the much-needed treatment I so urgently needed. The greater news  was that I could continue to cultivate and utilize my deep-rooted  passion for gardening, nature, agriculture, and horticulture coupled  with my natural acumen and inclination for medicinal herbs to supplement  my newly prescribed CF treatments:

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• Anxiety: hops have long been used for stress and insomnia.

• Colds/flu: garlic aids in fighting an array of viruses.

• Headache: feverfew helps with fevers, headaches, and migraines.

• Mucus: elecampane is used for lung disease, including asthma, bronchitis, and whooping cough.

• Nausea: peppermint, such as peppermint tea, not only calms nausea but the nerves as well.

• Pain: turmeric helps to relieve pain by helping to reduce inflammation.

•  Stomach aches: ginger is warming and calming to the digestive tract and  assists with stomach upset, indigestion, and even nausea. It also has  antimicrobial properties that help combat many common stomach bugs.

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Love:  the rose is not only the symbol of cystic fibrosis, but also the symbol  of love. My mother’s name is Rose; everything I initially learned about  love stemmed from her petals. The rose flowering plant has a very  calming smell. It makes you not only feel the love for your journey, but  for the beauty of plants, herbs, and gardening. That’s my story and I’m  sticking to it! s

Terry  Wright is 58 years old and has CF. He is a director for USACFA. He is a  Certified Master Gardener, Master Naturalist, and Expert Agriculturist  and Horticulturist. Terry lives in North Little Rock, AR, with his wife  Michele R. Wright, Ph.D. Together, they are the founders of the National  Organization of African Americans with Cystic Fibrosis (NOAACF). He can  be contacted via his website (https://noaacf.org) or via email at noaacf@gmail.com.

My  life would have ended in my early 30s were it not for western  medicine—lifesaving new drugs like Pulmozyme, TOBI, and, most  importantly, a truly life-altering double lung transplant. But I also  knew complementary care, which I was offered just a few days following  my transplant and was already utilizing prior to my operation, was  something that made me feel better in the process.

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I have  written extensively before on my experience with acupuncture: how it  helped my diabetes, my sinuses, and how it gave me a calmer mind. I have  also used it for effective pain management. However, it is something  that has to be done to me by a practitioner; it is not something that I  can do for myself. Although my acupuncturist did send me home with  needles a few times and told me where to place them—reassuring me it is  more the intent than the accuracy that mattered—I prefer to leave it to  the professionals.

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This  acupuncturist also introduced me to massage therapy—Swedish, Shiatsu,  and reflexology. As a result of the spinal fusion I had when I was 16,  the nerves in my back and parts of my buttocks are very sensitive due to  the rearrangement of muscles and nerves during the surgery. Because  some areas were scarred and nerve-sensitive, having a back massage was  not so pleasurable. Initially, getting therapeutic massages were too  intense but, eventually, I acclimated to the intensity and felt that  moving the stiff muscles and scar tissues did provide relief. I had  better flexibility and less pain afterwards; I just had to be open to  it.

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During  the pandemic, I steered clear of getting a massage or acupuncture for  fear of being in a small enclosed room with another person, even with us  both wearing masks. My transplant doctors and the news scared me so  much, as I knew how vulnerable I was, and still am, of dying from  COVID-19, so I adhered to the guidelines and limited my exposure to  everyone, even if it meant missing out on some healing from a  practitioner.

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While at  the acupuncturist’s office, I was treated first with Reiki before my  acupuncture treatments. It relaxed me and took my mind off my worries,  which were always swirling around me. I was a bit obsessive about my own  health, my mother’s health, my good friends with CF, etc. My Reiki  master mentioned that I could learn to treat myself, so I looked up  classes and workshops and enrolled. I am not into angels and woo-woo  stuff helping me, so I happened to find a down-to-earth practitioner and  learned the first and second degree (level) of the three total degrees  of Reiki within six months of each other. I was told that, to truly  benefit from Reiki, I must practice every day, so I tried to make it a  priority. It worked nicely with my need to rest each day in the early  afternoon. It worked so well that I drifted off to sleep for about 60-90  minutes after or during my practice most days. It was like hitting a  restart button. I woke up feeling refreshed and ready to tackle things I  was putting off. Reiki even reduced my migraines, so that I was not  always taking medication for them. I loved it so much and felt it  empowered me to help myself, so I became a Reiki master in 2016.

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I was  also able to practice Reiki on friends and family. Many loved it,  especially my mom who had had an intestinal blockage. After she had a  stoma placed and then had her intestines reconnected, she must have had a  lot of scarring. This helped her when she was in frequent abdominal  pain. To this day, it still helps with my back pain. The effects of  therapy don’t last forever but they do tamp down the pain so I can  function more effectively. Sometimes, when I have my hands on a  placement near my eyes, I can hear the clicking of my sinuses opening  and at times I feel them draining.

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During  the pandemic, knowing Reiki and practicing it every day has been a huge  boon to my wellbeing. It has alleviated stress and even anxiety during  the height of the COVID-19 pandemic.

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Currently,  I am battling extreme back pain due to my spinal fusion. My lower spine  is drifting away from the fusion just above my sacrum. My doctors noted  the appearance of arthritis and degeneration after a recent X-ray.  These are causing nerve pain, which affects my everyday life and much of  what I enjoy doing: walking, playing tennis, riding a bike, and  swimming. I like to stay active for my lung clearance. Working out also  puts my mind at ease. I guess the post-workout endorphins are a thing!

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I have  been seeing a wonderful physical therapist to help with my back pain. I  have seen several different therapists over the course of the last 12  years as my fusion/spine started separating. So far, this new place is  the best—they treat my individual needs, they don’t go by a book, and  they really tailor my exercise homework specifically to me. That said,  this PT is young and always curious. He has been taking classes on  weekends on vascular and visceral techniques. It is starting to help me  without hurting me. Initially, my muscles in my quadriceps were tight  and pulling the front of my body down so he had to use acupuncture  needles and electric stimulation to overcome that. Honestly, this was  not pleasant but helped me stand up straighter instead of walking with  my head down and butt out (like I was an octogenarian). Loosening these  muscles also released my knees, which were also a problem. I had a  meniscus tear that had to be surgically fixed two years ago by  laparoscopic repair. Yes, I think all of the years of prednisone use has  worn down my joints, muscles, and tendons. But this PT is helping me  get back to the things I love and move without so much pain.

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I am now  learning the benefits of visceral work. So, while I may not be able to  do this to myself any time soon, I am open to receiving this treatment  from the PT, along with strength-building exercises to do at home (just  another thing to add to my already full dance card during the day).  Solving my physical problems reduces my stress and anxiety, too. I do  start to get depressed by all of my limitations.

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Don’t  get me wrong, I also use a foam roller and lacrosse balls to get into my  sore muscles at home. I learned to do this at the current physical  therapy place. I roll out my quads and IT bands every day and do a  “couch” stretch. Plus, I execute other passive movements when I do not  have enough time to do a strength-training circuit. Stretching is very  helpful, especially since I do many of my daily treatments while seated.

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The  orthopedic surgeon I saw regarding my back noted that I am not a good  candidate for another spine surgery, so other options need to be  exhausted first. For the last few months, I have been seeing a pain  management doctor. He suggested looking into nerve ablation therapy  because the steroid injections into my spine didn’t work as intended.  For ablations, he has to do two trials called a Medial Branch Block,  where he injects lidocaine into certain branches in my spine. The first  trial reduced my discomfort by 80-90%. However, for the first few days  after the injection, the nerve pathways in my lower back were on fire.  It was horrible. I was sure this procedure didn’t work for me. When his  nurse called the following day, she said they only want to know about  the first day—how much pain relief I had and how long it lasted. As it  turns out, the procedure did work! My second trial was less painful, but  I still had some soreness the next day. It seems I am done with the  trials and ready to schedule my ablation with the hopes of eradicating  my back pain.

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To help  ease the nerve pain from the first trial, my PT worked his magic using a  visceral treatment he just learned. I have no idea how he does that,  but I walked out of there virtually pain free. Somehow, it also cleared  up my gut. I do not need to know how or why, I just appreciated that I  was no longer in such intense pain.

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While  the nerve ablation changes nothing structurally, it can reduce pain for  about six to 18 months. During that reprieve, I will have to work hard  on building up muscles to keep supporting my back and tighten my core.  The nerves do regenerate, but, for the last year I have not had a major  reduction in pain that lasted more than a few days or so. I’m hoping the  ablation changes that. The rest of my body is a bit of a mess, so I  hope to continue with my PT to resolve each area of disaster one at a  time using visceral work.

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On my  quest to feel good and look for new possibilities to ease my pain and  gain strength, I try to remain hopeful, stay active, and stay open to  trying new things. It has gotten me this far.

Andrea  is 56 and has CF. She lives in New York, NY, with her husband Steve and  dogs, Willie and Roscoe. Andrea is the Executive Editor for USACFA. She  enjoys cooking new recipes, playing pickle ball, biking, tennis when  possible, and staying active as her health allows. Her contact  information is on page 2.

The  U.S. Adult CF Association (USACFA) is pleased to announce the  recipients of the Scholarship for the Arts, offered in memory of Helen  M. Eisenman. We offer this arts scholarship in Helen’s memory—she was a  Holocaust survivor with a passion for the arts. A talented photographer,  she eventually earned a reputation as the “Doyenne of Subtitles” within  the film industry for her skills in subtitling films in multiple  languages. She made many sacrifices over the years so that her daughter,  Andrea, who has cystic fibrosis, could live as long as possible. Helen  always encouraged Andrea to be creative, read books, appreciate museums,  and listen to music.

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In our  evaluation, we look for students who demonstrate tremendous artistic  creativity, originality and achievement, community involvement, and a  powerful understanding of how their CF—matched with their creative  endeavors—places them in a unique situation to impact the world through  their art. The scholarship is open to anyone seeking a degree, from an  associate to a doctoral degree, in the creative arts: fine arts,  computer graphics, design, music, choral, photography, filmmaking,  creative writing, and poetry, to name a few.

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We are  pleased to announce Rowan O’Bryan and Faith Ettlich as the recipients of  this year’s arts scholarships. They will each be awarded $5,000.  Congratulations to both!

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Rowan  O’Bryan is an accomplished young woman who prominently features her  disability, and what that looks like, through the medium of digital and  film photography. Rowan is currently a student at UCLA, where she is  pursuing a degree in fine arts as well as a double minor in both  American Sign Language and disabilities studies. Rowan volunteers with  various CF organizations. Through her art, she aims to advocate,  fundraise, support, and inspire people with intersecting disabilities  who face additional barriers and isolation.

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Faith  Ettlich is a homeschooled high school senior attending Gordon College in  Massachusetts this fall, pursuing a degree in piano performance. In  addition to her artistic pursuits, she’s active in musical theatre, Tae  Kwon Do, swim team, church youth groups, and the American Red Cross.  Faith has extensive experience volunteering throughout her local  community, from various CF organizations to art organizations and other  governmental entities. Faith hopes to one day accompany ballet  companies, musicals, classical choirs, or other smaller music venues.

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Scholarships  are offered in the spring semester each year. More information,  including the application and relevant deadlines, can be found on our  website. For questions about future scholarships or anything related to  the application process, please contact us at scholarships@usacfa.org.

Sara  Kominsky, 49, with CF and two bilateral lung transplants, has  contributed another lovely piece of art to the CF literature genre. Her  book is written as a novel and targets both tweens and teens. In a very  short and easytoread book, Sara captures every aspect imaginable of  living with CF.

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Kat, the  protagonist, is a 12-year-old girl with CF who is also a competitive  gymnast. She loves her sport and is exceptionally good at it. Yet, she  also endures what all of us with CF endure: a long and detailed regimen  of caring for her respiratory, nutritional, hydration, and sleep needs.  She is unusually driven and somewhat unrealistically independent in her  healthcare management. She is hyper-educated about her disease thanks to  Google and has a great medical team. She has supportive, yet  stressed-out, parents and a younger brother with advanced CF. She  distracts herself with a focus and passion for gymnastics, which helps  her feel good about herself because she can identify as not just a CF  patient.

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Sara  captures the reality of a modern-day family coping with CF. She  describes siblings having to be six feet apart and wearing masks. She  captures the parents’ dynamic of managing two children with CF. The book  does not shy away from tackling heavier topics, like the fear of  mortality, that kids with CF endure. Kat grieves a recent diagnosis of  CFRD and lives with anxiety about getting sicker or losing her brother.  Despite being a high achiever, she also lives with the possibility of  losing her ability to be a gymnast.

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I  appreciated the creative affirmations that Kat tells herself to keep  herself motivated and driven. She refers to a favorite poem that helps  her see herself as carrying the poise of a puma, the might of a mountain  lion, the confidence of a cougar, the perseverance of a panther, and  the courage of a catamount. The use of a metaphor that aligns Kat’s  determination to persevere—whether on the beam and bars and even behind  the nebulizer mask—to these elegant and valiant felines, is beautifully  realized.

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Another  impressive aspect of this novel is that Kat is open with her friends and  her fellow gymnasts about having CF. There is little shame or  discomfort about others learning about Kat’s special needs. I hope this  accurately reflects what many 12-year-olds are dealing with these days.

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This is  an excellent book for educating young readers about cystic fibrosis.  There is a comprehensive glossary at the back of the book, and she  sprinkles educational facts about the progress of CF research and care  before each chapter. She includes characters who are facing other issues  with their CF that she has not yet had to deal with—hemoptysis and a  friend with end-stage CF who needs a lung transplant. For young kids or  teens who do not have CF, this book is a very informative resource. As a  CF adult incredibly familiar with the CF regimen, however, I honestly  found it challenging to review the concentrated medical detail in this  book which ultimately distracts from the storyline and plot.

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The book  covers a span of a few weeks until Kat has her State Championship  gymnastics meet. A lot happens in just that short amount of time, yet  the gymnastics meet is the climax of the story—the reward for all the  effort she has exerted to survive. It is a feel-good ending. Like any CF  story, this book will help school-aged kids, tweens, and teens with CF  feel less alone if they know there is a character like them in the  story.

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This book is available on SaraKominsky.com or Amazon.com.

Isa  Stenzel Byrnes is 49 years old and has CF. Her column, Spirit Medicine,  is featured in every issue of USACFA.She lives in Redwood City,  California. She is 17 years post-lung transplant.

Lung Disease Evident In CF Patients Despite ‘Normal’ Lung Function

Signs of  lung disease were evident in most cystic fibrosis (CF) patients with  normal lung function in a small study, and related with a higher number  of pulmonary exacerbations and longer antibiotic use. These findings,  based on a mix of lung health measures, indicate that such disease can  precede changes in pulmonary function, and highlight the importance of  early screening to prevent CF progression. A normal FEV1 may wrongly  indicate being free of disease and lead to fewer treatments being  offered and lower treatment adherence. Researchers analyzed the presence  of lung disease in 89 CF patients, ages 4 to 49, with normal FEV1. Lung  disease was assessed by CT scans, the number of exacerbations and  chronic infections with Pseudomonas aeruginosa in the year prior to the  study’s start, and via the lung clearance index (LCI), which is  considered to reflect abnormalities in the small airways and, when such  changes are seen, is associated with early structural lung disease.  Almost all the patients with normal pulmonary function demonstrated the  presence of lung disease: 86% had elevated lung clearance index (LCI),  92% had structural abnormalities measured by CT Brody score, 21% had  chronic Pseudomonas aeruginosa (PA) infections, and 19% had at least one  major PEx [pulmonary exacerbation] requiring IV antibiotic treatment  during the year previous to the assessment.

Based on  these results, the researchers found that FEV1 in the normal range is  not sensitive enough to identify early lung disease and therefore, it is  important to follow patients with normal or slightly decreased FEV1  using other clinical parameters…to early identify and treat all changes  with the aim to prevent or reverse disease progression.

https://tinyurl.com/yhwardav

P. Aeruginosa, Other Bacteria Appear To Support Each Other In CF Lungs

Two  bacterial species known to be frequent sources of lung infection in  people with cystic fibrosis— Pseudomonas aeruginosa and Staphylococcus  aureus—can feed each other with a nutrient called purine that both need  to thrive. One way these bacteria can interact is via nutrient exchange.  Some bacteria are unable to make a particular metabolite, or nutrient  that provides nourishment essential for their growth, and they need to  obtain it from the surrounding environment. The researchers found that  P. aeruginosa lacking the ability to make purine — a molecule used to  build other, more complex molecules that are essential for life —  thrived when placed with purine-producing S. aureus, indicating that P.  aeruginosa used the purine provided by S. aureus to grow. Previous  studies have shown that chronic lung infections in CF are associated  with biofilms, the communities of bacteria that attach tightly to each  other and to surfaces, and that these biofilms are rich in exogenous DNA  (DNA originating outside the organism). Such exogenous DNA may be  sourced from dead microbial cells or from host innate immune components.  Researchers wondered whether the growth of purine-deficient P.  aeruginosa could also be rescued by exogenous DNA that is released by S.  aureus. They found that S. aureus indeed releases exogenous DNA through  cell lysis (cell breakdown), but the amount was not enough to  completely rescue the growth of purine-deficient P. aeruginosa. Next,  the researchers performed a similar set of experiments, but this time  the bacteria swapped roles: S. aureus lacking the ability to make purine  was placed with purine-producing P. aeruginosa. Again, the  purine-deficient bacteria used the purine provided by the other  bacterial species to grow. Thus, purine exchange between these bacteria  could occur in either direction. This mutually beneficial cohabitation  could be a reason some CF lung infections are so difficult to treat.  Such interactions can have severe impacts during infection as  polymicrobial synergy has been shown to increase antibiotic resistance  and disease severity in certain cases.

https://tinyurl.com/yfusecop

Molecular Analysis Identifies Key Differences In Lungs Of Cystic Fibrosis Patients

A team  of researchers has developed a first-of-its-kind molecular catalog of  cells in healthy lungs and the lungs of people with cystic fibrosis. The  catalog reveals new subtypes of cells and illustrates how the disease  changes the cellular makeup of the airways. The findings could help  scientists in their search for specific cell types that represent prime  targets for genetic and cell therapies for cystic fibrosis. This  research provides critical insight into how the disease alters the  cellular makeup of the airways, which will enable scientists to better  target the next generation of transformative therapies for all people  with cystic fibrosis. Because these cells can self-renew and produce a  continuous supply of specialized cells that maintain, repair and  regenerate the airways, therapies aimed at correcting CFTR mutations in  stem cells hold the best hope for a one-time, universal treatment for  the disease. Using a novel computer-based bioinformatics approach to  compare the gene expressions patterns of the various cells, the team was  able to create a catalog of the cell types and subtypes present in  healthy airways and those affected by cystic fibrosis, including some  previously unknown subtypes that illuminate how the disease alters the  cellular landscape of the airways. The airways of people with cystic  fibrosis showed differences in the types and proportions of basal cells,  a cell category that includes stem cells responsible for repairing and  regenerating upper airway tissue, compared with airways of people  without this disease. Specifically, the researchers discovered that  among the basal cell populations, there was a relative overabundance of  cells that appear to be transitioning from basal stem cells into  specialized ciliated cells, which use their finger-like projections to  clear mucus out of the lungs. The increase in transitioning cells  provides further evidence suggesting that expression of the mutated CFTR  gene disrupts normal function of the airways, leading to changes in the  way that basal stem cells produce specialized cells.

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Spirometry Measurements Obtained At Home vs Clinic Evaluated

Although  the cause is unclear, spirometry measurements obtained at home had poor  agreement with results obtained in the clinic. Researchers obtained  home and clinic spirometry data from the CAPTAIN study  (ClinicalTrials.gov Identifier: NCT02924688), a phase 3A, double-blind  parallel group study in adults with uncontrolled asthma despite  pharmacologic therapy. Patients had spirometry measurements taken at  least once in the clinic using a MasterScope device, and recorded  measurements at home each day using a peak flow meter (AM3 device).  Among the patients who had both clinic and home spirometry measurements  available, the agreement between clinic and home trough forced  expiratory volume in 1 second (FEV1) measurements was poor. According to  the researchers, possible explanations for the lack of agreement  included the different devices and methodologies as well as a lack of  supervision and coaching for home measurements. The comparison of home  and clinic spirometry in the CAPTAIN study suggests that home spirometry  performed with the AM3 device cannot be used as an alternative to  clinic spirometry, and that caution should be exercised when using home  spirometry data in research or clinical care.

https://tinyurl.com/yu7ytemw

hMSCs Show Potential In Treating Chronic Lung Infections

Human  mesenchymal stem cells (hMSCs) effectively treated infections caused by  non-tuberculous mycobacteria (NTM) in cell-based tests and a mouse model  of cystic fibrosis. Although this strategy may help treat those  infections in people with CF and other lung conditions, the findings  show the treatment’s effectiveness depends on the donor source of hMSCs.  Mycobacterium avium and Mycobacterium intracellulare are two types of  NTM. NTM infections can be very difficult to resolve. Treatment  typically requires taking multiple antibiotics, often for years.  Patients who suffer from chronic NTM infection not only deal with the  consequences of the disease but also the toxicity, as well as  inefficiency and side effects of the antibiotics used to treat it. To  find better treatments for NTM infection, researchers focused on hMSCs,  which can become a variety of cell types. Studies have shown that hMSCs  have anti-microbial, anti-inflammatory, and anti-scarring properties  resulting in improved antibiotic effectiveness, thereby decreasing the  dose required to eliminate bacteria. They are unique in their capacity  to respond to infection by secreting multiple bioactive factors,  contributing to the host environment. That gives hMSCs a clinical  advantage over traditional pharmaceuticals. hMSCs significantly  decreased the growth of MAC and trended toward a significant reduction  in M. intracellulare. hMSC supernatants—the liquid that contains  products secreted by these cells—also decreased growth in all  conditions, but were significantly effective only in MAC.

Supernatants  from 12 different hMSC donors were then cultured with MAC, M.  intracellulare, and M. avium and tested over 24, 48, and 72 hours.  Results showed the ability to decrease MAC growth varied based on hMSC  preparation, with some supernatants killing most MAC, while others  showed a lower capacity. This variable effectiveness among different  donor hMSC supernatants was also shown in M. intracellulare and M. avium  separately. Thus, it is essential to identify the appropriate hMSC  donor and subsequent preparation for disease-specific applications.  hMSCs then were cultured with MAC, M. avium, or M. intracellulare with  or without the addition of the antibiotic gentamicin. Although the  antibiotic-enhancing capacity of hMSCs was higher against MAC and M.  avium more than against M. intracellulare, the results varied across  different donor preparations. In some, the potency was not sustainable.  Next, to test hMSCs in vivo, the most effective hMSC donor cells were  used to treat normal, and CF model mice infected 24 hours earlier with  either M. intracellulare or M. avium. Treatment of mice modeling CF with  hMSCs resulted in significantly decreased growth of both M.  intracellulare and M. avium in the lungs compared with CF mice not  treated with hMSCs at day seven. hMSC treatment also attenuated weight  loss and improved a score of overall health in infected CF mice.  Focusing on hMSC response to NTMs and efficiency of in vitro [in the  lab] and in vivo anti-NTM activity provides direction for identifying  the optimal hMSC signature for anti-NTM therapy.

https://tinyurl.com/yzpawxnw

Patients’ Breath May Be Used To Detect P. Aeruginosa Infection

Lower  levels of certain volatile molecules in the breath of children and  adults with cystic fibrosis can distinguish with good accuracy between  those with and without Pseudomonas aeruginosa lung infection. A  reduction in the levels of a single molecule, called ethyl acetate, was a  good predictor of P. aeruginosa infection in pediatric patients. In  adults, a combination of five molecules was needed to achieve good  predictability. These findings support future studies to further  validate ethyl acetate as a potential non-invasive biomarker of P.  aeruginosa infection in children with CF, as well as larger studies in  adults to better assess the diagnostic potential of these molecules.  Previous studies have shown that P. aeruginosa infection is associated  with the production of several volatile molecules, which can be measured  in the breath of CF patients, offering a potential non-invasive  alternative for the detection of this serious infection. However, none  of these molecules has been validated as a P. aeruginosa diagnostic  biomarker through targeted analysis of breath of CF patients. Now,  researchers evaluated the use of volatile molecules to identify CF  patients with P. aeruginosa lung infection and found that a reduction in  ethyl acetate levels alone was found to be the strongest predictor of  P. aeruginosa infection in pediatric patients. This link is consistent  with previous studies and the team hypothesized that such reduction may  be due to the breakdown of ethyl acetate by P. aeruginosa. No single  volatile molecule was significantly associated with P. aeruginosa  infection in adults, and only a combined reduction of five molecules —  ethyl acetate, limonene, 2-pentanone 3-methyl, toluene, and 2-butanone —  provided good predictability. This combination model was able to  distinguish between CF adult patients with and without P. aeruginosa  lung infection with 70% sensitivity and 100% specificity.

https://tinyurl.com/yh2p94q9

New Treatment For Lung Infections In Cystic Fibrosis Up To 100,000-Fold More Effective

A novel  biometric nanostructured material used to treat lung infections in cases  of severe cystic fibrosis increased its efficacy by up to 100,000-fold  over the current treatment. Investigators from the University of South  Australia described how they used an advanced, biologically-relevant  co-culture model of human cystic fibrosis bronchial epithelial cells  that were infected with Pseudomonas aeruginosa (P. aeruginosa). The  treatment used to treat P. aeruginosa is the antibiotic Tobramycin,  however its efficacy is severely limited due to permeability problems.  The novel nanotech approach was designed to enhance efficacy in  treatment for P. aeruginosa due to increased permeability. In testing  with the bronchial epithelial cells, the nanotech eradicated P.  aeruginosa after 2 doses which was a 100-fold improvement over the  Tobramycin. When Tobramycin is paired with an antibiotic that permeates  biofilms such as ciprofloxacin, the nanotech still performed. The  nanotech enhanced penetration of Tobramycin across the biofilm barrier,  but not through healthy lung cells, which allows for increased  concentration of the antibiotic at the site of infection. Therefore,  this strategy would enable the administration of lower doses and a  reduced toxicity. The study authors also detailed their comparison of  liposomes and the nanotech technology. In this case, the nanotech was  loaded with Ps1G, the glycoside hydrolase, and Tobramycin to test if the  combination would protect Ps1G from proteolysis, trigger the enzyme’s  release in the presence of bacteria, and/or improve the total  antimicrobial effect. The study found that the nanotech approach was  deemed to be an effective strategy that better protected against  proteolysis, produced a sustained release of Ps1G, and improved the  antimicrobial effect by 10-100-fold. Additionally, the study authors  observed an increased survival of in vitro and in vivo Caenorhabditis  elegans infected with P. aeruginosa. When comparing digestible to  non-digestible nanotech, the study authors determined that the  digestible type triggered the enzyme’s release in the presence of  bacteria. However, there were negligible differences in the versions’  ability to protect Ps1G from proteolysis and potentiate the  antimicrobial activity when combined with Tobramycin.

https://tinyurl.com/2576debx

Computer-designed Enzyme May Help To Kill P. aeruginosa In Biofilms

An  enzyme produced using computer design, in combination with the  antibiotic tobramycin, efficiently kills Pseudomonas aeruginosa. It  works to neutralize a metabolite called pyocyanin, required by P.  aeruginosa to attach to surfaces and form biofilms. Pyocyanin is a  molecule that promotes cell-to-cell interactions to enhance the  bacteria’s viability inside the biofilm and to better protect them from  antibiotics. As they are in close contact with each other, these  bacteria also can exchange genes that contribute to antibiotic  resistance. A research team had previously discovered an enzyme called  PodA that could degrade pyocyanin and prevent the formation of biofilms.  However, this enzyme could only be produced in small amounts and it  lacked stability. The team set out to increase the stability and  production of PodA, to test it under certain physiological conditions,  and to find out if it could improve the efficacy of tobramycin.  Results  showed that bacteria treated with tobramycin and PodA10 had higher  propidium iodide staining than did those with either PodA10 or  tobramycin alone, suggesting a greater bacterial killing activity.  Pyocyanin, the protective molecule, is produced by P. aeruginosa when  there is a lack of oxygen, especially in the inner layers of biofilms.  Its presence is toxic on the outer layers of biofilms where oxygen is  present. The team found that adding PodA10 alone can remove pyocyanin  from places where there is oxygen, resulting in higher bacterial  metabolic activity.

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BX004, Phage Therapy for CF Bacterial Infections, Advancing in Trial

BiomX  has developed a BOLT (BacteriOphage Lead to Treatment) platform that  uses phages—viruses, or a virus cocktail, that can infect and kill  bacterial cells—instead of antibiotics as bacteria-targeting therapies.  BOLT was designed to rapidly develop phages (within six to eight weeks)  targeting specific bacteria in a manner tailored to a given patient. The  process begins with isolating a person’s bacterial strain, followed by  optimizing and producing the therapy for testing in clinical trials.  According to BiomX, studies conducted in the lab showed that BX004 is  active against antibiotic-resistant strains of P. aeruginosa and can  penetrate biofilm. Phage are natural predators of bacteria, and specific  to particular bacterial species or strains, targeting and killing them  without disrupting other neighboring, potentially beneficial, bacteria.  BiomX reported in a presentation that its Phase 2 proof-of-concept trial  was testing BX004, as a nebulized therapy, against a placebo in up to  40 CF patients with chronic P. aeruginosa infections. Treatment would be  given for seven to 10 days, with the efficacy of this phage combination  evaluated through changes in bacterial counts, and measures of lung  function and quality of life.

https://tinyurl.com/ygcaf2lw 

Laura is 72 and has CF. She is a former director and President of USACFA. She and her husband, Lew, live in Northville, MI.