Summer/Autumn 2026
CF and Sleep | CF and Medicaid
Table of Contents
Cover Story, Focus Topic
Shame on the Night: Struggling for Sleep and Self-Esteem
Cover Story, Focus Topic
Struggling to Sleep
Cover Story, Focus Topic
The Effects of the Budget Reconciliation Act of 2025 on Medicaid, Medicare, and the Affordable Care Act
Cover Story, Focus Topic
Trust Me: Fill Out The Forms ASAP
Cover Story, Focus Topic
Medicaid Keeps Me Alive
Column
The Rarity In Us
Column
Running... But Only In Emergencies
Voices From The Roundtable
Embracing the Phoenix
Column
In the Spotlight with Roseanne Greco (Part II)
Shame on the Night: Struggling for Sleep and Self-Esteem
Xan Nowakowski, Ph.D., M.P.H.
My spouse left a note on the whiteboard on my refrigerator: You are great no matter if/when/how you sleep. It’s not the first time they’ve left me a similar message—and likely won’t be the last. I snapped a picture of it on my phone so I could hold it close to my heart, and keep it as a reminder for when the going gets especially tough.
CF can certainly make that happen all on its own. I’ve lost count of how many times my fellow adult community members have shared on social media groups about constantly getting their sleep ruined, or how many times I’ve seen similar insights appear in research data. Sleeping in a late capitalist society that works many people into the ground both figuratively and literally does not come easily even without a relentless progressive disease, of course. But CF certainly magnifies those challenges powerfully.
Between dropping blood oxygen levels, small bowel obstructions, bouts of diarrhea from malabsorption, micronutrient deficiencies, diabetes, heart problems, dental damage, hemoptysis, mucus plugs, arthritis, thyroid dysfunction, kidney issues, liver stress, and a variety of other issues, getting our sleep delayed and interrupted often becomes commonplace. We adapt to poor quality sleep as we adapt to so many other losses for our bodies and lives—and the trauma all of that causes.
Medical trauma is ubiquitous in the adult CF community. Sadly, so are other kinds of trauma. Research on chronic disease and disability tells a consistent and harrowing story: Sick and disabled people often experience violence and abuse disproportionately compared to our peers. Many of us have become living examples of those patterns, and of how they intersect with other forms of oppression.
Getting a couple of degrees in Sociology hasn’t taken away any of that trauma for me. However, it has helped me understand the structural origins of harms I have experienced as an individual living and aging with CF. As I’ve come to learn with devastating permanence these past couple years, the trauma and the disease are often inseparable in memory. Lifting the collective weight of both enough to quiet the mind and rest the body can feel downright impossible.
Right now, I feel like Sisyphus pushing a boulder up a steep hill for all eternity. I can move the giant rock and keep it from crushing me completely; yet escaping its path feels impossible, especially on days like today. I found the note on the fridge early this afternoon after finally managing to remain fully asleep for about three hours. These days, that qualifies as a bad night for me. Around this time last year, I would have seen it differently.
The spring of 2025 began with a panic attack so severe that I still have few memories of the event, but continue to feel the damage it did to my brain and my peace alike. I’ve spent the ensuing year clawing my way out of one of the darkest places I’ve ever been. That journey has been both catalyzed and complicated by medical emergencies, suicide attempts, and various other crisis situations for loved ones. I am not where I want to be, and will never be who I was before last February. I’m also a long way from where I began.
Back then, I felt lucky if I could sleep at all without dosing myself with Benadryl. Otherwise I would lie awake for hours on end with panic steadily rising. I’d remind myself to unclench my teeth Of course, routine use of antihistamine drugs that cross the blood-brain barrier and cause drowsiness can have a lot of side effects. Most of those came calling in the weeks that followed. My vision would remain blurry for long periods of time after waking; my head felt as if someone had filled it with cotton.
Although all of this was still preferable to the devastating consequences of not sleeping at all, I knew I could not sustain it over the long term. Given I’ve always relied on my mind staying sharp even as my body faltered, the idea of possibly increasing my risk for memory disorders and a variety of other cognitive issues I spent the next three months trying to get to a point where I could use melatonin to induce sleep instead.
I again feel fortunate for even managing to get that far. I spent another few months relying on melatonin, finding sleep more restfully and waking with less disorientation but still experiencing other bizarre side effects. Recent research has demonstrated potential drawbacks of nightly melatonin use over many years, especially for cardiac health. Avoiding those kinds of issues definitely feels preferable given I already live with some heart complications from my CF. In the short term, I vastly prefer to avoid the vivid and disturbing dreams that melatonin supplements can exacerbate.
Those side effects felt especially cruel given I stopped sleeping precisely because of nightmares so terrible I felt afraid to close my eyes. It often takes a lot to scare adults with CF. Most of us have numerous horror stories about things we’ve survived that still come back to haunt us in the dark hours. Sometimes I dream about all of my remaining natural dentition crumbling rapidly in my mouth, or all of my restorations breaking apart. Or about my intestines becoming all but fossilized from obstruction and scarring, backing up until foul black sewage pours from my mouth. I dream of these things because similar ones have happened in waking life.
I also consider those the funnier horror stories. The more frightening ones usually involve other people, and how my disease became a funnel for pouring their own trauma directly into me. I dream of things I wouldn’t write in a magazine article. Things I often do not speak aloud. Living in a time of heightened fascism, wherein the dismissal and neglect of sick and disabled people’s human rights has given way to unsubtle and even gleeful attempts to extinguish our lives, certainly does not help. But I would be running from demons in my sleep one way or another.
My spouse likes to say that you never stop running until long after the demons stop chasing you. I consider this evergreen wisdom, and have drawn on it extensively in helping my clinical professions students prepare to help their patients manage post-traumatic stress. Every student provider I teach will likely care for thousands of traumatized people over the course of their careers. Each of us copes differently, and navigates different challenges along the way.
I’ve been thinking a lot of late about how readily we accept trauma in the adult CF community. Many of us have shared in private moments about struggling to break patterns of internalized shame. The idea that we somehow “deserve” the bad things that have happened to us in living with an unforgiving disease appears with chilling frequency. We struggle, often silently, with rejecting societal messages of being diminished by our illness.
As our collective life expectancy increases, we often cling to things like paid employment, volunteer work, raising children, fostering animals, family caregiving, home maintenance, craft projects, and athletic pursuits as lifelines for our own self-worth. We’ve swallowed the idea of not wanting to be “takers” in a society that gladly takes from us with little consideration of what it costs for us to give. Is it any wonder we often struggle with going to bed even outside of times where our physical issues and psychological traumas loom largest?
Staying awake doing what we love, and giving back in the ways that mean the most to us, often lowers the volume on the noise in our minds far more than if we lay awake chasing sleep that will not come. Sometimes it also gives us a few precious hours free of demands where we can focus fully on ourselves and our own care needs. It gives us a taste of having time to tend ourselves while still fulfilling the responsibilities we take on, and perhaps draw whatever breath we can in those quiet moments.
So what keeps me here now, mired in sleep difficulties and related feelings of failure while getting a much higher and more consistent quantity of rest overall? To borrow a frequent turn of phrase from the survey research I often do in my work: All of the above.
I did stop taking melatonin nightly about three months ago, with a little help from medical research literature searches about improvements I could make to my readiness for restful sleep. I introduced an easy-absorbing magnesium glycinate supplement to replace the magnesium oxide pills I had previously taken for nutritional and bowel health. I also started taking an easy-absorbing iron supplement that allows me to keep my ferritin levels much more steady without GI complications.
After a couple of rough nights, I started falling asleep much more easily and finding my sleep much more restful. I soon found myself getting full nights of sleep much more regularly, increasing my nightly average despite still having rough days and sleep maintenance issues. When I do sleep for somewhere between seven and eight hours, I generally feel rested. I can function comfortably on six hours, a benchmark I now manage to meet more often than not.
Yet I still feel completely at odds with myself. Disappointed and ashamed that I cannot “fix” my sleep problems entirely. I don’t even know more than a couple of neurodivergent people without CF who would consider their sleep patterns anything close to ideal. But trauma and the constant quest to keep every responsibility I juggle in the air without dropping a single one can make even relative successes feel like abject failures. On days like today—when I went to bed in plenty of time to get a full night of sleep and wound up with twilight slumber plagued with twisted nightmares—the weight of it all feels crushing.
I still fear going to sleep sometimes. I also fear liking sleep too much and never waking up again. When I’ve operated on four or five hours of sleep nightly for weeks on end, I’ve lived in altered states. Powered through things because I had no choice. Learning to adjust my workflow and prioritize the rest both my body and mind badly need—whether or not it actually comes—has come with costs of its own. Admitting you are exhausted is one thing; we wear it like a badge of honor oftentimes. Letting our exhaustion shape our choices is entirely another. Every time I do it, I feel renewed physically and terrified mentally. Afraid of losing everything I’ve worked for by slacking and not doing enough.
What a seductive myth. The world, like CF, will take absolutely everything if we let it. Taking care of ourselves allows us to hold on to the things we treasure most: homes, families, memories, experiences, connections. Adults with CF in the United States are protected by the Americans with Disabilities Act in getting reasonable accommodations for our condition. We have not only the right, but also the legal standing, to engage with society without destroying ourselves in the process.
The past couple years have taught me the unexpected and powerful lesson that when I model the conscious choice to rest when I am ill, whether from sleep deprivation or CF complications or panic attacks or any combination of those, I can help my many students and colleagues with chronic conditions and trauma histories who do not have the same explicit legal protections set reasonable boundaries and advocate for themselves. Likewise, I can help fellow adults with CF give voice to their own struggles and find support among peers who understand.
I suppose I haven’t changed all that much if championing the human rights of others has become my own most powerful weapon against internalized ableism and the deep shame it instills. Getting to make a difference for my fellow people has often kept me going through things I still feel uncertain about wanting to survive.
I’d like to live in a world where easier answers present themselves to these problems. I’d love to live in one where sleep difficulties are not compounded on multiple levels by ableist discrimination and capitalist exploitation and fascist violence. Neither I nor anyone else can take away those structural oppressions entirely. But I can try again tonight to let my mind as well as my body get the rest it needs. And tomorrow, I can do my best to ease the path for others by choosing disclosure over silence.
Struggling to Sleep
Andrew Corcoran
I used to fall asleep in class almost everyday my freshman year of high school. It got to the point where my teacher told my parents he thought something was wrong with me. What was happening with this sleepy student who couldn’t keep his eyes open all morning? Of course there was something wrong with me–I have cystic fibrosis. My teacher didn’t know this and when my parents told him, his sympathy didn’t go far. I used to love sleeping. It was my happy place. As a child, I would get into bed and laugh myself silly because I was so happy to sleep. I would literally fall asleep smiling, hugging my quilt up to my neck, laying on my Star Wars bedsheets. It never occurred to me that I needed more sleep than everyone else because of CF. I really just thought I was tired all the time because I was a growing boy.
One Christmas, when my sister, brother and I were young, we had a fire in the house. A candle burned down and must have tipped over to the Christmas tree and lit it up like a struck match. My mom ran into my brother and I’s room, panicking, telling us to get up, run down the stairs, and out the front door. My response? “Ok, just five more minutes.”
In my opinion, sleep is a superpower, especially for those who can do it any time of day, at any moment, through any obstacle. And, even more especially, for CF patients.
Until I was 18, that was me. I could lay my head down, close my eyes, and drift away. Then, I got sick with my first real bout of pneumonia. In between my freshman and sophomore years of college, I developed a horrible pneumonia while studying in Ireland. I was only there for a few months, but when I returned to Philadelphia, my lung function had dropped almost in half. The loss was devastating and it wasn’t long until I was placed on the transplant list.
Every CF patient knows how deeply and thoroughly a transplant affects their world. As far as sleep goes, I’ve been an insomniac ever since. No more peaceful nights. No more smiles laying in bed. No more joy at the prospect of turning in for the night. In its place, was now anxiety, fear, depression, panic, and dismay.
Early on, I had many days where even the thought of sleep would cripple me at breakfast and never let up. Sleep, itself, changed too. Restless nights. Tortuous. Tossing and turning and worrying all night long.
In 2021, years after my transplant, I got very sick while living in Los Angeles. I was intubated and put in a coma for almost a week. Coming out of that, I then immediately stayed awake for nearly six days. My anxiety would not lessen. My mind was too active and intruding thoughts were too overwhelming. By the fifth day, I was delirious. I had ICU psychosis and was hallucinating. Eventually, my body and mind, depleted to the point of madness, shut down. I literally passed out from exhaustion.
Over the years, I’ve been treated for anxiety, depression, and insomnia. But I never truly regained that superpower I once had. For 25 years now I’ve never been able to get back to that place where sleep was easy, where the nights were welcomed, and sleep was a friend.
For those who struggle with sleep, as I do, the good news is that help comes. If not now, then someday. Time has been my friend in this aspect. Although my sleep is not and perhaps will never be as it was prior to my transplant, it is better–particularly when my lungs and breathing are strong. That’s the rub, when my breathing is bad, my sleep is bad. Conversely, when my lungs are in good shape, sleep is better. That relationship will always be a struggle. Of course, struggling is something all CF patients are familiar with – it is the invisible thread that connects us all. We struggle.
We cry. We love. We overcome.
The Effects of the Budget Reconciliation Act of 2025 on Medicaid, Medicare, and the Affordable Care Act
Beth Sufian, J.D
Many CF Roundtable readers have asked how Medicaid, Medicare, and the Affordable Care Act beneficiaries will be affected by the 2025 Budget Reconciliation Act – also known as the One Big Beautiful Bill Act of 2025 (OBBBA), and who will be affected by changes in coverage and eligibility.
OBBBA reduces federal spending on Medicaid, Medicare, and ACA coverage by more than $1 trillion through 2034. It makes these reductions by changing eligibility and enrollment criteria for Medicaid, Medicare, and Affordable Care Act coverage. An estimated 15 million Medicaid beneficiaries will be disenrolled by 2034. That is 1 in every 5 of all current beneficiaries.
All information in this article is based on information available on April 26, 2026. Nothing in this article is meant to be legal advice and is only information.
CHANGES TO MEDICAID
OBBBA makes the most substantial changes to Medicaid. The OBBBA applies to Medicaid generally, but it primarily targets individuals enrolled in Medicaid through Medicaid expansion under the Affordable Care Act. Generally, individuals between the ages of 18 and 65 years and with income below 138% of the federal poverty level are eligible to enroll in expanded Medicaid in states that have adopted expanded Medicaid programs. Most states and the District of Columbia have done so, but ten states have not. The apparent legislative design of the OBBBA is to undo or reduce the availability of Medicaid to the Medicaid Expansion population.
Medicaid Expansion Under the Affordable Care Act
New Community Engagement Requirement.
The most significant change OBBBA makes to Medicaid is the new federal work requirement to receive Medicaid. The Act refers to the work requirement as a “community engagement requirement.” Under OBBBA, an individual otherwise eligible to receive Medicaid will now be required to spend at least 80 hours a month in “community engagement” to enroll in and then maintain Medicaid coverage.
What is “Community Engagement?”
Community engagement is defined as working, volunteering, or attending school. A person enrolling in Medicaid has the burden to verify that he or she has met this requirement and then must verify meeting this requirement every month thereafter to remain enrolled. Verification requires new administrative apparatuses in the state systems to manage the eligibility requirement. This will entail new procedures, forms, and record keeping for the Medicaid agency, beneficiaries, schools, employers, and business entities.
When is the Community Engagement Requirement Effective?
State Medicaid agencies must implement the new community engagement requirements by January 1, 2027. However, several Medicaid programs have already implemented or plan to implement the work requirement before January 2027.
To Whom Does the Community Engagement Requirement Apply?
Many people with CF receive SSI or SSDI benefits because they have proven that they cannot perform any kind of work or other substantial gainful activity. Will they be required to meet the work requirement? Probably not because the OBBBA applies the work requirement to all “able-bodied” Medicaid recipients ages 19 to 64.
Who is Exempted from the Community Engagement Requirement?
Children are not subject to the community engagement requirement. “Able-bodied” appears to exclude individuals with disabilities. The community engagement requirement appears to be directed at individuals enrolled in Medicaid under a Medicaid expansion program. The OBBBA excludes several categories of individuals from the community engagement and work requirement, such as an individual who is:
Responsible for a disabled child 13 years old or younger, or a caregiver for a disabled relative;
A veteran with a VA total disability rating;
Diagnosed with a physical or mental disorder that significantly impairs their ability to perform one or more activities of daily living;
Already subject to work requirements under SNAP;
Participating in drug or alcoholic treatment and rehabilitation program;
Under the age of 19;
Pregnant or entitled to postpartum medical assistance;
Entitled to or enrolled for benefits under Medicare Part A or enrolled for benefits under Medicare Part B;
A recent inmate of public institution anytime during the three prior months;
A Native American eligible for the Indian Health Service.
In addition to these exclusions, States may create other exceptions for short-term hardship events.
How Does the Community Engagement Requirement Cause Beneficiaries to Lose Medicaid Coverage?
The work or community engagement requirement is expected to cause otherwise eligible beneficiaries to lose Medicaid because a large proportion of Medicaid beneficiaries live in areas where there are few schools, few employment opportunities, and few volunteer opportunities. Also, a person who is temporarily incapacitated due to illness and unable to perform the community engagement requirement may be dis-enrolled from Medicaid because of illness. They lose their Medicaid when they are sick and need health services, but have coverage when they aren’t sick and don’t need any medical services.
Also, each state is now tasked with redetermining eligibility and exemptions every month for millions of beneficiaries. Administrative difficulties in collecting, submitting, and reviewing documents every month may cause individuals to lose their Medicaid, despite being eligible and meeting all work requirements or exemptions.
Who Enforces the Community Engagement Requirement?
The work requirement is a provision of federal law, but it will be administered by the states. Each state will interpret and implement the federal law for their residents. Much will depend on how each state defines “able-bodied” and which disabilities or other conditions will qualify for an exception under each state’s rules. Each state is now making rules to implement OBBBA work requirements, if it has not done so already. There may be an opportunity to advocate and educate policy makers in your state to include cystic fibrosis in the list of physical or mental conditions that significantly impairs the ability to perform one or more activities of daily living, and therefore excluded from the community engagement requirement.
2. Shortened Retroactive Medicaid Eligibility.
Before the OBBBA, Medicaid would pay for medical services provided up to three months prior to the month an individual enrolled in Medicaid. OBBBA shortens the retroactive eligibility period for all medicaid beneficiaries.
For individuals enrolled in Medicaid under an ACA Medicaid expansion program, the OBBBA shortens the retroactive Medicaid eligibility period from 3 months to 1 month. For all other Medicaid applicants, OBBBA shortens retroactive eligibility from 3 months to 2 months. The financial impact of this change will fall on hospitals and healthcare providers. It will reduce reimbursements to providers and increase the rate of uncompensated care. This imposes a substantial reduction in revenues to healthcare providers across the nation.
3. More Frequent Medicaid Redetermination.
Before the OBBBA, eligibility for enrollment in an ACA Medicaid expansion program was determined at the time of enrollment and then redetermined once every 12 months thereafter. Under the OBBBA, redeterminations must now be performed once every 6 months rather than once every 12 months. This doubles the administrative burden on the states. Even if additional federal funds are made available for administering more frequent eligibility determination, every dollar spent on increased eligibility determination is a dollar that could have been spent—on delivering health services to people in need.
CHANGES TO MEDICARE
OBBBA affects Medicare in two major ways. First, it eliminates Medicare eligibility for certain non-citizens. Second, it reduces funding and changes eligibility for low-income subsidies for Medicare beneficiaries.
Exclusion of Certain Non-citizens from Medicare.
The OBBBA excludes certain legal immigrants from enrolling in Medicare. The law before the OBBBA excluded immigrants without permission to remain in the United States from Medicare. Because migrants without permissions did not have payroll withholdings, they did not contribute to Social Security or Medicare. However, immigrants who received an authorization to work contributed to Medicare and Social Security through payroll withholdings and were eligible to receive the benefits for which they paid, even though they were not U.S. citizens. This is no longer the case.
Now under the OBBBA, immigrants who are lawfully present even if they previously had Medicare coverage, are no longer eligible for Medicare. Affected non-citizens who are already receiving benefits will lose their Medicare coverage by January 4, 2027. The affected immigrants who will now be excluded from Medicare are: (a) refugees; (b) persons granted asylum by the United States; and (c) persons granted temporary protected status. This change in law only excludes these non-citizens from receiving Medicare benefits. The change in law does not relieve these non-citizens from paying Medicare taxes. They are still required to pay tax for Medicare, but they are prohibited from receiving the benefit for which they paid.
Not all non-citizens lose Medicare eligibility under the OBBBA. Certain non-citizens will retain their eligibility for Medicare. Lawful permanent residents (i.e., green card holders), Cuban and Haitian entrants, and individuals under the Compact of Free Association (people from the Marshall Islands, Micronesia, and Palau) retain the ability to receive Medicare.
OBBBA Reduces Low Income Subsidies for Medicare Beneficiaries.
Unlike Medicaid, Medicare has copays, deductibles, and other cost sharing features including an unlimited Part B co-pay obligation. Because of the substantial cost sharing obligations on Medicare beneficiaries, Medicare can be unaffordable to low-income beneficiaries.
To address this problem previously, Medicare had low-income subsidies (LIS) programs to make Medicare more affordable for low-income beneficiaries. However, the OBBBA reduces funding for low-income subsidies for Medicare beneficiaries.
Reduction in Qualified Medicare Beneficiary.
One form of low income subsidy is for qualified Medicare beneficiaries (QMB). A QMB receives Medicare and also receives Medicaid because of low income – sometimes called a dual-eligible beneficiary. Medicaid previously paid a QMB’s Medicare premiums and most other Medicare cost-sharing. This is a cost savings mechanism for Medicaid because the cost of Medicare deductibles, copays, and premiums was substantially less expensive than Medicaid bearing the full cost of care. New federal rules were adopted in 2023 (but not yet implemented) that would have made QMB enrollment automatic, which would have saved Medicaid programs more and enrolled more covered individuals.
However, the OBBBA prevents implementation of the 2023 rule change that would have made QMB enrollment automatic. OBBBA creates requirements making it harder for low-income individuals to obtain and maintain their QMB status, including more frequent eligibility redetermination (now every 6 Months instead of annually), and stricter documentation requirements. The Congressional Budget Office estimates that 1.3 million Medicare enrollees eligible for QMB will lose or forgo this low income subsidy.
Medicare Extra Help Low-Income Subsidy.
Extra Help is a Medicare low-income subsidy which helps Medicare beneficiaries pay for Medicare Part D prescription drug costs. The Extra Help program lowered or eliminated the cost of Medicare Part D premiums, deductibles, and copays for prescription drugs for low income beneficiaries. Before the OBBBA, the Extra Help low-Income subsidy was typically automatic for qualified persons enrolled in both Medicaid and Medicare. New regulations that were designed to simplify enrollment in the Extra Help program had been scheduled for implementation.
The OBBBA eliminates automatic enrollment in the Extra Help program for individuals who are receiving Medicaid and then become eligible for Medicare. Beneficiaries must now separately apply for Extra Help LIS through the Social Security Administration. Also, the implementation of the new regulations designed to simplify enrollment in the Extra Help program are now delayed under OBBBA.
Effect on Affordable Care Act Premium Subsidies.
Enrollees Must Prove ACA Eligibility First.
The Affordable Care Act makes subsidized health insurance plans available through the ACA insurance marketplace. Subsidies are tax credits that reduce monthly premium cost of health coverage. Individuals and families purchasing ACA plans are required to show income, immigration status, and other eligibility details. In the past, a new ACA plan enrollee could enroll in coverage and have up to 90 days of premium assistance during the application and verification process.
Under the OBBBA, new ACA plan enrollees (including those who enroll with special enrollment) must now prove eligibility before they can enroll or receive any coverage or subsidies.
No Automatic Re-Enrollment.
During the 2025 coverage year, 10 million people were automatically re-enrolled in ACA plans. However under the OBBBA, ACA Plans are no longer automatically renewed; not even for eligible individuals. ACA plan enrollees must now re-apply during open enrollment each year by providing updated income, immigration status, and other information, irrespective of whether there have been changes to such information. Failure to re-apply and resubmit all documentation will result in a loss of coverage.
Shortened Open Enrollment Period.
The OBBBA shortens the ACA open enrollment period by one month. The ACA open enrollment period in the past was typically two months, beginning around November 15 and ending January 15. The OBBBA shortens the ACA open enrollment period to one month. Beginning in 2026, the ACA open enrollment period will run from around November 15 to December 15. This change may cause persons eligible for ACA coverage to lose coverage. During the 2025 coverage year, 40% of all persons with ACA coverage signed up for coverage after December 15.
People with ACA plans should monitor their Marketplace website for information about changes that might apply to their current plan. They should also gather the information needed to verify eligibility before open enrollment begins and be prepared to re-enroll before December 15.
Conclusion.
The 2025 Budget Reconciliation Act will impact most people’s health plan regardless of whether their coverage is a public benefit or private coverage. Even if the new law does not directly impact the eligibility standards or enrollment criteria of a particular health benefit plan, a reduction of $1 trillion in spending on health services over the next seven years (that is $143 billion per year) will impact everyone. The reduction will affect the availability of health services, prescription drugs, and medical products, including whether they are available, how they are delivered, and how much they will cost.
Trust Me: Fill Out The Forms ASAP
Katherine Lockwood
I now work full time again. In a school. With great health benefits—$600 a month premiums for the family plan through Harvard Pilgrim. For over a decade I have had MassHealth which is the state of Massachusetts’ Medicaid plan. For a lot of that period, it was as a secondary insurance.
There are a lot of benefits of having MassHealth as a secondary insurance:
It takes care of your deductible.
It brings all of your copays for appointments to $0.
It brings all of your prescription copays to nothing or almost nothing.
If you do have MassHealth as your secondary insurance, you may be eligible for enrollment in the Premium Assistance Program (PA). This program covers the cost of premiums for MassHealth and a portion of your Employer-Sponsored insurance (EIS) plan premiums because it is cheaper for them if you enroll in an (EIS) insurance plan with MassHealth as your secondary. For me, that was $323 a month.
You can be eligible for the PA program through the CommonHealth MassHealth Plan if:
You are disabled per their eligibility—they have a Disability Supplement form you need to fill out.
You are working at least 40 hours per month.
Your family’s income doesn’t matter for eligibility purposes but it does matter in terms of what your monthly premium will be.
Having access to another insurance plan can be helpful, especially where mental health benefits are concerned. MassHealth mental health benefits are very limited in my experience.
This past fall, I received a letter saying I needed to re-apply for the PA program. I took my time filling it out and ended up getting kicked off the program temporarily. I then started getting bills for MassHealth; I didn’t pay because I was supposed to be back on the PA program and shouldn’t be receiving a bill. By the time I got that sorted and PA was active again I got another letter saying my MassHealth was being discontinued for non payment. When I called they informed me that it was my responsibility to let them know that the PA was worked out and I was enrolled. What?!
I went on a payment plan hoping that would keep my insurance until this got sorted. Sometime during this mess I received another heavy packet saying I needed to re-apply for the MassHealth disability criteria, which I did in a “timely fashion” but it was returned because they wanted specific releases for my multiple specialists. So I filled those out and emailed them in. Great, right? Nope. Those were sent back because they only accepted original copies and the mail was delayed due to a big snowstorm, etc. So, by the time I got the mail my MassHealth was completely cut off because I, according to them, hadn’t submitted the Disability Supplement form in a timely fashion and we are over the allowable income for any other MassHealth plans. Lovely. There is nothing anyone can do. Great. I need to wait until the Disability Supplement is processed—perhaps eight weeks. Come on!
So, this past month I have only had my work insurance which, as I said, is a good insurance plan. However, no insurance plan is great for those with 20 medications and many doctor appointments. I had to pay approx $500 for my prescriptions since this happened. So. Much. Fun! I’m exhausted just reading this.
My advice—push through the strong desire to put off filling out the forms. Fill them out the day you get them and mail them immediately then celebrate this accomplishment. Save yourself from the agony of not doing it!
Medicaid Keeps Me Alive
Anonymous
How have you been doing the past eight months?
The last several months have been very difficult. Eight months ago I received forms for a Social Security Continuing Disability Review for Supplemental Security Income (SSI). I thought the forms were not important because I incorrectly thought people with CF are on SSI benefits for life. I found out later that no one is on SSI for life.
I answered the questions on the 10-page form quickly and returned the form to the Social Security Administration (SSA). One month later I received a letter in the mail that said my SSI benefits and Medicaid were stopping. SSA had determined I was not eligible for SSI benefits based on my answers on the form. I panicked and could not do anything for three days.
Why were you so panicked?
In my state there is no Affordable Care Act Medicaid expansion. This means that low income adults over the age of 18 cannot obtain Medicaid coverage unless they are eligible for SSI benefits. I looked at buying an Affordable Care Act policy but the cost was $880 a month and I had no money to pay for the coverage. My daily CF-related health issues are severe and I cannot work. I am not able to obtain health insurance through an employer. I am not married so I cannot obtain insurance through a spouse. I am over the age of 26 so I cannot obtain insurance from my parents’ employer’s health insurance plan.
What did you do?
I called my CF center social worker and asked her if she could help me file an appeal. My social worker told me that an SSA appeal is very complicated and she said she would not know how to file an effective appeal. She gave me the phone number for the CF Social Security Project® (CFSSP) and told me their attorneys had been helping people with CF with SSA matters for over 30 years. I had never heard of the CFSSP. I called them right away. I was able to speak with the Director of the CFSSP, and she told me that she was an attorney who has CF and is 60 years old. I started to cry. I felt like things would be ok if she could help me with my appeal.
Did you lose Medicaid coverage when you lost your SSI Benefits?
Yes. I lost Medicaid a few weeks after I received the letter from SSA terminating my SSI benefits. One of the attorneys at CFSSP spoke to me the same day I emailed them but it had already been 30 days since I received notice that my SSI benefits were being terminated. SSA requires that you appeal a termination of SSI or SSDI benefits within 10 days of receiving the SSA written notice of termination of benefits if you want to continue benefits while you wait for a hearing.
I was so upset and nervous after I received the termination notice that I did not call SSA to see if I could appeal. This meant I lost not only my SSI benefit but also Medicaid coverage. I did not realize that my state does not provide Medicaid coverage to low income adults unless the adult is eligible for SSI or has a low Social Security Disability monthly check. But I quickly found that out.
What effect did losing Medicaid have on your health?
Without Medicaid coverage I could not obtain any of my CF medications. My CF Center tried to get me my most important medication for free but they were told I could not have the drug unless I had insurance coverage. Without that medicine my health declined dramatically.
I tried all sorts of programs to try to get my medications but every potential resource said they could not help me. My CF Center was not able to schedule a CF Clinic visit because I had no insurance and I did not have $350 to pay for my CF Clinic visit. They told me because the state does not provide Medicaid expansion there were many people with CF who had no insurance coverage. This meant the hospital could not provide free clinic visits.
What do you think people with CF and their CF Care teams should learn from your Social Security experience?
CF Care team members should inform their patients ahead of time that they may receive a SSA Review and that even if it is just one page it could result in losing SSI or SSDI and losing Medicaid or Medicare coverage.
CF Care Center teams should let patients know that no one is on SSI or SSDI for life and that benefits can be stopped after a SSA Review finds the person to be ineligible for benefits. I wish I had known that Social Security medical reviews have increased a lot in the past two years and that the review paperwork can lead to you losing benefits and Medicaid or Medicare very quickly after you send the forms back.
I wish I had known that if I lost SSI after my Review I would also lose Medicaid. If I had known that I would have asked my social worker if there was help I could get with the SSA forms.
How long did it take to get a hearing?
My attorney from CFSSP filed forms asking for a hearing right after I contacted her. My attorney warned me that my lack of insurance would not necessarily allow for a quick scheduling of a hearing. I thought that was unfair but I knew it was not her fault. My lawyer did her best to get a hearing quickly but she had no control over SSA. Also, since there are so many people losing benefits after a review there are a lot of people appealing and asking for a hearing. It took seven months from the date she filed for a hearing before I had my hearing before an SSA judge.
What issues cause you to be unable to work?
My CF-related health issues cause me a lot of trouble every day. Every time I tried to work I got sick and ended up in the hospital and then my employer let me go. When I was approved for SSI benefits and Medicaid benefits many years ago it allowed me to take care of myself and do my breathing treatments, manage my diabetes, and deal with my daily severe stomach issues. It also provided me with Medicaid coverage with no premium or copays. Additionally, it covered all of my medicine, clinic visits, and any other medical services I needed.
What helped you have hope during this time?
Having the CF Social Security Project helped me. The fact that my lawyer has CF really reduced my anxiety about the whole process. She knew all about the issues I was dealing with and that meant she could help me figure out how to explain my daily health issues to the judge.
How did you prepare for the hearing?
I was very nervous the week of the hearing. My attorney met with me on the phone for four days in a row and that helped. I don’t have a good memory so I wrote things down and that helped. She asked me questions that the judge would ask. No one with CF likes to say they are limited so it was very helpful to have someone who understood my trouble admitting that I have a lot of daily limitations. The night before the hearing I only slept for about an hour. There was so much riding on the hearing and I was so nervous. Making sure the judge understood my daily limitations was the way I would be able to obtain Medicaid coverage again and receive the medication and treatments I need to literally stay alive.
Did the judge decide you are still eligible for benefits?
The SSA judge did decide that I was still eligible for SSI and that the first decision saying I was not eligible was incorrect. My Medicaid coverage became effective two weeks later and I was able to get all of my medications and go see my CF Center. Access to SSI and benefits meant access to Medicaid coverage and that saved my life.
The Rarity In Us
Matison Deaton
As you are reading this there are over 100,000 people waiting for life-saving organ transplants. Every eight seconds, a new person is added to the national transplant waiting list and, in May 2022, I was one of those people. Three months and one day later, I received an exceptionally rare combination of life-saving organ transplants. I was listed as a combined lung and kidney recipient, meaning that once I got the call I would receive both lungs and one kidney from one single donor. When I was placed on the waitlist, I was told by my lung transplant team that I would be in a group of less than one percent of transplant recipients, making that combination exceptionally rare. Today, I’m told the estimated number of combined lung and kidney transplants is even less than that.
Being listed as a combined recipient for multiple organs from one donor is pretty standard for those who are in multi-system organ failure. Having the organs you need come from one donor potentially lessens the chance of organ rejection down the line. With only one donor’s DNA introduced into the body, the immune system has fewer foreign markers to react to, which can lower the risk of future rejection. With multiple donors, there is the possibility of immune system attack. My team would’ve switched to one donor for each organ only if my respiratory health had greatly declined while I was on the waitlist, thus putting my life at risk. The urgency would’ve been for lungs in that case and the kidney transplant saved for six months to a year later. After all, life support for kidney failure is available through dialysis, whereas you cannot live long in respiratory failure.
The big thing ringing in my mind with having a rare combination of organ transplants was how vague life outcomes and possible complications were. Very few lung-kidney transplant (LKT) cases are performed each year. To put it into perspective, studies show that in 2005, one single lung-kidney transplant occurred in the US. The year I had my transplants, 2022, 16 occurred. In the pre-transplant process, patients are educated on what to expect with the organ transplant they’ll be receiving, like statistics on the survivability of that transplant. Neither my transplant team nor I had the clearest idea of what this experience would be like. The statistics on survival in the years following a lung-kidney transplant were mixed—some data showed LKTs had a higher percentage of survivability than a bilateral lung alone while some showed it was lower. That lack of clarity was destabilizing for me.
To ease my worries my transplant center did all they could to lead me to information they had available at the time. UCSF has a mentor program for lung transplant candidates that any pre-transplant patient could opt into. This is an opportunity that was formed by the social workers on the team. If you were interested, you could be connected with someone from your center who had already gone through the transplant process who was willing to share their experiences. It sounded so reassuring to ask questions of someone who had been through this process already. So, imagine my disappointment when I learned that there wasn’t a single lung-and-kidney recipient with whom I could be connected. Somehow, in a way I cannot quite explain, it felt both ominous and hopeful at the same time, like I was on an already-worn path but without any direction as to where it would lead. In the end I never connected with a mentor, even to hear what a lung transplant would be like. I was going to go through with my transplants no matter what, so if I couldn’t hear from someone in my exact situation, I thought it was better to go in without any expectations at all.
As it turned out, I gained a lot from going through my transplants sans specific expectations. While I was on the transplant waiting list, I learned something shocking about the kidney transplant process. I asked if the doctors would remove my kidneys before the donor kidney went in and was shocked to learn they wouldn’t even see my native kidneys! The kidneys a person is born with are called native kidneys in respect to the transplant process. I’d be waking up with my native kidneys still intact and right where they’ve always been, with the donor kidney tucked snuggly into my abdomen. I would live with three kidneys going forward.
Typically, the only reason they would decide to remove someone’s kidneys is if they were actively causing harm to the body. While that’s possible, it’s less common. For one, your native kidneys are in a completely different area than where a donor kidney is typically placed. Kidneys are naturally towards the back of the body, around the low back area, while a donor kidney is placed in the front of the body in the abdominal space. As they explained it, to remove someone’s native kidneys would require incisions in the back of the body, leading to an unnecessarily painful and more difficult recovery process. They’d then have to flip you over and create another incision to transplant the donor kidney. At the time, I couldn’t imagine a whole separate kidney fitting into my body, but here I sit today, with my donor kidney “Turbo” filtering away beneath a faded, hidden scar on the right side of my abdomen.
The second reason they don’t remove your kidneys was more obvious to me. If your kidneys are even functioning minimally, there’s no reason to cut that off through removal. To qualify for a kidney transplant, there must be a significant loss in kidney function. For some people, they lose all function and require dialysis to take the place of the kidneys; fortunately I wasn’t there yet. My kidneys were still functioning minimally. To disconnect and remove mine wouldn’t make sense if leaving them connected would mean they contribute even a little bit. When a donor kidney gets transplanted, it begins to compensate for the job the native kidneys can no longer do, meaning at least for a little while, my native kidneys would continue with whatever little function they had until Turbo was in full effect. Eventually, the native kidneys end up atrophied or much smaller in size from the lack of use. I remember reading the CT report after one of my followup appointments where the radiologist had noted my native kidneys seen in my abdominal scan had atrophied. I had to google the word, and when the definition of “partial or complete wasting away or shrinking” popped up, I had this sudden, overwhelming maternal feeling toward them. My original kidneys that had been with me since birth, which fought so hard against damage and time, giving all their strength and power to my body until they couldn’t anymore, were now finally resting.
In many ways, living as somewhat of a rarity as a post-lung and kidney transplant recipient feels similar to what I think many of us experience living with cystic fibrosis. There’s research, anecdotes, and statistics out there but most of our understanding comes from being thrown into the unknown and learning as we go. Younger generations may never have the conversation I had as a pre-teen about the likelihood of one day needing a lung transplant to survive simply because they were born into a world where CF is more treatable now than it was when I was born. Adults today are facing unfamiliar territory in aging with CF and learning what that looks like as a CF patient. I’m sure each of us with cystic fibrosis has a rare story to tell and I hope we each find our way of telling it.
Running... But Only In Emergencies
Katherine Lockwood
I turned 38 this year.
When I was born in 1988, the life expectancy for people with cystic fibrosis was much younger. For most of my life, 38 was the number. It was not something I talked about at parties, but definitely something quietly hanging out in the background like, “Hey… just so you know… maybe don’t plan too far ahead.”
So I got here.
And I assumed I’d feel proud. Grateful. Maybe I’d pause, reflect, give myself a little internal gold star for years of taking my meds, mostly doing treatments, maintaining a positive attitude—and, let’s be honest, a strong contribution from luck.
Instead—
I’m terrified.
Because now there’s… middle age. Maybe even old age.
And it turns out that’s not calm or reflective. It’s two young children, a full-time job, a part-time job, a picture book side business that got out of hand, and a house that looks like a toy store exploded and no one has come to investigate.
Also, my body.
We need to talk about my body.
I have what I lovingly refer to as a “CF belly,” and thanks to baby number two, I’ve added an umbilical hernia that I need to manually pop back in multiple times a day. Nothing says “you made it to 38” like new and exciting structural issues.
And now—because I lived—
I am supposed to exercise.
I know. I KNOW.
Exercise is good for us.
It helps with airway clearance.
It’s good for mental health.
It improves sleep. There are countless benefits of exercise.
Will I be demonstrating any of them?
Unclear.
Especially now that I work remotely and spend a concerning number of hours sitting on my couch.
Which, I’m told, is not ideal.
I have thought about it a lot.
I signed my kids up for therapeutic horseback riding this spring (which cost approximately one million dollars), plus Ninja class and swim lessons this summer.
So they’re doing great. Very active.
For myself, I signed up for a sound bath on a float in a pool. You lie there. You do not move. There are soothing noises. I’m not sure if this counts as exercise, but I did have to get onto the float, so I feel like we shouldn’t dismiss it entirely.
I’ve also considered doing aerial yoga, which is lovely, especially at the end when you get to rest and sway in the fabric. I briefly considered Pilates, but I have done Pilates before, and I remember it being really difficult.
What I have done is walk around the block a few times this week.
Once, I even ran.
This was not for fitness. This was because one of my children did not respond to “RED LIGHT!”—our very serious, very urgent command that means stop immediately and come back before something terrible happens.
So yes. I can run. In emergencies. I definitely used my inhaler afterwards.
This season of life is busy. Like, aggressively busy. And exercise isn’t competing with free time—it’s competing with everything. Work, kids, therapies, meals, laundry, the mysterious sticky spots on the floor that no one will claim responsibility for.
And underneath all of that is something a little harder to name. Because for those of us who didn’t always expect to get here, there’s something strange about suddenly being responsible for a future body.
We’re maintaining this now? Long-term?
Now I need to worry about all the terrible things that can happen to your body when you age. Oh joy!
I’m still figuring out what that looks like.
It’s not a gym membership. It’s not a 5K. It’s not a New Year - New You!
Right now, it’s walking.
Around the block.
Sometimes with kids.
Sometimes alone.
It’s not impressive.
But it’s happening.
And in this season of life—this very full, very loud, very unexpected life—
That feels like enough.
Because soon I’ll be dancing at our CF walkathon-turned-party, where this year’s theme is disco. Because, apparently, I am “staying alive.”
And the truth? Dancing–… I do daily. In the kitchen. In the living room. With my kids. In between everything else. Not structured. Not scheduled.
It’s movement. It’s joy. It’s being in a body I didn’t fully expect to still be living in.
And maybe, for now—that counts as exercise too.
Embracing the Phoenix
Sydna Marshall
The thing about hitting rock bottom is that you don’t really notice the long slide downhill until you hit bottom. This is the story of how I found myself at the bottom and clawed my way back to the top.
2020 was rough for everyone. On top of COVID-19 and all the stress and anxiety that came with that, my mother passed away on September 21, 2020, just two days after I turned 40. Mom dying wasn’t a surprise—we had all watched her decline over the course of the year. She was intubated and put on life support in August. By some miracle she fought her way back and we had a whole month with her. She later told me that she saw her mom during that time and her mom told her it wasn’t time yet. I like to think she held on just long enough to see me outlive my life expectancy and then let go.
My life fell apart from there. It doesn’t really happen all at once, but piece by piece and day by day. I wrote notes to mom on my IG and FB for the entire year—notes to celebrate the big and small moments, the hard moments, and many things in between. They were cathartic and a huge part of my grieving process. Along the way, drinking became my primary coping mechanism. Alcohol was a double-edged sword: it numbed and dulled the emotions for a bit until all those feelings later slammed into me like a wrecking ball. Alcohol made processing life so much harder. It took me another three years to realize alcohol wasn’t really helping me at all.
Those three years came with a lot of change and all at once, both personally and medically. My lung functions were declining and by 2022 my baseline PFTs were in the low 70s. I found myself having coughing fits every night for hours at a time, three weeks of home IVs weren’t helping my lung functions at all and I just couldn’t get better. My new baseline was hard to accept—for the first time in my life my lungs no longer felt resilient.
Prior iterations of genetic modulators didn’t work well for me primarily because of the side effects—brutal headaches that wouldn’t abate. After much back and forth with my CF clinic and a few anecdotal stories about drastically improved sinuses from my ENT I decided to give the Trikafta a try. We agreed to start with the hepatic dosing of it since my liver functions had been elevated since 2013. I took my first dose on August 19, 2022—what would have been my mom’s 73rd birthday. I was deathly afraid of the side effects: notably, weight gain, acne, and a decline in mental health. I knew I was already barely treading water with existing grief. As it turned out, Trikafta was truly life saving for me. My sinuses cleared up within the first month and I now only see my ENT once a year for a routine check, which is a drastic change from the monthly visits for the past decade. I no longer do treatments per my CF clinic doctor and my PFTs are now the highest they have been in probably a decade. I didn’t get any acne and my mental health definitely took a hit but probably not from the Trikafta. That one is hard to say. I did gain about 20 pounds upon starting the Trikafta but I knew my health had drastically improved. The tradeoff felt worth it.
The infection I had during the last round of home IVs before I started Trikafta damaged my pancreas. I don’t have any hard proof of this but my gut tells me I’m right. After that last round of antibiotics I found I needed enzymes. Prior to that if I was careful with what I ate I didn’t need them very often. I had always reasoned that if I need enzymes to eat something then I probably shouldn’t be eating it. Healthy eating went out the window when I had to take them at every meal, regardless of what I ate. All the things I had studiously avoided for years I was now eating fairly regularly: hamburgers, donuts, fries, dessert, blah blah blah. Nothing was off the table. Somewhere along the way while eating and drinking my feelings I discovered Bota Box wine. Oof. Having a box of what I lovingly called my wine udder in the fridge made it easy to keep refilling my glass. Needless to say, I gained more weight.
During this time I really struggled in several of my personal relationships. There was a lot going on all at once. When you’re still grieving and you add alcohol to the mix it’s even harder to communicate your feelings in a rational and neutral way. Alcohol fueled those emotions.
One day in late 2023 I realized I owed it to myself and to mom to do better. I decided to go alcohol free January 1, 2024—I really love who I am without it so much more than the person I was when I was drinking. Alcohol had become a habit. Since I quit drinking alcohol, I’ve never once missed drinking, missed alcohol, or struggled to make it through the day without alcohol. And for that I’m deeply grateful. I thought I’d lose weight when I quit drinking but alas, I just replaced the source of sugar and ate more desserts.
By late 2024 I was the heaviest I’ve ever been in my life and profoundly uncomfortable with myself. I saw an ad for the new Harry Potter Conqueror Virtual Challenges. I was accustomed to walking regularly and didn’t think I really needed a medal to motivate me to walk but it was Harry Potter so I just had to get them. And you know what? They were incredibly motivating—I was up at 5:00 a.m. listening to the Harry Potter audiobooks and walking four miles every morning before the summer heat set in so I could get through all seven of those challenges (one for each book). Once I completed those, I started buying more. I’ve now completed 55 challenges and have the medals to show all my hard work.
If you’ve read other things I’ve written you might remember that I’ve been doing yoga since 2004. I go through periods where I’m more or less consistent but it’s always been a mainstay in my life. My yoga mat has really saved me mentally and I’ve written about that in past issues and blogs. I started prioritizing my 9:00 a.m. class and became a regular.
I’ve had osteopenia on my medical record for quite a while now and my vitamin D has been as low as 5. I was starting to see an improvement in my vitamin D levels since getting on Trikafta, so I decided to focus on that as well as my bone density. In 2025 I restarted my membership to my local Club Pilates studio. I started going to a reformer class three to four times a week. In January of 2026 I attended my 100th class. What an accomplishment! Seeing my vitamin D levels stabilize between the 50s and 90s felt victorious and I was able to cut out the additional high-dosage vitamin D as well since I was already getting enough in my DEKA+ softgels. I also saw a small improvement in my DEXA scan from 2022 to 2024 (and now in 2026), which was a good motivator to keep putting in the work.
In August of 2025 CF and my poor food choices came back to haunt me—I was diagnosed with CF-Related Diabetes. I wasn’t really surprised—I had to pee hourly for a few months and I had some notion of the vast quantity of sugar and carbs I was consuming daily. As someone who has always loved cooking and had quite the extensive collection of cookbooks, I had a few days of mourning this newest diagnosis and how my relationship with food and cooking would drastically change.
And then I had an epiphany—CFRD wouldn’t be the hardest thing I’ve had to overcome. I survived losing mom and I survived a frontal obliteration. This was just a tiny little pebble in my path. My endocrinologist gave me a referral to a nutritionist, who I met with weekly for about nine weeks. I read everything I could about glucose, cellular processes, the body’s response to glucose and so much more. I felt like I was back at UT Austin taking a cell biology class and I loved it. I overhauled my diet—I cut out so many things that honestly, weren’t that great anyway. I changed how I cook and I’ve learned how to create healthier, low carb/high protein/keto versions of many things. I’ve really amped up my protein intake and cut my carbs and sugar down substantially. Having a CGM has been incredibly helpful for the real time data on how my food choices affect my sugar. I often say that watching my Dexcom is like watching a Chernobyl pressure gauge and the five minutes of joy from eating something that raises my sugar is never worth the anxiety as I watch that arrow go up at all. The days I have a stable arrow to the right all day are my favorite days and I have those days often. All that walking and Pilates I’ve taken have both paid off in spades—I have fairly decent insulin sensitivity. My goal is to stay off exogenous insulin for as long as possible and manage my diabetes with diet and exercise. It’s 100% worth the effort in my book.
I’ve now lost about 30 pounds which puts me at my pre-Trikafta weight. More importantly, I’m healthier across the board—I’ve got more strength, more muscle definition, better lung function, more mobility, and more flexibility. My mental health is better than ever thanks to all these changes.
There have been a few times when I’ve lamented that mom can’t see me thrive—that she didn’t live long enough to see this. But then if I’m brutally honest, I probably wouldn’t have started Trikafta if she hadn’t passed away. I also wouldn’t have flailed so spectacularly. But both of those things led me to this moment and where I am now. And perhaps, like the phoenix, I had to forge my own path of renewal and resilience in order to emerge from my own ashes.
In the Spotlight with Roseanne Greco (Part II)
Interviewed By: Andrea Eisenman
We’re back with the second half of the spotlight interview with Roseann Greco. In case you missed it, you can read the first part in the Winter/Spring 2026 issue of CF Roundtable.
Tell us about your challenging health times.
I have been through so many challenges in addition to having cystic fibrosis. I had kidney failure in 2015, which resulted in a month of dialysis. This in turn resulted in a brain injury with memory loss. I now have less patience when it comes to certain things in life, such as getting sick. I also deal with mood swings constantly.
I survived five port-a-caths being placed, five sinus surgeries and two episodes of kidney stones, one of which left me with a nephrostomy bag. I really have had no breaks in my lifetime, but I have always managed to make it through.
Cystic fibrosis is a lot of hard work for the patient and you have to advocate for yourself. It’s especially hard when you have a really lousy day and you just don’t want to do anything. I refer to the challenging times as a pimple on someone’s ass or a hole in the head I don’t need. Your pill case starts exploding because you’re on so many pills. With me, it’s especially challenging because of the memory loss. I have to remember whether I did a treatment or I took my medication. The disease gets overwhelming easily and dealing with exacerbations is annoying at times. You wish you could have a somewhat normal life. I call the hospital the happiness hotel, thanks to my dad, who coined the term. At some point in your life, you get used to all of it.
Tell us about your exercise routines. What do you do? How important is exercise in your daily life? When you have to stop working out for health flares, how does starting over make you feel?
My goal with exercising is trying to get my lung function back up to 60-70 percent. I’m trying to get into the 4-mile walk/jog they have in the spring where I live. They call it the Cow Harbor 10k. I exercise preferably three times a week. I enjoy kickboxing, wall Pilates, Zumba, and any dance workout to hip hop songs. My favorite workout is dancing to Whitney Houston music. Right now, I’m challenging myself to burn 350 to 500 calories daily. I also do core exercises, whole body exercises, and a dumbbell workout as well. I also want to get into spin class but maybe over the summer because the gym has too many germs during the winter months.
It’s deflating each time I get an exacerbation. I just feel like I put so much effort in only to have to start all over again and work towards regaining muscle strength and stamina. CF tends to make it harder to accomplish things you’re working toward. Since Trikafta plays an important role in my life now, I want to prevent weight gain and have less exacerbations.
Tell us about almost giving up and what kept you going through the difficult times.
There were so many days I thought I wasn’t going to make it. My mother has always told me that tough cookies don’t crumble. I started counting down the months during chemo because I was in so much pain. I was force feeding myself, then vomiting. Force feeding yourself is a really unpleasant feeling but I had no other choice. I was stuck with no other alternative if I wanted to live. The more I thought of my sisters, my parents, and my nephews (who always called me their cuckoo aunt Ro Ro), the more I knew they needed me around longer. My little niece would greet the world when I had only one or two more chemo treatments remaining. Despite the pain and misery of the whole process I knew I had to finish it if I wanted to meet her and have her know her aunt. I couldn’t have done it without their crazy laughs, their giggles, and their smiles. Even though my grandmother wasn’t physically around (she passed away two years ago), she knew what was going on—she visited me in my dreams and told me I was going to be okay. Those dreams felt so real; they gave me the courage to make it to the finish line. She came to the hospital in spirit, flickering the lights behind my head. From my very first chemo day to the very last one, she came to me with the sun shining as bright as it can be.
Tell us about growing up. You practically lived in the hospital!
I was born in June of 1983. Back then, if you were born with CF you had a very rare chance of making it. I was hospitalized from August 1983 to January 1985 at Long Island Jewish Pediatrics Center. I was transferred to Schneider’s Children Hospital, which is known today as Cohen’s Children’s Hospital. I was the second patient to be transferred to the NICU. I also made the newspaper back then for being the second patient admitted to the hospital. I then spent the next 15 months there. They informed my parents that they wanted to put me in a home for respirator-dependent children as they thought I wouldn’t be able to get off the respirator. My mother said no. I celebrated all my first holidays in the hospital—my first Christmas, my first birthday and every first holiday thereafter. My only playmates were the nurses who took care of me.
I was hospitalized for so long because the surgeon cut my phrenic nerve, which paralyzed and collapsed my diaphragm during surgery for innominate artery suspension, which was blocking about 80 percent of my airway. That’s how they came to the conclusion that I had cystic fibrosis. I have one functioning lung, even now. When doctors listen to my right side, they don’t hear very much and I feel it, too. My left lung tends to compensate for this, especially when I don’t feel well.
I didn’t come home until January of 1985. My sister wasn’t born until March of the following year. I had a trach until I was three years old. I finally got to meet Santa Claus, who came to our home, when I was six years old, just three years after the trach was removed. I missed out on many years of actually being a child during Christmastime. Even though I had a rough start, I still have a lot of good memories from those early years—Disneyland, my first concert, and my sister’s birthday party at Chuck E. Cheese, to name a few.
Are you in a relationship? Tell us about it.
I was visiting my friend in Florida and we had some disagreements while I was there so I wanted to get a plane ticket to go home. I called my sister and she said no, you can’t leave without working it out with your friend; you need to stay. So, I stayed. The next day, my friend and I took a ride down to Clearwater Beach. Every excursion from waterskiing to parasailing was booked so we walked into a shop on the boardwalk instead. I was trying on a dress in the back of the store and I heard my friend talking to someone from the dressing room. I came out of the dressing room and a lady complimented me on how I looked in the dress. I had no idea who she was! We got to talking and she told me that she was in Florida but from Connecticut. She was shopping while waiting for her delayed sailboat cruise. She had a single nephew who lived out of state. I thought to myself, I don’t know how any of this is going to work. She insisted on giving me his number anyway, leaving it up to me if I wanted to call him. I waited a day or two and asked my friend if I should call him. He said, “Yeah, go ahead, give it a shot.”
So, I finally called him. We talked back and forth for months, until that summer when Michael came to visit me. Six months later we were living together. Two years later we got engaged on Valentine’s Day. It wasn’t a traditional proposal since I was undergoing chemotherapy at the time. Michael and I have been together since May 2021. Next year we will celebrate four years together. He’s been my biggest supporter through everything that has happened with my illness. He is my rock and he has shown me what it is like to have a great time in life; he has given me a life that I had not had before. He always knows what is in my best interest and he makes the best medical decisions for me. If he feels something doesn’t sound right, he will act on it to help me survive. He is my sunshine after the rain, the cure against my fear and my pain. There is no love that is greater than the love he has given me and I am forever blessed and grateful for that. He has shown me that love does show up when you least expect it.
What do you do for fun? Tell us about your hobbies. How does your residential community support you with these interests?
I absolutely love where I live. It’s like being at a resort. I know everybody’s name here. It took me a long time to get into the facility where I currently live—I was on the waiting list for four years. We have bingo at the community center on Fridays and we play for money. We get a monthly calendar of the different events. I sometimes join them for Sunday lunch. I love elderly people and always wanted to work with them in an assisted living home. I’m kind of an old soul. I’ve joined the Halloween parties and the Christmas parties. I have not been to their New Year’s Eve party yet but hopefully soon. I’ve also played bingo at the other community right down the road from my sister’s friend’s house. Most of the residents that live in my community go and play there on Tuesday nights.
Mike and I are always at the movie theater. We sometimes get free tickets to the movie theater. I enjoy Adam Sandler films, Marvel movies, dramas, and movies that give a good belly-hurting laugh. I also enjoy movies by the Illumination studio, which created the Despicable Me movies. I love to read: James Patterson and John Grisham are some of my favorite authors for thrillers, suspense, and courtroom legal thrillers. I also enjoy romance novelists like Danielle Steel, Nora Roberts, and Barbara Delinksy. I use the app Goodreads to track my reading and find new reads each month. I’m also in the process of making my own reading journal. I am part of my library book club and enjoy the monthly book discussions. Last year my sister bought me a Kindle and I absolutely love it—I have all the books I want to read right at my fingertips. I do a lot of word searches and the puzzle syllacrostics, which involves finding syllables in a grid to find the answer for the definition. I also love diamond art.
Are you happy in life now?
I would say I am happy in life now. I have a family of my own, I get to go places I have never been to before. I do still wish I had it all from time to time: the house, the full-time career, and children. The ultimate happiness for me would be researchers finding a cure for CF in my lifetime.
Anything else you would like to share?
No matter how you look at CF, the disease hurts—it hurts families, it hurts you emotionally, and it hurts physically.
If you would like to be interviewed for “In The Spotlight,” please contact us at itsinterviews@usacfa.org. One of our Directors will reach out to coordinate an interview.