As a CF spouse, advocating for my CF partner with their CF care team means being a unified duo, asking for clarification if and when needed, doing research, staying up-to-date on major news and announcements, and ensuring that his medical needs are heard. This takes some preparation – we always come ready to doctor’s visits with our “list…

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As it pertains to my spouse with CF, we have found that protein-rich food items help to maintain and/ or gain weight – shakes, supplements, bars. It can be tricky to find items that are glucose-friendly (for his CFRD), but after some research and discussion with his CF care team, we have found some of these food items that help do the trick,…

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This past summer, I was able to travel to a new place with my spouse. It was a bucket list destination, and we ended up having a great time. I find it important in my own life to use the small windows of opportunity that I have to focus on spending time with the ones I love and also using this time to see and explore new things and places. …

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Particularly, I enjoy being by the water and on the beach. I love to see water in any way, shape, or form – the ocean, a lake, or even a harbor or bay. Water is very calming to me and allows me moments to feel a bit of stress relief and escape from my everyday life.

In 2025, I listened to my usual rotation of music and artists. This new year, I am hoping to add in some new music to my regular lineup – especially music that can help me decompress, wind down, and alleviate my stress (especially while driving)!

I am looking forward to continued heath for my loved ones, especially those dealing with diagnoses like CF. Upon some further reflection today, I am truly astonished by the amount of progress that has been made over time with CF treatments – even within the last year or two years alone. Who knows what this new year may have in store? I am…

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As a previous school director, health and safety was always my utmost priority. On top of trying to maintain the cleanest environment possible, it was important to have quality procedures and tools in place to do so, and to be open and communicative with any parents of students in my facility about any concerns they may have…

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Positive reinforcement is simple for me – it comes in the form of feedback, words, acknowledgement, and praise for keeping at it and doing the right thing. While not tangible, powerful words can stick in your memory and keep you motivated for quite some time (and some doctor’s appointments later!)

Nature feels beneficial to me as it can sometimes provide a break or quick escape from the rat race of everyday life, responsibilities, and tasks. We should enjoy it as much as we can and as often as we can, and try to get in touch with the many beautiful and different aspects of the nature that surrounds us.

While this particular topic isn’t applicable to me or my personal story, it really shines a light on how far research and medicine have come as it pertains to cystic fibrosis. Discussion and publication around CF is so important to continue and grow upon these types of conversations. Let’s make CF stand for Cure Found!

While this particular topic isn’t applicable to me or my personal story, it really shines a light on how far research and medicine have come as it pertains to cystic fibrosis. Let’s make CF stand for Cure Found!

It is incredibly eye-opening to read about the different situations of diagnosis of cystic fibrosis. From early to late to mis- diagnosis, these stories help to shine a light on cystic fibrosis awareness and studies.

The fall really affects my sinuses! As soon as the weather begins to cool and dry out here in NJ, I often wake up with a dried bloody nose or with a throat full of post-nasal drip. I try to combat these issues by keeping my home temperate and using over-the-counter sinus relief products. It’s tricky!

Grey’s Anatomy, Accused, Vanderpump Rules, and Squid Games are my current binge watching list!

I have not had a transplant, but I do like to think that regular exercise, hydration, healthy eating, and daily vitamins and supplements help to strengthen my immune system.

I unfortunately do not, but it is always on my mind. Perhaps I should start with setting aside an emergency kit with a mini electric generator. This always weighs on my mind during this time of the year, as hurricane season has kicked off, and having lived through a few (rare!) earthquakes in the tri-state area recently.

Yes, especially in the way of CF related diabetes. Diabetes equipment can be so costly, and so are vitamins, nutritional supplements, and protein food and drink items that help to combat weight loss (while diabetic). Finding out what organizations might be available to help lessen the cost of these items is so important, and can be so helpful.

RRR – Rest, Relaxation, Recovery! These simple things are so important. Taking the correct antibiotics and medicine is absolutely crucial, and sticking to a healthy and hydrating diet is really helpful, too.

Congratulations on starting Alyftrek! I hope it has been good to you throughout this year so far.

While I have not experienced myself, I would say it’s best to know all of the doctors and care teams available, accessible, and local to you, and to try to connect with other patients or read reviews of these doctors, centers, and teams, so you can understand if: a) you are receiving the best quality care you can access and b) if there…

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I love, love, LOVE Grey’s Anatomy and also loved that documentary. I will say, I feel like the Grey’s episodes that center around a CF patient are often scary, tumultuous, and bleak, so I honestly skip these episodes when streaming because they are somewhat triggering, and no one needs that negativity if they don’t want it!

However, the…

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Truly, I am unsure. But I am going to look into this a bit more and figure out where I stand on this topic.

I really am starting to take gripe with people telling me that I am so strong. While I know their intentions are good and they mean to uplift me when times get tough, what other choice do I have besides to be strong? I mean really, what else am I supposed to do besides keep on along and keep on fighting?

It’s not particularly enjoyable to have…

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2025 has had a few ups and a few downs, but I hope that it is finally balancing out and the second half the year is peaceful, enjoyable, and filled with a lot more ups than downs.

I would really like to go on a vacation, lol

Nebulizer masks are a great device that allow the mist to reach the lungs directly and more efficiently. I would say they are wonderful benefit to those that use them, especially those with severe respiratory issues or perhaps too young to sit still for an extended period of time when using a nebulizer. It is very important to keep…

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I wish lawmakers were more attentive and caring to the simple fact that access to proper healthcare is survival for all people with CF. It is sickening to think of how people with CF, as well as many other groups, slip down to the bottom of the list for funding and access. This is why CF advocacy is so crucial. Making voices heard, seeing…

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That’s wonderful news, congratulations to you! I hope Alyftrek therapy will provide consistent relief and help to minimize exacerbations and all of the hard and daunting symptoms of CF.

Sadly, I often keep going and ignore the signals my body tries to send me. However, I am aware of this, and understand it is not entirely healthy or best practice for myself and my physical and mental health, so I am actively trying to slow down and pay more attention to these signals. Doing so will only help me in the long run.

In my experiences as a CF caregiver, I have come across a great deal of wonderful nurses and nurse practitioners – as well as wonderful physical therapists, social workers, and physicians. However, there is one standout professional that I can recall – a social worker who went the extra mile for my spouse while hospitalized – checking…

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While I don’t have CF myself, I am a CF caregiver to my spouse, and I have tried my hardest to comfort them during their times of need while hospitalized. I do so with frequent (and safe!) visits, lots of calls and Facetimes in between, bringing comfort and snack items from home, and sometimes even a tasty meal. At times when I couldn’t…

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To me, having bodily autonomy means being fully informed of the details of my medical state. It also means being fully informed about the medications I may need to take, procedures I may have to experience, and how I may feel during and after taking medications or experiencing procedures. These details and information allow a patient to…

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My spouse and I will be celebrating Christmas from the 24th onward with scattered family gatherings and festivities, all through New Year’s Day. We are so excited! But as usual, these events will have to be carefully planned around his CF physical therapy treatments, and with all the holiday food and treats, special attention will have to…

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I am mostly satisfied with my insurance provider and package. However, I am still often dumbfounded by the insurance policies across our country in general, and sympathize so deeply for those without proper coverage(s) or easy access to insurance.

While I do not have CF myself, I can certainly understand how CF (or any medical condition) may feel defining to those with it, but I do not believe that being defined by CF has to be synonymous to being beaten down by it. Keep the faith, focus, and positivity as best as possible. 🙂

As a CF spouse and caregiver, I try to encourage my spouse to utilize their time during physical therapy to take care of any sit-down tasks such as medication organization, computer work, checklist management, schedule planning, etc. Physical therapy is also a great time to slow down for a bit for the day and to read or write. Hopefully,…

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While so many positive changes have been made, there is still a great deal of work to be done, and I am in agreeance with several of the points that you make in your column. I strongly believe in the importance of advocacy, and through powering together and using our voices, I hope to see a future where equal opportunities,…

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I truly could do a much better job at managing my mental health. I am hoping that if I begin to speak more to those around me instead of bottling everything up inside, I will be able to find help and advice to get me through my stress and more difficult times.

I am looking forward to seeing research lead to developments for those with CF nonsense mutations and potential modulator therapy.

I often am regretful that I do not live my life to the fullest. When thinking back, I realize that I can spend more time embracing every moment as it comes instead of worrying about what comes ten steps ahead of the present moment. It is an uphill battle to reframe the way I think, but I am trying!

While I do not have CF myself, I do wish that more people in my life understood the intricacies and nuances of CF, and all that it requires for both the CF patient and CF caregivers to live the best quality life possible. From medications, to therapies, to sanitizing and sterilizing, to time constraints, to nutrition and a proper diet……

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I have been a sidelines visitor as a CF caregiver to a nasal swabbing study for potential modulator therapy. It was very interesting, informative, and pretty intense! I look forward to attending more studies as a CF caregiver, and am hopeful that every CF patient in need will be matched with a helpful modulator.

I look forward to some live music, trips into the city, and getaways to the quieter beach and lakefront retreats. I don’t particularly feel like I am missing out on things with friends or family as long as I am able to find a way to enjoy my summer bucket list items at my own pace. It’s important to hydrate BEFORE becoming dehydrated -…

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Yes, many of my loved ones deal with multiple diagnoses. My spouse has CF, and on top of that, also has to deal with and manage having CF related diabetes. Additionally, his CF affects both his lungs and gastrointestinal system, so it can make something like eating a balanced, high-calorie, high-protein/ healthy fat/ low-to-no sugar diet a…

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I do not have CF myself, but my spouse does, and I am their CF caregiver. Needless to say, managing a household requires quite a bit of managing both of our routines, and we work closely together to ensure that all medication regimens, physical therapy and breathing treatments, and doctor’s appointments are held to daily and that our plans…

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While I have not yet experienced financial hardship as a CF caregiver (gratefully and thankfully), I have seen my spouse with CF navigate through turbulence and trials with insurance and supplemental insurance approvals, out-of-state CF coverages, and take on additional costs related to their CFRD (on things like glucose testing machines,…

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I feel like being a CF caregiver has made me more knowledgeable, patient, and eager to working towards a cure for CF. This means becoming more active in spreading awareness, fundraising, learning more about modulator therapies and clinical trials… anything that I am able to do to make CF instead stand for “Cure Found”.

While not a person with CF myself, I am a CF caretaker as well as a caretaker to others with different medical issues and ailments. I encourage them to be honest, even when it is hard, as being honest can yield the best results, sincerest support, and most efficient forms of help.

I will always take the opportunity for a nap. If my body is telling me that I need rest, then I listen.

I have recently have experienced some negative side effects to medicine – upset and sour stomach, excessive thirst, and overall malaise. I tried my best to counteract these negative side effects by staying hydrated, avoiding any food items that may upset my stomach further, and giving the medicine some time to work its course. I began to…

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