Ask the Health Leaders: CF Progression
There is a progressive nature to cystic fibrosis (CF), and it is a reality of living with CF despite recent advances in treatment. We asked our health leaders to share if they ever worry about CF progression:
Response from Meagan
We do worry about it. CF feels like such a sneaky, invisible disease sometimes. She seems so healthy and is so active, so it catches us by surprise when we find out her chest X-ray shows mucus build-up or her throat culture shows bacteria growth. The promise of new medications like Trikafta next year helps lessen our concerns, both for the present and the future, but they still come up from time to time.
We don’t let CF impact our planning at the moment, however, we do realize that these are future conversations we will need to have with Margo as she grows older and more independent.
Response from Ella
Knowing that my CF will progress, and already has significantly, does impact my plans for the future. I worry about being too sick in the coming years to live independently. I am an adventurous person at heart and I feel that CF beginning to confine me and halt my decision to move out of state away from family.
I also have a fear of being alone if and when I will have to go through a lung transplant and that dating and finding a significant other will be more difficult afterward.
Response from Katelyn
Yes, but I don’t worry about it as much as I used to before began taking Trikafta. Before Trikafta, I struggled a lot with anxiety and depression over the progression of my CF diagnosis. And I wasn't able to plan anything too far in the future. My health was deteriorating rapidly and I was seeing my CF frequently.
Once I was able to start taking Trikafta, we began to be able to plan a few things, which was very exciting. My husband I began planning moving back to my hometown because we had moved to be closer to my CF center. We also began making plans to visit his family in the Southwestern US. The privilege of being able to take Trikafta has given me the ability to plan again. We can plan for the future and have more confidence that it I will be healthy during that time to see those plans come to fruition.
Response from Jennifer
For most of my life, I refused to see a number over my head. When I was first diagnosed my doctor told my parents I’d be lucky to see 19. As I got older, 30 became the new 19.
I don’t know if it was a stubborn refusal to believe that or just naivety, but I never really believed it. I never saw myself not living a normal life. I married young and had two sons and tried not to think of the long term. I lived my life.
In other ways though, my disease’s progression did limit me. I didn’t complete school because I worried about the struggle of being able to balance home life, my children, my health, and my schooling. I worried how my hospitalizations would slow me down or my sick days would become harder to manage. So, I let my health limit me.
Now, I’ve reached 37 and passed both ages I was told I wouldn’t. Some days I can do it all.
Other days, like today, I worry about how much I can do when my health isn’t cooperating. I worry about the financial strain more consistently lately, as the sick days are adding up. I worry about what events I could miss in my kids’ lives.
I worry about being available for loved ones, when I’m struggling.
Some days it’s just a mindset and other days I need to take a break, slow down, and remind myself to prioritize my health if I want to be around to see the big moments. Those are the days I struggle with where I’m at with my health.
Response from Janeil
Everyday. Of. My. Life. At any given time, CF progression is a thought that is never far off from my mind. It’s had a significant impact on the decisions I have made like getting married, having a family, and how I make an income. CF progression is also a huge motivator for me in terms of being compliant everyday to CF treatments and appointments as well. You put in the daily work in hopes that it makes an overall difference in the future.
For a long time, progression was some inevitable force that I couldn’t fight off. The bright side is with Highly Effect Modulator Therapy (HEMT) like Trikafta, CF progression has less of a hold on my future. Stability is a new factor in planning for the future that I am enjoying, too!
Response from Moriah
Yes, in fact for a long time I shied away from "serious" romantic relationships because I thought I was protecting both myself and my potential future partner. On one hand, I was scared of rejection due to the complications and strain my disease could pose on a relationship, and I also felt guilty putting someone whom I presumably loved through all of the burdens of what CF entails. I have essentially resigned myself to not having children because I don't want to put a child through the stress of having a sick mother, or over-burden myself by having to care for a child while I, myself, am unwell. I can't help but think that it's unfair to put the burdens of CF - my burdens - on another person, whether they are willing (like a spouse) or unwilling (a child).
In the last few years - after Trikafta has been released and I've learned more about the transplant process and success stories - I've begun to alter my way of thinking. I am married now, knowing that it IS realistically possible to live out a relatively long life with CF. I've also been reading some of the articles on Cystic-Fibrosis.com about motherhood and parenting and I see that there are CF patients out there who are mothers and are doing very well.
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