LIVING WITH CYSTIC FIBROSIS: MY SETBACK AND THE REALITIES OF CHRONIC ILLNESS
Trikafta (Note: In Germany, Trikafta is marketed as “Kaftrio”) has been a game-changer for me as someone living with cystic fibrosis. The results have been miraculous, improving my lung function, reducing coughing and chest pain, and giving me more energy and stamina. While these may seem like small victories, they are significant triumphs for someone living with CF (Cystic Fibrosis is called “Mukoviszidose” in Germany).
You can read more about my Trikafta journey in my previous story:
But even with innovative treatments like Trikafta, living with a chronic illness like cystic fibrosis can be overwhelming and exhausting. It requires constant attention and management, and there are always moments of uncertainty and fear. I learned this firsthand in 2022 when I ended up in the hospital with a high fever and congested lungs. I was worried it was a sign of a lung infection, and it turns out I was right.
I have to admit, I was really taken aback by this. I had been feeling so much better since starting Trikafta, and I guess I had started to take my improved health for granted. This hospital stay was a wake-up call for me, reminding me that even though I’m on Trikafta, I still have a chronic illness and setbacks are always a possibility.
The doctors prescribed me intravenous antibiotic therapy to treat the infection. If you’re not familiar with it, intravenous antibiotic therapy is a type of treatment that’s used for severe lung infections in people with cystic fibrosis. It’s usually reserved for infections caused by a type of bacteria called Pseudomonas aeruginosa. Some CF patients need to undergo this type of treatment on a regular basis to help prevent further infections. The therapy involves getting a combination of two antibiotics through an IV. It’s usually given for a period of 14 days. It’s not the most pleasant experience, but it’s definitely worth it to get my health back on track.
Thankfully, I was able to recover from the infection and the intravenous antibiotic treatment was successful in getting my health back on track. I’m grateful for the care and support I received from my doctors and nurses during that time, and I’m happy to say that I’m feeling much better now.
Even though I’m no longer in the hospital, I know that setbacks are always a possibility with a chronic illness like cystic fibrosis. That’s why I’m continuing to be vigilant about managing my condition and doing everything I can to stay healthy. I know that my improved health is not a given, and I’m determined to do everything I can to maintain it.
But living with a chronic illness is not just about managing setbacks and challenges. It’s also about finding ways to live a full and meaningful life despite the limitations that come with it. That’s why I’m determined to continue to live my life to the fullest and find joy in the little things. I’m a testament to the strength and resilience that is possible when living with a chronic illness.
As I look towards the future, I am filled with hope and excitement for all that is yet to come. I am grateful for the significant improvements that Trikafta has brought to my life and for the hope it has given me for a brighter future. While I know that there will always be challenges and setbacks, I am optimistic about the future and am determined to face them head on.
So, if you’re someone living with a chronic illness like cystic fibrosis, know that you are not alone. It can be a difficult and overwhelming journey at times, but it’s also a journey of strength and resilience. Don’t let setbacks define you and don’t be afraid to find joy and meaning in your life despite the challenges. You are stronger and more capable than you think, and there is hope for a brighter future ahead.
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