Cystic fibrosis is unpredictable and I've found that some of the complications aren't as progressive as the disease.
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I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”
In January, I underwent successful phage therapy -- an experimental treatment in which viruses are used to kill difficult-to-treat bacteria. To get a better sense of the future of this potential treatment option for other people with CF, I chatted with the head of the Infection Research Initiative at the Cystic Fibrosis Foundation.
Although I did my homework before having surgery to remove part of my liver, the process presented me with surprises and challenges. Here's what I learned from it.
Although cystic fibrosis is often considered to be primarily a lung disease, it is actually so much more.
I have had two collapsed lungs in three years. Here's what I learned.
As a medical professional who has cystic fibrosis, I have experienced both sides of pain management and chafed under the new rules for prescribing pain medications brought about by a nationwide opioid crisis. Despite having to add yet another doctor to my long list of providers, a trip to a pain management specialist wasn't as bad as I thought.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
Daily CF treatments take time, patience and persistence. But the benefits of managing your treatment plan outweigh the drawbacks so that you can achieve more of your personal goals.
As someone with cystic fibrosis, Lynch Syndrome, and CF-related diabetes, preparing for a colonoscopy can be a challenge. Fortunately, I've become very well-versed in how colonoscopies work and how to prepare for them over the past 10 years.