Will it get any better? This was a question I found myself repeating in my head as I got older, particularly during my teenage years. I was doing 10 nebulizers a day with at least two hospitalizations a year for either infections or surgeries. It was a scary notion to think I was already doing so much and yet my cystic fibrosis was a “progressive and terminal” disease. I often found myself thinking: Will my medical problems just keep piling up?' Although I knew I could handle it and I still could enjoy every bit of life, the notion it would never get easier really upset me. However, as the years passed, I saw some shifts.
Yes, overall CF is progressive and gets worse with time, but there are many aspects of CF other than my lungs. In fact, some aspects did get better. I was born 12 weeks early with a severe bowel obstruction with gangrene in my intestines. I had many bowel obstructions as a child and some years they put me in the hospital more often than lung infections did. However, now 34 years old, I haven't been hospitalized for a bowel obstruction in more than a decade! Why? I'm not completely sure. I have eliminated some foods, I also now take a probiotic, and I'm on Symdeko®. Any one of those things could have helped with my gastrointestinal issues. Whatever the reason, I'm thankful for the change.
As a child I had horrible allergies (to the outdoors, pets, fragrances) too. Now, my allergies are more minimal, and I don't take any daily medication for them. I also don't struggle as much with weight. I had a G-tube for 17 years (ages 12 to 30). It was one of my biggest challenges growing up, but now I don't have a G-tube and I can maintain my weight with a bit of work. This could be due to development, age, or Symdeko®. Whatever it is, I'm glad it has released some of the pressure I feel about the need to overeat (or eat when I'm not hungry). I still eat way more than the average person, but I don't have to push myself as much -- meaning I enjoy food even more!
I'm beyond happy some of my medical issues have become less relevant as I have aged, mainly because I have new issues I need to focus on.
When I was younger, I would occasionally have “flare-ups” where I got red spots, fevers, fatigue, and my joints would hurt extremely badly. My doctors always believed it was some type of CF-related arthritis. However, as I got older it became more of an issue. Now I can get flare-ups every month or so. This has become a very big issue for me because it interferes with mobility and daily life. I see it like any other CF obstacle: just a challenge for me to conquer.
And then of course my lungs and antibiotic resistance. Going from 65 percent lung function in high school to 57 percent in college, to 48 percent now … it's a steady, gradual decline. I'm thankful that the new medications help slow it down.
It's interesting to see how medication like Symdeko® has really helped me in many ways, but yet prolonged exposure to some medications make life tougher. For example, the use of antibiotics (which are necessary) can lead to fewer options for antibiotic treatment. I'm unable to take anything in the Keflex (cephalexin), Levaquin (levofloxacin), and Bactrim (sulfamethoxazole and trimethoprim) families, and I'm also starting to become resistant to TOBI® (tobramycin) and Cayston® (aztreonam). So, finding the right balance can be interesting.
We may not know what causes some of our secondary conditions, helps them, or makes them worse, but I just take one step at a time.
CF is like a hurdle race. You are running along in life and up pops another obstacle. You figure out how to overcome that hurdle, and here comes another.
But's it nice to know some of those hurdles may get better with time, too. Having some pressure taken off helps me to focus on my current medical issues.
So yes, although CF is a “progressive and terminal” disease by definition, it's much more complicated than that. Never in my dreams as a 15-year-old did I think any of my medical issues would get better. I just assumed I'd add more and more to my plate every year. While I don't know exactly what's helping some of these issues, I know largely it's my medication and research! I'm thankful for all the research in my lifetime that has allowed me to be stable at the age of 34. A wonderful 34 years so far, hurdle race maybe, but perfect just the way it is.
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