Quick Update

Since I last wrote in January, I have been dealing with the good/bad changes in practically every single part of my body/life due to taking Trikafta. I have had some lung improvement, but unfortunately, some awful GI and Mental side effects.

I won’t go into them right now, because things seem to be changing constantly. I have also been on the antibiotic Doxycycline for the suppression of MRSA in my lungs, although I continue to grow it in high levels. The one difference is that the Trikafta makes the mucus in my lungs thinner, so when I do get sick, I am not drowning in fluids, and not having cough up ¼-½ cup of fluids every morning.

I have started exercising to help rebuild all the strength I lost in the 63 days spent inpatient last year and the constant infections in between, and the past 5-10 years of progressively getting sicker and never having time to recover in between.

The side effects are pretty intensive, but how do you decide which is better? I choose the side that puts me in the hospital less, because that is a horrible way to live. But I still spend most of my day attending to other CF issues (Because cystic fibrosis affects not only the Lungs, but the G.I. system and all major organs. I Have chronic issues in my liver, kidneys, intestines, stomach, blood clots, have sinus disease, chronic pancreatitis, and CF related Diabetes, just to name the bigger physical issues that I have. Add in severe depression and anxiety/panic disorder, and I still have a full plate. But I am thankful for whatever improvements I am able to get through the many types of therapies I am taking.

But just before I was able to celebrate finishing my third sinus surgery, starting to get stronger, COVID-19 happened and once again, I am hibernating and trying to avoid a virus that, should I get it, puts me in the high-risk category.

So now as I spend a lot of my time working on my health and trying to improve my life in as many small ways as possible, I hope to emerge out of this with at least a better grip on life, a stronger sense of self, in some ways to enjoy perhaps the extra five years I might have gained by starting this medication.

ToniV in progress

I am a work in progress. I want to make my days, the rest of my life, mean something.

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