• Rusty replied to the topic Clinical research, breakthroughs, and new horizons… in the forum CF Science and Research 9 months, 1 week ago

    Where do I begin? As a 64 year old person with CF I have seen many treatment options change, some good and some bad. The bad would be many of the antibiotics that used to be effective no longer are. The good, indeed the best, have been the CFTR modulators. I used to work in a major medical college hospital that is also a CFF center and as such I was involved in several clinical trials. I had the second gene transplant in the US which “cured” a small portion of my nasal passage. I was slated to be first but some sinus issues precluded that from happening as the symptoms could mask a potential side effect from the modified cold virus that was being used as the vector for the normal genes being transplanted. Unfortunately the gene transplants did not pan out but maybe somewhere down the road? I was also in all three phases of clinical trials for Kalydeco. It was all double blind but in very short order I knew beyond a doubt that I was receiving the real drug. I thought Kalydeco was the ultimate breakthrough and that I would never see anything better. Then along comes Trikafta and I am still amazed at how much improvement that has provided over and above Kalydeco. Trikafta got early FDA approval but I was still enrolled in clinical trials for it as they wanted to gather more data and actually complete the trials but covid put an end to that.
    Almost forgot; the way the IV antibiotics are administered has changed for the better as well. They used to use short IV catheters in the arm or hand that had a tendency to infiltrate rather quickly. If you had one that lasted three of four days before it had to be pulled and a new one inserted you felt very lucky.
    Now with the longer cath’s the many painful pokes are a thing of the past. Also, I can have a pump at home and administer my own antibiotics without having to be an inpatient. A vast improvement!
    I’m sure I could think of more but that is enough history for today.

    • Rusty, I think it’s just so amazing you are living and thriving at 64 with CF. I interviewed one of our forum friends, Judy Moreland, a couple of months ago about her life with CF in her 70’s, and aimed to put it in a column, but am yet to do so (mostly busy weeks and distractive topics. But I do plan to soon!) So this is just amazing, refreshing, and (dare I say it? The word I hate so much?) inspiring.

      Wow, what a life you’ve led. Reading this made me think of the documentary that came out in the 2000’s called “65_RedRoses”. I hadn’t really seen it in recent years and my daughters asked if we could watch it together. We ended up doing so recently and they kept commenting on how if those girls [featured in the film] lived now, perhaps they’d still be alive. And this wasn’t that long ago! Yet, already medicine and IV therapy and everything seems so much more evolved. So much of life is timing. Grateful you’re still here to share with us!

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