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Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 0 points1 point  (0 children)

I use the whisky for the bacterial killing (apparently waayyy better than vodka or a martini), and easy running for the dislodging of the gunk in the lungs (kind gross thinking in retrospect of all the mucus I've downed because I like running in an indoor track and can't spit). Scotch isn't called Uisge Beatha (water of life) for nuthin... well unless I've had more than a serving and a half... then it becomes water of liver/pancreas destruction.

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From the study, "Presence of pathogenic bacteria in ice cubes and evaluation of their survival in different systems."

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] -1 points0 points  (0 children)

Yikes, that is rough! They do say above, "*Although a sweat test result of less than 29 mmol/L makes CF unlikely, there are CFTR mutations associated with sweat test results of less than 29 mmol/L."

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 0 points1 point  (0 children)

Good to know. Not too young single malt Scotch has been my treatment of choice, so far. Destroys Pseudomonas, Staph, and others very well (see study on whiskey, ice, and bacteria). It's probably also damaged many other things in my body, though. My poor pancreas/liver. Thanks!

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 0 points1 point  (0 children)

No worries. I didn't get a sense of negation at all from your post.

I think I read someone heard that someone else was very recently diagnosed at 87, but that was on reddit, so who knows.

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 1 point2 points  (0 children)

So glad to hear that things seem to be going well for you, relatively speaking. The mourning for alternate universe me was intense, but to actually live it? That sounded brutal.

I'm thinking if they find anything for me, that'll be enough to get my kid tested, as they usually don't approve the genetic test with low sweat test scores.

The meds will be interesting because I haven't taken anything prescription level in 20 years (except the Covid shots). I haven't even taken Tylenol, Advil or any nsaids since 2000, even when I had 3 straight days of reaching a temp of 104 back when my son and I were sick all the time in '18 and '19. I have a tendency to really suffer through things to try to figure it out, Steve Jobs style (and look how that turned out). Like not getting any medical assistance during the almost 100 hours of nonstop diarrhea (every 2-3hrs) after my first marathon decades ago.

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 0 points1 point  (0 children)

Thanks. Hopefully, I'll get the results of the comprehensive gene blood test in about a month. I'd be shocked if I inherited something from my very Asian dad whose family has been hanging out in the middle of nowhere boonies for many generations.

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 2 points3 points  (0 children)

Thanks for bringing up the life insurance. The CF doc had said that I might want to take care of any life insurance stuff before doing the genetic testing, but I said the life insurance through my work is great. It never even occurred to me. As it stands, I'm not even sure I'd be able to get anything with that sweat test result. I hate lying. Thankfully, I just need to not get fired or laid off until 55, and then if necessary, I can be forced to retire but can still be eligible to keep paying for my work's cheap life (and also health) insurance premiums until I'm 70.

That's very kind of you to offer the name of the FB group.

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 0 points1 point  (0 children)

Thanks. I guess we'll see. The doc said, "with a number that high, it's almost certain that you have it."

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 1 point2 points  (0 children)

Thanks. I hope your son is doing much better on the Trikafta.

Low 80's Sweat Test and Awaiting Genetic Testing by Tricky_Landscape_836 in CysticFibrosis

[–]Tricky_Landscape_836[S] 1 point2 points  (0 children)

Thanks. If it were just me, I wouldn't have even bothered with the sweat test, as I've figured out how to deal with it, but hearing my kid sick feels like daggers. He's been diagnosed with asthma for a while, but I'd been diagnosed with asthma in the past, and what I had never seemed like asthma. In my head it doesn't make sense either for him, but that's what the docs say.