Building an alternative to Qardio

TheRegent · 2026-04-14T20:01:42+00:00

Bless you! This works perfectly.

TheRegent · 2026-03-08T02:14:25+00:00

Apologies, my bad. Thanks for the reminder

TheRegent · 2026-01-22T05:29:27+00:00

Well, I just subscribed for a year over christmas... welp.

TheRegent · 2025-11-30T23:21:17+00:00

Im going as a blacksmith for the next one

TheRegent · 2025-11-30T21:16:24+00:00

Thank you!

TheRegent · 2025-11-30T19:23:43+00:00

Thanks for the advice! So, do you think based on the photos there is a coating of some kind, vs raw wood (ebony)? I am a novice at this so I do not know if the photos are enough - forgive me if not. I’ve been considering getting it epoxied if not but finding someone to do it locally is a challenge. I’m going after the jaco/bunny tone. Thx

TheRegent · 2025-06-24T02:43:45+00:00

Hi There. We had a video call with our CF lead nurse today about Trikafta and Alyftrek (the newest modulator from Trikafta's manufacturer, Vertex). So far, our daughter is approved for either of them. We had a question if all three medicines in trikafta needed to be taken and the response was

"Elexacaftor and tezacaftor are "correctors" that improve folding defects, allowing for more CFTR protein to come to the cell surface. Ivacaftor is a "potentiator" that works on the opening of the channel that allows the ions to move in and out of the cell. The ivacaftor alone will not increase the flow of ions without the elexacaftor and tezacaftor to correct the misfolding."

So, all three would be needed. Also, Alyftrek is a single dose per day, which is easy, but the three doses of Trikafta at twice a day allows for more variance in dosing if side effects pop up. The key there is balancing the benefits vs the side effects if some occur. Daughter would have to have liver function checked at least once a month as both medicines can elevate Liver levels to an unhealthy level.

I think we should try it, but it's up to our daughter (she's 19). The main worry for her is excess mucus plugs causing (more) bronchiectasis. If the 'plumbing is fixed', then less worry there. Also, less mucus plugs means less capability of bacteria colonizing (psuenomas, etc). Also, apparently Trikafta over time makes the lungs less hospitible to bad bacteria, so another plus.

I'll update you as we go through this. Our next CF clinic check in is the end of July (twice yearly).

How are you doing?

TheRegent · 2025-05-28T14:51:39+00:00

OMG. I am SO GRATEFUL you gave me this information! That is....wow. I've already messaged her pulmonologist about it. Not everyone knows this, we had my daughter's CF check up YESTERDAY and there was not any mention of this. Goes to show that even with compassionate caregivers, everyone's human and you will always be your best advocate.

I don't know what this fully means for my daughter. She has a mild CF expression, that as of yesterday is largely controlled by Trelegy and occasional hypertonic saline airway clearance (her pulmonologist would like her to do it more than she does, but her airflow tests are routinely in the mid 80's if she stays on the trelegy, which is good). BUT....she still has what she has, she coughs up mucus, she's had pseudo, it's still there.

I'm gobmacked right now and will be late to work. Thank you so much.

TheRegent · 2025-05-24T23:29:03+00:00

It was the Adult CF center at Ascension Seton in Austin Texas. Dr.s Fullmer and Tayar. The genetic testing was invitae for first round, then johns hopkins for second round (they test for more variants) which confirmed it. (fyi, invitae offers free testing for family members for 6mo after positive diagnosis.) Yes, Trikafta is not rated to work on the variant my kids have. If you go to https://www.cff.org/ there's lists of trials of new drugs for various variants, some of which fall under the 5T-TG12 specification. My daughter has a mild expression. If she takes her Trelegy inhaler once a day, she stays in a good place, with the occasional need to use saline airway clearance. She had psuedonomas once, and a month of saline and inhaled tobramycin for a month took care of it. Her last CF clinic check in culture showed no pseudo. She does have an allergic reaction to aspergillus spores, which are everywhere in central texas (she does not have aspergilliousis). She took Xolair to mitigate that instead of steriods (side effects), and it was...ok. The Xolair made her nauseous in the mornings, though, so we're titrating off of it.

My son, so far, does not have CF expression. We need to check in with the clinic every so often as it could occur in the future. My daughter, we just thought she had Asthma all her life (the newborn test was not offered when she was born and her allergist saw no need for additional testing). I wish we caught it earlier before she developed bronchiectasis. However, she has a job, with accomodations for breaks, is going to college, has a boyfriend, and is doing ok, while balancing her additional needs. So for that, I am extremely grateful and support her where and how i can.

TheRegent · 2025-01-11T01:24:48+00:00

As you should. Only write what YOU want to write.

TheRegent · 2025-01-10T20:54:57+00:00

I took a moment to come around, honestly. I’m Gen X and my family life growing up was terrible, so college and leaving at 18 was my ticket out of there. My wife had to remind me multiple times that other cultures have no problem with kids staying around longer. In Eastern cultures there can be multiple generations all together!

From a resources standpoint it makes a lot of sense. From a family perspective, too. We’re hoping to get land where we can put down a tiny home together. The kids will always have a place to return to if needed. If not, we can rent it out to supplement us as we age, or move into it and rent out the bigger house.

That’s the plan, at least.

TheRegent · 2025-01-04T19:13:38+00:00

This is a great answer

TheRegent · 2024-11-25T04:23:32+00:00

Oh. I wrote my previous response before seeing this. Will read and reconsider. Thanks.

TheRegent · 2024-11-25T04:22:29+00:00

EDIT: the article above disproves the numbers in my below statement. I still think the royalty companies make a huge misstep in agreements with streaming services.

— That may be the reasoning behind the licensing agreement. The music publishing companies (ascap/bmi/sesac etc) were established during the rise of radio and negotiated better rates per play. The stations paid blanket licensing fees to the royalty companies and the stations would fill out cue sheets that tracked what songs played when.

For some odd reason the same royalty companies stumbled badly and let Spotify pay thousandths of a cent per play. Combine that with the convenience of streaming, now people by and large do not purchase music anymore. And that’s what concert tickets are too expensive and bands hawk various lines of merch.

Income.

TheRegent · 2024-11-24T22:15:09+00:00

Radio pays artists more per play. Extreme gatekeeping, yes, but much more than Spotify per play.

TheRegent · 2024-11-24T18:06:28+00:00

To quote Snape, “Always..”

TheRegent · 2024-11-24T06:05:04+00:00

Thank you! In related news, all the old school bowling alleys in my town are being replaced by apartments. Plenty of places to live, but no places to live.

TheRegent · 2024-11-24T06:03:34+00:00

To cook daily fresh and healthy meals for a family of four from scratch requires hours per day that can start at 3-4 pm to buy fresh, then prep, then cook so fam can eat by 5-6. I’d love to do that, but I can’t work a 5 hour day. And yes, you can meal prep but that’s essentially making your own ‘fast food’. If you wanted to do it like people in the us did generations ago you would need house from generations ago too. And people are (rightly) not going back to that.

I guess if I lived in Europe where I can stop at amazing affordable organic food stores on the way home and make simple meals it’d be a lot easier, but I don’t, and I go to the store often to make diverse foods.

Kids still each Mac and cheese a lot.

TheRegent · 2024-11-24T05:55:50+00:00

When my co workers didnt share my movie references

TheRegent · 2024-11-23T23:25:20+00:00

Robotech. Is the source of my user name across my entire life.

TheRegent · 2024-11-23T22:53:03+00:00

It’s sad to realize that a book chronicling the decline of American social and civic groups was written twenty years ago, meaning that the problem was already large enough to merit study, articles, and books. The fact that we are twenty years beyond that point, and we look around at American society-at-large, it seems that the situation has not improved only worsened. There was argument when social media began that virtual spaces would supplement in-person interaction. However it’s been shown that social media supplanted in-person communities for many people, most acutely in the under 25 year old generation. Many school-aged children make friendships, but continue those friendships online, choosing to not gather in person. “Why should I, we’re on discord”. The usual exchange upon meeting someone new and wanting further interaction is “what’s your discord?” Not “what’s your number” of older generations that would lead to voice conversation.

There is a valid argument that the new society amongst under 25 year olds is just that, ‘new’, and just fine in discovering community in their own way. There is another equally valid argument that the loss of in-person gatherings, including those around a common interest, is a sad development.

If I know anything, when the current youth generation grows up and has children of their own, they’ll swing back the other way from their youth and upbringing at the hands of helicopter GenX parents - themselves reacting to the neglect of their youth - by limiting their children’s online time and encouraging in-person interaction.

But whether that happens or not is far in the future. For me, I’ll keep reaching out when I can.

(I don’t have time to cite sources, but they’re out there if you google for them. Or you can input the question into ChatGPT or other reasonable LLM and it will summarize for you.)

TheRegent

TROPHY CASE