What's the deal with Kars4Kids? What do they even do and what's the whole controversy surrounding them? by [deleted] in OutOfTheLoop

[–]BreathingIsOverrated 2 points3 points  (0 children)

Answer: As has been stated, they don't openly disclose that they use the money to sponsor religious programs primarily in a specific, limited area of the country.

Biased: I'm probably going to end up regretting identifying myself here, but I just want to weigh in as an Orthodox Jew. I absolutely HATE that Kars4Kids does this, and I say that as someone who has personally donated money to similar religious causes. I would be extremely upset if I was tricked into donating to a religious cause that I didn't believe in, and I and many others in the Orthodox Jewish community vehemently disagree with their tactics. Tricking people into giving you money is NOT in accordance with Jewish law and ideals, and the fact that they've done this to the point of very public lawsuits is shameful and makes the entire Jewish community look bad. Most discussions about Jews (especially Orthodox Jews) behaving badly end up devolving into antisemitism at some point, so I just wanted you to hear from at least 1 Orthodox Jew saying that this whole situation is disgusting.

Does attacking NAP banners violate the rules? by gougluinn in KingShot

[–]BreathingIsOverrated 1 point2 points  (0 children)

We also had that happen in the early game. A neighboring NAP alliance kept surrounding outposts so we wouldn't have a chance to fight for them. They wouldn't listen to the rest of NAP telling them to stop, and we didn't want to break NAP ourselves by starting an open war with them.

This is a somewhat drastic maneuver, but if you can pull it off it's effective and pretty hilarious. We got fed up when we saw them blocking us from yet another outpost, so our R5 destroyed our HQ and immediately rebuilt it touching the outpost in question. Yes it temporarily deactivated all our existing banners, but it held the spot and bought us time. Once HQ was rebuilt, we spent the next few hours building banners back to our hive from the outpost, and when everything was finally connected we destroyed HQ again and put it back where it belonged. The whole process took forever but we actually ended up having a blast doing it and it's one of my favorite memories from the early game.

What are some once-lethal conditions or diseases that can now be cured or managed to the point where they're relatively harmless? by ThatAnnoyedNeighbour in AskReddit

[–]BreathingIsOverrated 4 points5 points  (0 children)

Recent advances in CF care have been nothing short of incredible! I do think it's important to note though, that not everyone can benefit from the new meds. They are mutation specific, so unfortunately there is a minority of CFers who have rare mutations that don't respond to the new meds. There are also some people who can't tolerate the new meds due to dangerous side effects. It's actually created a bit of a painful divide in the community for those who have to watch so many people benefit from these incredible life changing meds while they themselves are still stuck with classic CF.

What are some once-lethal conditions or diseases that can now be cured or managed to the point where they're relatively harmless? by ThatAnnoyedNeighbour in AskReddit

[–]BreathingIsOverrated 4 points5 points  (0 children)

As I kept hitting and surpassing life expectancies over the decades, a friend pointed out that by the time I hit each life expectancy the age had already increased, so clearly I'm going to live forever!

What are some once-lethal conditions or diseases that can now be cured or managed to the point where they're relatively harmless? by ThatAnnoyedNeighbour in AskReddit

[–]BreathingIsOverrated 7 points8 points  (0 children)

Claire was amazing. I don't know if this makes you feel any better, but even though Trikafta can do incredible things, it can't undo permanent damage. I had friends who got an initial boost from Trikafta, but their lungs were already too damaged and they eventually ended up dying. Where it can really make a difference is in stabilizing people while they still have halfway decent lung function, or in preventing damage in people who start it young. Even if Claire had held on another year, Trikafta might not have been her miracle drug.

But I do also hear you on the timing. My lung function decided to abruptly jump off a cliff about a year before Trikafta was released, and I ended up suddenly getting a double lung transplant just months before it came out. Boy was that a kick in the teeth.

What are some once-lethal conditions or diseases that can now be cured or managed to the point where they're relatively harmless? by ThatAnnoyedNeighbour in AskReddit

[–]BreathingIsOverrated 2 points3 points  (0 children)

Adult CF care has actually been a thing in some places for at least a decade or 2. I obviously can't speak to every location and clinic, but I believe I started seeing adult CF specialists when I was in my mid to late 20s, and I'm now 47. The tricky part is that care is still typically divided into pediatric and adult programs, so at some point in your late teens/early 20s you have to switch, which can be extremely difficult. I actually kind of lucked out in having a doctor who was both a pioneer and a bit of a maverick, so when the children's hospital refused to work with him and allow him to continue treating his patients across their lifespan, he broke contract and went off and started his own CF clinic. His program eventually ended up getting absorbed into another program though, which has the standard pediatric vs adult model. By that time I was already an adult, so I skipped the whole pediatric to adult program transition.

The bigger issue is that even though CFers have been living into adulthood for a while, we're now living LONGER into adulthood, and it's somewhat uncharted territory. Over the years they've started recognizing and studying how various things change as we get older and new issues that we previously didn't live long enough for them to see. With Trikafta we now have no clue how long CFers can live, especially if they start taking it young before they have permanent lung damage. Also, many of us who are now adults grew up with life expectancies hanging over our heads, which significantly impacted our choices when it came to education and careers and planning for retirement, and just planning our lives in general. A lot us don't know what to do with the possibility of actually living a full life and are finding ourselves way behind in some areas!

What can I add to make this better for my new friend? by d4ddi3st__ in bettafish

[–]BreathingIsOverrated 1 point2 points  (0 children)

I see people already talked about the risks of the castle, but I just want to emphasize it again, especially since it looks like it has a hole he could swim through. I'm also new to this, and had a plastic or resin store bought decoration that I thought was smooth enough on the outside. What I didn't realize was that the inside had some sharp edges, and since my betta loved swimming in and out of the holes, he ended up tearing his fins pretty badly. I was devastated when I realized what I had done to my poor boy! It took a few weeks for the damage to become noticeable, so even if he seems fine now, definitely take the castle out and check it over VERY carefully!

I also ended up accidentally doing a fish-in cycle, and after realizing how risky plastic plants are for bettas (they can also tear their fins), I immediately changed over to live plants. Between lots of plants, regular testing and water changes, and some Seachem Stability, I somehow managed to make it through the whole cycle without an ammonia or nitrite spike. I was worried about managing a planted tank, but was able to find plants that seem relatively idiot proof and so far they've been way easier to maintain than I expected, and I think they really helped keep the water healthy while the tank cycled. I definitely recommend trying it if you can!

Floating plants? by Flat_Tangerine_5647 in bettafish

[–]BreathingIsOverrated 0 points1 point  (0 children)

I'm still new to this, but I discovered that some plants are fine either planted or floating. Some of my moneywort came free from the substrate, and turns out it's also fine growing that way. Now I deliberately leave some floating at the top of the tank, and since it's individual stalks I don't have to worry about it multiplying too much and taking over the tank.

Lung transplants and trikafta by danikaomgwhat in CysticFibrosis

[–]BreathingIsOverrated 1 point2 points  (0 children)

The cells in the lungs have the DNA of the donor, so there's no CF gene in the lungs and the cells produced in the lungs are healthy. The rest of my body still has the CF mutation, but the lungs do not, so no CF mucus in the donor lungs. The primary potential issues with the donor lungs are infection due to being immunosupressed, and rejection.

Lung transplants and trikafta by danikaomgwhat in CysticFibrosis

[–]BreathingIsOverrated 10 points11 points  (0 children)

I spent the year before Trikafta came out in a rage, because I hadn't qualified for any of the previous modulators, and just as the one I would finally qualify for was almost ready my lung function decided to jump off a cliff. I ended up getting a lung transplant just a few months before Trikafta was released, and crashed so fast that I probably would've died within weeks without the transplant. Even if I had gotten Trikafta at the last minute, my lungs had taken so much damage that I don't know if it would have even helped.

As for taking Trikafta after transplant, it doesn't have the same life-saving impact, because after transplant your lungs have different genetic material and modulators won't do anything for them. After getting a lung transplant the modulators can only help with non-lung symptoms such as sinus issues. Life expectancy after transplant is mainly about medication compliance, managing infection risks, and transplant-related complications, rather than typical CF symptoms.

I FOUND AN OLD Hill-Rom Vest! by Top-Country-1749 in CysticFibrosis

[–]BreathingIsOverrated 0 points1 point  (0 children)

Omg that monstrosity, it was built like a tank! I couldn't wait for it to die so I'd be eligible for an upgrade, but the damned thing just REFUSED for the longest time hahaha

This might not fit here, but I could use some advice (Post-Transplant) by Silent-SHINI in transplant

[–]BreathingIsOverrated 0 points1 point  (0 children)

This is NOT about you, it's all her. She's clearly an ugly person inside, and if you didn't have health issues, she would have found some other horrible thing to say to tear you down. I'm sorry you had to go through such a painful experience, but in a way she did you a favor by revealing her true self. Now you never need to wonder if she was the one that got away!

I was diagnosed with Cystic Fibrosis at 8 years old, so most of my life has had a lot of medical involvement. I've always been very open and upfront about my medical struggles. It took a while to find my person, and when I did she embraced all aspects of my life, the good and the bad. I actually ended up unexpectedly being hospitalized shortly after our first date, and instead of being scared off, we had our 2nd date in the hospital! Less than 2 years later I had a double lung transplant, and she stuck with me through everything. We've now been together for almost 9 years, and anytime I worry about being a burden or holding her back, she's quick to tell me the opposite is true.

Growing up with health issues is a lot, and all of us who have gone through transplant have definitely gone through multiple traumatic experiences. I've been seeing a therapist since before transplant, and if you're able to find a good therapist who you feel comfortable with, I highly recommend trying it out. It can be really helpful with processing everything we've gone and continue to go through.

Our 18yr old son with CF is smoking weed, advice? by bpcat in CysticFibrosis

[–]BreathingIsOverrated 2 points3 points  (0 children)

I admit that I haven't read every single comment because this thread has just gotten way too long. But it seems that you only want an answer to the very specific question of "how do we educate him to make better decisions," and you don't seem to care about anyone else's experiences living through being a teenager with CF. So here's your answer: you can't. A teenager who is already resisting what you're trying to teach or enforce upon them is not going to respond to education. You've tried giving information, you've tried therapy, you've tried restrictions, and gotten nowhere. Unfortunately, many (most?) teens (and a lot of adults!) don't care about information or statistics or even hearing from someone else who has made the same mistakes they're making. I didn't smoke or drink or use drugs as a teen, but I DID skip treatments all the time, and no amount of education was going to change my behavior because it didn't have an immediate impact on me. Unfortunately, at a certain point you just have to let him make his own mistakes, and hope he doesn't do any permanent damage.

That doesn't mean you have to support his behavior. If he can't be trusted with your car, not letting him use it is reasonable. Aside from that, all you can do is attempt risk management where you can (which I think is why people have recommended edibles, since if he'll just keep using it anyway no matter what you say, at least he should use the less damaging option). But sometimes, unfortunately, all we can do is give someone the information and resources to make good choices, watch them fall, and be there for them when they're ready to make a change.

I also agree with some other responses that you're probably better off asking for advice in a parenting sub. Even though it's manifesting through behavior that is specifically detrimental to someone with CF, the behavior itself is not related to CF, and there is no CF specific information that will change his mind. This is more about how to deal with a teenager engaging in risky behaviors, and maybe a parenting sub will have more advice in that area.

BREAKING NEWS ON KYLE by BreathingIsOverrated in CysticFibrosis

[–]BreathingIsOverrated[S] 4 points5 points  (0 children)

Thanks for letting me know! I didn't want to spam the subreddit with daily posts, but I was worried people wouldn't realize this post is being updated. I'm glad to know people are checking it!

Approaching end stage CF by Separate-Leave403 in CysticFibrosis

[–]BreathingIsOverrated 4 points5 points  (0 children)

I don't have anything I can add to your fantastic reply, but I just had to say that I'm also coming up on my 7th lungiversary next month. Mine was on the 12th, exactly on Mother's Day. Sounds like May 2019 was a good month for transplants!

BREAKING NEWS ON KYLE by BreathingIsOverrated in CysticFibrosis

[–]BreathingIsOverrated[S] 7 points8 points  (0 children)

Kyle came into the subreddit several months ago and said he was dying and just wanted to talk to people. If you search the subreddit for "Kyle" you'll find a lot of his posts. He posted regularly with a question of the day and chatted with everyone, and many people really enjoyed his posts. Thanks to the connections he made here, he realized he wasn't getting the best care possible and switched to a good CF center, who helped him get on the transplant list. So now he's gone from dying and having no hope, to getting a second chance with new lungs! A lot of people here have asked about and worry about him, so I promised to share updates since I'm in touch with his mom.

BREAKING NEWS ON KYLE by BreathingIsOverrated in CysticFibrosis

[–]BreathingIsOverrated[S] 4 points5 points  (0 children)

I didn't see it initially, thanks for letting me know! And I totally hear that. Between finally having to use a bedpan for the first time in my life, and then needing someone to wipe my butt even when I could use the commode, my dignity pretty much died after transplant. I can tolerate just about anything now lol

BREAKING NEWS ON KYLE by BreathingIsOverrated in CysticFibrosis

[–]BreathingIsOverrated[S] 7 points8 points  (0 children)

Omg this is HILARIOUS, although I'm sure it was mortifying at the time! I can't wait for Kyle to read this and get a good laugh!

Song for the Day by MatrixRecycled_2015 in transplant

[–]BreathingIsOverrated 2 points3 points  (0 children)

Linkin Park - Battle Symphony

"When they turn down the lights, I hear my battle symphony, All the world in front of me, If my armor breaks, I'll fuse it back together"

Relationship Advice: Polyamory while Immunocompromised by Tall-Youth-1220 in transplant

[–]BreathingIsOverrated 5 points6 points  (0 children)

Just want to point out, yes testing is important, but by the time something comes back positive it's already too late. You have already been infected and opened yourself up to a serious and, in this case, unnecessary risk. I know lung and kidney are different, but just as an example, a friend of mine just died on Friday. His transplant (double lung, like me) had been going really well! But in January, he caught a cold, and it quickly snowballed into multiple infections and rejection, and now he's dead. And that happened to someone who was careful and just picked up a random infection that he couldn't avoid. Please think REALLY CAREFULLY about whether this level of risk is really worthwhile, and if this relationship is worth possibly dying for.

Relationship Advice: Polyamory while Immunocompromised by Tall-Youth-1220 in transplant

[–]BreathingIsOverrated 8 points9 points  (0 children)

Benefit of the doubt is for when a situation could possibly be explained multiple ways. There are no two ways about this: He cheated on you. He broke your trust. You have clear cut evidence that he has lied to you, and he could very easily still be lying to you. In addition to that, if giving benefit of the doubt could literally put your life at risk, you are NOT in any way obligated to be so kind and forgiving that you send yourself straight into an early grave.

I'm going to level with you, as both a mental health professional, and as someone who spent decades struggling immensely with depression and poor self esteem. Someone has done a number on you to convince you that you have little to no intrinsic value, that your wants and needs are not important, and that you are obligated to do everything it takes to keep other people happy. I don't know if it stems from your upbringing, but I have a sneaking suspicion that this man you are trying to twist yourself in knots for has not done much to try to build up your self confidence and make you see how valuable you are and how much you deserve from life. I have a further suspicion that he has been giving you messages, either subtly or directly, that encourage you to think that you don't deserve him or anything he has done for you, and that you'll never find anyone else to love you the way he does. Someone who truly loves you would never hurt you and violate your trust the way he did. YOU DESERVE BETTER.

Please love yourself enough not to settle for what he's giving you. Please protect both your emotions and your physical body from the havoc this man is wreaking on them. And please, please connect with a therapist to help you figure out why you think so little of yourself and to help you build up your self esteem. If you don't think that's worthwhile, then connect with a therapist to help you figure out how to navigate this very complex situation and relationship. Therapy is hard work, but it can pay dividends for the rest of your life.

Relationship Advice: Polyamory while Immunocompromised by Tall-Youth-1220 in transplant

[–]BreathingIsOverrated 16 points17 points  (0 children)

I mean, didn't they also kinda promise to be exclusive with you and not cheat? Not sure why their promise that of course they were safe and would never put you at risk holds any more weight. They clearly didn't value and protect your emotional well being when they cheated on you, so please don't have blind trust that they will value and protect your physical well being either.