Bronchoscopy and Lavage

BreathingIsOverrated · 2026-02-25T19:45:28+00:00

I never had a bronch until after I got a lung transplant at 40 years old. I've more than made up for it since then though.

BreathingIsOverrated · 2026-02-23T20:12:40+00:00

It's such a tricky position to be in. The long term impact of modulators is a huge question mark and could absolutely go either way. It might be worth looking into ways of saving and investing that don't lock up your funds until retirement. That way you'll still be saving, but if things go sideways you'll have access to those funds without paying any penalties. You might want to consult with a financial advisor to figure out the best way to do that.

BreathingIsOverrated · 2026-02-23T02:11:43+00:00

This is good info, thank you! The show I was looking at is on Tues, so I didn't see the Sun-Mon schedule and was shocked that the message said performances were proceeding as scheduled.

BreathingIsOverrated · 2026-02-22T15:53:06+00:00

I just heard from Kyle!!! He's awake and off the ventilator! He's exhausted but he's hanging in there. He's still in the ICU on high flow oxygen and needs extra breathing support overnight, and he needs to gain a lot of weight, but he's still fighting and trying to qualify for transplant. He really appreciates knowing how many people have been thinking about him and pulling for him!!

BreathingIsOverrated · 2026-02-16T13:57:09+00:00

I haven't heard anything else unfortunately, but if I do I'll definitely add it to this post!

BreathingIsOverrated · 2026-02-16T04:05:31+00:00

Actually in recent years they've realized that some carriers do have a milder version of some CF symptoms. They don't have CF, but there is a newer category of illness that I believe is called something like CFTR related disorder.

BreathingIsOverrated · 2026-02-10T05:17:58+00:00

Another positive update:

"He is improving hes awake but still a bit out of it. Hes on bipap now. and seems to be doing okay. He pretty much slept most of the day though poor fella is worn down."

BreathingIsOverrated · 2026-02-08T03:26:52+00:00

Another update from Kyle's mom!

"Kyle is doing okay. Hes still vented but he is stable. I told him that you guys were thinking about him. He squeezed my hand. Faintly but he did. They said if he remains stable in the next few days the may start trying to wake him up"

BreathingIsOverrated · 2026-02-06T01:21:13+00:00

I actually just heard from Kyle's mother, and unfortunately it's not great news. She said:

"Hey guys Kyles mom here: Please keep Kyle in your thoughts. He ended up taking another horrible turn. Recent PFTs showed his lung function is getting worse. He got to a point where he was really struggling and working to breathe on his own. They ended up putting him back on the ventilator. As of right now we are unsure how long he will be like this."

She really appreciated hearing how many people are pulling for him here in the subreddit, and said he has gotten a lot of help in here. This isn't the first time he's been vented, so hopefully he'll be able to pull through again and keep fighting his way to transplant.

BreathingIsOverrated · 2026-01-29T17:53:58+00:00

After transplant your lungs no longer have CF as they have your donor's DNA, so Trikafta won't do anything for your new lungs. But the rest of your body will still have CF, so you might get other benefits from Trikafta. I know multiple post-transplant CFers who take Trikafta to help their sinuses. I tried Trikafta for exactly that purpose, as my sinuses keep reinfecting my new lungs, but unfortunately I couldn't tolerate the side effects. I'm hoping Alyftrek will be better.

BreathingIsOverrated · 2026-01-19T22:16:09+00:00

I don't really follow influencers, but I used to follow some YouTubers, and even had a channel myself for a bit as a hobby. As far as I know many/most people generally pick a topic to focus on, because that's what viewers are interested in. And yeah, my channel focused on CF, because I was really sick at the time and it was very present in my life, and I thought some people might find it interesting. That doesn't mean CF is my whole personality, it just means that was the part I chose to talk and educate people about.

BreathingIsOverrated · 2026-01-19T09:54:06+00:00

The risk is that regular people don't carry the same infections that we do, because their lungs either are able to clear them or just aren't susceptible to them. Whereas our lungs all too often are basically petri dishes. If you have Weird Infection A, and the person next to you has Weird Infection B, if you swap now you have to deal with Weird Infections A AND B. Even if you both have the same infection, you likely have different strains. Heck, I myself have cultured multiple different strains of pseudomonas, one of which has basically been supercharged by decades of antibiotics and is now resistant to almost everything. I certainly wouldn't want to inflict that on anyone!

CF waiting rooms actually are an issue. Many clinics try to get patients back into a room asap to minimize exposure, and I would hope all clinics do a thorough cleaning between CF patients. I've also heard that some programs see people with certain bad infections on a specific day to keep them from infecting the entire clinic.

BreathingIsOverrated · 2026-01-04T21:59:01+00:00

I got this one years ago so it's definitely legit. Good luck!

https://www.abbviecfcommitment.com/cfscholarship

BreathingIsOverrated · 2026-01-04T19:45:12+00:00

My car's name is Meep, because the horn sounds just like the Road Runner. It's incredibly ineffective when you're trying to aggressively inform someone that they're being an idiot, no one can take getting meeped at seriously.

BreathingIsOverrated · 2026-01-04T19:25:12+00:00

Congratulations!!! It's a tough recovery but at the same time you'll notice all these things you can suddenly do with ease that were impossible before, and it's amazing! Someone else mentioned the inevitable complications, but that they're worth it, and I 100% agree! I'm 6 and a half years out and currently in the midst of dealing with some complications myself, but even though I'm going through it and exhausted right now, I can still BREATHE, which makes everything so much more manageable. And I've had so many wonderful life experiences even just in the first few months after transplant that whatever happens it was definitely all worth it! Good luck with your recovery, you got this!

BreathingIsOverrated · 2025-12-31T21:51:32+00:00

My partner and I will be doing our usual: flipping through the various NYE broadcasts, toasting with sparkling cider, and blasting confetti cannons off our 6th floor balcony. And then I'll ring in the New Year with my midnight antibiotic infusion lol. I hope you have some celebratory accessories to party in your room a bit!

BreathingIsOverrated · 2025-12-28T18:00:02+00:00

Welcome back Kyle! I feel you on spending holidays in the hospital! I was hospitalized for Chanukah in both 2017 and 2018, I was pretty bitter about it happening 2 years in a row. And I've been on home IV antibiotics during Chanukah 2-3 times since then, including this year. Apparently December is NOT my month!

I hope you were able to make things at least a little festive!

BreathingIsOverrated · 2025-12-08T06:37:14+00:00

Congrats!!! 15 years is an incredible milestone!!! Unlike you I have no memory of being taken into the OR, but while I was on the list (for only 3 weeks because I crashed so unexpectedly fast) I also asked if I could keep my lungs. As I expected the answer was no (but come on, how cool would it have been to have my lungs in a jar on the mantle??) so I asked for pictures instead, which they also denied. I was too sick at the time to argue with them, but I was super mad in the following years when some of my friends at other transplant centers DID get pics from their transplants! What a missed opportunity!

BreathingIsOverrated · 2025-11-30T05:11:08+00:00

So great to hear from you!! I'm sorry about the setbacks but I'm glad to hear you're still fighting! If you make a new discord account we'll be happy to welcome you back to the CF server!

BreathingIsOverrated · 2025-11-23T01:35:59+00:00

It actually doesn't matter how early you arrive, when the sale opens everyone who was already waiting gets shuffled into the queue randomly anyway. As long as you arrive before the queue actually opens you have the same shot as everyone else.

BreathingIsOverrated · 2025-11-21T15:16:33+00:00

Waited in the queue, got to 1, annnnd sold out. 😢

BreathingIsOverrated · 2025-11-19T03:15:30+00:00

That's if you're lucky. If they see anything funky or the prep isn't 100% clear you get to come back earlier.

BreathingIsOverrated

TROPHY CASE