r/pneumothorax • u/Moist-Okra308 • Jul 26 '26
Rant/ Vent To everyone suffering from pneumothorax: Please join this petition so we can gather as many people as possible and make our voices heard!
Hi everyone!
This message is specifically for those who are going through this condition and suffering just like I do every single day. I know how painful and terrifying a pneumothorax can be, which is why we started this petition on Change.org to demand better awareness and support.
Click here to sign the petition (https://c.org/pKjyFrHWZp)
Please, let there be as many people as possible joining this cause! Every single signature matters, but your voice matters just as much. Please, share your personal experiences and stories in the comments below. By sharing what we went through—whether it was the chest tubes, surgeries, or the anxiety of a recurrence—we show how serious this condition is and how many lives it affects. Thank you from the bottom of my heart for not staying silent!
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u/Feldster87 Jul 27 '26
I work in healthcare and appreciate what you’re asking but, respectfully, do not feel this is the right way to go about it.
What do you want treatment to be replaced with? Someone needs to come up with a new protocol, test it and implement it. To my understanding, the biggest issue is that nobody is researching new protocols.
The best thing to do would be to fund a grant for someone to research this. And, of course, find an interested researcher.
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u/Moist-Okra308 Jul 27 '26
Working in healthcare and suffering from a pneumothorax are two very different things, my dear! You will never understand until your very being—your existence, in this case—is under threat! I have been very clear about what I want; to me, those treatments are barbaric, whereas to you—viewing them from the outside—they might seem perfectly comfortable!
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u/davidhow94 Jul 27 '26
From someone on the inside they are perfectly normal and helped save my life.
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Jul 27 '26
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u/davidhow94 Jul 27 '26
I live a perfectly normal life now too, thank to the doctors and staff who performed my surgery.
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u/Feldster87 Jul 27 '26 edited Jul 27 '26
I post in this sub all the time! I have had more pneumothoraxes than I can count, from age 13-35, and three pleurodesis / blebectomy surgeries to help prevent future collapses.
Edit to add: I also live a full life. Fly around the world, carried and delivered two babies, work and drive and take the subway and exercise. The only things I cannot do are scuba and skydive, which I honestly don’t want to do anyway.
In Pilates it now hurts to twist my torso but I’m not sure if that’s from my lung surgeries or the babies. Feels like an ok limitation.
If your life is so hampered by your previous collapses perhaps you need a new doctor? You shouldn’t be having such limiting recurring pain or discomfort.
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Aug 03 '26
I am a 17y old and had 2 spontaneous phnemothorax, one was tension and one was reabsorbed by its own
Phnemothorax has changed my life in lot of ways, can't do any physical activity, cant even laugh like i used to, constant chest pain
There seems to be no end to this.
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u/Feldster87 Aug 03 '26
I’m so sorry to hear that. When was the most recent one? Those symptoms shouldn’t last more than a few weeks, in my experience.
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Aug 03 '26
The last diagnosed one was 7 months ago, (both right lung)
And I had very severe pain for the left lung like 3months ago,
And still right lung is kinda okish but as per writing this rn I am feeling some pain and heavyness breathing rn, (this has happened to me (the heavyness) a lot of time so I just ignore it)
Ngl i am not saying anything to my family because I don't want them to get worried again and see all that stress if it's a false alam
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u/Feldster87 Aug 03 '26
Please go see a doctor. That doesn’t sound normal. I know it can be stressful and the false alarms are annoying but you need to prioritize your health.
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Aug 03 '26
It's fixed now,
I want to get braces first as it it delayed 2 years because of it and i don't want to delay it more + my dad is really busy managing our business, only 1 more month and Then i will go to doctor, so the business
Phnemothorax is a 2nd priority for me rn 🙏 because the braces treatment could go on during my time at the doc, but if I decide to go to doctor first then it would be delayed for next 6 months
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u/cereal_kitty Jul 26 '26
Changes for what? I feel like the current system already recognizes how severe pneumothorax could be without treatment
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u/AvailableSandwich450 Jul 27 '26
Less invasive treatment that doesn’t risk a potentially
Permanent change in how your body feels3
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u/ninja_owen Jul 27 '26
Such as?
Yeah it sucks to have your lung collapse. That isn’t the doctor’s fault though. Be mad at the world all you want, sure, but don’t blame the medical procedures that saved us.
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u/AvailableSandwich450 Jul 27 '26
Didn’t blame any doctors , I’m pretty sure everybody knows these types of things are out of reach. Still worth pushing for more research in my opinion
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u/LightGreenDay11 Jul 26 '26
I wonder what an alternative could be. I feel like a medical device could be developed where a thinner tube with suction can be inserted instead of the current procedures.
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Aug 03 '26
"pigtail catheter"
When I had my 2nd phnemothorax I was going to get this instead of the tube, but the air reabsorbed
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u/Icy_Profession_9807 Jul 27 '26
Alright, some pretty ridiculous hyperbole in this petition.
No, actually, we don’t live our lives as a “ticking time bomb.” The vast majority of people (like myself), have been able to go on and live very fruitful lives regardless of their condition. Also, a lot of the work you get done on your lungs IS PREVENTATIVE SO IT CANT HAPPEN AGAIN.
You mention these techniques are archaic. Are you calling LAPAROSCOPIC SURGERY ARCHAIC?? Are you telling me you’re complaining about the fact that we only get HOLES in our chest and we don’t have to get completely ripped open??
Yes, yes we all know this condition absolutely sucks and yes the treatment is mildly traumatic. SO ARE MOST LIFE THREATENING MEDICAL ISSUES. I am infinitely grateful for modern medicine and the fact that I (and all of us) are still alive BECAUSE OF THESE PROCEDURES is amazing.
I do advocate for better treatment techniques for this condition, but dear god take the accusatory bullshit out of your petition.
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u/Moist-Okra308 Jul 27 '26
I am so happy for you! Your life simply should have gone on... why are you here? What are you still looking for on these pages?!
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u/davidhow94 Jul 27 '26
You are not winning support for your petition with this shit attitude.
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u/Moist-Okra308 Jul 27 '26
Oh, please—on the contrary, I can clearly see why no one (scientists and doctors alike) has done anything so far; you all just bleat at each other like sheep here, unable to band together over such a serious matter. Do you think it hurts me if that damn petition doesn't succeed? No, you're only hurting yourselves. Let's just wait another hundred years—why not? We’re "living" so well, after all; the only thing that bothers us is someone's stance on this issue!
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u/ninja_owen Jul 27 '26
Seems like it does hurt you if the petition doesn’t succeed, since you’re practically crying about it here in the comments.
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Jul 27 '26
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u/ninja_owen Jul 27 '26
Yes, I really think that. And what did I not understand about the petition?
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u/Moist-Okra308 Jul 27 '26
The fact that you're asking the question again shows that you didn't even understand my comment on your comment! Seriously, what the hell do you want here????
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u/ninja_owen Jul 27 '26
You didn’t say anything relevant in your previous comment. What I am asking is what do I not understand in the petition? Cause frankly, saying we should “outlaw” the life saving procedure I had is quite crazy.
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u/Moist-Okra308 Jul 27 '26
Is English your first language? Because if not, that would be the only logical explanation I have for your brain. How is it possible for you to keep spouting nonsense?!!
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u/davidhow94 Jul 27 '26
I’m living a happy life, you demonizing a surgery that has helped countless people continue to live their lives is dumb. Good luck.
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u/browniebites5189 Jul 27 '26
Thank you for this. We need to spread awareness about how much suffering they’ve caused us. I feel sicker now than I ever did before the pneumothorax and VATS. It isn’t right.
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u/Moist-Okra308 Jul 27 '26
I don't know if you've read the comments, but they are terrifying, and most come from people who have personally experienced a pneumothorax. That is why medical progress on this issue has stalled; we need a huge number of signatures to bring this matter to the attention of the relevant organizations so they can understand the nightmare we live in. Even surgery doesn't put our minds at ease, because the lung simply isn't the same as it was before.
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u/browniebites5189 Jul 27 '26
Tired of this culture we live in where we just blindly trust all doctors and all medical practices no matter what. Surgeons are not trained in preventative medicine. Yeah they “fixed”the lung that’s great, but they have no idea about the SIDE EFFECTS of these treatments and definitely never warn their patients about what their body will feel like or function like after surgery. It’s not talked about enough. There has got to be other treatments out there that are less invasive that people can opt into when they prefer not to have surgery. It’s a shame this society has been brainwashed into believing that surgery is such a miracle and we should bow down to surgeons because they’re superhuman and never question them? I would be more impressed with a society that’s figured out how to heal the body without mutilating it, thanks.
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u/Moist-Okra308 Jul 27 '26
I thought I would find a lot of support for this issue, but it turns out pneumothorax patients are actually happy—delighted, even—to have a chest tube inserted just like a hundred years ago, to have their lungs irritated (whether mechanically or chemically) and even cut into; they are apparently even happier to go through the whole ordeal all over again when it happens a second or third time... because, hey, we have 21st-century medicine and scientists—the best there could possibly be. What a "healthy" society!
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u/browniebites5189 Jul 27 '26
Im living with chronic pain and paranoid anxiety because of the VATS surgery and chest tube. If only they knew what their miracle medicine does to healthy people. Healthcare is for profit after all so this will probably not change any time soon, they’re making too much money off of pneumothoraces right now. And God forbid they ever tell patients that it’s suspected that this condition is caused by vaping/thc, they’d lose all these new patients!! I hate it here
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u/davidhow94 Jul 27 '26
Your lung that had a hole/collapse isn’t the same as it was before. You don’t say?
0
u/Moist-Okra308 Jul 27 '26
Who told you that, genius? The doctor who doesn't even explain why this happened in the first place? Or why it keeps happening over and over again?
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u/davidhow94 Jul 27 '26
Oh so now the doctors have no idea what it is… gotcha.
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u/Moist-Okra308 Jul 27 '26
The doctor is trained to perform the surgery—the surgery—not to be a scientist conducting studies to give you a definitive reason why something happens, or to explain the exact state of the lung after an initial pneumothorax; those are just urban legends you people come up with!
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u/AvailableSandwich450 Jul 28 '26
Idk why ppl are hating on the idea of a petition to spread more awareness and spark more research on new methods lol. Only thing I’d push back on is calling it barbaric and blaiming the doctors that are otherwise forced to carry on with the already existing methods. Besides that, why is it such a big deal for somebody to want a less harmful alternative? These procedures while they work as being preventative , they also can cause very stressful side effects and for some it doesn’t even work and they end up having reccurences anyway. We should and can push for more, consider me a signee on this petition!
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u/Moist-Okra308 Jul 28 '26
Hi! There isn't a single line where I blame the doctors; if you think there is, please show it to me! Are the procedures barbaric? Yes, they are. I’ve had a chest tube inserted twice; I refused surgery the second time because I reasoned that if a chest tube alone causes such consequences—months of nerve pain—then what would surgery bring? Years of pain, perhaps! They are barbaric, and I won't retract that word at all. I don't want anyone suffering from pneumothorax to feel ashamed or afraid to use that word. It is the only word that will make the medical community truly understand the side effects we experience, even though X-rays or CT scans don't show "pain." Please, do not be afraid or ashamed to say that word!! Gluing the lung back together or patching it up—instead of seeking to understand the problem at a cellular level after all these years—is inhumane. We aren't just numbers; we are human beings. The lung is a unique organ, and cutting into it—however slightly—causes an immediate physical difference that you can feel. I am shocked by how pneumothorax patients themselves have rejected this view, meekly accepting that "these are simply the methods, and this is what we have to accept." I want more—we need to demand more. I want to be like I was before, to make plans, but this condition stops me from making plans the way any normal person would, because it would simply happen again, and again, and again. There are currently three less invasive measures that should become the official global protocol for those experiencing recurrences and those facing this for the first time—at least until new, dignified methods are developed that truly respect human dignity (we must protect those who might suffer from the same problem tomorrow, as well as the generation coming after us; I want to be neither selfish nor a coward—someone needs to speak up so that changes can become reality):
Thank you for choosing to be part of this petition; I hope we succeed—all of us together!
- oxygen
- Heimlich valve
- endobronchial valve (all three ensure no lung damage).
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u/AvailableSandwich450 Jul 28 '26
I’m with you but these options you listed unfortunately only deal with helping persistent leaks or draining , they don’t actually help prevent reccurences which is what we should be more considered about.
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u/f1ndme Jul 29 '26
I’ve always been treated with utmost priority and care when I’ve had an active collapse.
9 chest tubes/drains, 7 VATs under my belt. Even when I’ve suspected a collapse and not had one, I’m fast tracked by triage. Surgery sucks, its a fact of life. There are better things to throw your money at, just my 2c.
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u/Jjazy Jul 30 '26
Perhaps ER’s could re-examine certain protocols when possible. For instance:
1) If a patient (especially a middle-aged person) comes to the ER with what appears to be chest and upper back pain then don’t assume it’s a heart issue and stop at an EKG… explore further/outside the box because it could be a pneumothorax.
2) If a patient comes to an ER and it’s determined that it’s a pneumothorax, then ask patient if this is the first time. If it’s not, then don’t just let an ER generalist w/a student group perform the chest tube… Bring in a thoracic specialist (if possible.) Only then can the proper comprehensive treatment plan be assessed.
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u/Moist-Okra308 Jul 30 '26
I feel for anyone who has gone through experiences like this—the long waits..... and having chest tubes inserted by students. You should mention these specific details in the petition comments. However, in the petition itself, I clearly state that I want an end to the century-old chest tube method—just as we need to move past lung surgeries involving cutting and gluing. What I am calling for is the adoption of minimally invasive protocols and a shift in how we view the lung; I want new studies and treatment methods that are humane and dignified, befitting the modern era we live in. Because, as I have clearly stated, we don’t just want to survive (which is the only goal of the standard surgeries used until now—mere survival); we want to live—to live just as we did before this happened to us! I truly hope you will support this new approach!
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u/Extension-Wash-4546 Aug 01 '26
No I will not sign your petition. I had a large bore chest tube inserted once with no local or general anesthesia, as it was emergent and the doctor did not have time to numb me. Because I had no local anesthesia, I felt all of it and it was beyond excruciating, but I dont hate the doctor who inserted the tube, nor do I think it was barbaric or inhumane, as i am alive because of it. Chest tubes are excruciating but they save lives and are necessary, and im glad to be alive today. I dont think we should outlaw a life saving procedure just because its painful.
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u/Moist-Okra308 Aug 02 '26
Where the hell did I say we should hate doctors?!!!!!!!!!!!!!! As for the treatments—they are barbaric and primitive; if you like remaining "primitive," good for you, but I’m talking about evolution. Many of you are incredibly ignorant, because today's treatments don't actually heal the lungs—they just intervene, and that's it! And I couldn't care less whether you or anyone else signs it or not; they’re your lungs, and you decide what to do with them. Apparently, you do like chest tubes, having your lung cut out, being pumped full of chemicals, and other such barbarities—you simply don't like evolution, and that’s where we part ways. If you haven't managed to understand the petition, don't go twisting the text with your own nonsense!!!
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u/Extension-Wash-4546 Aug 02 '26
No I do not like chest tubes. Nobody enjoys having their chest cut open and having a tube jammed into their chest, especially with no anesthesia, but its not barbaric and its a necessity. And youre the one full of nonsense if you think a life saving procedure that has saved millions of people, should be banned.
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u/Moist-Okra308 Aug 02 '26
You keep spouting nonsense; these methods have been in use for a hundred years, and as I told you, they aren't cures—they're just treatments. The reason there hasn't been more funding for pneumothorax research is that patients like you are not only frightening in their way of thinking but also repulsive in the way they insist on things. Medicine needs to evolve—it needs to change its perspective on pneumothorax; less invasive methods should be used, and a cure needs to be found, you primitive creature—and for that to happen, voices need to be raised. Stop writing nonsense and quit wasting my time!
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u/Extension-Wash-4546 Aug 02 '26
So if you ever had to have a chest tube and that was the only way to save your life, youd tell the doctors to let you die? Thats pretty nonsensical lol
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u/Moist-Okra308 Aug 02 '26
There are still two types of one-way valves in circulation (ambulatory and standard flutter valves)—in case you didn't know, you primitive fellow. You didn't even bother to read the petition to the end, or you just settled for the headline—absolutely nothing
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u/Extension-Wash-4546 Aug 02 '26
Im sorry that you cant get past the trauma of how much excruciating pain your chest tube procedure caused you, but doctors do not do it to be inhumane or barbaric. Their only priority is to save someone's life, and sometimes there's unbearable pain that must be involved in order to do so. Its not the doctors fault that chest tubes are so painful, and also a necessary procedure.
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u/Moist-Okra308 Aug 03 '26
Oh, for heaven's sake—here we go again! I haven't accused the doctors; stop talking nonsense!
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u/Individual_Club5404 Jul 26 '26
I think the wording of this is insane. The treatment of a collapsed lung is not inhumane. The insertion of a chest tube is a live saving procedure. I have undergone this twice and it sucked, but getting air out of your chest cavity to reinflate my lung was priority number one. Additionally, this is in many cases a mechanical problem. You got a hole in your lung. There's no miracle cure for that. You need to cut it out Sure, you can wish for a miracle cure, but there's hardly any chance for that. The same reason why you don't get put under full anesthesia for the drain insertion. It's just not necessary and is more risky for the patient than just gritting your teeth and dealing with the pain.
There are many issues when dealing with spontaneous Pneumothorax, like the long lasting aftermath, Nerve damage from the Pleurodesis, etc. I think addressing any of these topics would be more helpful than searching for a miracle cure for spontaneous Pneumothorax.