Part 5: Putting the 'Premonition' of Pneumothorax into Words—Can You Relate to That Feeling?

If you have ever experienced a pneumothorax, I am sure you know what I mean. That feeling of, 'Oh, it might be happening again.'

It is not necessarily a sharp pain or shortness of breath, but that specific sensation where you know for certain that 'something is wrong.'

I have experienced pneumothorax more than five times. In the beginning, even when I noticed that feeling, I did not want to believe it, and sometimes I would pretend not to see it for a while. But as it kept recurring, I began to recognize it myself, thinking, 'This is a pneumothorax.'

This time, I will try to put that 'premonition of pneumothorax' into words.

A bubbling sensation when leaning forward

It is a truly subtle sensation that I might have overlooked if I hadn't experienced recurring pneumothorax. When I lean forward, there is a feeling around my right chest as if air is moving, or like a bubble popping.

It is hard to explain well, but perhaps I could describe it as having an air sac with a pinhole-sized opening in my lung; the hole is usually closed, but when I take a certain posture, pressure is applied to the sac, and the air inside leaks out little by little, bubble by bubble.

During my first pneumothorax, I didn't know what this was. But from the second time on, I immediately recognized it, thinking, 'Ah, this is it.' It is a sensation unique to when a pneumothorax is occurring.

A feeling as if the surface of the lung is loose

As I experienced repeated pneumothorax, I sometimes felt a soft, loose sensation on the surface of my lung inside my chest. It is difficult to put into words, but perhaps I could describe it as a feeling that the lung is not fully inflated, or that the surface is sagging.

Looking back, I think this was also a sign of pneumothorax. When I confirmed it with my doctor during surgery, they said it was highly likely that the hole had been opening repeatedly in the same spot. I believe that is why I felt that bubbling or looseness in the same area every time I had a recurring pneumothorax.

A throbbing pain in the chest when walking

This did not happen every time, but there were occasions when pain occurred only when I moved.

When I was resting, I felt fine and could breathe normally. However, as soon as I walked a little or moved my body, my right chest would start to throb, and I couldn't walk quickly. There were days when I would wonder, 'Why does it hurt so much just from walking?' and could only walk slower than usual.

However, I also learned that not all chest pain is necessarily a pneumothorax. After my covering surgery, I had similar chest pain, and while I was worried that it might be another pneumothorax, I had an X-ray taken at a local clinic, and it turned out my lung had not collapsed; I was diagnosed with gastroesophageal reflux disease. Since then, I have been able to distinguish that 'this type of pain is not a pneumothorax.' I think that as I gained more experience, I gradually learned the difference between pain caused by pneumothorax and pain that is not.

A heavy, dull feeling from the shoulder to the back

This also did not happen every time, but there were times when I had symptoms like stiff shoulders during a pneumothorax.

There is a heavy, dull feeling from my right shoulder to my back, a kind of heaviness that is slightly different from my usual stiff shoulders. It is a feeling that doesn't go away even if I massage my shoulders, and it just doesn't feel quite right. There were several times when I thought, 'My shoulder stiffness has been bad lately,' only to find out it was a pneumothorax.

It is not known as a symptom specific to pneumothorax, but in my case, it often appeared in conjunction with other symptoms.

Unable to sleep on my right side

When my right lung has a pneumothorax, I cannot lie on my right side at night.

When I lie on my right side, I get a sensation as if the air in my chest cavity is being compressed, making it difficult to breathe, so I naturally turn to my left or lie on my back. I feel like if I put even the slightest pressure on my right lung, more air might leak out—it feels scary even to have other organs press against the lung due to gravity.

This sensation often occurred during the period when I was waiting for it to heal with rest after confirming at the hospital via X-ray that my lung had collapsed. I think it was a discomfort specific to when air was leaking at a moderate level.

My chest feels heavy and tight when I take a bath

I sometimes experience a similar sensation when bathing.

When I soak in the bathtub, I feel a tightness as if my chest is being compressed. My doctor explained, "It might be because the water pressure pushes on your abdomen, raising your diaphragm and pressing on your lungs." Since this sensation often occurred while bathing, there were many times when I went into the bath to relax, but ended up having to get out early because I couldn't soak comfortably.

A choking sensation that makes me want to clear my throat

I think this is the most common "pneumothorax experience," but there is a unique kind of choking sensation.

It's not quite a cough, but a light, repetitive throat-clearing, as if I can't get rid of a tickle in my throat. I choke when I try to speak. When I'm talking, I choke halfway through and my words get stuck.

I have the impression that this choking sensation continues from the onset of the pneumothorax until the lung is completely healed. It continued not only immediately after the onset, but also during drainage and for a while after being discharged from the hospital. It's a symptom that's hard for others to understand, and since I choke every time I speak, I couldn't hold a conversation, which was quietly painful.

Surprisingly, I rarely felt short of breath

You might be surprised, but I didn't feel strong shortness of breath very often while I had a pneumothorax.

As long as I was resting, my breathing was almost no different from usual. I think the lung that didn't have the pneumothorax was functioning normally, so that side was working hard to compensate.

I mainly felt short of breath when I exercised. Once, during a tennis lesson, I felt, "My movements are sluggish, I'm out of breath," and later found out it was a pneumothorax.

I think many people imagine "pneumothorax = shortness of breath." But at least in my case, the accumulation of small sensations like the ones I've written about functioned as a sign of pneumothorax more than major shortness of breath.

The feeling of knowing for yourself whether it's a pneumothorax

As you gain experience, you start to be able to judge for yourself, "This is a pneumothorax" or "This is not a pneumothorax."

A bubbling feeling, a sense that the lung is loose, chest pain when walking, a heavy and dull shoulder, not being able to lie on the right side, chest discomfort in the bath, choking—when these overlap, my body is almost certainly experiencing a pneumothorax. Conversely, there is often not much shortness of breath, and I can often go about my day normally if I stay quiet, so the scary part is that it's easy to let my guard down.

Of course, self-diagnosis is forbidden, and you must go to the hospital. However, I think that the sense of "Oh, this might be bad" being honed is something that, while I didn't want to experience it, has certainly accumulated. I wonder if those who have experienced pneumothorax multiple times have similar feelings.

What to do when you notice a premonition of pneumothorax

While the appropriate response depends on the severity of the symptoms, if you think "something is off," the most important thing is to rest and contact a hospital. In my case, my doctor told me, "If you ever feel a sensation that is different from usual, don't try to endure it; please come in early."

Even so, I found it difficult to make the decision to be hospitalized. Drainage is painful, and if I were hospitalized, I would have to take time off work. Even though I continued to have regular check-ups and X-rays for observation, and my doctor even went so far as to say, "I strongly recommend hospitalization," I wanted to believe somewhere that it would heal naturally if I just rested, so I kept putting off the decision. In the end, after some time passed without improvement, I finally resigned myself to being hospitalized.

I have had experiences where I was glad I acted early, and experiences where I regretted waiting too long. If you feel a premonition of a pneumothorax, I recommend seeing a doctor as soon as possible.

In conclusion

This article is a record of my personal sensations. There are individual differences in the symptoms and feelings of a pneumothorax. If you have any concerning symptoms, please be sure to consult your doctor.

For those who have recurring pneumothorax or who thought, "I understand"—please let me know in the comments or replies. I think there are parts of this feeling that only those who have experienced it can understand, so I would be happy to connect with others in the same situation.

Next time

In the next article, I will write about how I found a specialist for BHD syndrome. I plan to write in detail about how I, who was told at the first hospital that they had "never seen it before," managed to find a specialist on my own and ended up asking for a referral letter myself.