I made the decision to start documenting my journey after my "5th Episode". That's the term that I have chosen to give it, since no one seems able to relate to what I'm feeling, and Google has returned zero meaningful results as it pertains to pain and BHD unless you're experiencing a pneumothorax (a collapsed lung).
I also decided to register on the BHD Syndrome International Registry seeking support, to realize that I was the 489th participant globally.
On December 16th, 2024, I was awakened by a stunning amount of pain that made turning in bed an excruciating experience.
Because I had no idea what a pneumothorax felt like, the first two experiences after my initial finding in November 2022, had me rushing to the emergency room.
Now, that I'm more familiar, I treat it more as a waiting game, because there is absolutely nothing that can be done.
The initial feeling is very much kin to electric shock. I feel it primarily in my back, but it somewhat presents in my chest also. This part is a little tricky, because when I had my initail visit at City MD that started this ball rolling, I descibed having shortness of breath. Yet, that is exactly what happens.
The pain is so extreme, there is not way to take a deep breath without agony, which results in lots of shallow breathing.
I asked my pulmonologist if this pain could be as a result of any of the cysts rupturing. She wasn't certain as there simply is not enough documentation. But after experiencing so many of them and essentially knowing the "run of show", nothing else seems to make much sense.
So here I am. Documenting my experiences in the event there is anyone out there going through a similar experience.
This is also the first time, that I am 100% clear that whatever has happend has taken place in my left lung, because any movement using the left side of my body is agonizing. My right, side, not so much.
Because I am not a fan of pain medication, I usually try to sleep and rest it out. By day three I am typically back to full function, so it's not so bad now that I know what to expect.
I would love to know is there are there any individuals with BHD Syndrome, specifically with lung cysts who have experienced this.
My pulmonologist did suggest that when the next one happens, to get an x-ray done, but I remain skeptical because the x-rays always come back as unremarkable. At this point, I have been down that road 4 times.
In any event, thank you for taking the time to read this, and would welcome any wisdom you can share was we navigate this path together.
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