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Flu season is coming and even though we are still dealing with COVID19 to some degree, we should be reminded that there are other infections just as dangerous, and one of them is pneumonia.

As a person living with Pompe disease, I’ve had pneumonia at least 4 times in my life, and every time I landed in the hospital for weeks. The worst thing about it is that it had me so close to death every single time.

With Pompe, muscles and the diaphragm are weak and it takes a great amount of muscle to cough up fluid.  The infection could be either viral or bacterial. From my experiences of having pneumonia, it always just seemed like a common cold, with a runny nose and cough. But the constant cough turned to fluid in my lungs and I couldn’t breathe. When I got to the hospital and was diagnosed with pneumonia, they told me that my left lung had collapsed. I hated having to spend weeks in the hospital trying to recover from pneumonia because the recovery was difficult. 


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I always had bacterial pneumonia. I had to take antibiotics, and they had me use several machines to help clear my lungs. That was the part I hated about being in the hospital with pneumonia. One machine I used was a Velcro vest. It was placed around my chest and connected to a machine; the vest would shake my chest continuously. The idea was to loosen up the phlegm so I could cough it up. Another machine I used and can’t remember the name of was something with a face mask to it and was like a vacuum that tried to vacuum my lungs—at least that’s what it felt like. 

It was all a nightmare for me, but it worked. The good thing about it is that I haven’t had pneumonia since I was a teenager, so I’m pretty sure the machines and technology are different and better. 

I’m grateful that I haven’t had pneumonia in years. I think a big part of that is because I have a stronger immune system compared to when I was younger. But anyone can get pneumonia, so I’m still cautious about it because if it can take down a healthy person, then it can still be a serious threat to me. And, to anyone who uses medical equipment to breathe better, such as a continuous positive airway pressure machine to sleep, change the filters and tubes, and keep the mask clean. The amount of bacteria that travel through ventilators and into your lungs is a serious concern. It’s a definite way to get sick. 

A few weeks ago, it was so hot in my building that I couldn’t sleep, so I opened my window and turned my fan on me to fall asleep. The next morning I woke up so congested that I could barely breathe. I started coughing and realized my chest was full of fluid. I’m not strong enough to cough, so I put my bed completely flat and placed a pillow under my lower back, allowing my chest, neck, and head to tilt back more. By doing that, the fluid in my chest would slowly run down toward my nose and throat, allowing me to spit it out. I believe that might only work if it’s a thin fluid. 

I don’t think pneumonia is something you recognize right away. It’s easily mistaken for a cold, and the only time we go to the doctor to get it checked out is if the cough gets worse or we start having trouble breathing. I would suggest that we pay more attention to our body when we’re sick, especially if somebody has Pompe or any rare disease. The last thing we want to do is wait for it to get worse.