a woman resists drowning in a lung

My Experience with Pneumocystis Pneumonia

Pneumocystis pneumonia is commonly referred to as PCP. The PCP is a type of fungal pneumonia that is most common in the elderly and individuals with AIDS.

This is one of the opportunistic infections that those of us with HIV must be cautious about. The fungus called pneumocystis jirovecii is what causes PCP, causing PCP to occasionally be referred to as PJP. My sister and I argued over which was correct until a doctor explained that they are both correct.

My pneumocystis pneumonia (PCP) diagnosis

I managed to get PCP without knowing that I had it. I spent one weekend in bed not feeling well and ended up having extremely strained breathing. An urgent care doctor performed a chest x-ray. The chest x-ray showed that my lungs were almost completely full of fluid. It was bad enough that the urgent care doctor intubated me there and called an ambulance to take me to the actual hospital.

Since we did not know about my status prior to this hospitalization, it took the hospital a long time to determine the exact type of pneumonia that I had (and, of course, the cause of the pneumonia). It took my body so long to start recovering from the PCP that I was intubated in the intensive care unit of the hospital for 14 days.

My recovery

After being moved out of the ICU, I had some minor swallowing therapy and a lot of respiratory therapy. One of the things I hated most was to use the incentive spirometer because it showed me just how much my lung capacity was damaged. Some simple-seeming activities with tossing a beach ball over my head with both arms were exhausting since it required deep breaths.

Even after the hospital physical therapy, I still went home with oxygen, albuterol inhaler, nebulizer, and some of the respiratory tools such as the incentive spirometer. Here two and a half years later, my lungs are still not back to normal. On a respiratory fitness test, my results still show as somebody who has asthma.

Preventative medications

After being released from the hospital, I obviously started seeing an Infectious Disease doctor. Since my CD4 count once released from the hospital was 35, I had to be put on a preventative. The purpose of the preventative medicine was to attempt to prevent the PCP from returning.

Experiencing a reaction to treatment

The initial medicine choice was an antibiotic called Bactrim. This is an antibiotic containing both sulfamethoxazole and trimethoprim. Initially, I handled this medication well. But after a month, I started having a mild rash. Although the longer I continued to take it, the worse the rash became.

My ID doctor told me we needed to stop it because it seemed like I was having a reaction to the sulfur in the Bactrim. As a replacement, he prescribed a thick yellow liquid called Atovaquone. I can honestly say that I hated taking this medicine!

Options for vaccines

When it comes to pneumonia vaccines, there are two options. The most common one is the Pneumovax 23. This shot is generally a once every 5 years type of vaccine. On the other hand, the Prevnar 13 is only needed between 1 and 3 times during your adult life.

I was instructed to get the Pneumovax 23 first and then the following year I got the Prevnar 13. Of course, I had to start getting the yearly flu shot because I was one of the people who did not get the flu shot before.

We do not always consider the impact that seemingly regular infections can have on our bodies. This PCP almost ended my life and I was not even 30 yet. I did not even know I had pneumonia, much less this kind of pneumonia. This just shows us how much extra attention we need to pay to our health.

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