My Diagnosis Story, Part 2
This article will pick up where I left off in the Part 1 article. We were a week into my intensive care stay at the hospital. They had finally found out that I was HIV positive and that the type of pneumonia I was suffering from was pneumocystis pneumonia, also known as PCP.
Obviously, the man I was married to at the time was the person informed about my status by the doctors. Despite this, he immediately informed my mother, sister, and my best friend. My sister is very much a person who considers everything. Due to this, she knew that it would be best if everybody was not informed about my status. She wanted me to be able to make the decisions on who I did or did not tell.
We have a cousin who is a nurse and she was honestly just able to put the pieces together and figured out what was going on. So those four individuals, plus my brother in law, were the ones informed beyond the ‘bad case of pneumonia’ that everybody else was told.
Receiving treatment for pneumocystis pneumonia
If you recall from the previous article, they had me intubated because my lungs were almost completely full of fluid. The hospital was attempting to keep me sedated with Propofol. They were using what should have been enough to take a 250-pound man into surgery, while I only weighed 130 pounds. Despite this, if somebody spoke in my room I would open my eyes and look at them. Apparently, I gave people pretty dirty looks and still fought the intubation hose.
What nobody knew was that since I was not fully sedated nor fully awake, my mind was trying to piece together what was going on. The mental toll that this took is something that I am still occasionally dealing with 3 years later. They did give up on keeping me sedated on the Propofol. This allowed me to be able to be more conscious of what was happening and that I was in the hospital with pneumonia. They did keep two types of less potent sedatives available for me because I understandably was having a lot of anxiety issues and even night terrors.
Being informed of my HIV positive status
Once I was off the Propofol, the infectious disease doctor wanted to inform me of my status immediately. My family fought with the doctor on this course of action. I still had a bunch of fighting to do to improve my condition and my family was worried that I would feel like I had nothing to fight for if I knew about my status. Their disagreement became bad enough; my ex-husband threatened to throw the doctor out of the hospital window if the doctor was in my room without one of my family members.
My sister was really helpful
After a couple of days, I was informed about everything while still intubated. Which did allow my sister to talk about everything she found out when researching HIV. It may sound like that was annoying, but it was helpful to have information given to you when you find out you have a new condition.
Tracheotomy or solo breathing?
The next battle came when we were at 13 days of being intubated. The hospital was attempting to force my family to allow them to intubate me, but my nurse cousin put them in their place stating that we had 14 days before they could perform a tracheotomy on me. It was so hard to focus on trying to breathe just the way they wanted, while still having a tube down my throat. I would get so frustrated.
My family argued with the hospital staff about my breathing needing to be exactly on their numbers, since the doctors had previously said it is harder to breathe on your own while intubated. I honestly feel like I got extremely lucky with the respiratory technicians that I had on the final day. They ended up giving me an extra dose of my anxiety medicine which allowed for me to relax enough to have my breathing where the hospital wanted it to be. Having that intubation tube removed was really disgusting.
Beyond the ICU: the start of my HIV journey
After they made sure I was stable once I was off the intubation tube, they moved me to a regular room. I had a lot of different types of therapy to deal with for the next two weeks before I could go home. When I could go home, I was honestly still very nervous about going home. I may have survived the pneumocystis pneumonia, but my journey was truly just beginning.
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