I'm trying not to be like every one of the countless other failing blogs out there that start off their post with; "it's been a while since I've posted something here..." But alas, it seems that is the only introduction that I can come up with at the moment. While the number of events may be few, the size of them is quite substantial. At least to me.
The fourth is not with me.
Friday night, on the eve of the 4th of July, I began feeling really hot, and struggling to breathe. Even with the AC on and my CPAP, it still felt like I was suffocating. At this point I had already taken a morphine earlier on in the day to curb feelings of suffocation, and to take a second one meant that I was only covering up a greater problem. I called my parents to take me into the ER because I couldn't use an ambulance – saving that rant for another day.
After the usual chest x-ray, and CT scan, I am sent to the ICU where I spend the next four days being poked and woken up at all hours of the night. If it weren't for the kind nurses, and the distraction of television, I wouldn't have been able to see how the hospital doesn't suffer more deaths by depression. It seems every time I check-in, I am greeted with a new level of mortality. I heard a man struggle to breathe in a bed next to me and was told he may not make it through the night. I experienced two "code blue" alerts over the intercom for patients in rooms right next door It is quite unnerving to process when you are by yourself.
Fortunately I was able to get better faster, I believe due to a machine called a MetaNeb. It essentially blows air into your lungs like choo-choo train, helping inflate the lungs while delivering a bronchial violator. Unfortunately, there is no in-home equivalents to this device. Which leads me to my ranting section of this post.
Doctors, please start talking to each other!
I want to preface this by stating that I understand MPS is a very complex, and until recently, largely unheard of. So as an individual who has to try to figure out on a daily basis, whether my symptoms are MPS related or not, I understand how difficult it can be to figure out what is the best option.
I used to think that the patient advocacy groups that I would follow on Twitter would just find things to complain about, and were only paying lip service whenever they would make statements like "the medical industry needs to be patient-centric first and foremost." I didn't realize what this truly meant until a year ago when I was caught in the middle of an interhospital pissing contest last year, and again this year.
There is a problem when the patient is the one having to relay information from one doctor to the next, let alone having to explain/defend the prior doctor's rationale for their prognosis. Hospitals are spending millions of dollars for e-charts so patient's information can be easily shared between doctors offices. My main pulmonary doctor was fully booked for the next three months, but after my discharge from the ICU, the hospital wanted me to see someone sooner. So I was seen by another pulmonary specialist within the same office that I had seen before. It seemed like most of the time I spent telling him things he should have already known if he had looked at my charts for 5 seconds, in the remainder of the time spent scoffing and tearing down the things the other doctors had just told me to do to get better, as if they were horrible ideas. You would think doctors that work in the same office with have communicated together about my situation before I came in, or at the very least not scoff at his partner's decisions to his patient.
It seems like every time I visit a doctor, I get conflicting prognosis, and worst of all any choice that make could kill me in the long run. at this point I'm not sure what I am even renting about anymore, which I hope informs you about how I feel about how easy it is to make decisions these days. Until next time.
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