My ID doctor's nurse is rather frantic. She tells me I need to go to the emergency department (ED) immediately. I tell her I cannot. I want to go to the ED at the medical facility where the port was placed. That is nearly 400 miles away. My mom and I need to pack and plan for the trip. (Moreover, it is Tuesday morning. I have Bible study in the evening. Although I feel absolutely awful, I am going to Bible study. Tonight, we are starting Judges chapter 13. It is the beginning of Samson's life. I have waited a whole year for this study. I was going to Bible study.) I did not tell the nurse about Bible study, but I stated we needed time to arrange the trip. She told me I should not be left alone due to my symptoms. I appreciate her concern. I hang up and started planning for a journey to the medical center.
Early Wednesday morning, my mom and I start packing the car. We load up all our luggage and my medical equipment. We are soon on our way. Minute after minute, I try to remain calm. But, I am overwhelmed with the prospect of going to the ED. The thought of enduring another round of being poked and prodded and asked endless questions makes me want to cry. Combine that with the tremendous pain radiating throughout my body, the trip to the medical facility is void of much conversation.
When I arrive at the ED, the waiting room is packed with people. I pray I am expedited through the waiting area since I have a home ventilator. Surprisingly, when I go through triage, the nurse makes a big deal that I have Mitochondrial Disease. She states I must have a room in the ED due to Mito. I am confused by this statement. No one has ever hurried along my treatment due to Mito. Usually, no one knows what it is. I have a feeling something must have happened in the recent past with a Mito patient and now there is a new protocol for folks with Mito. Despite this urgency, there are no rooms available in the ED. I wait and wait. About an hour passes from the time I am triaged until I am taken back to a room.
A doctor enters my tiny curtain-enclosed cubicle. From the doctor's demeanor, I have a feeling he is a resident. He asks few questions. He seems unconcerned. I try to explain how much pain I am in and how my ID doctor told me to come to the ED. The doctor leaves.
I wait and wait. Nothing happens. Almost an hour after arriving in my cubicle, a very sweet nurse arrives. She apologizes she has been on lunch. She draws my blood and leaves. Radiology appears in my cubicle and immediately takes a chest x-ray. Forty-five minutes pass. The resident doctor pops his head through the curtain. He says a few things and disappears. I am shaking uncontrollably in pain. Before I can ask if I am going to get anything for pain, he vanishes. I am not connected to any monitors. My heart is racing out of control, but no one can see it. I have no call button. Tears stream down my face. Screams radiate from my mouth as the pain rages.
Another 30 minutes pass. The resident doctor reappears. He sees my distressed state and tells me I am making up my pain. He says he saw me from the hallway and I was not acting like this. I am dumbfounded. I have been like this since the last time he saw me 30 minutes ago. Only now, the pain is much worse. The doctor goes on and says I do not have pneumonia and do not have an infection. I should follow up with a pain doctor to get pain medicine.
The doctor seems not to be listening and constantly interrupts me and tells me I am not listening. Now I am shaking in rage! Although the doctor does not say it, I feel as though he is dismissing my symptoms because at this hospital there are notes in my chart stating I have Munchhausen Syndrome (i.e., I make up my medical ailments). At this moment, I just want out of the ED. I have had enough. I am in extreme pain. Before the doctor leaves, my nurse arrives with a Tylenol #3. I am shocked for pain being ten out of ten on the pain scale, I am being given such a weak medicine. The doctor sarcastically says a few more words and then leaves.
In additional to the Tylenol, the doctor ordered some anti-nausea medicine and a half bag of IV fluids. After all this time of waiting, now they finally give me meds and fluids. I take the meds and allow the nurse to start the IV fluids. I call my mom. She says she will be at the hospital in 15 minutes.
After ten minutes, my nurse is back in my room, I tell her I need to leave. The IV fluids have barely infused into my veins. She disconnects me from the IV and takes out the needle. In a very bad spirit, I leave the ED. I wonder why I wasted my time coming here. I expended a lot of energy enduring this awful physician. When I see my mom in the waiting room, I want to jump into her arms. Oh, to be fleeing from this hospital facility feels so good.
My mom loads my medical equipment into the car. And off we go to the hotel. I am still shaking in pain, and now I have a soured attitude which is making my symptoms even worse. Why did I just travel almost 400 miles just to be released home in the same state I arrived to the emergency department? How can this be? Intense pain and fatigue battle each other for dominance. At the hotel, I take some pain medication. Soon, I drift off into a fitful night of sleep.
Link to Part One click here
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