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In the fall of 2022, I had an emergency admission to the hospital. During this hospital stay, I was not an Independent Patient Advocate, but a PATIENT.

As an advocate and someone who has spent the last thirty years or so in the healthcare industry, I knew what should happen. But, as you will see, things did not occur the way they were supposed to happen. I knew how to advocate for myself but, as I began to think of all the folks that do not know how to advocate for themselves; it was laid on my heart to attempt to tell individuals, such as yourself, ways you can speak up for yourself or your families, especially when they are in an emergency room or hospital setting.

I woke up between 2 and 3 a.m. on November 7, 2022, with severe pain, both above and below my waist. I knew something was wrong but wanted to call my doctor for advice and decided to wait until his office opened for calls at 8:00a.m.

While I waited, my thoughts began to question whether these symptoms could be related to COVID since I had just returned from a “Sister’s Trip” to Pennsylvania a few days prior to this attack. I was told two of my sisters had developed COVID symptoms. I evaluated myself several times to make sure I was testing negative. While I waited to talk with my PCP or Primary Care Physician, I thought to myself, “You better test yourself again to make sure this was not associated with the COVID virus”. Well, guess what? This time when I tested for COVID, my results were positive.

When I called my doctor, I told the medical assistant about my symptoms and my positive COVID test results. Very shortly, my doctor instructed me to go to the emergency room immediately. I called 911 and told them I needed to be evaluated and taken to the hospital, but also told them my symptoms and COVID results.

Since I live in a town home community, I asked them to not use sirens when coming to check on me because it might alarm the other residents. The EMTs came, checked my vital signs, and reviewed my current medication list. They then took me to the hospital. I need to tell you my only son and daughter-in-law were out of the country enjoying a much-needed vacation, so my direct support system was not present to help me. This is when it is helpful to have family, friends, or an independent advocate that is willing to step in and assist you in a crisis. It is useful to have these discussions before a crisis occurs or who you can call upon if or when an emergency arises.

Upon our arrival, I was quickly isolated from other patients in the emergency room due to my positive COVID test results and the EMTs left me in the capable hands of the emergency room staff. The hospital staff began conducting several tests, including a CT scan. I was placed in a private room in the ER and later that afternoon, an emergency room doctor came into my room and informed me that I had a severe case of COVID and had a diseased gallbladder and I was being admitted to the hospital.

Sometime later, a female doctor appeared in my room in the ER. She was accompanied by several assistants or doctors. The doctor talked to me about my diagnosis but did not identify herself as a surgeon or that she would be the physician that would be performing the surgery to remove my gall bladder. I thought she and her team were additional emergency personnel.

Later, I was re-located to a beautiful room. They continued IV fluids and kept my pain level at a manageable level. A nurse came in and told me I was scheduled for surgery the following morning and could not have anything to eat or drink after 12:00p.m. That was not a problem, because I certainly had no appetite. I don’t recall much of what happened that night because I was dozing off and on due to the pain medication I was given.

The next morning, I was moved to the pre-operative area and when a nurse came into my room, she suddenly bolted from the room when she found out I was COVID positive. A long time passed and when she finally returned, I told her I had seen the anesthesiologist, but I had yet to meet the surgeon. She asked me if I was sure I wanted to see the surgeon because the surgeon told her she had met me yesterday in the emergency room. I told the nurse “Yes” because I had questions concerning the surgery. In my opinion, this nurse needed some patient relationship training because I felt she didn’t want to help me because I was COVID positive and even if that were true, she shouldn’t allow a patient to see her hesitation to treat me.

The surgeon came by and briefly discussed the surgery and told me what to expect when I returned to my room. My friend and neighbor stayed in the post- op waiting room to talk to the doctor after the surgery was finished. She said she was surprised when the doctor said I could probably return home the day I had the surgery.

When I returned to my room and woke up, I was hooked up to oxygen and it seemed every time I moved, an alarm would go off. They had attached the monitor to my right forefinger, which is the most arthritis affected joint I have on my hands. During the entire time I was hospitalized, I did not get very much rest because of the oxygen alarm going off all the time.

My friend, who is an independent nurse advocate, talked to the nurse navigator about my home situation and informed her of the fact I was not ready for discharge from the hospital.

During the same time frame, the doctor came into my room and said I could go home. I told the doctor no social worker or nurse navigator had come into my room asking what my home situation would be when I returned home. I then told the doctor I could not go home until I had time to find someone to stay with me because my family was out of the country. The doctor said there was no reason I could not go home, but I told the doctor again my family was unavailable to help but my sister would be here soon, and I couldn’t go home until my home arrangements could be finalized. The doctor seemed surprised when I gave her the above information and then she left my room.

The next day, my home arrangements were completed. My social worker friend would take me home and stay until my nurse friend and advocate got there to stay the night with me. My younger sister would be here the following day. I informed the nurse about these arrangements and asked what time I could expect to be discharged. She said my discharge would be soon. She stated she would draw up my discharge orders.

My social worker friend arrived in the early afternoon, and we waited for discharge instructions. Finally, in the very late afternoon, the nurse came in with the discharge papers and threw them at me and sharply said, “You can read them.” She did not review the discharge orders with me. My friend and I were both shocked at the nurse’s behavior regarding my discharge instructions from the hospital.

An attendant came to help us take my belongings to the entrance and waited with me while my friend went to get her car. When my friend returned, the attendant helped me into the car and told my friend she was instructed to load an oxygen concentrator into my friend’s vehicle. We both found this very unusual and unsafe because, in most instances, the oxygen company delivers the concentrator to the client’s home and provides proper training on the safe use of the concentrator. The attendant was insistent we take the concentrator with us.

I found I did not need to have oxygen once I arrived home, and I was upset the hospital sent an expensive piece of equipment that was not needed for my recovery. After I arrived home, I called the oxygen company to pick it up, but it took several calls until they finally picked the concentrator up two weeks later.

In conclusion, my hospital stay was full of events and situations that were not managed in a professional manner. My concern is for all the folks who do not have my experience level, so I created this blog and compiled a list of 10 tips about Emergency Room or Hospital Stays that you, your family, or your independent advocate can refer or use in the future.

Stay tuned for more Stories and Tips on blogs “You Don’t Know What You Don’t Know” by Sue Wallace, Certified Senior Advisor.