Poor Treatment: Part 2

Fun Times at the ER The first hospitalization that Candace and I went through together was in September of 2016. I was actually at a Luke Bryan concert when it happened. I was able to be in communication with her via text, until she stopped texting me back. I didn’t know that she was having any issues until then. I texted her friend at the time, who was with her, and asked if everything was ok. Her response to me was, “call me after your concert,” That’s when I got that bad feeling in the pit of my stomach. I knew something was wrong.

I called Candace’s friend when I got to the car and she let me know that she took Candace to the ER. I panicked and got upset and fought traffic and took my mom and sister home, changed my clothes, and hauled it to the hospital where Candace was. Candace’s friend had stayed with her until a little after I had gotten there, and had warned me before I saw Candace that I might not like what I was going to see. She had been through this with Candace before, whereas I had not. I had no idea what she meant, but when I saw Candace, she was on a ventilator. They had to shove a breathing tube down her throat because she couldn’t breathe on her own, so a machine had to do it for her. I had never seen anyone on a ventilator before.

I had stayed with her all night up until she was able to go home the next day, I believe. This was my first rodeo, so I wasn’t prepared. I didn’t have a “hospital bag” or my phone charger or a book, or some other form of entertainment. It made for a long night, but I was glad to be there with her.

At a different ER trip shortly after the one I mentioned above, Candace had been getting a regular treatment called IVIG, and that was what she needed and she knew it. She spoke highly of how much better she felt and how much more productive she felt after getting a single treatment. She was headed into a Myasthenic Crisis, so I drove her to the hospital in hopes for her to be able to get this treatment.

The doctor that was supposed to take care of her hung her out to dry. She needed this treatment, and he wouldn’t give it to her. I didn’t have a voice back then just yet, but if that were to happen now I would have fought for the treatment. He did absolutely nothing for Candace. I saw how upset she got about it. We knew that when we were going home from there, she would still be in bad shape and that she would continue to struggle with her MG, and that we would end up back at the hospital at some point in the very near future.

During another ER trip that happened, we were at a different hospital this time (because of our previous experience). We had actually had a new patient consult with her new neurologist that very day and ended up in the ER shortly after. He was very quick and responsive to her needs, and it was amazing to have that kind of support from a doctor, especially one we had just met that same day.

When we got to the ER, I ran inside and said I needed help getting Candace inside. The nurse that was at the desk came out with me and had brought a wheelchair. Candace was turned on her side in the front seat (so her airway wouldn’t collapse) and the nurse kept trying to talk to her and get answers. I kept telling the nurse that she was unable to speak but she kept trying to get her to talk anyways. I didn’t realize that the nurse was doing this to assess her. It’s how they measure whether a patient is “alert and oriented” by asking four questions. I was panicking too much and just wanted to get her inside safely.

On top of that, she barely helped Candace get out of the car onto the wheelchair. The whole time this ordeal is going on, I am explaining to her what’s going on and I even kind of yelled when she told Candace to get into the wheelchair. I thought, HELLO! I just said she is unable to stand or walk, OR talk. During the check-in process, Candace was struggling to hold her own head up. I helped her as best as I could while I tried to answer all their questions for her to be checked in. A lot of the stuff I didn’t know about yet. I was still learning.

When I was working a forty-hour job, there were times when I had to leave work and take her to the ER. Usually, there was nobody else available, but I was always scared about leaving her in the care of people who were clueless about how to take care of her whether it was family or friends or the hospital staff. One of the things I took advantage of when we first got married was to set up FMLA. It was nice to not have to worry about my job being in jeopardy, so that I could be with my love when she needed me the most.

With each ER visit, I have learned more and have been able to better prepare should we need to make another trip. Unfortunately, we have had to go to the ER too many times to count in the past three years. We have gone many times for her MG when she was headed towards or was in a crisis, and we have gone once for her SPS when she had a full-body spasm that was out of control and beyond our means to manage.

We know it could be any of her autoimmune diseases (even ones we have not been to the ER for yet) that we may need to go to the ER for, and it could happen at any time. We just need to be prepared for anything.

Citations IVIG (https://www.webmd.com/a-to-z-guides/immunoglobulin-therapy#1)