Poor Treatment: Part 3

My wife and I have dealt with bad, mean, and ignorant doctors and nurses together. The people in the medical field are in this line of work in order to help people. Not when it’s easy, not when it’s convenient, not because they have to. These individuals chose this line of work and for some of them to treat patients inappropriately, they should not be doing this for a living.

Nursing 101
There are three rules (in my opinion) that nurses (and all medical staff for that matter) should follow at ALL times:

1. If something is dropped on the floor, it’s a lost cause. Whatever fell on the floor will need to be replaced by a new one. This could be anything from a glove to a pillow or even flushes. 

This is a standard of care in most hospitals that is expected to be followed. In fact, it is taught as a “skill” that all nurses have to physically pass in order to get their license.

Hospitals are supposed to be a clean place and a safe place, but their floors aren’t. There are so many things that fall on the floor including bodily fluids, and things with lots of germs and bacteria on them. The staff doesn’t do a very good job of properly cleaning it either.

I have witnessed a nurse dropping one of my wife’s pillows on the floor in her hospital room, and then picked it up and tried to put it back in her bed with her. I didn’t know any better in the beginning, and Candace had to explain to me why it’s such a big deal. That actually happens a lot when I have been in the hospital with her, whether inpatient or outpatient, and I have had to ask the nurse for a new pillowcase, in order to keep her safe. With my wife being so immunocompromised (that is, barely having an immune system), it’s very dangerous for her. She could get sick very easily and that could literally kill her.

I have heard that people have died from something being picked up from a hospital floor and being used on or for a patient still. I don’t know the statistics or anything, but I do know that is a very scary thought.

2. Gloves need to be worn by a nurse when coming into contact with a patient for any reason.

Nurses and doctors who enter a patient’s room, normally should be sanitizing their hands upon entry, and wearing gloves when they come into contact with a patient. It is the patient’s right to ask for any medical staff member to put gloves on if they haven’t. Again, this is very dangerous because Candace is immunocompromised.

Before my wife got her port surgically put in, she had a hard time getting IV’s started because her veins were being over-used. Especially when someone inexperienced tried to access her. She was being stuck repeatedly for labs and sometimes infusions. Sometimes the person trying to draw the labs would need to call in someone else to help because they couldn’t get into her veins. On top of inexperienced people, she was having to deal with multiple infusions in one week, which made it difficult even for experienced nurses to insert an IV into her.

In an instance a couple years ago, after Candace had undergone a surgery, we had issues with one particular nurse not wearing gloves when she came into contact with her. I felt like I asked her to put on gloves almost every time she came into the room to check on her surgery area or to give Candace’s medication to her. We hardly ever saw her that day with the exception of giving Candace her meds and when we hit the call button. We weren’t being rude or unreasonable. It’s nursing 101 to wear gloves!

3. Nurses need to listen to their patients.

Nobody knows more about their body than the patients do. Caregivers should serve as an advocate and help with communication. I have done both.

Usually we don’t have too many issues with nurses. Every now and then we get an arrogant nurse or one that just won’t listen or one that is just stuck in their ways. Sometimes we have an issue with a nurse not wearing gloves. Sometimes we have issues with things dropping on the floor. In both instances, either Candace or I (or both of us) will speak up and say something. Sometimes the nurse or assistant is very apologetic and corrects the issue, and sometimes we can tell the nurse is very annoyed by what we said.

There is a particular way that Candace needs to have her port accessed. Most of the time the nurses that need to access her port are thankful for the instruction. Candace always seems to apologize for saying anything but most of the nurses will say that they are thankful for it because they want to help her, not cause harm (especially infections). On occasion, we get a nurse that looks at Candace like she is stupid and has a hard time grasping what needs to be done, and think that they can do it in a better way. That’s when Candace has to justify why it needs to be done the way it needs to be done, and I chime in as well. It’s frustrating because sometimes she has a hard time talking due to being out of breath, or she has a hard time moving her mouth to talk because of her MG.

If a patient is telling a nurse what they need, everything in their power should be done to make that request happen. Of course, respect is reciprocated with respect. Being a jerk and demanding things will not get a patient anywhere with their medical team. I have heard stories from Candace (from her medical background) that when patients are “problem patients,” it takes longer for them to get anything they ask for, and the nurse doesn’t come into the room very often because they don’t want to deal with the rude or problematic patient.

Doctor Evil
There was a doctor I had mentioned previously that had seen Candace a couple of times in ICU very early in our relationship. This doctor was always the only neurologist on call at that hospital where we were going to the ER at (until she got a new neurologist). He was a general neurologist and she had been under his care for at least a year before her new (now previous) neurologist started with the company, and who she started to see regularly. So every time Candace went to the ER for her MG, it was him that saw her because neuromuscular specialists never round the floors. And whenever he saw her, he never gave her the treatment she needed.

Before I had met Candace, she was in the care of this new (now previous) neurologist. She had already been on her IVIG treatment at this point. I met this doctor once and that was it. I heard a lot of what this doctor wasn’t doing versus what she was actually doing. When Candace would tell this doctor that she was having a hard time and needed more IVIG, she was given a hard time about it. Her doctor had said that she had no control how he treated her in the hospital because he had seniority and (at that time) she no “proof” such as positive antibodies or a positive EMG, that Candace “even had MG”. This doctor just didn’t believe Candace and didn’t fight for her, or work with her in any way. 

The “care” she gave Candace was having her IVIG at a high dose, which is good, and then this doctor kept tapering her off even when she was having a hard time, like she was supposed to get better and this would go away or something. This doctor did a lot of MG related tests on Candace and they always came back negative, and that was what this doctor was going off of for treatment. Even when Candace showed up to the office in bad shape, it didn’t change her treatment plan. She ended up in the ER many times because of this doctor, as well as her colleagues.

I don’t like this doctor that she used to have. I don’t even like the team of doctors in that office. The one that saw her in the hospital was on duty that day and we had no choice but to see him, but the neurologist she saw for appointments essentially treated her the same and did absolutely nothing to help her, just because she didn’t show positive on tests for MG. She was treated poorly by this doctor and the rest of the team. So we stopped going to that office and worked on finding a new neurologist. Candace made multiple appointments at different hospital systems because she was in the worst shape since her diagnosis in crisis years prior. From that point on I started to find my voice so that I could advocate for Candace better, and help her get the things she needed while she was in and out of the hospital.

Long before I had met Candace, she had a doctor in a different hospital system that told her all her problems were all in her head and put “conversion disorder” in her chart. I can’t even believe that something like that has a name. Candace told me of how she wasn’t being very nice about it and the doctor even said to her face that Candace was “wasting her time.” Conversion disorder is no laughing matter. It affects the care of so many people, with only those two words in their chart. 

Thankfully now Candace has a wonderful team of doctors who don’t think she’s crazy and actually talk to each other, in order for her to get the best treatment. When we first met one of her current Neurologists together, the first thing Candace had mentioned was this doctor that put this terrible thing in her chart, and this new, amazing doctor made an adjustment in her chart and invalidated it because he knew it was the right thing to do.

Candace and I have been through a lot in the years we have been together. There are a lot of things that I can remember and there are also things I will never forget. 

I don’t have a medical background. 

Before I met Candace, I rarely went into a hospital and had maybe one or two doctor’s appointments each year. Now I am well versed in what to expect for doctor’s appointments and hospital visits. I can even understand what is being said. At first it was like listening to someone speak another language!

Not everyone has been kind or taken proper care of my wife’s health and well-being. I was there for some of it. Thankfully she’s been blessed with a great team of doctors that are on our side and really have her best interests at heart. I know it has been an ongoing battle for her.

Citations

Port Information (https://medlineplus.gov/ency/patientinstructions/000491.htm)

Conversion Disorder (https://medlineplus.gov/ency/article/000954.htm

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