Disrespected & Dismissed
Our dialysis story — chapter 23
On July 25, Ben was released by the cardiac surgeon who did his fistula surgery. The dialysis nurses immediately started using this combined vein/artery for his dialysis.
After four sessions, I took the above photo of his bruised, swollen, and very painful arm. We both spoke about it to various nurses at the dialysis center. We were told:
Oh, that’s normal. Nothing to be concerned about.
We see this all the time. It’s okay.
This happens to a lot of people. It’ll get better.
Ice it.
Put a warm compress on it.
Ice it, then put on a warm compress.
Take Tylenol.
Last week, his arm got much worse. More swelling. More bruising. More pain.
Still, our concerns were dismissed. Ben felt disrespected as if he were a complaining toddler.
Ben’s dialysis catheter was to be removed today. I wrote last week about issues with the time of his appointment. He was supposed to have an appointment for 10 am, but I discovered he was scheduled for 11 am, only 30 minutes before his dialysis chair time.
I thought the appointment snafu was straightened out when I called concerning Ben being diabetic and not eating or taking his diabetes medication. They adjusted his “last food” from 4 am to 6 am and, supposedly, corrected his appointment time.
Last Friday, Ben’s arm hurt so much that he wanted to skip dialysis. I wasn’t going to let that happen. I called the doctor and received approval for his catheter to be used to give his arm a rest. When I told the nurse, she argued with me. I told her to call the doctor. She reluctantly relented.
Also, Dr. E, his nephrologist, was supposed to visit the center on Friday to examine Ben’s arm. He didn’t show up.
Over the weekend, we continued treating his arm with ice and warm compresses. He took Tylenol. Nothing helped.
This morning, we arrived at the doctor’s office at 9:40 for his 10 am appointment. Paperwork was completed by 9:50. Then, we sat and sat. No one else was in the lobby. Why the delay?
Ben asked the receptionist what was going on. She replied:
Your appointment isn’t until 11 am.
I jumped up and went to the reception window:
No, no. His appointment is 10 am. I called last week about something else and found out he was incorrectly scheduled for 11:30. Casey fixed it. His appointment is for 10:00 and it’s now 10:30.
The receptionist put on her best smiley face:
Well, I can see right here that he’s down for 11 am.
Ben said:
We’re leaving. You people don’t know what you’re doing.
The receptionist excused herself to speak to the nurse, returned, and said:
The nurse is coming to get you right now.
Right now was 15 minutes later. We didn’t get to the exam room until 10:50.
Fifteen minutes of more paperwork, questions, and vitals.
Ben and I both expressed concern about his arm. The nurse admitted that it looked interesting.
The doctor finally came in at 11:10. He examined Ben’s arm, which now looks like this:
Then, the doctor did an ultrasound before declaring that Ben’s arm was traumatized and needed to rest more.
Cardiac surgeons typically release arms for use two months after surgery, but I’d rather let the fistula heal for two to four additional weeks. He has some narrowing that’s causing access problems for the nurses. Some bruising and swelling is normal, but this is beyond what we typically see. Did anyone tell you how to treat it?
I explained that we were told to use ice and warm compresses and for Ben to take Tylenol.
No one said to keep his arm above his heart? Elevation is very important. No one told you that?
I sighed:
No, we were not told to elevate it.
The doctor sighed deeper than I had:
Well, start now. For as many hours as possible. Continue with the ice and warm compresses, and Tylenol. No more dialysis using his arm; gotta let it rest for at least two more weeks. Then, I’ll do another ultrasound. The narrowing may improve on its own. If not, I’ll do angioplasty. Just put a balloon in there to open it up. If I don’t have to do angioplasty, I may remove the catheter. Or, I might not — just depends. See you in two weeks.
Ben has a 9 am appointment on the 23rd.
In the parking lot, I gave him the diabetes pills he skipped earlier in the morning and a snack of Glucerna and graham crackers to tide him over until he gets home from dialysis in the late afternoon.
The doctor’s orders hadn’t reached the nurses by the time we arrived at the center, but I assured them that Ben’s arm should not be used for the next two weeks. Three nurses were standing there. They all seemed mildly annoyed.
Was their irritation because the catheter requires extra care and cleaning, and the dressing has to be changed each time?
I don’t know what the problem is, but we are both eager for Ben’s favorite nurse to return from vacation. She wouldn’t be annoyed. She would be empathetic and kind.
With her, Ben wouldn’t feel disrespected and dismissed.
© Dennett 2023
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