The Infusion Drama Continues…

Remember, when I said, that the new place looked promising? Well, how wrong I was.

Over the last few infusions, problems started to build up, and came to a blow-up today.

One of the issues is that they are not respectful of my time. Everytime I showed up there, it would take at least 30 minutes or longer to get the infusion started. So if you had an appointment scheduled for 3 hours, it would take four, minimum. I was told this had to do with the pharmacy having to mix my medication, somehow that was never an issue at the infusion center before, but I digress.

The next issue was their inability to put a catheter in me. On July 12, I arrived on time at my appointment. My nurse, a slightly insecure, but polite young man tried to put a catheter into my antebrachial vein (middle underarm). The vein rolled up. Shit happens, I thought, and he proceeded to try my basilic (middle elbow crease) vein. I was about to tell him that his needle was angled way to steep, he poked. He did hit the vein, and blood squirted out.

Then he called a colleague to help. When she, nurse L., a bit of an elderly nurse arrived, I thought, ok, she’s been around the block, she’ll know what to do. I suggested using my hand, where I have strong, visible veins. “We try to avoid that,” she said, and tried the vein on the back of my lower arm. After over 30 years, that was a new one. I saw her hand shaking, and she said “Oh, I have a tremor, don’t worry, I know what I am doing.” Not exactly reassuring!

It didn’t work. She fumbled back and forth with the needle, and when I finally said, that it is hurting me, she let off. She did get into my hand vein, only to reproachfully tell me that the skin on the back of my hand is incredibly tough and leathery. Thanks, I guess.

At the end of the infusion, she came in again, and told me to suggest getting a port, or a picc line to my doctor, to make her life easier. I stared at her in disbelief, and left.

A PORT or a Picc Line? Sure, I’ll have a surgical procedure (port), or a picc line, that greatly will impede with daily activities, for an infusion I get every six weeks.

My right arm developed bruises, four to be exact. I was teaching summer school, and after seeing my students shocked stares, I taught in long sleeves in 90 degree weather. I told myself, that so far, there was always a different nurse, I probably wouldn’t see her again.

I was wrong. Yesterday, I arrived, and a nurse I hadn’t seen before welcomed me. I was admonished that I was late- which I wasn’t, I had been waiting in the lobby for ten minutes. I told them I was due for labs, and whether they could take them before we begin. They had never received the lab order, so they told me they’d take labs after my infusion. I was confused, but was told that they were worried about taking too much blood from me. Whatever.

Predictably, she could not lay the catheter in my right arm, and asked someone else. This nurse insisted on using my left arm, even though I said I’d prefer my right arm, since I am left-handed, and need to be able to write. She then proceeded to lay the catheter, and another 45 minutes later, I was hooked up to my infusion.

After I was unhooked, my nurse tried to draw blood, and low and behold, didn’t succeed. She turned, and asked for help, and in came nurse L., the butcher from last time. I will not lie, I was scared. As it turns out, I was right to be scared. She said “you’ll need a tourniquet.” That’s logical, sure. And now, one would expect that she turns around, gets a tourniquet, and proceeds with the blood taking. Nurse L.’s method was to take her hands around my upper arm, and squeeze it hard. I have had Crohn’s disease for over 30 years, and I have had regular IV infusions in the last eight. I have had blood taken more times I can count. At no point, did anyone decide to tourniquet by grabbing my arm and squeezing it tightly. If we had been on a battlefield, or in a car accident, this may have been appropriate, but we were in a clinical IV center, and the tourniquet was right next to her! It rarely happens, but I was at a loss for words. I was scared of what this woman would do to me next, and before anyone tells me “oh you should have said something”- I did. I did tell her that I’d prefer a tourniquet, but she said “but this is working.”

Once I was at home, I called my gastroenterologist’s office, and told them everything that had happened. They said they’d immediately transfer me, and I would have to never ever interact with anyone in that place. They were appalled (that was the exact word they were using), and I asked them not to send patients there anymore. I will also try to complain to the hospital and the infusion center director come Monday, because, of course, no email addresses are listed on their website. I have photos of my bruises though.

I have a book chapter overdue, I should be preparing syllabi and classes for next week, and my yard looks like nature’s taking over again. Instead, I get to document bruises, and call doctors and write letters of complaint. The joys of navigating the medical system.