Posted by After all the infusion drama last year, I thought I had lucked out: The company that provides my infusions has a dedicated nurse come to my house every six weeks, and while there have been some schedule changes (mostly around my traveling!). I truly like my regular nurse, and while the slower pumps that they are using stretch the overall infusion time, it’s fine, I am at home, and can move around, get some work done.
All of this changed with my regular nurse needing surgery and recovery herself. Unfortunately, the company was short staffed, and I was told, they would be using a subcontractor (like a temp agency for nurses, I guess). I was absolutely not thrilled- a random stranger coming to my house? But what was I to do? I need the infusion, and I needed it before an upcoming travel.
The communication with the subcontractor was absolutely atrocious. I was referred to a “scheduler” who, unfortunately, could not schedule. She asked for my availability and told me she’d get back to me when a nurse confirmed her availability. It’s not the most efficient system, but okay? I called fairly regularly, and low and behold, I was finally told that my appointment would be the 26th at 1.30pm. Not the day I had told them, but I can be flexible.
The day rolls around, and at 1.10, I receive a call from yet another scheduler, telling me that the nurse who was supposed to be there couldn’t in fact, she had sustained an injury at a patient’s house. At this point, I am over a week late, and I am experiencing symptoms. I am in pain, I have diarrhea, and getting desperate. When I asked whether they could send someone else, I was told they’d try. At this point, my charitable mood was at an end. What exactly do other people, who have less of a flexible schedule than I do? What if I had to take time off of work? What if I had kids who needed to be at certain places at different times?
By Thursday afternoon, I still had not received word, but was told that a nurse “may be able” to come to my house on Friday, 11am. I received a text message from the nurse at 11.15pm, that I read the next morning.
She arrived, and it took her almost an hour, and three attempts to get a line placed. I had told her that she can use my hand (where my veins are strong and visible), but she “doesn’t like that.” After being given the unsolicited advice to “start working out more,” she told me to look into getting a port placed.
Sigh. Not this conversation again. She is not the first person to point out that my veins could be better. Sure, after 30 years of being poked regularly, they can take a toll. And not walking around bruised and banged up after an infusion would be a nice change too. But then, why do phlebotomists never have any issue getting blood from me?
The last time I asked my gastroenterologist about this, he seemed surprised and thought it was unnecessary to book a surgical procedure for an infusion that I may need only every six weeks, and perhaps if one day biological medication is available orally, not at all. But then, if it makes my life easier in the meantime? But would it? Growing up, I knew so many kids with ports and it was a constant mess, they were big, they constantly got infected, they weren’t allowed to work out, and what if I travel and something goes wrong with it? Granted, the medical field has made a lot of progress since then, and my information is most likely old and dated. So, I guess, more research is needed.
Never a dull moment.
The Morbus Crohnicles 