On Thursday morning, I arrived at the hospital at 8:45 a.m. for my third dose of Remicade. I checked in, they led me to my seat, and they inserted the IV near my left wrist. Then my rheumatologist came in, pulled the curtain around my chair, and we talked about the pain in my feet, my anxiety dreams, my exhaustion, and how I was starting to get discouraged with the whole process of searching for a treatment. We talked about different ideas for getting me feeling well enough to get through finals, he told me what he thought about different RA diet choices, he wrote me a couple of prescriptions, we discussed when to book my next appointments, and then he left me to finish my Remicade infusion.
This time, instead of bringing moms, magazines, or movies, I brought my regulation of toxic substances and hazardous wastes casebook. It’s a thriller, I swear. But I have some reading to catch up on in that class so I thought if I was feeling up to it I might as well try to get some of it done while I was stuck in that chair anyways. So I perused pesticide regulation statutes and hazardous waste cases while attached to the IV with the blood pressure monitor squeezing away every half hour.
Around 11:00 a.m. one of the nurses came by to check on me and her foot squeaked on the floor as she walked by me, like the floor was wet. Curiously, she pulled back the curtain from around my chair only to discover a big puddle of clear liquid on the floor that had been concealed by the curtain. She asked me if I had spilled something. I said no. Both of our eyes quickly darted up from the puddle on the floor to the nearly empty IV bag of Remicade.
It turns out that somehow, during the first two hours that I had been sitting there, the IV machine had primarily been dripping Remicade on to the floor instead of into my veins. The curtain around my chair had concealed the puddle. The nurses were flabbergasted. They said nothing like this had ever happened. They couldn’t figure out why the alarm on the IV pump hadn’t gone off. They couldn’t figure out what to do about the expensive medicine all over the floor (remember, my 20% co-insurance is $600 per infusion.) And so I sat there, attached to an IV of nothing, while they tried to figure out what to do next.
But we realized that there was really only one thing to do. We had to start the infusion all over again. As I looked at the puddle of Remicade on the floor, I realized that I was going to be stuck with the IV for another two or three hours. I also realized that I could get upset about it, and be miserable for two or three hours, or I could cut off that stress response and just try to relax. Take things as they were. Move on. While the nurses flurried around I sat in the chair and took a few deep breaths. Then I smiled and told them I was ok, that I understand that stuff happens, and that I hadn’t really wanted to go to class that afternoon anyways.
The nurse who had hooked up the IV in the first place felt really, really bad about the whole thing, since it was most likely a mistake on her part that had caused the leak. She apologized about 300 times and assured me that I wouldn’t be charged for the first batch of Remicade that was being sopped up with a towel. Since the infusion center only keeps the amount of medicine they are planning to use that day, it took a little while to get a new batch of Remicade. When all was said and done it was noon by the time we started take two of Remicade dose three.
The nurse who felt really bad offered to buy me some lunch, so I took her up on it, partly to make her feel better and also so I would make it through the second treatment without passing out. She brought me a delicious tuna salad sandwich. After eating, I was pretty exhausted, so I gave up on my toxics casebook. But luckily I had my laptop and managed to get on to a bit of a wireless network, so I entertained myself for the remaining two hours.
It was 2:45 p.m. by the time I left the hospital. Dose three took a total of six hours. I was completely exhausted. And I have a huge bruise on my left wrist from having the IV in for so long. But, in the end, I got my medicine and I was proud of myself that I got through the whole mess without getting upset. And the nurses in the infusion center will probably be extra nice to me from now on.
This time, instead of bringing moms, magazines, or movies, I brought my regulation of toxic substances and hazardous wastes casebook. It’s a thriller, I swear. But I have some reading to catch up on in that class so I thought if I was feeling up to it I might as well try to get some of it done while I was stuck in that chair anyways. So I perused pesticide regulation statutes and hazardous waste cases while attached to the IV with the blood pressure monitor squeezing away every half hour.
Around 11:00 a.m. one of the nurses came by to check on me and her foot squeaked on the floor as she walked by me, like the floor was wet. Curiously, she pulled back the curtain from around my chair only to discover a big puddle of clear liquid on the floor that had been concealed by the curtain. She asked me if I had spilled something. I said no. Both of our eyes quickly darted up from the puddle on the floor to the nearly empty IV bag of Remicade.
It turns out that somehow, during the first two hours that I had been sitting there, the IV machine had primarily been dripping Remicade on to the floor instead of into my veins. The curtain around my chair had concealed the puddle. The nurses were flabbergasted. They said nothing like this had ever happened. They couldn’t figure out why the alarm on the IV pump hadn’t gone off. They couldn’t figure out what to do about the expensive medicine all over the floor (remember, my 20% co-insurance is $600 per infusion.) And so I sat there, attached to an IV of nothing, while they tried to figure out what to do next.
But we realized that there was really only one thing to do. We had to start the infusion all over again. As I looked at the puddle of Remicade on the floor, I realized that I was going to be stuck with the IV for another two or three hours. I also realized that I could get upset about it, and be miserable for two or three hours, or I could cut off that stress response and just try to relax. Take things as they were. Move on. While the nurses flurried around I sat in the chair and took a few deep breaths. Then I smiled and told them I was ok, that I understand that stuff happens, and that I hadn’t really wanted to go to class that afternoon anyways.
The nurse who had hooked up the IV in the first place felt really, really bad about the whole thing, since it was most likely a mistake on her part that had caused the leak. She apologized about 300 times and assured me that I wouldn’t be charged for the first batch of Remicade that was being sopped up with a towel. Since the infusion center only keeps the amount of medicine they are planning to use that day, it took a little while to get a new batch of Remicade. When all was said and done it was noon by the time we started take two of Remicade dose three.
The nurse who felt really bad offered to buy me some lunch, so I took her up on it, partly to make her feel better and also so I would make it through the second treatment without passing out. She brought me a delicious tuna salad sandwich. After eating, I was pretty exhausted, so I gave up on my toxics casebook. But luckily I had my laptop and managed to get on to a bit of a wireless network, so I entertained myself for the remaining two hours.
It was 2:45 p.m. by the time I left the hospital. Dose three took a total of six hours. I was completely exhausted. And I have a huge bruise on my left wrist from having the IV in for so long. But, in the end, I got my medicine and I was proud of myself that I got through the whole mess without getting upset. And the nurses in the infusion center will probably be extra nice to me from now on.
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