Where would you rather sit if you were having a Remicade infusion? Here:
Yeah, me too.
I belong to a couple of online RA discussion boards. Every once in awhile, a frightened Remicade newbie will post a question about the infusion process. The community generally jumps in with reassuring responses and descriptions of how the whole thing works, describing friendly infusion nurses, recliners, TVs, even snacks. And I sit there reading them, thinking, “Really? It doesn’t go that way for me…”
Yesterday, I got to find out how the other half lives. See, my infusions are normally done in my rheumatologist’s office – a nurse comes in on Thursdays to do them. But about two weeks ago, I got a call saying that the nurse wouldn’t be available on my scheduled week, and could I move it a week earlier or later? The other dates, unfortunately, didn’t work for me. I’ve also been pretty unhappy with my infusion experiences, and have been curious about how other people do it. So I asked if there was someplace else I could go, and the medical assistant reluctantly said that I could have it done at the hospital. She did warn me that it would be more expensive, but I thought it would be worthwhile just to see what it was like.
And boy, was it different.
When I get Remicade at my doctor’s office, this is the drill:
I am shown to one of the regular examining rooms, which are really tiny, and I sit in a wooden chair very much like the one in the first picture except older and shabbier. Recently, someone moved the furniture around in the examining rooms, so the chair now sits awkwardly behind the open door, where the door bumps my chair if anyone tries to open it wider. The nurse comes in and starts my IV. Most of the time, he doesn’t take my vitals, and he never asks me any questions. Then he hooks up the Remicade bag and leaves. I generally don’t see him or anyone else again. I sit and read a book or listen to music on my iPod. At a certain point, I feel pain in my arm and look up to see that the IV has run completely dry. So I get up, drag my pole out into the hall, and flag someone down to try to find the nurse. If he’s not in the middle of something (which he usually is), he comes in, flushes the line with saline, and bandages me up. Otherwise I wait awhile, then go back into the hall to repeat my request.
Since he has so many infusion patients in one day and also has another job to get to after he’s done, the infusions have been getting faster and faster – they now take less than an hour and a half. I’ve told him before that fast infusions make me feel awful, but he claims that the Remicade drug rep told him that speed isn’t an issue, and that some people just react that way to the drug. (Funny, since I only started reacting badly when he started speeding up – also funny, since other people on the boards say they have the same problem.) After my infusion, I go down to the car where my husband is waiting. I am always depressed and shivering and my hands are icy; my husband has to turn the heat on in the car, even if it’s hot out. I feel like I’ve been hit by a truck. We go home, where I collapse and sleep for hours. Sometimes I wake up the next day still feeling awful.
Now, here’s how yesterday went:
I got to the hospital and went up to the infusion room, which turned out to be on the oncology floor. (I do have to admit that seeing “CANCER CENTER” on the wall when I got out of the elevator did bum me out a bit… the one negative in all of this.) I walked into the room and saw about four or five blue recliners and two other patients, who were there for chemo. The nurse, who was incredibly friendly, weighed me and took my blood pressure and temperature. Then she asked me a whole bunch of questions about how I was feeling and went over my chart. She had a list of my medications which my rheumatologist’s office had faxed over; about half of them were wrong, and she made the appropriate corrections. (Okay, this worries me – time to have a talk with them.) I found an empty recliner, which had a pillow waiting for me and a big table next to it for my things. I told her that my infusions usually take about an hour and a half but that I don’t do well at that speed. She reacted with horror and said that the Remicade guidelines are pretty clear on the importance of going slowly to minimize the chance of infusion reactions – she usually takes about three hours. She started my IV and let me get good and hydrated before hooking up the Remicade bag.
At all times, there was at least one nurse in the room, and all of the nurses I saw were friendly and kind. They came right over to each of us several times to ask how we were feeling. They ordered lunch for us from the hospital cafeteria. Several times, they passed out chocolate, and also offered to go get sodas if we wanted them. The recliner was really comfortable. There was a TV, but I didn’t watch it. Instead, I had a great conversation with the 87-year-old cancer patient in the recliner next to mine – we turned out to share a common interest in opera. My IV didn’t run dry – the nurse came over before the Remicade bag was completely empty and flushed the line. I never had to go looking for anyone.
When I came downstairs and got in the car, my husband remarked on how different I looked. I was warm and happy and felt cared for. (The chocolate zinging through my system didn’t hurt either!) My hands weren’t icy. I went home and felt mildly tired, not exhausted. I didn’t need to nap.
Now I don’t know what to do. I love my rheumatologist; he is smart, kind, spends lots of time with me, takes a team approach to my care instead of dictating to me. He seems to know everything – I will come to him with what seems like a vague symptom, and he knows immediately which tests to order. He has come up with some things that seem like they’re completely out of left field, and always turns out to be right. He is, quite simply, the best doctor I’ve ever had.
But there are problems with his office, more than just my issues with the infusion process. Twice now, I’ve gone to my infusions expecting my dosage to be raised, and learned that someone forgot to call the insurance to authorize the increase – so I had to stay at the lower dose. The medications listed on my chart are usually wrong – I’ve called to have a prescription filled and found that someone forgot to note my new medication in my chart, resulting in a delay. Medications have also been called in at wrong doses or in wrong amounts. The billing office is more than six months behind – a big problem, since my FSA has deadlines.
I was pathetically grateful for the way I was treated at my infusion yesterday – I was ready to get down and kiss the nurses’ feet. I almost felt guilty for getting such good care, as if I somehow don’t deserve it because I am not a cancer patient. I question whether it was worth it, given the difference in cost - am I just being won over by chocolate and kindness? (I don’t know exactly what the cost difference will be – I’ll know when I get the EOB – but our PPO only pays 90% of costs, so it’s bound to be expensive.) My husband points out that we always meet the out-of-pocket max on our insurance anyway, and what does it matter if we meet it a little sooner? My mom points out that infusions are, when you really think about it, a pretty terrible thing to have to go through, and that the least they can do is make the experience as comfortable and pleasant for me as possible. And what’s wrong with a little chocolate?
I have much to think about.