HealingWell
Search Close Search
☰

Making Friends in the Infusion Room

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/19/2015 10:33 PM (GMT 0)
I don't know how some of your guys' remicade infusions work but mine is in a big room with like 12 recliners around the perimeter in pairs of 2 separated by half walls with a nurse's station in the middle in front of them all. Most of the patients they see are chemo, but they also have iron, blood, and remi infusions. No idea if that makes sense to anyone lol. But anyways...

I had an infusion on Friday (2 years going strong!) and this man (I'd say at least 70 years old) and his wife walk in and he's seated next to me. Turns out he's there for his UC and getting his first Entyvio infusion. He was on Humira I guess and it was working very well for him, but then he had to get his knee replaced and something with the Humira caused a reaction and he had a heart attack. Yikes! He's had UC for over 20 years now and has been seeing the GI I go to for those 20 years. We talked about our UC and how awesome our GI is, along with his staff. I just loved talking to a fellow UCer in the infusion room. Kinda bummed I won't see him there again because since it was his first infusion our schedules won't overlap again, but maybe I'll see him at our GI's office! The nurse joked "or side by side colonoscopies!" Lol. I will say that watching him leave in less than an hour (30 min infusion plus observation) made me a little jealous compared to my 2 hour remicade. The nurse was even like "why aren't you on this?" I told her that it was relatively new and wasn't really out there when I started remicade and since remi is working well for me there's no point in switching and you kinda have to go through the tnf blockers before reaching Entyvio. The thing I do like though is having a legitimate excuse for having to take the day off.

:-)
Posted 10/19/2015 10:45 PM (GMT 0)
I like my two hours of rest every two months. I've had infusions in centers like yours, in hospital same-day surgery units, and it private infusion centers. I go to a Precision infusion center now; I like it because they have individual rooms for each patient.

I don't have to listen to anyone else's blaringly stupid TV shows or their awful country or hip-hop music. I don't have to put up with the five family members who came with them to "keep them company." For me, my infusion is quiet time. I like the TV off, restful music from my Ipod and no one I have to talk to. I have them dim the lights and I sleep or just rest and meditate. Or if I'm not in a resting mood, I can read on my Kindle.

I'm almost 10 years in now, BTW
Posted 10/19/2015 10:49 PM (GMT 0)
Awesome story. Thanks for sharing ! Hope you two meet again.
Posted 10/19/2015 11:28 PM (GMT 0)
I'm glad you shared this experience. It feels amazing to make new friends! I can't wait to make a friend with IBD. Maybe you will see him again sometime. :)
Posted 10/19/2015 11:41 PM (GMT 0)
Judy - I hope I'll still be on remicade in 10 years! I love the people there, all the nurses are wonderful, the little old lady volunteers who bring you warm blankets, drinks, and snacks, it's awesome. I don't really know how to explain my center. It's affiliated with the hospital, but it's a separate building behind it. Small 2 floor building that has an office for mammograms and oncology and the infusion room. There are 2 private rooms in the infusion room, but it's very quiet in the big room with everyone. Everyone has their own personal TV, but they give you headphones to use and everyone does if they watch TV. A lot of the people they see aren't there long enough to watch TV. They just get shots or quick infusions. It's crazy how quiet it is. They only have 1 extra chair per person too so no one brings a ton of people. It's really nice. But I agree it is my quiet time. I like that it's time for me to relax and I can't feel guilty about sitting and doing nothing for a couple hours because it's my health.
Posted 10/20/2015 12:28 AM (GMT 0)
Glad you made a uc friend.

I get my remi infusion at my gastroenterologist office and it's usually another uc or crohn's patient, a nurse, and I. We chit chat about medications we've tried, how annoying uc is, etc. It makes the time go by. Everyone in pretty nice.
Posted 10/20/2015 6:19 AM (GMT 0)
Glad you made a uc friend. And I'm getting a bit jealous from how ur infusion centers sound. lol mine is good and I have a really nice nurse
Posted 10/20/2015 9:48 AM (GMT 0)
Where I used to go for my Remicade infusions is a cancer center. I would always count my blessings because I was sitting among cancer patients young and old. It was really sad.
Posted 10/20/2015 2:20 PM (GMT 0)
I go to my GI's office too. I haven't gotten a chance to meet anyone yet. There are only 3 people at a time that are there...they do infusions in an am shift and then a pm shift.

Your center sounds nice. Talking with people who have the disease sounds even nicer :)
Posted 10/20/2015 4:08 PM (GMT 0)
I get mine done at the hospital. I also look forward to my down time for a few hours. I usually just take a nap (because I get Benedryl) or play on my I-pad. Sometimes I will have a chatty roomie which is a nice way to whittle away the hours.

I hope you get to see this gentleman again. It's always nice to have someone who you can talk to and relate.
✚ New Topic ✚ Reply