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Infusion delayed, anxious and worried

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Ulcerative Colitis
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Posted 1/18/2023 9:41 PM (GMT 0)
I was supposed to get an infusion of Inflectra tomorrow but my infusion has been delayed due to the medication shipment not arriving today. They say it will be here tomorrow afternoon.
The woman in scheduling rescheduled me for January 30, which feels forever away. She was also very rude and aggressive on the phone so that upset me.
I’m going to try to speak my the infusion nurses to see if they could get me in on Friday but I worry they won’t be able to and I’ll have to wait until January 30. I’m so worried about this because before I started getting infusions every 4 weeks I would flare right at the 4 week mark. I’m so scared this is just going to happen any day now.
I guess this is more of just a rant post. I’m just very anxious and scared right now.
Posted 1/18/2023 10:53 PM (GMT 0)
I'd do what you can to get the infusion as soon as you can, and I'd stress your symptoms return at not long after the 4 week mark. Good luck!
Posted 1/18/2023 11:04 PM (GMT 0)
Sorry to hear about both the delay and the rude scheduling lady. I hate dealing with that type of stuff on top of already dealing with UC. I would definitely call them back and ask to speak to someone else, a manager if needed.
Posted 1/18/2023 11:28 PM (GMT 0)
Stay on them. You are supposed to get medication every 4 weeks for a reason -- every 6 weeks does not work for you. They should be able to get you in ASAP since this the delay is through no fault of your own.

Good luck!!
Posted 1/18/2023 11:54 PM (GMT 0)
Not sure what the nurses can do to help you, I would put in a call to your dr tomorrow. The scheduling lady is not a dr.

Keep us posted.
Posted 1/19/2023 12:06 AM (GMT 0)
The infusion nurses are able to fit people in if they feel like they have room to. My infusion center is in my doctors office.
I did put a message into my doctors nurse this evening through the portal asking for help getting scheduled ASAP. I really hope I can some kind of good news tomorrow.
I’m feeling really good physically, I’m just worried that will change if I have to wait.
Posted 1/19/2023 2:44 PM (GMT 0)
I really hope that you can get in on time. Worrying about things like this really sucks.
Posted 1/19/2023 2:46 PM (GMT 0)
I spoke with my infusion nurses today and they are able to squeeze me in tomorrow at 8:30am.
This is such a relief! They were so kind and understanding about it unlike the scheduling woman who called me before.
Posted 1/19/2023 2:56 PM (GMT 0)
That's such good news!
Posted 1/19/2023 7:00 PM (GMT 0)
Haley,

I am so happy for you! Way to go on advocating for yourself and following thru.

The stress is understandable to anyone that has to go thru this disease journey. People that haven't experienced it are unaware and sorta clueless.

Glad you got in!
Clo
Posted 1/19/2023 9:35 PM (GMT 0)
Yay! Glad you stayed on it and got in on time!

I had to delay my entyvio infusion by 10 days while I was sick and even though I’m in a solid remission for 5 years, I’ve noticed a difference. Nothing major but enough to notice.
Posted 1/19/2023 11:41 PM (GMT 0)
It’s just so stressful when we need this medication and have to be late on it. Plus the stress can possibly make symptoms worse. I’m just glad the infusion nurses I have are so understanding and kind.
Posted 1/20/2023 12:00 AM (GMT 0)
So glad you were able to get in tomorrow! I'm sure that was a big relief!

I know what you mean about getting stressed over this stuff. I have to keep taking deep breaths and telling myself it will all work out. It's so hard though.
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