About IBD Episode 67 - Tips on Getting An Infusion During the Pandemic

About IBD Podcast Episode 67 – Tips on Getting An Infusion During the Pandemic

We’re living through an usual time and people living with Crohn’s disease or ulcerative colitis have many questions about how the pandemic may affect them. IBD experts agree that it’s important to continue receiving medications during this time to avoid a flare-up. That might mean traveling to an infusion center, hospital, or doctor’s office for treatment. Julie Kennedy of The Semicolon Girl recounts her experience in receiving her infusion of her Crohn’s disease medication in the era of COVID-19, including how the procedure was different, and gives her tips on how to make the process go as smoothly as possible.


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Coronavirus (COVID-19) Resources for People with IBD

Get the latest information about the novel coronavirus and how it intersects with IBD, including guidance on medications, physical distancing, and where to get more help.


Find Julie Kennedy on Facebook, Instagram, Twitter, and on her web site, The Sick Adventures of a Semi Colon Girl. Read her blog post about her infusion, Adventures in Pandemics.

Find Amber J Tresca at AboutIBD.comVerywellFacebookTwitterPinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. “IBD Dance Party” ©Cooney Studio.



Episode Transcript

[Music: IBD Dance Party]

AMBER: I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.

This episode is about — what else? — but the novel coronavirus.  As with everything regarding our response to the pandemic, changes are happening rapidly. I’m recording this episode on Monday, March 30th. There are probably going to be things that change before I can edit this episode and before you listen to it so I want to stress that everything is based on the guidance and the information that we have today. I’m going to address IBD-specific concerns regarding the pandemic and I have an interview with Julie Kennedy of “The Sick Adventures of a Semicolon Girl.” She’s going to tell you what it was like having an infusion of her IBD medication this past week and she gives pointers for anyone who is going to a hospital, clinic, or infusion center in areas where extra precautions are being taken due to the virus. And there was a special visitor while I was talking to Julie who decided to add her two cents to our conversation.

At this point I don’t think there’s anyone who can hear my voice who has not been affected by the pandemic. I’m not going to go into the nuts and bolts of that because you can get that elsewhere. What I am going to do is address a few issues that are specific to people living with IBD because there are so many questions at this time. 

Two quick points, throughout this episode I will refer to the virus, which is named SARS-CoV2 as the novel coronavirus and the disease which the novel coronavirus causes as COVID-19.
You may be wondering if having IBD is associated with a greater risk. The experts in IBD say that people with IBD are not at a greater risk of being infected with the novel coronavirus. That means if you’re exposed to the virus and you have IBD, your risk of developing COVID-19 isn’t any higher than people who don’t have IBD.

There’s also been a lot of questions about immune suppression. Having IBD does not mean a person is immunosuppressed. People who have had a colectomy and who live with an ostomy or a j-pouch are also not considered immunosuppressed. So, having IBD, or an ostomy, or a j-pouch doesn’t mean you’re at a greater risk of infection.

The immunosuppressed status comes from receiving certain IBD medications. This does include steroids, azathioprine or 6MP, and biologic medications. All the experts are advising that people with IBD should stay on their medications in order to avoid a flare-up. If you have been exposed to the novel coronavirus or test positive for COVID-19, that guidance might change so at that point you should check with your own doctors for instructions.

It’s also recommended at this time that regular follow-up appointments be done via telehealth and that any elective procedures or surgeries be postponed. There are other guidelines in place and I recommend that you look to your local health department or your government officials to understand how prevalent the risk is in your area and any other precautions you should be taking right now.

Obviously this doesn’t cover every potential question you might have so I have much more information available on my coronavirus page at aboutibd.com. I’m updating it regularly. Sign up for my newsletter when you get the pop up and you’ll get an email every time I do update it. Check IBDMoms on Facebook for information about how the novel coronavirus may affect pregnant people. If you have other questions get in touch with me and we’ll work towards getting an answer because I want you to have the right information. Coming up after the break is my interview with Julie Kennedy of “The Sick Adventures of a Semicolon Girl.”

[MUSIC: About IBD Transition]

AMBER:
Hey, Julie, thanks so much for hopping on the line with me today was we put this together really quickly in the interest of time.

JULIE:
I’m happy to be here happy to help.

AMBER:
Julie, I saw an Instagram post that you made the other day about your latest infusion. And it was interesting to me because you were describing a little bit about how it went. And then I went back a little further in your Instagram to one of your other posts from another infusion, a pre-COVID infusion, let’s call it and how the two were different. So I’m hoping that you’ll tell me a little bit about how this was different now with with COVID going to an infusion center and if there’s any tips that you might have for people as they’re going for their first infusion now with probably a lot of different protocols in place. So describe to me what it was like to even drive anywhere. I haven’t even been in my car for two weeks. So what was that like to actually get in your car and go somewhere.

JULIE: 
Well, I live in Miami. And traffic here is a nightmare because every single person is driving. There our public transportation is not great, so you have to have a car and Miami’s very big so you just can’t rely on public transportation. So everything is always congested. I went on a Thursday afternoon for my infusion and it was like driving on a Saturday or Sunday morning, which is unheard of.

AMBER:
I’m assuming no problem finding a parking spot.

JULIE:
Well, actually, I had my mom drop me off. Um, she was furloughed this week from her job. So she’s got some time and I get Benadryl for my treatments and so I’m very drowsy afterwards. So I prefer not to drive. It’s recommended that I don’t. So my mom was going to take me. I got a notice the day before no visitors allowed with you. And so I was like, well, Mom you can’t stay. So can you drop me off and come back and pick me up? Which is, you know, sounds like an awful thing to ask someone because of it’s just a pain. Um, but she was like, of course. 
So we pulled up onto the ramp entering the facility. And it’s usually congested like crazy going in there usually have to wait for someone to get to your car. They only have valet. There’s usually a bunch of patients standing outside waiting for their cars or their ride. And it’s just always a madhouse, no matter what time. There were no other patients there when we pulled up there were but there was a sign that said no valet. But there was about 10 people standing there in mass in special protective gear. And there were signs everywhere that said, “no visitors” and there was also a tent next to the door. 

When I first got out of the car, my mom had to let them know she’s just dropping me off and getting on, getting out of there. Someone greeted me they had a clipboard, like you’re checking in at a restaurant. And they said, “What’s your name?” And I had to be on that list to proceed. Then I go to another person who then screened me for symptoms and they did a simple questionnaire. Have you had any fevers? Have you had any coughs? Any symptoms in the last two weeks? Have you been exposed to anyone that you know that’s had symptoms? Are you living with anyone that’s traveled? Have you traveled? And once I answered all those questions, and they they put a sticker on me that said “none.” I’m assuming no symptoms, and I was allowed to enter the facility.

AMBER:
Yeah, I was wondering about that, because I saw on your post, that you had a sticker on you, and it said, none. And I assumed that that’s what it meant that you had no symptoms. It also made me wonder, though, if any of the answers to those questions would have been “Yes.” What would that have been?

JULIE:
You would have then gone into the tent, and they would have done a further screening, I believe temperature and I’m sure they had a few other tests. But I did read online that they were not able to test for COVID-19 at this hospital, and this is a big hospital. It’s a university hospital in Miami. So I was a little surprised to see that you can’t actually be tested there.

AMBER:
So they didn’t take your temperature at all?

JULIE:
No.

AMBER: 
Just questions that they asked you.

JULIE:
Based on my answers, um, which was, I was prepared for them to take my temperature because these, sometimes what you’re seeing is subjective and you’re just taking my word for it. I thought that was a little unusual. I thought I was totally ready for them to be greet me with a thermometer. But I guess, I don’t know, that must be their policy. And I’m sure it’s different at each facility.

AMBER:
All right, you answer the questions. Presumably, you get your little none sticker.

JULIE:
Yep.

AMBER:
And then what happened?

JULIE:  
I go into the building, I go into the office where my doctor’s clinic is where I get my infusions. And the waiting room is empty, which is never is. And there was one person there instead of usually there’s four people at the desk to check you in. I see this gentleman every month, he remembers me. We do the simple check in which is the again they asked, he asked me the same questions and I was like, oh, they asked me these questions downstairs. He’s like, everyone’s going to ask you these questions. And I was like, that is understandable. It kind of reminds me of when you get surgery. And every single person is asking you the same questions over and over because they want to make sure you’re there for the right, right procedure. They’re not they don’t have the wrong patient and they’re just double, triple and quadruple checking.

AMBER:
Yeah, which I know some people get frustrated with. I always kind of found it reassuring.

JULIE:
Yeah.

AMBER:
Usually when you go in, there’s probably other people there to get their infusions as well. But there was just you.

JULIE:
It’s a doctor’s office, and they have four chairs with curtains for, um, infusions, and usually each chair is occupied and sometimes the nurse comes out to me on a typical day and says, I don’t have a chair for you, but I want to take your vitals, so I can send your order to the pharmacy and we can get you checked in because, it always takes about an hour to get your meds, if you’re familiar with getting an infusion. And there was no one in any of the chairs and also there were no patients there for doctor’s appointments. 

And I asked him, they said they’re doing teleconferencing for all of their appointments, especially the follow ups which are just simple. And when I got to my chair, I said, but what about the patients getting infusions? They said, oh, they’re all in the exam rooms, which are usually occupied by patients visiting the doctor.

AMBER:
That makes sense. So they were doing the infusions in separate exam rooms.

JULIE:
Mm hmm.

AMBER:
You just happen to be in the infusion area.

JULIE:
Yeah, I just happen to be the only one in the chair, like we’re trying to keep everyone as separate as possible,

AMBER: 
Right. They’re having to sort of figure this all out on the fly. But it’s a good thing for people to know, in case they go to get an infusion. And it’s a similar situation, it’s possible that you could be in an exam room and not in the infusion area.

JULIE:
I mean, I would, you know, just be patient with them. They’re working as fast as they can with what they have. And they’re trying to adapt to the situation. So if it’s not the most comfortable situation, I’m sure they’re trying to find something better, but this is maybe what they all they have right now.

AMBER:
I agree. You’re totally right. We all have to have a little more patience during this time. I think people with IBD actually do usually have a lot of patience with this stuff. Because we’re so used to it, unfortunately. At what point did they give you a mask to put on for yourself?

JULIE:
I came with a mask. They did not give me one. I have supplies from last year, I was on TPN. And you have a dressing changes. So I had masks from all my medical supplies that had been delivered. And I had, I didn’t have a lot but I had some, I brought that extra masks that I had with me and gave them to my nurses because I’m like, I don’t, I only, I just kept one. And I’m like they’re on the frontline. They’re dealing with sick people. And I know there’s a shortage so I brought them and then I said give them to whoever needs or take them for you guys and just do what you want with them. I don’t need them. They’re they’re not doing anyone any good in my closet. So they were really excited about that. And they all had masks, masks on. 

And honestly the only thing that mask does for me is it keeps me from touching my face. Because it’s there’s no filter. But it did keep me from touching my face when I was out and about and touching things and it’s just what we naturally do. So that’s why I wore it and I pretty much kept on at all times. And it was very annoying. If anyone’s ever worn one of those, they’re not comfortable at all. It gets warm because you’re just smelling your own breath. And, and so I really felt for my, you know, you’re breathing on yourself…

AMBER:
You can smell your own breath. So brush your teeth.

JULIE:
Yes!

AMBER:
That’s the first tip for everybody: brush your teeth before you put one of those on.

JULIE:
Or bring some Altoids or something, you know. Thankfully, I was prepared cuz I’m used to wearing those masks when I used to do dressing changes. So I’m like, okay, make sure my breath smells good. Because I’m gonna be out there for at least 3 or 4 hours wearing this thing. So I want to be as comfortable as possible. But I immediately felt so sorry for my nurses who had to wear this all day. And I asked them that I said, Are you allowed to take it off? They said “nope.” We have to wear it all day. Every single person in that building was wearing a mask.

AMBER:
I’ve seen a lot of different workarounds on Twitter that people are using to avoid having their ears get chafed by the by the mask going over there, the back of their ears, all sorts of stuff. Using buttons, using paper clips, just all sorts of things to avoid that. And then I’ve of course seen people take pictures of their face after they’ve been wearing PPE all day and you know, it’s obviously doing damage to their face bruising and and that type of thing. So…

JULIE:
I didn’t even think about that about the ears.

AMBER: 
Yeah, because if you have to wear it all day, every day…

JULIE:
Yeah.

AMBER:
It might start to wear away at that skin. They’re not meant to be, you know, super comfortable to be worn for so many hours in a row like that.

JULIE:
Correct.

AMBER:
So you’re at the infusion center for how long?

JULIE:
About total 3 hours. Yeah, my infusion itself is about 30 to 40 minutes, but the time it takes you to check in and wait for the meds and they usually flush your line for a little bit after the whole process for me usually takes about 3 hours.

AMBER:
Was there anything else different about this visit as far as actually getting the infusion from different visits or was it pretty much the same?

JULIE:
It was pretty much the same procedure. It was my same nurses They usually I am a difficult stick for IVs. So again, they all come, they all of them come to look at my veins, because it’s a team effort really to start a line on on myself. So, um. So they all know and they all know where my good veins are. They all, this exact same procedure, apart from them wearing masks, and apart from no one being around, pretty much. Yeah.

AMBER:
How did you feel throughout?

JULIE:
I felt the facility, they were handling it appropriately and especially keeping the crowds away. I mean, you know, just like I said earlier, this place is mobbed all of the time. It’s a very busy area. And just to see that there were not other patients around was comforting that they were doing their best to keep the crowds down and just get to the people they needed to get and it didn’t interfere with my care.

AMBER:
That makes perfect sense and also that people were clearly physical distancing, people weren’t out driving around and things like that.

JULIE: 
Mm hmm.

AMBER:
When I see people posting pictures of empty city streets, in New York City or similar. It is a little eerie to see that, especially when you know what it looks like on a normal day. But seeing them empty, like you want to see that right now, you know, because that does mean that people are physical distancing and taking everything seriously.

[MUSIC: About IBD Transition Piano]

AMBER:
Do you have any tips for anyone whose infusion is coming up? And they’re going to be going to their infusion center or their hospital or their doctor’s office. And they might be going through some of the same protocols and the same procedures that you experienced this time.

JULIE:
Definitely call your facility to find out what their procedures are. You may already be getting a notice from them. But definitely call to know what to expect. You know, expect a line of questioning multiple times when you get there. Expect that you’re not allowed to bring anyone with you. And you know, just don’t be too anxious. They know what they’re doing. They’re doing everything to keep you safe and most importantly, don’t skip your infusion.

AMBER: 
I agree completely.

JULIE: 
I mean, you cannot risk getting a flare up, especially right now when healthcare is stressed enough as it is. So I think we need to do our part as much as we can. We know it’s not all in our control, but do our part to stay as healthy as we can. So the health care workers can get to the sickest people that they need to get to right now.

AMBER:
Julie, is there anything else you want to add?

LUNA THE CAT:
Meow!

JULIE: Luna just added something

AMBER:
Or does Luna want to add anything? Hi, Luna.

JULIE:
She’s bathing by my foot and she just, I don’t know decided to talk. Hello. Yeah. So along that lines, also, just be prepared that you won’t be able to bring anyone with you. Because I always have someone with me because I can’t drive after. And my mother-in-law usually brings me to my infusion treatments because she’s retired. But she’s also 65 and she called me last week and said “I don’t think it’s a good idea I drive down there.” She lives an hour away from us. And we were like absolutely not: stay home. I had already gotten my mom to take agreed to take me before she got furloughed out. She was going to take a day off, but she works in the hospitality industry. And that’s been shut down here in Miami.

AMBER:
When you were finished with your infusion, how did you get in touch with your mom so that she knew you were ready? Did you have to do that yourself? Or did they have any kind of protocol in place to help you with that?

JULIE:
They could have called for me, but I was awake. So I called her I said, Oh, I’ll be done in 20 minutes. Thankfully, she doesn’t live far from where I was, and with no traffic, you know, it took her 15 minutes to get there in a normal day would probably would have taken twice that long. So I knew I didn’t need to give her a big heads up. And as soon as my treatment was done, I gave her a call. By the time they finished flushing my line and taking my line out and discharging me and setting up my next appointment. 

I went downstairs I, um, right before I got outside to the main entrance. I saw the staff again standing outside and I was in the reception area and there was no one there and I went and asked them I’m waiting for my ride. Can I sit inside? Is that okay? Because I didn’t know what their rules were in place for preventing people from standing around and they’re trying to prevent people from congregating. There’s no, that’s fine, what? What car is it will let you know when it pulls up. So they were being as helpful as they could to get everyone in and out as safely as possible.

AMBER:
Well, I’m glad you got your infusion, and then it was relatively incident free, just a few little extra things that you had to do. And thanks so much for agreeing to talk to me about this. I think that your tips and your experience are really going to help a lot of other people who might be anxious about that receiving their infusions at this time.

JULIE:
Oh, I do want to add one thing, allow for extra time, because they are keeping people separate. So that’s going to take them extra time to get through everyone. There may be a check in process at the entrance and then again, when you get into your office or however your facility works, so definitely allow for extra time.

AMBER:
Perfect. Thank you so much, Julie.

JULIE:
No problem.

AMBER:
Bye

JULIE:
Bye.

[Music: IBD Dance Party]

AMBER:
Hey, super listener. Thank you to Julie Kennedy of “The Sick Adventures of a Semicolon Girl” for agreeing to talk with me last minute in order to share her experience in receiving an infusion in our current situation of physical distancing. Also thanks to her husband, Kevin, for his technical support and to Luna the cat for her invaluable input. She’s a pretty kitty, and you can see photos of her on Julie’s Instagram, which is semicolongirl. You can also find Julie on Twitter and Facebook as semicolongirl and her blog is thesemicolongirl.com .I will put all of Julie’s information in the show notes and on the episode 67 page on my site, aboutibd.com

You will also find links to all my sources for the information in this episode in the show notes. For more updates, follow me as aboutIBD on all social media or check the COVID-19 page on my site at aboutIBD.com. And as always, don’t take my word for it, check with your healthcare team about anything in regards to your IBD.

Did you know you can help me keep producing this show? It’s easy to do! All you need to do is subscribe in your favorite podcast app and leave a review there. If you’ve already left me a review, thank you so much.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Sound engineering is by Mac Cooney and theme music is from Cooney Studio

1 thought on “About IBD Podcast Episode 67 – Tips on Getting An Infusion During the Pandemic

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