Hello, everyone, welcome back to Slice of Pie. This week's episode, we are exploring the social, emotional side of navigating infusions. I am joined with a fellow primary immune deficient patient, Christina. Hello, Christina. Hello, Brian. Nice to have you. Thank you so much for joining us. Thank you for having me. Pleasure. Could you briefly tell me about yourself? Sure. So as you mentioned, I am a primary immune deficient patient. I was diagnosed when I was about 12, 11 or 12 years old.
And I mean, up until then, my entire childhood was fraught with sicknesses in and out of hospitals, bronchitis, pneumonia. The like, and then so finally, around the age of 11 or 12, I became I got diagnosed, I started treatments doing IBG, so immunoglobulin therapies through IV at the hospital once a month. That continued for about 15 years. And then I started looking into the possibility of doing subcutaneous treatments switched over. And so that's where I am at now also.
So outside of primary immune deficiency, what does your life currently look like? What what is work? What is it? It is a weird question to ask in the current context, but it nonetheless. So my life right now is basically like a hermit. I don't leave the house. OK, so I'm an environmental consultant in a private consulting firm. Awesome. And mostly for the mining industry. I do enjoy extracurriculars like music. So I play violin and I'm playing a couple of bands.
I've recently become a plant mama thanks to the PennyMac. And yeah, just basically, like I said, spent a lot of time at home, try to get outside when possible. I really enjoy camping and being outdoors. So in the summertime that's that's a big pastime of mine as well. Awesome. All right. I have to follow up questions one and I now realize it might be a it might be a pretty bad question, but, uh, woohoo!
Of all your plant babies, which is your favorite and I realize it's like maybe this is a bad way, but. But like what? Which one stands out or a few. So I do have a fiddly fig that I'm pretty proud that I've actually kept alive a little bit history there. I had a fiddly fig a few years ago and it died within a couple of months. And so I'm pretty proud of myself for for the fact that this one is still alive and actually growing new leaves.
So also because it's called a fiddly fig and I and I play the violin like the fiddle. So I feel like some some sort of connection there that actually Berbick because I was wondering, why did she out of all the possible instruments y y y violin. Oh, that's a good question that goes back to when I was, I think, four or five years old maybe, and I was watching Sesame Street with my grandmother.
Hmm. And there was a violinist that came on the screen and she sat down with me and pointed me towards the screen and told me, you know, this is a violin and this is the kind of music that it plays. And apparently I just kind of snuggles into her and gave her a big hug. And then it was kind of sold from then on that it was the violin. Oh, my God, that's amazing. It's it's funny how it is these like small moments that, like, deeply impact the course of our life. Mm hmm.
I would love to know more about your infusion journey thus far. And I want to acknowledge before we get into it that infusions are different for everyone and how people navigate them, how they experience them, how they are emotionally, spiritually, psychologically and physically react to infusions is all very different. I want to welcome that diversity and acknowledge that this is your story and your infusion journey.
Christina and other people might have some areas that they overlap and they have resonance, and that's great, but it's one experience of many. So with that in mind, I'm wondering I'm wondering if you can tell me about the experience of your first infusions. Sure. So I grew up in a somewhat rural ish town, so population of forty five thousand, not so tiny, but far from any significant health centers.
Yeah. And so when I was diagnosed, the testing that was done that allowed for the diagnosis was at a children's hospital about an eight hour drive away. Oh, wow. And so, you know, I was diagnosed, I think, like late summer or early fall around there. And then they decided that we that I would need to have treatments, the IV treatments. However, they wanted the treatments to be in their hospital for, I think, the first three treatments, monthly treatments.
So for the first three once a month, we had to drive down as a family to the hospital to take do the eight hour drive, have the treatment for, I don't know, four hours or so, probably stay overnight and then drive all the way back. So the first few treatments were for pretty long. Yeah. And then after that, I was allowed to do the treatments at the regional hospital. Mm hmm.
I'm wondering, it was a long time ago, but I'm wondering that how did you feel on that like eight hour drive to the hospital? Do you remember that? Well, I mean, as a kid, it's kind of like a family trip. Yeah. So there's some excitement there. And the children's hospital is obviously also very exciting because it's brightly colored and lots of cool things to look at and also because they have video games. Right. Sort I've. Yeah, absolutely.
And so it was actually like they did a really good job of, I think, making young patients, children feel at ease, you know, and making it not so scary at all. So I don't actually remember being really scared or upset over anything for that hospital or going to that hospital. I do remember it being quite a difference when I started the treatments then at the regional hospital where I lived, because that was in the oncology department, I believe.
And so like not a kids hospital, nothing brightly colored, nothing fun about it. Right. Just probably no video games, no video games. Some videos, though. Hmm. So movies. But yeah, it was it was a bit of a different experience at that point. So no longer really anything fun. Just kind of something that I have to get done. I have to I have to do this again, you know, and not necessarily something that you look forward to anymore. Um, just something that is a necessity.
Yeah. Something it becomes a bit of a pragmatic kind of element. Yeah. Yes, you kind of compartmentalize your your feelings about it and just sort of get through it, you know, because, you know, it has to be done. Mm hmm. Could you tell me more about that? Like just getting through it as during the first few years, like. Well, so I guess, you know, in the first few years, one of the biggest aspects was that obviously I had to do it during school hours, so I had to be away from school.
And then you get a whole bunch of kids being curious about, hey, where were you the other day, especially when it's happening on such a frequent basis. Mm hmm. And that was also the point at which I discovered that I didn't really like telling people about my immune deficiency. Mm hmm. Because at that point in time. So I think that was like grade six, grade seven for me. And that was about, you know, near the height of the AIDS epidemic.
Yeah, right, so telling people, telling classmates in grade seven and eight or grade six and seven that you have an immune deficiency, it doesn't matter that it's not an acquired one. It's a genetic one. Mm hmm. A lot of kids all of a sudden thought that I had AIDS. Mm hmm. Which which was pretty tough. Yeah. Yeah, yeah. Ten foot pole kind of thing. Yeah. Yeah. So they they did change how they interacted with you. Some of them. Yeah. And it was just the initial reaction of.
Kind of like discussed, you know, that was kind of when I stopped telling people about my immune deficiency. Yeah, I have to imagine that impacted how like what I'm learning through this. This podcast is that disclosure is certainly in my life a complicated thing, but also in everyone's life. And it sounds like that was very formative to your experience with disclosure. Well, I was I was pretty lucky to have, like, a really supportive family and a very supportive group of close friends still.
So I just kind of tried to forget about the other people and focus on what I did have. Hmm. But still, yeah, I for a long time after that, I did not disclose my condition to most people that I met. Yeah. Um, and with that group of close friends, did you, did you disclose to them or um and if so, did they react differently or like what was the difference between those two. I think that they.
They just reacted more patiently to begin with, so it gave me a chance to actually explain or try to explain as well as a, you know, sixth or seventh grader could what was actually going on. And that, no, it's not the same thing as what we learn in school. It's something different. You can't catch it for me, so don't worry. Yeah. You know, and then after that, it was fine. It's just, you know, the other kids don't give you a chance to explain that.
Yes, it is like when you spell it out like that, it's a really small difference, but it is a very important difference. And it is something that also I look for as well, is like when I am disclosing even now as an adult, when I'm disclosing what is the space that people give me, whether that space opens or closes. And if it closes, I think like, yeah, it's a very it also makes me feel uncomfortable as well. Yeah. And you spoke to the.
The changes and impact on your life after starting the infusions, the benefits of it, I'm wondering if you could speak more to, like how the your first few years of infusing, um, impacted your life? I mean, like, I was just sick a lot less. I think it also brought me closer to my family as a kind of like a shared experience. You know, especially after having negative reactions from classmates and and knowing that my family is my support system now for I mean, always was, but especially now.
And so like this is this is a thing that my family knows about and I know about and. It's you know, they're my support system on this one. Mm hmm. And I so I think that brought some level of additional closeness. That's wonderful. I wonder in what ways did they provide support during your infusions? Can you think of any examples that stand out as meaningful? Oh, sometimes they would hang around a little bit for a while or bring snacks.
Yeah, I think sometimes we would actually go out and rent movies from from Blockbuster, if you remember those days, to actually bring and watch. So that was that was an event, you know, related to the treatments. Mm hmm. It sounds like they went out of their way to like normalize it. Like make it. Would you say that is a a fair like in the sense of making it kind of a human experience, not just fully focused on infusions? Yeah, no, I would say that's pretty accurate. Yeah, that's awesome.
Hey, everyone, I just want to jump in here. We are talking a lot about the complexities of living with primary immune deficiency. And I wanted to make sure that you knew that Sepo offers a wide range of services tailored to meet the needs of immuno deficient patients like you, me in particular. I wanted to mention their peer support program, which matches patients or caregivers with people that have lived experience of navigating the complexities of having primary immune deficiency.
It's a great program for people who are newly diagnosed or those who are just looking for a little extra support. If this sounds like a program that you would like to connect with, you can reach out today by emailing support that support, that is support at IPO gutsier. The best part is they are committed to making sure you have a response within 48 hours.
So kind of zooming forward, as it were, we were talking about the first few years of you infusing, I'd like to jump forward a little bit to like maybe five years after were after you started roughly. I know for me that as I transitioned into being a young adult, the, um, my experience of effusions changed a little bit. Would you say that that is a similar experience for you? Definitely, yeah.
So moving from high school to university, moving away from home, I went from having health care that I basically relied on other adults to provide for me, like make the decisions. And I you know, it got to the point where I knew the health care team well enough over those years that it was a very trusting relationship. Right. And then I had to go and navigate the health care system by myself on my own. And, you know, I did have some support from the children's hospital.
They would set me up with whatever specialist, but it was never the same as the way that it felt when I was going through this as a child or going through high school. Um, you know, I would I didn't really ever look forward to the to the infusions anymore. I was just kind of I learned to kind of enjoy that time with the nurses and and the health care team as I was growing up. Um, and yeah, like you said, really normalize it.
And then as soon as I got to university, it was like having to fend for myself and not knowing quite what to say, not knowing quite what to do, you know, and because I actually switched universities, so I, I transferred to a different university halfway through my undergrad. So I was actually moving around every two to three years. Oh wow. Um, for about ten or or so years. And so there was never really a chance to get to know the teams.
It was just like I would show up and feel anxious and uncomfortable. Mm. And just like not really at ease and not really know what's going to happen, just kind of like sit there and get through it and you know, hope that everything goes OK. Usually I don't really remember seeing like the doctors wouldn't come and see me. Yeah. Um so it just it felt very kind of like isolating and alone, you know. Mm hmm. Mm hmm. Like specifically the like the lack of that trusting relationship.
Yeah. That makes a lot of sense. You said that, um, it felt isolating. And, um, I'm wondering, like in terms of comparing, like, that trusting relationship that developed and then the other experiences you've had in the health care in that during that time of moving around, I'm wondering what was the differences like? Why why wasn't that present, do you think, from your experience? Well, I just I didn't have the chance to to really get to know anybody else.
Mm. And I didn't know that there are actually other. People out there like how rare but non rare this is, right, so, you know, I never met anybody else with an immune deficiency when I started university and started doing this all on my own. Right.
So so not only are you navigating different systems, but you're also navigating it, thinking that you're alone in in your experience of these systems and not and also really like not getting the impression necessarily that, like, the doctors really care about you. I mean, I know that they do. Mm hmm. But again, like coming from a small town, I had had a family doctor for many years. Right. Like I was well acquainted with them. Mm hmm. And there was that relationship there.
And it's it's really hard to to get that relationship when you're seeing a doctor, maybe like on your initial visit, your initial consultation, and then maybe like a year after that and then a year after that following up and then you're gone like you've seen them maybe three times. Yeah. So it's a it's a factor of time as well. Yeah. And you're also a busy university student and they don't have a lot of appointments like.
Yeah, you said that you, uh, so Im moving to these different systems, you mentioned that you weren't sure what to expect. Was it that, um, was it that each kind of health care system approached the infusion in different ways? Well, I mean, like back home, I got I got the treatment in the oncology department in other cities. It would have been like that the outpatients or, you know, it was just different departments.
And yeah, different specialists that would refer me to the hospitals and different ways of booking your appointments, you know. Hmm. Just kind of never knew what you were going to get when you when I moved to a new place, basically. Yeah. It is interesting how these like when you list them out, they don't seem like big differences. But when you get into a pattern and also in totality, like all these little differences, change your experience of the situation.
And like you said, like the space you enter into affects your experience of it, like you were in an oncology ward in one place and outpatient kind of general infusion kind of area in another place. Mm hmm. Those are very different environments. Yeah. And I mean, also how how far away is it going to be? So for some of my undergrad, I didn't have a vehicle, so I would have to take the bus. So there is that. Yeah. What hours did the department have. Mm hmm. And how busy was it going to be?
You know, at the first hospital that I, I went to when I started my undergrad, it wasn't a very busy hospital. So I usually could get in, like, pretty quickly and get out pretty quickly. All things considered, you know, it's a four hour process. But, yeah, I did also go to another hospital at one point where I would make an appointment for, you know, eight thirty in the morning. So I and I would take half an hour to drive there.
Mm hmm. Thank God I didn't have to take the public transportation for that. I had a car, but, you know, get in there for eight thirty and like. Maybe you're sitting around for an hour or so waiting for the people who maybe happened to come in at the same time or just before you are set up and everything and like, that's fine. And I totally understand. But that's just the kind of thing like how do I plan my life around this as well? Mm hmm.
And I think that and I think that is the thing that's the lived experience versus the I like system perspective where it's like from the system. It's like, well, things are going to run over that. But it is a part of your life at this point, it sounds like. Mm hmm. And so it's like one more thing to navigate as a what sounds like a busy university student.
So we talked about the medical system and the ways that time and space affect relationships and also how you navigate, um, uh, your experience of navigating the health system. I'm wondering, outside of that kind of looking more at your, like, life, um, I'm wondering if you noticed any differences in how you felt about your infusions compared to the first few years of your infusions and then several years later? Well, I think I would say I didn't really think too much of my infusions to start.
And I think, you know, when I got to university, just the more I became to I wouldn't not enjoy them, I guess. Yeah. Not look forward to them. Um, they became more of a burden, just sort of an added stressor that I had to navigate on my own and like really stand up for myself, you know, really. If I was having health issues with with something or I thought that maybe I should be on antibiotics or if I thought I might need a chest x ray, you know, to to go in and actually ask for those.
And, you know, it kind of went one of one of two ways as well. And I mean, to boot, I also didn't really have a family doctor for most of that time. So walking clinics were pretty common for me. But they would either be like ultra cautious with me or just kind of dismiss it altogether. Yes, right. And so just trying to navigate that was was incredibly stressful.
Yeah. You know, just kind of like jumping into that when I went when I left for university and like not having my parents there, they were eight hours away. Mm hmm. Right. So this was all on me. And if I had questions or concerns like I was on me to put them out there. And so that was this was a pretty steep learning curve. Yes. All of a sudden, you have to be the advocate for your health. One hundred percent.
Yeah. And on top of that, it sounds like, um, that like at those attempts of advocacy were not always met receptively. Not always. And so I have to grow a backbone and just keep pushing that. I think that is uh, I can relate to that. But that. I'm sorry, that still is unfortunate, and I'm I'm I'm sorry that that was your experience. It has also been my experience at times, but ideally, that isn't how it should work.
Yeah. I mean, I can think of one particular instance that really, I think allowed me to grow most well was when I was actually going for a treatment for an IV treatment. And at that point, because I had been doing IV for so long, I had a lot of scar tissue on my hands. Right. So it's really hard for them to thread the veins in my hands. Yeah. And so they decided that they were going to start maybe putting the IV into my forearm. And I had never had that done before.
So I kind of thought, OK, we'll give it a go and see what happens. Mm hmm. Test it out. And the so after being picked like three or four times in the hand and not getting anything there, they they tried once in my forearm and it was incredibly painful, like more painful than I'd ever experienced in my hands. It didn't work. And so they tried again in a different spot in my forearm. Same thing. It didn't work. And it was very painful. Mm hmm.
And then so after that second time, I said, you know what? That's that's it. Like, I don't want to have it in my forearm anymore. Mm hmm. And then so they put it instead, like in the underside of my elbow. Oh, like the AC. Yeah. Yeah. Which worked out fine. And then I actually ended up developing like two huge bruises on my forearm where they tried to go in.
And so it was kind of at that point where I was I thought to myself, you know, I have to I have to speak up like I can't just if something is not going the way that I want to do. Mm hmm. Then I have to be the one to speak up. And that was from then on, if anybody ever said, OK, we can't, we're having trouble threading the veins in your hands, you go elsewhere immediately. You cannot do my forearm anywhere, anywhere but my forearm, you know, just that kind of thing. Yeah, it is.
Um, I mean, like you you live in your body, you know, your body. Right. And, um. Yeah. But it is hard to develop that like. Those like assertion, but it does get to like that story in particular, very much resonates with me. It gets to a certain point where you're like, I don't know why I like. I can't continue to just endure the pain, like, yeah, why am I putting up with this? Mm hmm. And why indeed. Exactly like why? Well, I don't have to.
Yeah. But I will say, like, it is still even though, like, I don't know about you, but in reflection, it is easy to make these these assertions like, oh, now I like now I'm much more comfortable asserting, albeit not still perfect. But I think it is easy to overlook in reflection the fact that it is like in terms of power. It is if it is overwhelming, you're kind of advocating from like the lower side of that power equation. Mm hmm. Which is really hard. It's tough.
Yeah. And not everyone is open to listening to you. Mm hmm. Yes. And as you spoke to, not everyone believes you and will dismiss you. And I think I don't know about you, but like that that in particular is like particularly brutal and annoying. Mm hmm. Thank you for sharing that story. I really appreciate it. So moving forward to, um, know that you're now I say now over the like let's say the last, because the pandemic is a unique situation, like in the last, um, let's say the last two years.
What do your infusions look like and how are they different than previously? OK, so so I started subcutaneous treatments about almost six years ago now. Well, um, which was I'm like so happy that I did that. It's it works so well for me. Um, and I mean I got into it because I did start my job as an environmental consultant and it just wasn't feasible for me to be taking a day off for infusions once a month anymore because, you know, you only get so many sick days.
And then what happens if I actually get sick? I don't have any left over. Yes, so there's that. But also, you know, as an entry level junior consultant, I really wanted to be able to say yes to opportunities like traveling to other offices or going and doing field work. And when you're on a monthly IV schedule, sometimes that clashes and it just doesn't work.
And I didn't want to have to say no to those opportunities just to keep my appointment at the hospital, because often, um, if you cancelled a hospital appointment, you couldn't get in for another month or two or three. Yeah, right. So that made it really difficult to have a flexible work schedule. Mm hmm. So I started looking into the option of doing subcutaneous treatments because I sort of heard about it.
But I had always had the impression that it was just something that they did over in Europe. And it wasn't really in Canada yet. Yeah, there's vague rumors of this thing called. So I will say I also had heard I still like when I think back, I don't know who was who was talking about these rumors, but there was always this like for years, this rumor. So, um, so my specialist at the time, I think set me up with one of the other specialists in the area that did subcutaneous treatments.
I had one appointment with him before I moved to a different city. So I never really got set up with subcu in that in that previous city. Yeah. But then came here and got in with an amazing health care team. Um, it makes a big difference. It makes a huge difference. Um, yeah. I have somebody who actually like who read through my entire file and learned everything about me and was actually able to answer my questions and like, for instance, told me, you know, you can actually get some vaccines.
Haven't hadn't had a vaccine since I was in grade three. Oh, wow. That's that's kind of a big, important thing, if you can. Yeah. So so that was kind of a big light bulb moment as well. And then they also have a dedicated nurse to train for subcutaneous treatments. Mm hmm. So I started that about a month after I moved here and kind of like never looked back because it's just amazing being able to do the subcu subcutaneous treatments on my own. First of all. Mm hmm.
So I don't have to go into the hospital. I don't have to take time off of work because I can do them on my own schedule. Yeah. Um, and because I can do them on my own schedule, I don't have to say no to any work opportunities as well. Mm hmm. So I can basically work around my life. I can basically I can live the way I want to and work. All of my health care around how I want to live. Yeah, which is kind of the opposite of how it used to be. Yes. Of working my life around my treatment schedule.
Mhm. It is. It sounds like a small change, but it makes a world of difference. Yeah. And it's only about an hour a week. Right. So it's not even a huge time commitment and there's still the flexibility of if I know that I won't be able to do a treatment for a couple of weeks if I want to travel, for instance, I can just sort of do two or three treatments in a row kind of before I go get that all in and then know that I'm relatively protected while I while I'm traveling.
Everyone, I think, has their own approach to what they do during confusion. What do you do while you're at home infusing for that hour? So I usually get a drink that I want to drink ideal, whether it is like a Coke or a hot chocolate or a cup of coffee or whatever, something that I know is going to bring me comfort, maybe a snack also that I know is going to bring me comfort and sit down and put on the Netflix and.
Yeah, just kind of joke and have a little bit of, you know, me time disconnected from everything else and. Yeah, yeah, that like disconnection and kind of like focus on self is seems like a common theme and certainly one that that I resonate with as well. So I'm wondering just quickly, what is if you could go back in time and talk to yourself just prior to your first infusion and give your younger self a piece of advice? What would it be?
Uh, I think it would be just to know that there are other people out there that have immune deficiencies and that. You know, there are other people that you can relate to. There are people that you can talk to and don't be afraid to speak up for your health care. That's wonderful advice. Thank you. And in wrapping up, this brings us to the last segment, which I always like, because it's a pun, um, which is sweet as pie.
So I'm wondering, what is one gift that you have received from living a life with primary meal deficiency? I think that one gift that I've received from living with primary deficiencies would lie in the connection that I've been able to establish with others who also have primary immune deficiencies has. It's really given me a chance to understand what other people go through and see what our shared experiences are.
I know that I'm not alone and they're not alone either and really just supporting each other. That's been that's been a tremendous gift from my you know, I'm thankful that I've been able to go through it successfully, thankful for the people that I've met, um, thankful for the strength that it's brought to myself and my family. I hadn't thought about that. That's a beautiful gift as well. Thank you.
And in wrapping up the podcast, I also want to thank the Canadian immuno deficient patient organization without which this podcast would not exist. And so thank you again to Sepo. If you heard something today that resonated with you. Feel free to send me an email at podcast at Sepo Dossier. That IPO, whatever you share, we may use it in the final episode and we might share it with everyone else. I'm very curious about your experience.
Obviously, I will only use first name, so just keep that in mind if you do want to reach out. And I hope that you'll join me in two weeks time when we continue exploring the complexities of living with primary immune deficiency in all of its positive and negative complexity. Thank you.