Revée Agyepong is a registered nurse specializing in neonatal intensive care and based in Edmonton, Alberta, Canada. She currently works in the Pediatric Hematology Clinic at the Stollery Children’s Hospital as the Sickle Cell Disease Nurse…which is fitting, considering that until recently, she was living with sickle cell disease herself. In late 2017, she received an allogenic stem cell transplant to cure sickle cell anemia, thanks to her sister’s bone marrow donation. After 25 years of hospital admissions and countless treatments, Revée made history as the first adult in Alberta to receive this disease-reversing — and life-changing — treatment. A member of Not Just You, the Sickle Cell Transplant Alliance for Research and the Canadian Hemoglobinopathy Nurses Group, Revée is passionate about inspiring, encouraging, supporting, and advocating for the sickle cell community. Come along with her on this beautiful story of perseverance, determination, and faith…and help us congratulate Revée as she has just launched her new business venture, inspired by her health experience…a natural home, hair, and skincare line called Rêve Naturals, designed to help others reduce toxins in their day-to-day!
Tune in as Revée shares:
- what it was like growing up with sickle cell
- how growing up with chronic illness tested her faith
- how her treatments developed over time before her remission
- how her health experiences drew her into a career in medicine
- how she became the first adult in Alberta to undergo a stem cell transplant to cure sickle cell
- that her sister was a perfect bone marrow match, and donated for her stem cell treatment
- that she’s gone from sickle cell patient to transplant patient
- that she’s officially sickle-cell-free — and that this strangely sent her into a kind of identity crisis
- that as a transplant patient, she doesn’t fit into the “traditional” model of aftercare support
- that for her, transplant was a choice — but for most recipients, transplant is the only option
- how her sister’s advocacy played a role in inspiring her to be a patient advocate
- how she became expert at playing down her own pain
Lauren: All right, guys, thank you so much for joining us today. I am here today with Revée Agyepong. You might know her from her social media handle, @MySickledCells. Revée is now cured of sickle cell. She's living sickle cell free. She underwent stem cell transplant and is one of the few patients who has undergone this kind of transplant, and is now even working in the field. So she's going to talk to us all about that. Revée, thank you so much for joining us today.
Revée: Thank you so much for having me. Honestly, I'm honored. I'm so excited to be here with you today.
Lauren: As am I. It’s a total honor to have you on the show, and I'm excited to dig into things. So let's go back in time a little bit. Because you're very well now. But I'm wondering when and how you first found out that you had sickle cell, and how life was before this huge change that you've undergone. Tell us all about the stem cells, and everything.
Revée: Okay, so let's go all the way back! Sickle cell disease … because it is a genetic condition, I was born with it. I was originally diagnosed, I think, around the age of two. And honestly, my upbringing was pretty normal; my elementary life was normal. My family tried really hard to give me a normal life and not make me feel different. Especially my sister always wanted me to never feel like I had to live with limits, or anything like that. So in elementary, I had no idea. I knew there might be something, as I was always in the hospital. I always was having to take so many medications around the clock. I didn't really understand exactly what it was, or why this was happening.
Lauren: You mentioned you were diagnosed at two. Did both your parents know that they had sickle cell traits and to look out for that with you? Or did you start experiencing pain or something?
Revée: I guess I was very colicky at the time. I was very sad. I was a smiley baby, but definitely when I became colicky, I was crying all the time. They would go through the regular checks. They’re, like, "This kid is fed. She has slept. She has been diapered. What is wrong with her?” Essentially. My dad has a brother that has sickle cell disease. So I know he knew he had it in his family, he knew he had a trait. But my mom, I don't believe she was aware at the time that she did have trait, because I have two older siblings and they both are well. And so I think it came as a little bit of a surprise.
Eventually they took me to the hospital and they ran some tests — and I was officially diagnosed, and got the stamp that I had sickle cell disease.
Lauren: So then you started taking medication at a young age to manage symptoms?
Revée: Yeah, right off the hop. I don't even remember exactly everything that I was taking, because my parents were managing that for me, but I do remember lots of antibiotics definitely. And of course just the regular vitamins. There was nothing at that time that was any aggressive medication. And so I didn't really know what was going on. Honestly I would go out during recess … I remember this vividly, maybe grade four or five … and run around with everyone else. Then the teacher gets you to line up. I remember lining up and feeling so winded and just exhausted, gasping for air. My chest was burning, my body was in so much pain. And I honestly looked around and thought every other kid was experiencing the same thing. They must be just as exhausted as I am. Clearly, I was clueless!
Lauren: It’s hard to know at that young age, too, because we haven't had enough experience of our bodies to understand that other people's bodies are different. We’re barely aware of boy parts and girl parts at that point!
Revée: I was not aware of anything. I was like, we're all the same. I didn't know.
Lauren: Well, gender is a construct!
Revée: Exactly, I had no idea. It was in junior high, actually, that my sister really was encouraging me to learn more about my condition. Because in elementary, the teachers are a little bit more involved, they know you a bit more. But in junior high, you’re rotating between teachers and classes, and you're a little bit more independent. And so she was saying, "It's very important for you to start learning so you can manage it, and figure it out.” I remember my family telling me the name — sickle cell disease. So I typed it into the Google search bar. And to my surprise, I remember I just cried … because the first thing that came up said the life expectancy was 14 at the time.
Lauren: Oh my God, that must have been really scary.
Revée: I was terrified. I was 12 years old at the time. I just remember sitting on the computer, crying.
Lauren: Also, that's not accurate. Let's just say, that first article that popped up for you … not the norm.
Revée: No, that is not accurate. Also, I was a kid, so I didn't look at the credibility. It could have been written in 1990. I had no idea. I was almost 14 years old and I remember telling my sister, “Well, I'm gonna have to make a bucket list then, because if I’ve only a few years left to live, I'm getting everything done.” I kind of laughed at it. But seriously, I made this bucket list — and I accomplished what I needed to do. And 14 came, and I was, like, oh, we're still going? Okay.
But honestly, coming from a very Christian household, I found my relationship with God during that time was quite rocky.
I’m, like, I'm going to church every Sunday. I'm so confused. A loving God?
Lauren: And, I’m doing everything right. So why should this be heaped upon me?
Revée: I always felt like a very straight-edge kid. I don’t feel like I caused that much trouble. My parents might say something else!
Lauren: I don't know, that bucket list … it depends! (laughs)
Revée: Yeah, that bucket list … it depends! (laughs) It was really tough mentally, and I didn't fully understand or grasp everything. But once I started learning a little bit more about it, then I was, like, okay, so I can understand what these things called triggers are. There are different things that you can do or different circumstances that can actually cause your body to change your regular red blood cells into these sickle cells. And those sickle cells … they're rigid, sticky, they get stuck together and they cause blockages. The more of those you have in your body, the more likely you are to run into problems. And so I started finding out, like, oh, okay, so extreme temperatures. If it's very hot, or very cold, these are things I need to be aware of.
Lauren: And you live in Canada, so that's a thing over there.
Revée: So I needed to learn how to bundle up and be smart. When all the other kids wanted to take their jacket off outside, I had to be smart and understand that I can't do that. Or even overexertion, understanding that, okay, yes, you can participate in gym class. Yes, you can go for bike rides. But then I had to learn my limits. And it did take some time to figure that out. Because also, you're in junior high. You might know your limit, but you don't want to follow your limit. You want to be cool.
Lauren: Yeah, of course.
Revée: You want to be cool! And so, things like that I tried my best to avoid as I learned a little bit more about the disease. And then also learning things like hydration, that drinking lots of water is going to help you. I didn't really understand why my parents were pushing water on me from the beginning. I didn't really understand why. But then as I started to understand the rationale, I was, like, okay, the more water I have, the easier it is for the blood cells to flow through. When you're dehydrated, it does the opposite. Just understanding that okay, I need to carry my water bottle with me all the time. If I know I have a stressful day coming up, I need to take the steps to relax either the day before or the day after. I always had medication on hand when I went pretty much anywhere. I always had pain medication.
My friends all through school could attest to this roommate who always had her water bottle and a bag of pills.
Lauren: Well, us Spoonies are the best ones to get lost with because we always have snacks, too. You can't go hungry!
Revée: Yes, you never know what’s coming next. Oh, man. And so that's kind of what I did to try and control my health and manage as much as I could.
Lauren: Were there blood infusions at that point?
Revée: At that point, no. This was all through elementary, junior high. I was starting to learn more and that was in high school, when eventually I was started on a medication called hydroxyurea. This acts by increasing hemoglobin F you have in your body, and hemoglobin F is protective because it doesn't sickle. And so you're less likely to have sickle cell crises with it. It keeps patients out of hospital. It's honestly a wonder drug. A lot of patients who have sickle cell disease are on this medication. I was. It was good. It did have some side-effects. I had really bad stomach pain with it. It's actually a low-dose chemotherapy agent.
Lauren: Oh, interesting. And we're going to come back to the chemotherapy when we get to your stem cell transplant as well. Everyone has different reactions to different medications, so in many ways, this is a wonder drug. But there may be these negative side-effects, and you happened to experience one.
Revée: Yeah, that one was tough for me. They suggested, “Okay, don't take the medication in the morning, take it in the evening.” But then it was keeping me up at night. And so it was tough. I think the stomach pain was probably the worst, but I just continued to push through it anyway. But to be honest, I only lasted a few years on that medication because it wasn't really showing an abundance of effect. I still was in and out of the hospital like clockwork, regardless of taking it very diligently, regardless of it killing my stomach. And so it was then that I was actually started on the red cell exchange program. What that is essentially, it's like a high-powered blood transfusion. Usually when you go into the hospital with sickle cell crises, they'll just give you one bag. But this is actually a scheduled appointment where you go in; I was going in every eight weeks. They attach you to this very high-powered machine, and they're exchanging your blood. I was getting eight bags of donor blood.
Lauren: Wow, that's a lot.
Revée: Oh, so much, and they were withdrawing the same volume from my body simultaneously. They do this through a very large bore needle. It’s such a process. I was getting a line into my femoral vein every eight weeks.
It was quite painful. They do this awake, by the way; you are not sedated for this line insertion.
And then they take you to this unit and they'll do this procedure. It’s very high powered, though. The apheresis, they call it, or red cell exchange procedure, only takes, I think it's about two-and-a-half hours, which is like remarkable.
Lauren: It’s very quick.
Revée: Yeah. And then after they pull the line and apply pressure, you'll be sent to the recovery room for three hours. Because they're going into your femoral vein, they want to ensure that it clots over before you even stand up. You lie down for so many hours until you can get up and then ensure that it's not going to blow. And then you can go home, because they don't want such a large vessel potentially leaking.
Lauren: You know a lot about this, having experienced it, but you also are a registered nurse. I also wonder if around this time in high school when you started on the red cell exchange program, whether that also inspired you to go into medicine?
Revée: Yeah, definitely my experiences with my health had pushed me into medicine. There were a few other random things I wanted to do before. I'm really interested in design, so I thought about that. But honestly, I found that with all my hospitalizations, the nurses just made the biggest difference for me.
Lauren: That’s what everyone says; it's always the nurses.
Revée: Yes! I wanted to be a doctor at some point. I still love doctors; they’re amazing. But really and truly, I do vividly have strong memories … let's say it's after nine o’clock, and your parents have to go home and you're left alone in this pediatric unit. And having that one nurse who just goes above and beyond, and they'll do whatever they can.
Lauren: They humanize the experience.
Revée: Yes. I don't mind asking for things as well. But sometimes it's nice when, before you even have a chance to open your mouth, it’s, like, “Oh, Revée, I remember you love your warm blankets, let me bring this.” Or the ones that would sit down with you for a little bit; they're doing your vitals and stuff, but they see you're upset and they'll just sit. And just five minutes of human connection is all it takes when you feel so alone and you feel so scared. It's crazy that this whole decision to start me on red cell exchange happened to occur when both of my parents were traveling. And so it was just myself, my brother and my sister here. And my sister was the one who had to make a big decision; at that point, she was my guardian. And so I was really scared, and my parents said, “We’re flying back right now!” And we’re, like, it's fine, we can figure it out. But there was a specific nurse who took so much time. She went downstairs, she showed me the exact line they were going to use for the insertion. She explained the whole process. She showed me everything that I could possibly ask for, just so I could understand the procedure better and really understand what I was going into. And it's crazy because my first red cell exchange actually happened three days before … no, I think it was two days … right before I started nursing school. I had already been accepted. I think it was the anticipation and the stress of starting this big program that really triggered a bad sickle cell crisis over that winter break. And then I started this new procedure, and I was, like, oh, my goodness, things are changing so fast. What's happening here?
Lauren: Which is often also what happens among we chronic illness patients … going to university, it’s that line where life stops being the same rhythm, this predictable rhythm where you're being taken care of by your family and what have you, and you're on your own in a new way. And in many cases, we are also encouraged to overwork and under-sleep and all this kind of thing. These kinds of crash-worthy behaviors that we often undergo in university. So it's very interesting that it was around that time that you were transitioning into this program and going into nursing school. Really fascinating.
Revée: Yes, oh, it was a crazy time. I'm just so happy that I was able to pull through. I ended up being on the red cell exchange program for a total of seven years.
When I look back, I’m, like, how did I manage this? Because I was doing it all through nursing school.
I remember, I would try and schedule it. I’d have to miss some days of school, unfortunately, but it is what it is. But the nurses would laugh at me and say, “You are dedicated.” Because I’d bring my school books and study while I was hooked up, because I was, like, well, that's literally a full day.
Lauren: What better way to be absorbing information about the medical field than while you're in the doctor's office.
Revée: Exactly. And also the nurses that took care of me were so nice. I loved them all; these apheresis nurses are amazing. They would even provide me with specific examples about their own life. It was really nice. But, I think it was about five years of being on this program, my femoral veins actually completely scarred over and they were no longer able to get a line. It became extremely painful — because everyone knows, trying to push anything through scar tissue is next to impossible, and incredibly painful. And so then I was approached with the idea to get a double-lumen Vortex. It's essentially like an IVAD, same idea as an IVAD, a port that just sits on your chest. So this one was going to be buried into my breast.
Lauren: It’s sort of like a central line.
Revée: Yeah, they'd have to access through my skin and so it would just stay in forever, until pretty much it stopped working. For I guess the next two years, I was using that, which was nice though because it made my days a lot quicker. I didn't have to go to the OR anymore to do all that pre-work; you literally just showed up at the apheresis unit. You put your numbing cream on first, of course, and then they would poke you and do everything. So you'd have your regular two-and-a half-hour procedure. And then after that there was only about a 10-minute waiting time. You didn't have to wait for anything to clot over because of the port. Once you take everything out, the valves are closed.
Lauren: This whole ‘fail first’ mentality that we have around medicine … you have to go through the more painful, more invasive experience of letting your femoral vein then scar over. What if you need access to that in the future, too? And then you're given this port. So it's interesting to me that that wasn't offered as the first option, which probably would have been a lot more comfortable for you probably because it's an invasive procedure to get it installed, I guess. But in a way, that was a better way to go anyway.
Revée: Yeah, that that ended up being the best way to go. It is interesting because I do wonder though, as wonderful as this port was, if they had tried to offer it to me when I was freshly going into university, I feel like there would be a fear surrounding it. Just because of the body image that came along with it. As I got older and matured a little bit, I realized that it is what it is. It’s low enough so you don't always see it, but definitely if I wear a tank top, it's very visible. It's always a conversation starter. People are, like, “Hey, what's that? What happened to you?”
Lauren: Well, and that’s another whole can of worms because people think they have the right to ask questions like that!
Revée: Well, I've been asked by random people. I remember going on a trip with some friends and a random person actually asked me, “What happened to you? Did you get into a bar fight?”
Lauren: Oh my God … “Do I look like I get into bar fights?!”
Revée: (laughs) I was, like, “Not quite. But whatever you say.” I just left it alone.
Lauren: You need to start saying, “You should see the other guy.” (laughs)
Revée: (laughs) I should! “You should see the other guy. You should see him!”
Lauren: You need a one-liner answer. Ilana Jacqueline, who's been on the show … she made a business card to hand to people: “I see you looking. Here's what's going on.” A lot of us go through that and we need to have a canned response because we get this question so often.
Revée: I never came up with one. A few people have told me. My sister probably told me, “Just come up with a response.” But I just never thought about it.
Lauren: Well, you had a life to live. Why should you be taking the extra time to answer other people's questions that aren't any of their business anyway. That’s the other side of that argument.
Revée: Exactly. That’s the other side of the coin.
Lauren: Yeah. So this was then seven years. You did the five years with the femoral vein, the two years with the port, and then what happened at this point? You'd graduated nursing school, I presume, as well?
Revée: Yes, I graduated nursing school. I was working at that time, I was working full-time in the NICU, and I was loving every second of it. I would finish my night shift at 7am and then go straight down to the apheresis unit, get my exchange, I'd sleep during it, and then I would go home. I had a system and everything was working well, and I felt pretty good also.
I was really proud of myself to be able to work shift work full-time, and not really be feeling any of the effects of it.
Lauren: And not be in crisis.
Revée: Yeah, most people would be struggling with that anyway, because nights are hard. Red cell exchange really and truly did change my life in the sense that I had the opportunity to finally feel normal. I could actually run, I could go to the gym, I could do all those things. Yes, you still have to be careful and you don't want to over-exert yourself, but just getting that new fresh blood, you actually did feel very renewed. But then that feeling faded off after a while. Because I was on it for so long, I think after a while, your body gets used to it. My body still was producing so much sickle hemoglobin, no matter how often they did this. And I think they actually decreased my intervals, so rather than going eight weeks, it was, like, let’s try seven weeks or let's try six weeks to see if maybe that helped. But I was finding probably just a few weeks after, by the four-week mark after my exchange, I was already starting to feel pain. I could feel that my bones were aching. I was, like, this doesn’t make any sense, and it just got progressively worse — and then it it became hospitalizations. Then it turned into, okay, I'm on this treatment. This is the top-notch, highest degree of treatment you can get for sickle cell, and I'm on it, and what is going on right now — I'm still in the hospital. So my doctor then suggested, “Okay, I know you don't like hydroxyurea, and it didn't work. But let's bring it back. And maybe in conjunction with this, you'll be better.” And so I was, like, “You know what, I'll try anything at this point.” I tried it and it still wasn't really providing the relief maybe he had expected at the time. And then on top of that, I started having other issues related to the amount of blood I was being exposed to. Red blood cells have a lot of iron, and I was getting a lot of issues related to iron overload.
Lauren: Yeah, this can often be digestion issues.
Revée: It was a little bit of everything. I also was experiencing … they were finding on all of my diagnostic imaging that I was starting to get buildup of iron in my organs, and they’re, like, “This is not a good thing.” So they started me on another medication, iron chelator they call it; this medication will decrease the amount of iron in your body. Also this medication does destroy your stomach.
Lauren: It’s a lot of mixed medications with side-effects. It isn't unusual for someone to be on multiple medications and to be dealing with multiple potential side-effects. But when those side-effects start really kicking in … ok, they don't with everyone, but obviously that was happening with you. What choice are you left with when your quality of life is going to suffer if you continue on this life-saving treatment?
Revée: Yeah, it was tough because I'm like, this is ridiculous, I'm on the highest degree of medication and treatment, and I'm still not feeling well.
I think I was in the hospital about five times in seven months; and I was, like, this doesn’t make sense.
I'm taking so much. They're doing the best. I think it was at that point, I started hearing a little bit about transplants and started doing my research. And my family was doing the research as well. My sister actually had done a lot of work on trying to figure out … she was my biggest advocate, she was always doing so much work in the background and behind-the-scenes to make sure that I was well and doing whatever she could. And I remember I found out that they were doing transplant for sickle cell in Calgary, which is 3 hours away.
Lauren: This is a relatively new treatment. But because it's being offered to the more severe cases of sickle cell at this stage, what we're seeing is amazing results.
Revée: Amazing. And so I was, like, I’ve got to get my hands on that. How do I qualify? What do I need to do? And I was very deflated and very discouraged when I found out that they were only doing children at the time and they were not interested in expanding to adults. I was 20 or 25, barely an adult. I pitched it to my doctor, “I’m barely an adult right now!”
Lauren: It’s interesting that they were just doing children. I wonder if it’s because they heal faster?
Revée: It’s partially that kids have better bounce-back. And also they have better outcomes. Because when you irradiate someone and you give them chemo and all that at a younger age, their likelihood of having complications is less than when you have someone who's older and more rickety and broken-down in different ways already.
Lauren: Speaking of which, can you give our listeners a little bit of background now? Because they're probably going … wait, you said stem cells? Now you're talking about chemo? How that works? Because it's a process of undergoing chemo in order to take on the stem cells, correct?
Revée: Yes, exactly. So the process of bone marrow or stem cell transplants, which are kind of used interchangeably, is … essentially you get a certain amount depending on what protocol it is. Mine was five days of chemotherapy. Some people's can be up to maybe, I don't know, 10 to 14 days — depending on whatever they're getting. I'm not 100% sure.
Lauren: So this is a relatively short period of chemo, because if you're treating for cancer, for example, you're going back for a series of weeks of treatment. So this is very different.
Revée: Yes. You'd be admitted to the hospital.My protocol — mine was five days of chemotherapy, and then I had one day of total body irradiation. A lot of people know about radiation and people know with certain cancers, maybe you get radiation in a specific area.
But this was head-to-toe, your whole body was gettin’ fried, everything was getting kind of killed on the way.
So that pretty much just provides a fresh or a clean slate for the stem cells to come into your body and find a home within your bone marrow. It just completely gets rid of everything that's there, or as much as they can.
Lauren: They basically gave you a restart.
Revée: Yeah, they pretty much do.
Lauren: You mentioned that you didn't qualify initially for the program. So how did you eventually end up qualifying and getting the treatment?
Revée: My sister actually contacted a hospital in the States that was doing it. And they were willing to actually take me on as a patient because it was under a study. And because it was under a study and research, I would even be able to get some funding from them to go. And I was like, oh, perfect!
Lauren: Which makes a difference, because in Canada, your healthcare is subsidized. So you're generally not paying nearly as much as you do in the States. So that's really wonderful.
Revée: Yeah, I definitely wouldn't be able to afford it in the States! So as I started collecting a lot of information, because they needed all of my medical records and everything, I went through a process of trying to collect all of that. And in this process, my hematologist actually caught wind of what mischief I was up to, and he brought me into the clinic because he was, like, "What is going on? What are you doing?” And I said, “Well, if you guys can't do it, I'm going to get a transplant elsewhere.” And he was very opposed to the idea. At that point, he had already been my doctor for at least six years. So he knew me very well. We had a very close relationship. And I think there was a part of him that was, like, no, you're a great patient. I don't want to lose this patient.
Lauren: And this is still a very experimental treatment at this stage, too. Especially for your age group.
Revée: Yes. He was not willing to have me as … I guess, I don't know … I wouldn't say scapegoat or anything. But he didn't want me to be one of the first, and so he was just kind of like, “Maybe not the best idea.” But with persistence, and when he saw how serious I was, and he saw that whether they were going to help me or not, I was going to do it, he was, like, “You know what, let me just reach out to the people in Calgary, see what we can do.” And he actually sent the referral to the adult team in Calgary; they do oncology bone marrow transplants and I would be their first sickle cell adult. And they accepted me and I went down to Calgary. And I provided all my information. And they were, like, “Okay, make your decision — now that you know all the facts.”
Lauren: Those poor suckers back in the US! So you ended up getting it all done at home. That's great, though.
Revée: Exactly. I ended up getting it all done here.
Lauren: When was that, what year was that?
Revée: That was 2017.
Lauren: So not that long ago. And this is still a treatment, it still continues on. But still a very small percentage of people living with sickle cell are offered this treatment. Again, the really extreme cases.
Revée: Actually, tiny.
Lauren: So you were very lucky that you had your sister as an advocate, and your own knowledge being inside the medical system — that you were able to do your own research, know what was viable information, and also be persistent about getting it done.
Revée: Yes, persistence was key. Because I think a lot of people, they don't always have confidence in the information that they know. Because I knew what was out there, and my sister knew what was out there; I knew it was available, I knew it could be done. And so I was able to push.
Because sometimes you can't push when you don't know what you're pushing for.
Lauren: Very well said.
Revée: Why, thank you. But no, honestly, I do feel like you can't just be, like, “Oh, I need some treatment.” You have to be: “This treatment, I can do this.” Or, “It can be made available this way. This is how it's feasible.” You have to come with all of the information as well. I honestly feel like I am so blessed that I went through nursing school and I was already working in the medical profession. And I was interested in knowing more about sickle cell disease on my own. I was just constantly trying to keep up with … what are the new meds, what is this …what is that? So I was able to then eventually advocate for myself — and now, advocate for others.
Lauren: Yeah, which we're gonna get into as well. So you've now been three years sickle cell free.
Revée: Yeah, well, my two years would have been November. And so I'm three years in November.
Lauren: In November 2020, you'll be three years, which is an incredible anniversary to be celebrating. And as you told us, you went through a fairly short-term process to get the stem cells placed. I know certainly on your social media feed, you've posted photos of yourself during treatment, and it wasn't easy. It doesn't look like it was easy, but here you are on the other side and testing free.
Revée: Honestly, I thank God for that. The day that I actually found out that I was sickle cell free was just the most amazing day ever, because November 9, 2017, was my actual transplant date where I got my sister’s cells.
Lauren: Oh, it was your sister who donated? How gorgeous is that!
Revée: I'm telling you! Actually, it's interesting how this all happened because they pretty much told me, “You can't go forward with transplant until you have a match.” And with sickle cells, because this is so experimental and so risky, they were only going to do family matches. They tested my brother and he was a no-match, and we're closer in age. And so they're like, oh …, okay, well … My sister is 11 years older than me, and so I was pretty much, like, well, whatever, it's not going to work. And she ended up being a 10 out of 10, a perfect match. Which is crazy, because they say you have I think it's a 25% chance that you'll actually have a match in your family. But then it's a 14% chance that that match will not have sickle cells. So it's amazing she was a match and she doesn't have the disease or anything like that, so she was able to donate. It's crazy how it came around full circle that way. So pretty much through the months as I was healing and recovering from transplant, still in Calgary, they tested my hemoglobin S every single week, or every other week, whatever it was. And I remember going into transplant, I had 35% hemoglobin S or sickle hemoglobin. And then it was so nice to watch over the weeks that it decreased from 18% to 8%. And then all of a sudden, it was at 4%. And I was like, well, I'll take my 4%! Then eventually they decided to do another test. And this one was just a yes or no. And they tested me for sickle cells and it came back not present. This was January 25, 2018.
I was just in tears. I think I was in shock for a full 24 hours. I was, like, is this real? Are you sure this is my test?
Lauren: Absolutely. Well, the other thing is that you've spent your entire life up to this point being chronically ill So suddenly being told you're not anymore is quite a revelation, I'm sure.
Revée: It didn't really add up or make sense to me. It took me a long time to even accept it because I was afraid to accept it. I felt that if I actually accepted it, then what if by chance there was a mistake. Because they were, like, “Well, you know, up until the two-year point you never really know. Potentially, the sickle cells could resurface.” So I was a little bit nervous to be too excited. But then I thought, you know what, let me enjoy this. Let me just enjoy this moment. And then that moment became a year of sickle cell free, and that year became two years sickle cell free. And at this point, I’m, like, all right, sickle cell is done. But the interesting thing about transplant, I think a lot of people forget, is that although you've had a transplant I feel like you exchange chronic illnesses. A lesser one now, of course. I’m no longer a sickle cell disease patient, but I’ve become a transplant patient — which opens doors to so many other issues that you could potentially run into. I've been very, very fortunate … I have had side-effect issues, but not in abundance, nothing that has completely derailed my health. But it's crazy. It is really crazy. I'm just happy right now to be able to say, “I’m free!”
Lauren: You're free of sickle. And it's interesting because there's the mental health component there, too, right? Where there's always going to be that underlying anxiety of ‘Yes, but …’ Wondering when the other shoe is gonna drop, as you have described. You are dealing with potential side-effects, the fear of those side-effects and everything that comes with living a life of chronic illness — and suddenly being told you're not chronically ill anymore. It's a weird transition, I bet.
Revée: Very weird. Mentally, it’s interesting that you pick up on that because no one picks up on that. I've wanted to be free of sickle cells forever, wanting to be cured. But then the moment you are, it's actually like an identity crisis. Which sounds crazy.
Lauren: It doesn't at all.
I’ve identified myself with sickle cell disease my whole life. And all of a sudden, I’m, like, okay, so I don't have that?
Lauren: It's like a reverse grieving process, it sounds like. Because I think a lot of us live able-bodied up to a certain point, and then get a diagnosis of a chronic illness when we're teenagers or adults. Unlike you … you were living with this diagnosis since you were a little kid. So for you, as you say, your whole identity, your entire life up to that point, had been in the world of sickle cell. But for someone like me, for example, who was completely able-bodied, and then suddenly completely disabled, we go through a grieving process where we have to grieve our former selves. It sounds like you've undergone the same kind of grieving process, but going backwards, right? Going back to more able-bodied, but also, as you say, being aware of managing the side-effects of transplant.
Revée: Yes, yes. It was weird. I had to really adjust to it because almost there was a point that I didn't really feel like I fit in anywhere because I'm not “normal". I have been through so much, my experiences don't match anyone else. But technically, I am normal. And I didn't feel like I identified with the sickle cell community anymore. A lot of them were, of course, very excited. They were, like, great, this is awesome. But because stem cell transplant is not available to everyone, there was also a little bit of awkwardness associated with having this treatment and being successful and standing here today. A lot of people look up to you, but they’re, like, man, I have no siblings. How do I get that? And then it makes you feel like, oh, man, what can I do to help these people? I think that's why advocacy became so important to me because I was, like, I will not allow this blessing to stop here. I'll find a way to share my story, even if it's just for hope. So people realize that there was no way for me but God made a way, there was a way that was made eventually. Just whatever I can do to kind of make it easier for those people. But it was tough, and even in the terms of being post-transplant, I didn't fully fall into the normal transplant population either. So it was a very awkward spot. I would still go to my groups; they had a cancer survivors’ clinic I was invited because of where I was getting treatment. So I was always invited. I mingled with a lot of people, a lot of oncology patients. And it's crazy. We have similar experiences, we've gone through the exact same treatment. But I still felt like it's a bit different with cancer, because a lot of them, as you said … maybe they were able-bodied and healthy before and then they're going through this grieving their old life — and this has been my life. For me transplant was a “choice”; for them transplant was their only option.
Lauren: Yeah, absolutely. I think that's very well observed. I'm wondering also, you've mentioned your sister a few times and your entire family, really. And your own journey to becoming your own advocate. But how has your sister's presence, the fact that she was able to donate stem cells for you — which is not easy, that's a painful process. So she must really love you, right? But that your sister was able to donate for you and has helped you along this entire journey, not only of self-acceptance over the many years that you were living with sickle cell actively, but also in terms of helping you research and push to get the stem cell transplant. Has it deepened your relationship with her because of all of that?
Revée: Yes, definitely. If anyone knows Stephanie and I, we already were very close. She was like my second mom. She was always there for me, and she's honestly been an advocate for me in so many ways. An advocate with physicians in the medical system when I went to emergency. But also an advocate with my own family, even helping my family understand … this is what Revée is experiencing. Being able to translate without me saying a lot of times how I am feeling and what it must be like has been really, really helpful. And it really has deepened our relationship. It makes me feel like I have this person that I know is always going to have my back, and is always going to be there for me. And the way she's treated me has made me want to be that for other people. Because not everyone is going to have a Stephanie in their life that is going to be able to push for them, advocate for them, and even pick them up when they fall.
There’s times when she was advocating for me and I didn't want to advocate for myself; I was done.
I was, like, “Forget it. I’ve had it with this disease. I'm going to be stabbed the rest of my life. I'm going to be in pain." But she was, like, “No, you're not. This is what we're going to do. Pick it up. Let’s move forward.” And so I want to be that person for other people who don't necessarily have someone who's doing that for them, that voice to be, like, "It's gonna be okay. There are options out there. Don't give up just yet.” Because honestly, when I found transplant, I was probably at rock bottom. I was ready to give up at that point. I was tired of these meds. I was tired of nothing changing. And so I'm happy that I had someone who kept pushing.
Lauren: Absolutely. Why don't we dig more into your advocacy work. Can you talk to us about how you've been raising awareness of sickle cell disease and stem cell transplant, and also about these patients that you're working with now. And how you've ended up helping other people who are living the way you once lived.
Revée: So it started, actually, before transplant. When I found out that this could be a possibility, I started a YouTube channel. And I started this YouTube channel, honestly, because I was, like … maybe someone will want to know. Because I felt like there was no information for me out there when I was trying to figure out: what am I actually going to go through? There was nothing. You could find a lot of oncology resources, which are still great and very helpful, but they didn't quite pertain to the exact protocol I was going to go through, the exact experience that maybe a sickle cell patient would have to go through. I found it a little bit frustrating. So I said, okay, let me at least start to track my journey a little bit, and then maybe it will be helpful for someone else. And also for my family that was abroad and friends that were going to be back home that wanted to know and I couldn't necessarily video chat with each of them. I started creating these videos over and over and documenting every step of the way during transplant. And people started enjoying them more and more. I thought, hmm, maybe I should start an Instagram. And then I branched off and started Instagram, and a lot of people were finding my posts very inspirational or very uplifting or very helpful — and I was shocked. I was, like, what? My story? I haven't done anything.
Lauren: I’d say you've done more than you give yourself credit for!
Revée: Apparently. Thank you! But I really just felt like a regular person, going through a regular treatment …
Lauren: And sharing your story.
Revée: Yeah, just sharing so people knew, and people heard more about sickle cells. I also was a member of the The Sickle Cell Foundation of Alberta (SCFA) at the time, and so I did raise awareness through that organization as well. But then I think as I was videotaping and recording all of this, AHS — that's our, I guess, our health organization here in Alberta — had caught wind of all of this, and they actually wanted to document it. Because they were, like, “Oh, this is cool.” So once that news article came out and the video … this is probably six months after transplant … people were really, really interested in hearing more about my story. And so I was being invited to different conferences, different events, and different things like that, and I was able to then share my story and inspire others. It was lovely. At first it just felt like just fun to do. But then I really started to take a liking to it and I enjoyed making other … younger people especially … my big focus is on … I don't know what it is about that 15 to 18 year old range, but it just hits me so hard. Because that's when you're really trying to figure out who you are.
And with a chronic illness, it's so tough to do that. And it's so easy to be down on yourself, and to feel terrible, to feel that you’re not going to amount to the things you think you want to amount to.
And so I really focused on trying to inspire and uplift those guys, and really, just be that voice for them and remind them that things can get better and the way modern medicine is changing, things change overnight, honestly.
Lauren: Well, you're a living example of that.
Revée: Yeah, things can change overnight. And then even now, working in this clinic … this has been like the biggest blessing. There are days when, honestly, I drive to work and I'm crying. I’m just so happy that this is the drama I get to do. It's sounds like all I do is cry, seriously.
Lauren: But it's a gratitude thing, isn’t it. It's like you're really working it. Tell the listeners about your work — because it is what you were born to do.
Revée: And that's honestly how I feel. I'm like, how did I end up here. I'm working at a pediatric hematology clinic, which I just love so, so much. It's amazing. I love working with sickle cell disease patients; it's so nice to be able to. A lot of times, I actually don't share my experience, so a lot of my patients, they don't know that I have the disease. Only a few. Slowly, I tell people, when I feel that the time is right, and the family maybe really, really needs some support, and I could provide it. Or someone asks … they want to speak to someone who's been through this, then I might. But I wanted to ensure that they knew I was supporting them before I actually shared all that. So it's nice because I can still relate to them in certain ways. They don't really understand how I know exactly how they feel, and how I can kind of articulate.
Lauren: Trust your nurses, y’all. Trust your nurses.
Revée: They don’t always understand why, but it's because I have all this experience, and the families that I actually have shared with … they are just astounded and so excited. I think I'm actually gonna start telling people more, just being very upfront with it, because I find they're so happy. And they feel very hopeful. Because I wish, when I was that age, when I was still young, that I saw someone who was in their late 20s, or something like that, working full-time as a nurse, doing great things. It would have been so inspiring and made me feel like I could do anything. Because at the time, I only knew one person older than me with sickle cell disease. He was an uncle who lived all the way in California so I didn't really get to see his day-to-day life. I just knew, okay, well, if he's doing well, I'll probably do well. It's nice just to be able to reach patients and be so close and be such a cornerstone in their hospital experience.
Lauren: Yeah, absolutely. You have a view both as a user of the healthcare system and someone who works within it, and I'm wondering if you could tell us a little bit about the health care system in Canada … and how it really works for patients, and maybe where it needs improvement. What's your take on that?
Revée: Yes, I have seen it on both sides, so I can see sometimes why it is the way it is, why some things can be frustrating for patients as well. I think it actually works well for patients in the sense of the coverage, that the majority of the treatments and medical expenses that you are going to have are going to be covered. I've actually in the past looked up how much it costs for red cell exchange treatment that I mentioned I was getting every eight weeks. It is supposed to be about $2500 in the States and I'm like, how do …
Lauren: And you get it for free?
Revée: Yes, I'm getting completely free. I'm just wondering, how are people affording that. And that's not even factoring in the nurses, the room, the supplies, the blood products where I know the cost goes up.
Lauren: Oh, it goes up to 10 grand without you blinking.
Revée: It wouldn't have been sustainable.
So that's one thing, I'm so grateful and so fortunate that I was able to live somewhere like Canada, and I was able to have something so life-changing, completely covered.
A lot of people do reach out to me very frequently on social media asking, “How much does transplant cost?” And sometimes I feel kind of shy, because I know they come from a different part of the world where it's not covered. Money is not something you can just grab from a tree. And they’re, like, “Oh, I would love to have that, but I can't afford it.” That really, really breaks my heart to hear that. And I’m, like, why can't you all just come here?
Lauren: I know, I know. But that's exactly why so many organizations exist as well. And often people can find funding resources through charitable organizations that are focused on certain disease groups, which can be helpful. But that's not always the only answer. Or the final answer, as it were. It’s tough.
Revée: Yeah. So that's one way that I find that the health system works so well here. But definitely, of course, there's always room for improvement. I honestly think one spot that would be nice if it was improved, is the length of time for the approval process, I find that approval for anything takes very long here. I remember vividly being younger — and even now looking on the Internet — and finding that … oh, a new sickle cell miracle wonder drug. And it is not coming over here. The FDA has approved this in the US, but it's very unlikely here.
Lauren: Well, the other side of that is that the FDA has gotten in trouble for approving devices and medications before they were ready to be approved!
Revée: Okay, fair enough!
Lauren: But it's interesting you bring that up, because this delay with referrals and services seems to be the common thread whenever I hear people complain about socialized medicine. The complaint is, “But you have to wait.” And it's interesting, because sometimes you can wait; if things aren't acute, you can wait. And sometimes three months might suck but it might not make the difference between life and death. But I think it's really interesting that we need to learn to adjust our perspectives on time. And this idea of healthcare as a human right, which is the way in which you've always lived in Canada … but it's not the way that people live in other countries, like here in the US.
Revée: Yeah, it just blows my mind that it's not as accessible in other areas.
And I really feel for people who are struggling financially. Either you go bankrupt, or you get cured?
Lauren: Or the other way around that is to provide medicine and well-being and health to everyone, and then provide a private option on top of that. Which I think you guys have in Canada, too, right? You can opt to buy into additional care that can speed up some of these referrals and things?
Revée: We’re moving in that direction. And so a lot of people are also not happy about that.
Lauren: Sure, because it's scary, because it means that maybe medicine will become privatized and it'll get as bad as it is here in the US.
Revée: I know a lot of people are definitely worried about that. But honestly, I can wait. If it's going to take a little bit longer for a drug to come through, if it means that it's going to be safe, fine. But even with transplant, if it wasn't for me pushing, there wouldn't have been approval. Not everybody can push, though. And not in every situation can there be a way made. And so it’s, like, why can't we think of these things ahead of time, rather than … it takes one person. But I guess in a lot of situations, for most things, it just takes one person to change the way things are.
Lauren: Absolutely. I think that's really well said. So you mentioned earlier that you wish that you'd known someone in your day-to-day when you were still a sickle cell patient. Just as you are now with your patients, you wish that you'd been able to have a resource, someone to talk to about what it looks like, day to day. And I'm wondering what a typical day looked like for you with that day-to-day, when you were a patient versus now? And how you were balancing the demands of work and life as you were working around potential symptoms and crises.
Revée: Yes. Now, a typical day is normal, but then, oh man, it was definitely tough. I always started my mornings with medication. Generally, I felt okay in the morning. If anything, I knew I would probably have to take a painkiller along with me wherever I was going. I feel like my days were very pre-planned. Most people know, I'm not a very spur-of-the-moment person. And it's really because of this; it's because of sickle cells, I couldn't be spur of the moment. I had to be very prepared. Like, I'd go to, let's say, Banff with friends. And the plan was to drive through, just to look around, maybe grab a bite. And then all of a sudden, it turns into people wanting to go climbing on the mountains. I didn't prepare for that. I haven’t hydrated. I don't have my medication with me. I think there was one situation, actually, where I had gone somewhere like that with some family. And the decision was that they wanted to go hiking; they said, “Let's go hiking and then later on, we'll come home, have dinner, and then we'll go to a party.” Or something like that in the evening. The thought of that was terrifying. That was a lot of stuff for me to do. You don't want to say no, but at the same time, it is tough. You don't want to be the party pooper. I did feel sometimes in my day-to-day life, I had to just stay very straight-edge, stay with what I said I was going to do and what I'd prepared to do. Managing when I was working full-time … I don't know how I was doing that, working full-time with sickle cell disease. I do not know how I was doing it. Now I look back and I don't know what type of blessing was placed upon me.
Lauren: You were young and running on adrenaline in some ways, I suppose.
Revée: Yes! I guess it could have just been this new nurse excitement that I was experiencing. And also, I loved working in the NICU. I loved the babies. There’s nothing better than to connect with a new mom and baby and their family, and be such a big part of this birthing experience. Obviously, we're not there for the actual birth, but just to know that a family trusts you enough to leave their child with you, that is just such a nice feeling. You just bond with some of these families, so much.
So maybe it was just that I loved my work so much that I focused on that, even though there were days that I didn't feel well.
People knew I was taking medication. But a lot of my co-workers had no idea I had sickle cell disease for a long time. I think my manager knew, obviously, because sometimes I would miss work and things, so I did tell her. But there was one occurrence where I ended up in hospital for an extended amount of time; I was fine, and then I left work and I went straight to the emergency. People found out that way, and they all were blown away. They were, like, “What? You have sickle cell?!” And because they're all nurses, they know exactly what it is. So they were very shocked that I'd been experiencing this and living with this the entire time.
Lauren: You push through.
Revée: And I think that's what it is sometimes with chronic illness — you just kind of teach yourself to keep going. I became an expert at hiding pain. It was easy for me. It was second nature, and it was just how I dealt with it. I was, like, well, I still want to go with my friends and I know if I'm at home and my parents know I'm visibly in pain, they’re not gonna let me go out with my friends. It was a ‘we'll find a way to make it work' kind of thing.
Lauren: You talk about people not knowing because you were hiding pain, and stuff. I'm wondering whether you ever found yourself in a position where you had to justify the existence of your illness to other people who wouldn't believe it, or didn't understand it because they couldn't see it?
Revée: All of the time! I can't even think of how many times it's happened to me. With sickle cell disease, you look totally fine. The only thing that might tip people off is that sometimes we get a little bit of yellowing of the whites of our eyes, just because of the red cells breaking down so frequently and being filled with bilirubin in your blood that ends up in your eyes. But with that being said, even with that slight yellowing, people still don't notice really; truly, it's something you notice more. But I felt like I was constantly having to justify. Even in the medical system, that's where I found it the hardest. With my friends, fine. They would be frustrated, like, “Well, why can't you come?” “Oh, I don't feel well." “But you look fine.”
Lauren: And they knew you had sickle cell, didn't they?
Revée: But at that point in junior high, what do you know? In high school, you don’t really understand. Even in university … if you're not a medical professional, you can ask someone who is very knowledgeable, but they won't understand what it is. And so I did find it really hard and emergency was the hardest part for me.
Lauren: You had to face it, didn't you?
Revée: You have to put on this show, to be honest. It sounds really bad. But you couldn't just go into emergency and just sit there regular and think that they're going to take you seriously. Because they feel like you look totally fine. Yeah, my vitals might be off, but they’re, like, “She looks fine.” For the most part, the issue with sickle cell is, because we're in pain, requesting higher doses of pain medication than normal. This is where the biggest issue lies, that you can't request what you need. They're going to try and give you Tylenol, because, “We start everyone with Tylenol.”
Lauren: This brings up an interesting question, too, though, of medical bias. Do you think because you're female you were offered the Tylenol more … because you're a woman of color. you were offered it more? That people were less less willing to believe that you are in pain? Because then, of course, we butt up against the opioid crisis, and of course, we're going to try to avoid using highly addictive painkillers. But by the same token, those are the only ones that are going to work for you sometimes. So what did that look like? Did you experience prejudice in the healthcare system, do you think, because of that?
Revée: I don't know.
Honestly, I try my best to separate race from everything. I try not to ever go that route.
Lauren: Forgive me for bringing it up, then! (laughs)
Revée: No problem!
Lauren: I have to poke the bear! (laughs)
Revée: Poke the bear! Poke him as much as you need to! It's fine. But honestly, I try my best to separate that. I try not to let my mind go there because you can find in every situation … well, it's because of my race. I know I experienced prejudice due to my condition. And it's very tough because how do you separate the condition and the race, because with sickle cell it’s generally people of color who are affected. So technically, yeah, it was racial prejudice, because there isn't very much funding poured into it either because of potentially the people that it affects. And it could also be because the people who it affects feel shy about it, they don't want to talk about it. They don't want to go and do their own advocacy.
Lauren: And that’s not everyone's job. Some of us find that we become advocates, and some of us … our way of being is just to be. You don't have to be an advocate because you have a chronic illness.
Revée: Exactly. Just to be. So I feel like it is very possible we are just looked at like these drug-seeking people. I think it did actually get harder as I got older. When I was younger, I don't remember ever having to do this whole ‘put on a show’ thing. I remember always just getting great care. But I think as you transition into the adult world, where all of a sudden now you're like … oh, she's a 19-year-old like girl who looks just fine. Or maybe there have been times I've even showed up in the emergency in outing clothes. I wasn't wearing my regular sweatpants or whatever, and you could visibly see that I've come from somewhere. That also kind of raises an eyebrow as to … does she really need these high doses of medication? What is she really here for?
Lauren: So you had to kind of perform pain for them? Seriously?
Revée: Yes, because you can't just sit silently with pain. It's funny because that's actually how I dealt with pain. Anyone in my family would tell you, they knew I was in pain when I disappeared. I would disappear into my room and I just be in my bed crying very silently. I didn't want anybody to know.
Lauren: This is so fascinating because it's the opposite end of the spectrum. You were going from hiding your pain to having to really perform it for doctors to take you seriously. With friends and family, hiding the pain … and in the emergency room, having to put on a show of pain. For people who are listening who don't have chronic illness, to understand what that does to your mental state as well, and the stresses that can put upon your body … that you're living in these two very opposite worlds and not ever able to sort of just live in and of yourself. It distances you from yourself emotionally in a lot of ways.
Revée: Yeah, definitely. I just felt like I had to turn it on the moment I got out of the car and my sister or my mom or dad was pushing me in a wheelchair. I just knew I had to be on from that moment. You couldn't just sit there. And I'm someone who deals with pain really well. I can be in pain, but still smile. I can, because I'm used to it. There were times at work in so much pain, but could still joke around with my co-workers; I still did my job and nobody knew. It's that idea of being able to just control how I felt inside and put on this brave face. I had to completely tear it down and just sit there. You had to be upset. You had to show you were in so much pain that you could barely sit up. I could sit up if I wanted to sit up, but it feels like you want me to look floppy. It’s interesting how people feel that pain has to look a certain way.
Lauren: Speaking of that, do you think that you would have had a different experience if you looked a different way? Whether it was coming in looking ratty? Or if you'd shown up as a white man with pain, would you have been taken more seriously? I just wonder about that.
Revée: I really do. I always felt like I needed to dress a certain way before going to the emergency. I had to look semi-put together. I didn't want to just show up looking super raggedy.
Lauren: Because you didn't want to look like a drug addict.
Revée: Exactly. I was, like, why am I putting earrings on right now? That doesn't make any sense.
Lauren: And also when you're going to the emergency room, who has time to stop and be, like, let me just take care of my appearance right now. But that's what you had to do!
Revée: It was, like, I don't want to wear that sweater. Let me put this sweater on. It became this thing that I felt I had to dress up for the emergency, and I really wonder that if potentially I looked differently, would they take my pain seriously. It even got to this point that the physicians actually developed a card, the sickle cell disease card, where it has all this emergent care and all the information they need to know. Because half the time, the physicians didn't even know in emergency what to do.
Lauren: That’s bad, isnt it?! That doctors in the emergency room weren't familiar enough with sickle cell disease to be able to spot it, treat it? That’s scary.
Revée: Yes. I vividly remember my sister would go walk around the emergency, looking for the physician. She would be, like, “She’s been put into a room. Where's the physician?” And she'd be kind of loitering and seen physicians Googling Sickle Cell! Googling! I remember her coming back to the room and telling my family … we're all sitting there, and we’re, like, "What in the world?! Seriously? Oxygen, pain medication, fluids. That's all. It's really not that complicated.” But so the Sickle Cell Card was created by one of my physicians, and it's a nice little roadmap I love them for doing.
There’s a spot where you can actually fill out the medication dose that your patient is currently needing for pain control.
Because I can't go in there and say, “Oh, actually, I'm taking Dilaudid of this milligram, this amount." They're going to be like, “No, we're going to start you with Tylenol and work up.” This would clearly state, “She needs morphine rather than this medication.”
Lauren: And this is signed off by your doctor as well, it sounds like. The other thing is, if you're on any kind of medication, having a list of your medications on you, for situations like this, is smart anyway, right? Especially for those of us with chronic illness, to be able to either access a file that you could email to doctors, or have something with you, Because who knows about interactions with drugs you're on, and all that kind of thing, too, which is a whole ’nother can of worms. But that’s a really smart solution.
Revée: It was life-saving, very helpful. And it even sped up how long I would have to wait, because they saw it was serious and understood. It was outlined on the card … I think it's a Canada-wide thing … that one of the physicians that created it and distributed it, then everyone can use it and tailor to patients if they needed to. But it was honestly lovely.
Lauren: That’s really wonderful. That's a great tip. And I'm wondering if you can also offer your Top Three Tips for someone who maybe suspects they've got something off? Maybe they're living with sickle cell, and they're not sure what the way forward is going to look like. What are your Top Three Tips for people who are living with chronic invisible illness?
Revée: Okay! The first one I'd have to say, is to trust yourself. Because you know what you feel and you know when something's off. That's my biggest thing, because before transplant and after transplant, I've experienced countless situations where maybe a symptom or side-effect, something I was experiencing, wasn't believed. But I had to trust myself and trust that … nope, this is wrong. Sorry, I'm gonna continue. Be very strong in what you know.
Lauren: Absolutely. I like that.
Revée: That one was really, really helpful. Also, I would say, to educate yourself. I'm big on education. Understand your condition. You need to know what helps or what hurts your condition. And if you're at the point where nothing's actually diagnosed, you should be tracking your symptoms. Don't just say, “Oh, you know, a few times a month I have this.” No, find a calendar, find a chart, and make it a pain diary, make it a symptom journal, something like that. So when you go to your doctor's office, you can be, like, “Here, this is all the funny things that have been happening and what are we going to do about it?” Rather than being a little wishy-washy … you're not 100% sure how long the pain lasts, this at least gives you concrete information. That's what I did post-transplant — I documented every single day.
I made a giant tick chart with every single symptom I could potentially have.
I even wrote down how many steps I took that day, because I was wearing my Fitbit. Just so that if anything happened — from noticing a rash enlarging, to having a certain pain after starting a medication — everything was documented. So when I went to my physician exam … you get to a point where you only see your physician once a week … so for the whole week, I could tell you, “Actually, on this day, the day after you changed this medication, this is what happened.” It just makes it easier for yourself, and it gives you a little bit more credibility as well.
Lauren: It gives you actual usable data you can hand to a doctor, who is essentially a scientist who needs the data.
Revée: Exactly. They need the data to process, sometimes, what you're saying. And the last thing I think I would tell someone is, to advocate for yourself. And advocating for yourself can look however you want it to look. It doesn't have to be getting on social media. It doesn't have to be writing to your legislature or anything like that. Really, and truly, it can just be that when you do not get the right answer or outcome that you feel comfortable with, keep pushing. Look for a second opinion if you can. Do whatever you can to keep moving, whatever vision you have for it. And that's why it's important to educate yourself. Because if you don't know what you're advocating for, it makes things a little bit tough. So those would be my top three.
Lauren: I love that. The last thing is, I'm wondering … What are the Top Three things in your life that give you unbridled joy, things that even perhaps while you were living with sickle cell you were unwilling to compromise on. These can be three things … maybe they're guilty pleasures, secret indulgences, comfort activities — three things that make you super, super happy that you will turn to when you need a moment of joy.
Revée: Okay! Well, number one, first and foremost … nieces and nephews. Oh my goodness, I love those little people. There’s literally no one better than nieces and nephews.
Lauren: That’s lovely. You obviously have a love of children, too, because of your work.
Revée: Yes, I’m obsessed. They brighten my day like never before, and I know that they were what kept me going through transplant. That was the thing that I kept holding onto … I need to get better for these guys. Who's gonna take them sledding and tobogganing? That was the kind of dialogue I had to continue replaying through my mind to get me through the toughest times. Even though I was having a bad day … just mentally I was physically fine … but just mentally if I was not having a good day, there’s nothing better than a crazy child laughing. You know when kids are running around and they get exhausted, but they're still laughing? It's laughing that’s hysterical. It just gets me. Whatever you're experiencing, it’s gone at that point.
Lauren: It’s true joy.
Revée: So definitely hanging out with my nieces and nephews, as well as spending time with family. That all kind of ties into one. I love my family, they’re lots of fun. Especially the little ones in the family. My second would be … this is a guilty pleasure. Definitely a guilty pleasure!
I love reality/trash TV.
Lauren: Thank you. That's really what I'm here for! (laughs) When you've lived with chronic illness, you spend a lot of time bingeing TV. So reality TV is very handy for that, because there's endless amounts of it.
Revée: Endless amounts, and it's just mindless drama. Like, why are you fighting?? But I love it. It's kind of nice to turn your mind off and just see inside of someone else's life for a little bit.
Lauren: And see that maybe sometimes they have it worse.
Revée: I definitely love my fair share of reality TV. And honestly, anything, anything reality, I want. The more drama the better. I love those ones. And I think the last one would be … just being creative. One thing I'm really really interested in is natural products. I love to create my own natural products. It's something that post-transplant I started to explore more. I just got to this point where I felt like I was taking probably about 15 medications a day. I’d just had the chemotherapy and radiation we spoke about. I just felt like I was being pumped with toxins, so many toxins through my whole life of just being on medications. I was finally at a point where I said, no, I don't want to do this anymore. And I started learning more and understanding and researching about what the products that we use really have in them — in terms of anything from cleaning products to skincare to body. It's wild. It sparked my interest into this new world. So in my spare time, I create lots of body butters, and things like that.
Lauren: It's interesting that you're a nurse, and yet you also see the benefit in taking a step back with some of these easy solutions. That instead of buying the spray from the drugstore, maybe making an apple cider vinegar spray or something which might be the better, safer way to go — not just for you, but for everyone else in your household, for your plants, for your pets. A lot of these toxins can contribute to disease, so if you cut down on them …
Revée: Yes, that's exactly where it came from. I was, like, okay, what can I cut out that's going to reduce my risk of …
Maybe it's also my paranoia of getting another chronic illness.
Lauren: Sure, but it's also maintaining health, isn't it. You've got health now. And so you want you want to do everything that's in your power to stay healthy.
Revée: Exactly that. I’m, like, this body is a temple. I really and truly feel like God has given me a second lease on life. And I’m, like, I'm not gonna waste this. I will not waste it. I'm gonna do whatever I can to preserve it and prolong it the best I can. And so these natural products have kind of opened a gateway in a way that I can do that. I've tried to get my family on it. I'm working on it! When they realize it works, they’re , like, wow!
Lauren: Revée, can you tell everyone where they can find you and your work online?
Revée: Oh, yes, definitely. You can find me online at MySickledCells. I'm on YouTube, you can find me there. You can also find me on Instagram. It's also MySickledCells. And then I do have a website as well, MySickledCells.wordpress.com. So if you're interested in hearing a little bit more about my story, that is definitely the place to be. I've kind of broken it down a little bit more. All of my different interviews I've done or any speaking engagements or articles about me, will all be harbored there. And eventually, in the future future, as things progress, I would love to sell my natural products on there.
Lauren: Yeah, that'd be wonderful. And what a story behind them too. Well, Revée, it’s been such a pleasure. chatting with you today. Such an honor to be able to give you a platform to talk more about your story. I'm so glad that we connected, and I really look forward to watching the rest of your health journey as it continues to unfold. We'll be keeping an eye on you!
Revée: Yes, thank you so much. I really appreciate it!