Pediatric Nurse Finds her Way through Aplastic Anemia Treatment

Leigh Clark: Hello. This is Podcasts for Patients, with the Aplastic Anemia and MDS International Foundation. I'm Leigh Clark, director patient services, and I have the pleasure today of speaking with Claire Pak, who's going to tell us all about her journey with aplastic anemia.
Before we get started, I'd like to thank our podcast's diamond level sponsors, which are Alexion and Novartis, and also thank the wonderful patients, families, and their caregivers, who without their support, our podcast series would not be possible as well.
Hi, Claire. Welcome. So nice of you to join us.
Claire Pak: Hi.
Leigh Clark: So, Claire, tell me about yourself.
Claire Pak: Sure. I was born in New York, but I've grown up most of my life now down in the South. I'm a Georgia girl. (laughs) And I come from a big family, so I'm the oldest of five children. And for the longest time, I remember wanting to be a nurse, especially a NICU nurse, because my brother was in the NICU. And so I did that, but I feel like I've had a full circle moment now, because he saved my life, and was able to give me his bone marrow.
Leigh Clark: Tell me, what was life like before your diagnosis of aplastic anemia?
Claire Pak: Oh, yeah. It was busy. (laughs) It was really busy, exciting, and a little bit nomadic, I would say. I was travel nursing before this, so, you know, I hopped around a little bit, went up north to New Jersey, was in Texas, and then most recently in Washington. And I was wrapping m- up my travel assignment there and getting ready to come back to Georgia and settle down. I had gotten a, a permanent job in a different nursing specialty I was excited about, and I was planning on getting married. (laughs) But then ended up getting sick. But yeah, there was just a lot of exciting things happening and, you know, just... was in my mid-twenties, so (laughs) had a lot going on, just moving around.
Leigh Clark): Living your life.
Claire Pak: Yeah (laughs) basically.
Leigh Clark: Yeah. How did the diagnosis of aplastic anemia happen?
Claire Pak: So, I think the three weeks leading up to the diagnosis were the most symptomatic. So I drove cross-country for five days, and arrived back home for Christmas Eve. And as soon as I had arrived, I just felt this audible pulsing right behind my right ear, and I was super tired, but I didn't think anything of it, because I'd just had a week-long drive. And, you know, I think family members were saying, "Oh, you look pale," but kind of brushed that off too. I just thought I needed to go, you know, rest for the rest of the week, or like, through the holidays. But the more I rested, it just wasn't feeling like I was rested or energized. And I spent a lot of time on the couch and the bed.
And I think it just started compounding, like I was getting sick with a respiratory infection, I was coughing a lot, dizzy, weak, getting more canker sores, which weren't uncommon for me. I was getting quite a lot, actually, for the past year, so I wondered if probably this started way back and I just hadn't caught on. And the headaches and the pulsing just wouldn't stop, and, I would get short of breath just walking from one end of the room to the other (laughs) and I was crawling up the stairs at one point, and fainted while I was in the shower. And then the petechiae, that was the end of that.
And I was in so much pain for three weeks, and I just realized, yeah, I'm not getting better (laughs).  I know this seems a lot more serious than I had thought in the beginning. So, ended up going, got wheeled into the ER, and they did my CBC and they thought, "Oh, this is way too low. It's probably diluted." (laughs) And, they re-drew it, and it was real. And so we got started on all the necessary transfusions right away. And I was later admitted, but they thought I had leukemia, so they transferred me to a larger hospital that could support that. And they ended up getting a bone marrow biopsy and confirmed, that I had severe aplastic anemia.
Leigh Clark: As a medical professional, had you ever heard of aplastic anemia before your diagnosis?
Claire Pak: So I, I work with premature and critically ill neonates in the NICU, so it wasn't a diagnosis that I'd seen or heard of. And it is a pretty rare disease, so it's not something I've also heard in nursing school or, you know, at work with other friends who work in different units of the hospital. So it was actually all new for me, too.
Leigh Clark: What treatment options did your medical team discuss with you?
Claire Pak: It was actually just one. He wanted to move forward with a fresh marrow harvest, because I had four other siblings that were willing to get tested, and I had three full matches out of the four. And on top of that, my physician actually said that the most ideal donor candidate for me would be someone who was male and in their mid-20s, and two of the three matches were exactly that. So, we moved forward with that, and we did, horse ATG, some chemotherapy, before the transplant.
Leigh Clark: And tell me about your transplant process.
Claire Pak: Sure. Uh, well, first, after we have a match, we, the donor and I, we both get tested. And I got more of an extensive test of my whole body, but basically, you know, they make sure that, um, I have a suitable healthy donor, and they'll do, like, EKGs on them, pulmonary function tests, blood work, a physical exam, and get assessed by the physician. And once they're approved, I kind of do something similar but a little more extensive. And they just want to roll out and make sure about I'm able to get the chemo without any major complications. And then after that we set an OR date, and, my brother, he did like a chemical wash the night before, and went into the OR early that morning. And I got the stem cells same day, so we didn't have to freeze them. My physician said that he had been doing some research about how that can really help prevent GvHD after transplants, so we moved forward with that.
And once they harvested his cells and prepped them, I got it that afternoon. I was hooked up and monitored the whole way, and if they saw anything in the monitor, they would let my nurse who was with me know. And then afterwards, they kept me for a few days, because I did have a bit of a complication during the transplant, but usually if things go well, and then you don't have a fever after, you're able to leave the next day.
Leigh Clark: And what's life been like since your transplant?
Claire Pak: Slower. (laughs) Much slower. I ended up moving back with my parents, because my mom was my main caretaker, and right now I'm still with them. But, let's see. It's been 11 months post-transplant, and I feel so much better. I've gotten to the point where I can walk my dog, work out in the mornings, or go for a run, and see friends and family, at restaurants, as long as I'm careful. And yeah, I've actually taken some short trips as well. But I'm still listening to my body and staying aware of what it tells me, and just being cautious about that. I haven't worked, though, because my whole training has been in working with sick babies, and they don't want me (laughs) catching anything from them. But I'm actually starting medical school this summer, so, just taking this extra time to be with friends and family.
Leigh Clark: That's a big challenge for you to undertake, starting medical school this summer.
Claire Pak: Yeah. My (laughs) my mom always jokes with me that I know how to stay busy. (laughs)
Leigh Clark: Yes you do. And what have you learned about yourself, through your journey with aplastic anemia, and what do you want other patients to know?
Claire Pak: Oh, yeah. This is a heavy question. (laughs) What have I learned? I, I feel like I've learned so much. Um, let's see. Well, one thing for sure is that, you're a lot stronger than you realize, and you will get through it. It might look different for everyone, but you will. And I was someone who enjoyed being in control and planning my life to the tee (laughs) like I knew what I was going to be doing every hour of every day. But this kind of taught me to drop that and, take a step back and just trust the process. You know, life has its own plans sometimes, and just it helped me to live day by day, and to really enjoy the small moments, and not just be on the go about everything.
And even during, like, the treatment process, I think it helped not to just focus on every little lab that came through, or every single detail. And once you kind of trust the process, keep the faith, it can work out. And it doesn't mean that you should be aware, um, you should still advocate for yourself. I think that's what I learned about me, and just being more aware of my body. I used to ignore it and kind of push through things, but now I'm much more proactive about my health.
And, I think if I could go back and talk to myself at the beginning of this journey, I would say, like, ask for help. It was really isolating at first, and I was really down about it, and I was 26 at the time, and so dramatic (laughs). You know, I said, "Oh, my life is over," and I just thought other people didn't understand how I felt, or that life was moving on without me, because I had all this to look forward to, and though it was taken from me.
But I'd say, don't let yourself stay isolated, because, you know, we live in the age of technology. Like, even if we have to social distance ourselves you can FaceTime and, um, just stay connected with other people virtually. And, like my friend, she called me and we did a chair exercise together, and just danced to some music, and talked afterwards, and it was just such a nice feeling. And, you know, people want to be there for you, but they just might now know how, so just let them know. And, yeah, create that community. Don't be alone.
Leigh Clark: Thank you so much, Claire, for sharing your journey, and helping others. You know, sharing of yourself really does help other people, so thank you so much for sharing a lot of yourself, to be able to help and inspire others.
And if you'd like to learn more about aplastic anemia and transplant, you know, please visit our website, which is aamds.org. As Claire said, it's really important to stay connected with others, and be part of a community, so please do consider joining our patient support groups, which are virtual, and they're also listed, on our website. You're also welcome to give us a call at 301-279-7202. We're always here to help support you as a patient, as well as your family.
Thank you so much, Claire.
Claire Pak: Thank you. This was nice.