Athletic Service Member Conquers Aplastic Anemia and MDS with Transplant

Leigh Clark: Hi, welcome to Podcast for Patients. I'm Leigh Clark, Director of Patient Services. And I'd like to thank our corporate sponsors and our patients and families for supporting the podcast series. I have the pleasure today in chatting with Damian about his journey with aplastic anemia and transplant. Welcome, Damian. It's so nice to have you with us today.
Damian Carbajal: Good morning. Yeah, hi. Appreciate being here.
Leigh Clark: So, Damian, um, why don't you tell us a little bit about yourself?
Damian Carbajal: Okay. Yeah, so, uh, my name is Damian Carbajal. I'm originally from Tucson, Arizona. I'm 31 years old. I have a brother and a sister and we're all military. So, um, prior to diagnosis I was in the Air Force. I worked on radar gaming systems for about six years, and then I made a transition to a flying career field as a flight engineer. And it was, it was a really great experience. But, that's a little bit about me.
Leigh Clark: Yeah. (laughs) Well, thank you for your service and for your family's service. And so, you said you were in the military. Anything else going on in your life before your diagnosis of aplastic anemia and what led to the diagnosis?
Damian Carbajal: Yeah. So it's a really interesting story and, and I don't know how similar it is for other patients, but my diagnosis actually was found on a fluke really. As I, as I mentioned before, I worked in a previous job, and I was looking to transition to a new career field and, um, and with that the new job entailed a flight physical. This is just standard for all people who are looking to become air crew. And in there they did a, a blood draw and the doctors came back, and they told me that... At first, it was, oh, hey, you're anemic. Your blood is just a lot, um... Your, your numbers are just a lot lower than, than the normal, so they did further investigating.
This happened in January of 2017 and, um, with that, it was just kinda more extensive, tests here and there. And it took about a year, but I was at a, a plateau, and, um, they just decided that I, I could fly. So I went through all kinds of training, survival schools, uh, water survival, um, egressing, jumping out of the aircraft if needed to if the aircraft was going down. So I was able to perform. I did a lot of stuff, aside from that. I was fairly active. Um, my first base was in Utah, so there was lots of mountains and a lot of outdoor things to do. So I kinda got into snowboarding in the winter, um, and, and travel was just a really big passion of mine as, as I deployed constantly  and things. So I was always on the move and through that, I just never really thought I had anything going on but once they told me, "Hey, you have, um, discrepancies in your blood," from there a whole slew of different things kinda cascaded from there, which eventually led to my, uh, medical retirement from the military.
Leigh Clark: Damian, how long did it take for you to finally get a diagnosis?
Damian Carbajal: Okay. So, um, with, with being in the military, I constantly moved. Discrepancies came about when I was in Florida and that had... Around that time, I had just gotten back from South Korea, um, or spending a year in South Korea. And I was living in Panama City, Florida. Um, there was doctors there that between military doctors and civilian doctors, and they ran their own tests. They, they approved me for, for flight. I did schooling in, in various places and  then I moved to New Mexico, in a very rural, city or, or town called Clovis, New Mexico. And from there, it was just different doctor.
I was at a cancer center and that cancer center pushed me to a, a center in Lubbock, Texas. And then finally in Lubbock, Texas, I was pushed to the Mayo Clinic in Phoenix. And, um, and so for that whole duration of time, that goes from 2017 all the way until March of 2022, um, and at that point that was pretty much... I, I retired in March of 2022 on March 5th and then by March 7th I was on a plane to Rochester, Minnesota to the Mayo Clinic and that's where I finally got my diagnosis. But being that there's a lot of subtleties with, with the myelodysplastic syndrome as well as aplastic anemia, it was hard for doctors to kinda determine which one I had. And as it would actually turn out I had other genetic, mutations within my blood that led to the source being short telomere syndrome. But, uh, albeit, the, the fix no matter what, I was told, "Hey, you're gonna need a bone marrow transplant, regardless of what the diagnosis is." And so, they just kept making a push for that transplant. But being that the treatments are different with aplastic anemia and myelodysplastic syndrome, they they really wanted to kinda solidify which route they wanted to go with.
Leigh Clark: Five years is a long time to wait for a diagnosis, so you can get started on the path to treatment.
Damian Carbajal: Yes, ma'am. And even going past that, finding a donor is, is also, uh, is always a hard thing too with these diseases. Um, es- especially if it's an unrelated donor, which is in my case was what we, uh, what we had to go with.
Leigh Clark: When you heard that you, your best option was a transplant, what were your perceptions? What did you think a transplant was and what it was going to be like?
Damian Carbajal: (laughs) Uh, I think ignorance was probably, like, one of the, the things that kinda helped me through this I mean, if, if I really thought about it and dwelled on it I think it's ki- It's very, very daunting. When you, when you hear transplant, I mean, initially you think of, oh, hey, like, it's an, it's an organ in the sense that you'll just take the, the faulty part out and put a, a healthy part in or something. And when it comes to bone marrow, it's kind of... It's just, it's, it's bone marrow. It's something that you kinda don't think about and, and even past that, you're like, "How do they swap that out or, or what do they do to, to fix it in that sense?" And so, it was a lot and, and I think thought it took a, a really long time, it was kind of just a lot of... and I'm sure other people go through this as well, especially with these, these, um, these diseases. And, and in my case it was very slow and the progression wasn't as rapid until it got very bad and then it was, okay, we have to act now.
 And so, um, it was a lot of hurry up and wait or doctors constantly saying, "Hey, it's not bad enough. We're gonna continue to monitor," and I think that's the common, uh, term that I was, I was faced with during the whole time. And I think in that, that was probably the most, um, frustrating and, and kind of, um... just, that was probably the most scariest part, was just the h- just the waiting, the, the looming of, hey, we know what we have to do, but w- we can't act on it quite yet because either you're not sick enough, or we just, we want to... we, we don't have very many, uh, shots at this. We want to give it our best shot when you need it the most. But when it comes to the actual bone marrow transplant, I really didn't think of it. I just, hey, I knew it was a thing that we had to do, and so long as it wasn't we need to do this tomorrow, I didn't really think about it.
Leigh Clark: And how did things go with your transplant?
Damian Carbajal: At this point, I had a diagnosis in March of 2022. We, we continued to monitor. The appointments went from once a year to six months, to every three months, to every month, to every two weeks, to every week. And, um, so there was a progression there. But from March 2022, um, until May of 2023, that's when they actually initiated the transplant. So there was still a lot of time in between. But, um, unfortunately, the transplant was filled with a lot of setbacks. Um, but thankfully, from May 2023, um, to now I can proudly say that I was granted a successful transplant. The first one did not go as well. Um, um, I made it to about day 60 post-transplant where I encountered, um, a, a, uh, condition called HLH, which is, um, I believe, hemophygocytis, uh, lymphocyto- uh, I'm not even gonna try that. (laughs) But it's HLH. And, and what it effectively did was my white blood cells started attacking other cells within my, my, uh, my body and that, uh, uh, eradicated the, uh, donor cells that I received.
 So I spent a lot of time getting transfusions, um, every other day, every day and this was transfusions of either vitamins of magnesium, potassium, uh, hemoglobin, uh, and platelets. And I, I just... I wasn't retaining, and I wasn't producing any cells, and so... and, and to make it worse, I was... I had nosebleeds and, It just seemed like a bad situation. And, but gratefully, in November of '23, I got a second transplant and I, I'm feeling a lot better. Blood numbers are going up. Uh, I just had a blood draw this last week and my platelets are in the normal range. My white blood cells and neutrophils are in, in, in, uh, where they need to be. My hemoglobin is still slow to rise, but, um, it is, uh... It's getting there.
 My bone marrow transplant that should have only taken those 100 days or so ended up being a whole endeavor of about eight months where I was, uh, pretty much in the, in the parking lot of the Mayo Clinic and going doing outpatient or a- a- inpatient appointments. And so that's pretty much my story with that.
Leigh Clark: And with your second transplant, what do you think was different?
Damian Carbajal: I really can't say. I mean, prior to transplant... Prior to the first transplant, I, I really made an effort to, to make myself the best candidate. This was... I was working out six times a week. I was eating very healthy. I was going to therapy. I was doing all kinds of things. I was spiritually getting myself prepared. I, I made myself as a great a candidate as I could and, and I just think that it wasn't... either there was something with the cells where... I know that with the first transplant I, I accepted the cells. I began to kind of reproduce sed cells but after a period of time, I plateaued and then they didn't take. And, and I know that in talking to various other groups that this isn't something that is completely uncommon.
 Um, I mean, you hope that it works the first time through, but, but it, it... in my case, it just didn't. And and there's no real distinct, hey, this is why it didn't work and versus why the second one worked better. Um, I can say that there was different treatments, uh, and different chemos that were, uh, used. The first transplant, I did five days of chemo. I did one zap of radiation, two days of chemo post-that, and then immunosuppression. Um, that immunosuppression was with tacrolimus. The second transplant, they changed it up because I, I was already in a vulnerable state. I did not do any radiation, um, and I did a different chemo regimen, um, so five days of chemo, um, no radiation, transplant, and then that same day of transplant I, I started chemo again. 
 There was, more of an initiative to just be, be quick and, and cautious because of, because I had just already gone through the transplant. But I think in that there was a lot of vulnerability. So my body was just kind of... It had just gone through all this stuff. I was in a, in a very, like, weakened state. So it was more adept to possibly accepting those and that's kinda what I personally believe. Um, just I, I was, I was ready to take any cells. Just, my body needed to produce something and, and that's kinda where I ended up.
Leigh Clark: And, Damian, was is it that you would like for other patients to know?
Damian Carbajal: I would say that you somewhat have to trust the process and, and rely on your support networks. Um, I was very fortunate through this whole time to, to have people caregiving for me and for countless people looking out for me. Um, and so I know there are some people who, who want to do this on their own, who, who are highly independent, and I was of that, that mind. But it took... It took certain things to kinda click in my head where I was like, "I need people. I need, I need to... I need to rely on the, the people who are around for me because, um, I just need them." And so, uh, I'm grateful that I have family, friends, and, and the medical teams that were, that were around, people in the community just, just trying to be there for me. So I would say community is a very important thing.
Um, and even in those times that it seems like nothing is working, just hold, hold on tight and, and keep pursuing forward. Those are kind of the, the things that got me through it. It, it was...  I mean, I never really have, have blamed anyone, saying, "Why has this happened to me?" Um, instead I kind of view this as I get to, I get to experience this. And that may sound weird, but I have the opportunity to go through something that a lot of people don't go through and, and it's made me a better person. It's made me a stronger individual. It's made me more resilient and, and I, and I have to say I'm grateful for that because it's opened up doors where, like, even in this opportunity I, I get to speak and, and share my experience in hopes of helping other people. And though I may not be able to serve in the military anymore, I feel like I get to serve in a different, uh, capacity by, by sharing my story.
So I think it's a, a lot of perspective and just kind of being open to the fact that things may not look like how, how you want them to, but if you can maintain some, uh, semblance of positivity 'cause I, I understand none of this is easy. Um, and, and going through it, there was many, many times where I just wanted to give up. But in those instances, that's where your community really comes into play. They help you out. The- they're there to, to give you that extra support, or push you forward, or, or just, just be there for you as a shoulder to cry on and, and such. Um, so, uh, in that, I think, community, utilizing your resources, asking questions. I know during the first transplant I was, I was kinda quiet. I just was, like, they're, the doctors are the professionals, but, um, and that they're also human, so, it doesn't hurt to just ask questions and, and, and really, uh, cultivate knowledge within yourself of, like, what's going on because, um, at the end of the day even as the pa- patient, you have a vested interest in your health. (laughs) And, um, and so gaining as much knowledge as you can only makes you better suited because, uh... I think that in transplant everyone serves a purpose. It's a team mentality. We're all gonna get through this together and, and so you, you need to play a, play a part whether that's you're, you're doing your walks, or you're, you're eating. And even if eating is not eating solid foods, you're just drinking  fluids. You're doing what you need to do to, to effectively accomplish the mission. I really treated this as a, as a deployment so that was my mentality. It, it, it got me through it. 
Leigh Clark: Thank you so much, Damian, for sharing your story and your advice for patients, because it really does help, patients hearing from other patients about things that they've been through, so they know what to expect and, uh, can give some insights. So thank you very much for being so open, uh, with your experiences. And if you'd like to learn more about transplant, we have lots of information on our website, which is aamds.org, which also has many videos through our webinar series. So please do take those opportunities and please feel free to give us a call. We can help with answering your questions as well. So thank you again, Damian, for sharing today. This concludes our podcast.