CF Caregiving: A Husband’s Perspective

**Caleigh (Host):**
Welcome to Our Fight to Breathe, a podcast rooted in resilience, community, and the power of storytelling. My name is Caleigh Haber, and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and I've lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going. Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight. 

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability, and rare disease. It's a space where we talk about the realities of what we face. The triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. 

Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. 

My hope is that you'll walk away from each episode feeling seen, understood, and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together. 

Today's episode is all about the unsung heroes of the cystic fibrosis community, the caregivers. These are the people who stand beside us through every high and low, offering support, strength, and unwavering love. 

And today, I'm bringing on someone who knows the caregiver role firsthand. My husband, who has been my partner not only in life, but also through the last decade of living with cf. In this episode, we'll take an intimate look on what it means to be a caregiver and the emotional and physical demands of the role and the impact it has on relationships. We'll discuss the challenges caregivers face, from navigating the healthcare system to finding balance between caregiving and self care. We'll also explore the power of support networks, how caregivers can find strength in community, and what resources are available to help them along the way. Finally, we'll reflect on the incredible resilience of caregivers and share advice for those who may be stepping into this role for the first time. 

Before we dive in, let me introduce today's guest, a vital member in My support system, my adventure partner, my greatest love story. My husband, Bryan Takayama. Bryan was born and raised in a small agricultural town in central Ohio. He started College at just 16 years old and went on to graduate from the Ohio State University, Fisher's College of Business honors cohort. Post college his plan was simple. Climb the corporate ladder, make partner, and make his first million in the bank by 30. And then life had other plans. 

Nearly 10 years ago, while attending a wedding, Bryan met me, an individual living just one year post double lung transplant with cystic fibrosis, changing his perspective on life and reshaping his definition of success forever. Today he's an entrepreneur and co founder of Notion State, an operations consultancy helping businesses build smarter, more efficient systems. 

He's no longer a live to work kind of guy, but instead embraces the philosophy of work to live. That doesn't make him any less ambitious. It just means he now focuses more time on being the best dog dad I've ever met, chasing new travel adventures, spearfishing. And most importantly, he's a CF spouse. And if I've learned anything from our marriage, it's this. Be careful what ideas you casually mention around this man because he will make them happen. Welcome to our fight to breathe. 

**Bryan Takayama (CF Spouse and Caregiver):**
Thanks. Very excited to be here. I don't quite know how to introduce myself better than what you just did, but yeah. So everything Caleigh said is on the nose. 

So it all happened at a wedding in Laguna. I was fraternity brothers with the groom and you were childhood friends with the bride and neither of us thought were actually going to make it, but last minute we both arrived. I was just planning to spend the weekend with the boys. I remember were sitting in the church waiting for everyone to start filing in, and I just remember seeing you walk down the hall. You were the only one wearing a mask, so you automatically stood out from everyone else. So I went back to just being there for the wedding. The fact that she was right there and she said hey to me, that just started a conversation. And I just remember talking to you and we immediately went into like organ transplant. You already had one double lung transplant and you had cf and when we talked about like what one another did, you point it at your chest and you're like, well, I have a double lung transplant. So I talk about this online. And then we talked for a long while. Then went back to the dance floor and we danced for a little bit. It was amazing. And then we started to. Oh, I went back up to you afterwards. I don't know. 

**Caleigh (Host):**
Well, no what stood out to me was that living in San Francisco, it's a very career based place. And that's how society, where I was mostly kind of put worth on was like your career and your income. And so not having a career or an income and basically spending only working for a couple of years and then spending most of my life sick. It was really difficult for me when I was asked those questions. And something that was different automatically about you was that we did say, hi, where are you from? Those casual questions that you start off with. But you didn't ask me what I did for work. You said, what makes you happy? What do you enjoy doing? And I then had said, well, I share online and that makes me feel, like, fulfilled and happy. And then that's how we started speaking about cystic fibrosis. But yes. So then afterwards you approached me to hang out. I did initially tell you that I had cystic fibrosis and that I had a double lung transplant. But most people 10 years ago didn't know a lot about cystic fibrosis. So after meeting and beginning to speak to one another, you came to visit San Francisco and we began dating pretty rapidly. What are some of the ways that you learned the impact of cystic fibrosis on me individually? And how is that explained to you? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, I think before we answer that one specifically, I think an important thing to note is once we started texting immediately after meeting, there was about a month where I was traveling internationally for work where were just texting. And during that period of time, like 500 word text messages were going back and forth where you were just telling me everything about it. Like you were like making it abundantly clear that you wanted me to be aware of what it's like to live with cystic fibrosis, what some of the challenges are, how it affects your friends, your family. You were very transparent and candid about life with cf. 

And I don't know that it was, you were trying to prepare me for dating you someday because I don't think you were even thinking about it, but you were helping me become very clear in my understanding of like, what it is to live the life that you were living. And that was incredibly important for me to be able to make the decision to say, like, yes, I'm in and I want to continue pursuing and see where we can take this. 

**Caleigh (Host):**
Yeah, that's true. And you didn't know at the time that I was recovering from a surgery. So he told somebody he thought I was playing hard to get, when in fact I was just sleeping for like 20 hours a day. And then the two hours that were like the 20 minutes, basically I wasn't vomiting. I was texting you from the bathtub. Like an entire life story. And then I just go back to being sick for an entire day again. 

**Bryan Takayama (CF Spouse and Caregiver):**
Yes. 

**Caleigh (Host):**
So you came to San Francisco to visit and did that give you any more of like, an insight into my life with cystic fibrosis or how did you begin to understand the actual impact it had on my life? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, I mean, the San Francisco trip was a whirlwind. Right. I arrived and I immediately found like, the type of human that you were based on the, like, how. How much zeal you had for life. Like, we hopped into the Uber, went to an amazing restaurant where you then ordered everything on the menu but didn't eat anything because you didn't have any appetite. So like, that was. That was a learning for me. But it was an episode. It was. It was pretty funny. And then. But we didn't want the date to end there, so we got into the Go Karts and we traveled all around the city. You gave me. We turned off the tour guide audio, and then you were the tour guide. And in this go kart, you took me on the freeway, which was wild. 

But then, like, we hung out with your family on this trip and we did all these fun things. Like you integrated your family. You met my friends. Like, you met Turban. Like, we went to Nanking, your favorite Chinese restaurant. Like, we did all these amazing things. And then I kept extending my trip because I kept wanting to see you. And then when I was finally planning to leave, like the day before, you got really sick and you ended up in the hospital. 

**Caleigh (Host):**
Yeah, I went to a appointment and I wasn't prepared to get hospitalized. Otherwise I definitely would have said something, but I had no idea I was going to get hospitalized. And so I even went like, without a bag. I didn't bring anything with me. And I got hospitalized. And then obviously I told you right away because I knew that you were going to expect. We had plans to see each other that night, so I wanted to tell you so you could make other plans and basically just say bye to you. 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, but I think that was. I had a literal moment when I was one foot outside the door ready to leave and the other foot in, like it was 5:30 in the morning, my buddy was still asleep. And it was just me leaving, going to the airport, and I remember, like, literally straddling the door. It's like I could go home to Cleveland right now, but, like, I could also stay here and be here for Caleigh once she gets out of the hospital so, like, I can show her that I'm, I'm being intentional about this relationship. And I thought that was a really pivotal moment, at least for mentally and probably for you emotionally. I decided to stay and extend my trip for quite a bit longer so I could be there to see you and have a proper goodbye once you got out of the hospital. So that journey overall, that two week period of time, we went through incredible highs and incredible lows that really showed me a view into your life and what it would be like to be with you. 

**Caleigh (Host):**
So that giving you a view into this, like, surprise admission and how basically cystic fibrosis does not just let you lead this, like, quote unquote normal life. There's always these hurdles that are unexpected sometimes, and you just sort of have to like, peace out on the world and go into your priorities and focus on health. What I had to do that gave you a look into the impact cystic fibrosis had on me. And do you remember anything else, like maybe watching me take my enzymes or give insulin or anything like that were like the first things that you saw? 

**Bryan Takayama (CF Spouse and Caregiver):**
I don't actually remember you taking enzymes or giving insulin while. And I don't know if that's because I was oblivious to it or because you were just not very good at doing either at that time. 

**Caleigh (Host):**
Well, I also, if I didn't really know people, I would like, go to the bathroom and do those types of things and then come back if I didn't know where I was going and what I was eating or sometimes especially because of the way that my digestive system was back then, it was very important. And the insulin that I took to give insulin, like 15 minutes before even eating. And same with enzymes. So if I knew that I was going somewhere to meet somebody, I knew what I was going to order because I knew the restaurant, I would do those things before going. And it was a tactic that I had to not put CF in front of everybody's face all of the time because. 

And also just to try to have some semblance of normalcy in my life too, so that it wasn't always the question and always the topic. And I could pretend for a little while maybe that it wasn't the focus of my life. 

**Bryan Takayama (CF Spouse and Caregiver):**

Entirely fair, yeah.

**Caleigh (Host):**

Well, once we both made the decision to be all in on our relationship, which I think was like month one, but month two. Month one to month two. What were your initial thoughts when you realized that you were stepping into the caregiver role? Especially knowing that you'd be partnering with and eventually filling the ginormous shoes of my mom and my brother. 

So maybe specifically more. I'm talking about when we decided to live together. We had only been dating for four months, and at that time, I was less than a year post double lung transplant. But I was a few months out of my very scary medical, like, trauma of being in a coma. So I had this sort of a little bit more independence, a little bit more health. And so were. I mean, I was going to hospital visits like every day, but we could still go out to dinner. I could still stay by myself while you traveled. There was some sort of sense of like, independence. 

**Bryan Takayama (Host):**
Yeah. So I think that.. I didn't replace or like, step into your mom or your brother's shoes for a very long time after we. We met. But the day where, like, I remember kind of shifting mindset and roles from not only being like boyfriend, but to being like partner in your journey was January 29th of 2017; I remember because it was my mom's birthday. Not that has anything to do with. I just remember that because it was her day and I was in Austin at a conference for work. Again, nothing related to this, but I was just traveling for work and you called me to let me know, like, hey, I'm in the hospital, you don't need to travel here. And you told me it's because you were in the early stages of rejection. 

And I remember that kind of just like flipped the switch in my mind to me. Like, I, I didn't focus anymore for many hours at work and I. It was supposed to be a whole weekend of activities for this role. And I remember thinking, like, what am I doing here? Like, this isn't mission critical stuff that I'm here for. Like, nothing here is like, actually that important. But something back in San Francisco, which wasn't even home yet was like, really important. So I booked a flight home for the next morning and so I could be there with you. I don't even know if you were cool with me being at the hospital yet. I think that might have been the first time. 

**Caleigh (Host):**
Yeah, well, there was this period when were dating where you asked me several times to come to the hospital and I at that point had said no, because my care team was just a little more strict. And I didn't want to introduce them to somebody new unless I knew that it was going to be somebody that would be there for a long time. I wanted them also to. I don't know, I don't know what it was, to be honest, but I just knew that I wasn't comfortable bringing somebody else new into it. And I think that was also a strategy of like protecting you, because I was very open about everything. But you being in the hospital was way different than you just seeing what was happening at home. And so my brother would still be in the hospital with me and whatnot. And that January time frame was I had gotten pneumonia shortly before and I kept getting these infections and kept getting these infections and I think in my head and my body I knew that I was going down a path that wasn't good. But I was also in this like love stage and beginning love stage. And that was taking a focus that was good for me because it was giving me a lot of motivation and will to stay healthy. And I was, you know, trying to stay focused on doing everything perfectly so that when you would come to visit, I'd be healthy enough to go out with you. 

I hadn't shared with you yet that I thought it was organ rejection until we did the biopsy and I had told you like, I'm doing a biopsy, we have to wait to get results. And I went to clinic and they told me the results and at that point they told me it was a 1 rejection and I told you that I needed to talk to you and you were gone working and you're like, okay, tell me what it is. And I didn't want to tell you over text and you were in like meetings, you were with a client. So I didn't want to tell you then either because I knew, you know, that still like to me this stuff was not as shocking. I was still dealing with this every day for years and years of like life or death things and just having your dreams crushed. And it was; I sort of had like a management on like my emotions some ways. And like I didn't want you to deal with being told this like drastic life changing thing while you were in a meeting. And that's when you called me and we spoke and then you flew home and I did tell you, don't fly home. All I have to do is go and get IV steroids. I'm not even going to be admitted. They told me that I'm like, guaranteed to go away as soon as I do steroids. So it's not going to be a big deal. I know, but I was like, it's not going to be a big deal. Don't worry about it. Yeah. So as you grew into this knowledge of understanding cystic fibrosis, how do you think our relationship evolved? And how do you think, like, your perspective on being a partner with me was evolving? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah. I mean, it can happen over so many stages because, like, even at that first one, like, I was still just your partner in this. I was absolutely not a caregiver. And for many months I didn't. I don't think I stepped into that role. Like, there was an issue with Tacro where, like, your levels weren't matching. So I started to ask your mom and your brother a lot more questions about it, but they were still responsible for taking you appointments and for getting your meds. But I don't think it was until like the summertime, so a solid six months into the relationship when you were in full blown rejection and they were contemplating giving you ATG or plasmapheresis or so on and so forth. And, like, there was a lot of, like, pretty big things that were happening. 

You were, you were back on oxygen. You had JP that you were dragging along your oxygen concentrator. You weren't able to, like, eat food because you didn't have any appetite. So, like, tube feeds were 18 hours a day. 

**Caleigh (Host):**

I would say once tube feeds and oxygen started, you were caregiver

**Bryan Takayama (CF Spouse and Caregiver):**
That's when it flipped, I think.
Yeah. That was like the big change. 

**Caleigh (Host):**
I couldn't do it by myself at home. And I think my brother had this sense of, like, wanting to give you responsibility because he wanted to test you in a way of being like, if you're with her, then, yeah, this is on you when I'm not there. And he knew he couldn't be there 24 7. And usually before, if he wasn't there, I was doing it or my mom was doing it and organ rejection, I was way more severely sick and less independent. And so when he wasn't there and which he was still, like, when you were working, sometimes he'd just be on the couch with me. But when he left at night and when my mom wasn't there either, like, he wanted you to have that responsibility because I think he wanted you to be like, all the way in or just be out of it and let us deal with it, I think. 

**Bryan Takayama (CF Spouse and Caregiver):**
And were all the way in. I mean, nothing is scarier than sleeping next to your loved one. And then all of a sudden the machine is yelling at you because it fell off of her face. And she was struggling to breathe because the oxygen wasn't there or learning about diabetes when we didn't have dexcom at that point in time. So we needed to test every hour because the two feeds were pushing so many carbs in. And her sugars are either at 5,000, not actually like 500. Seriously. Or like 30 because it was really hard to manage them while the tube feeds were going in. That was when it was like a 24/7cycle. Or if I wasn't working, I was even while working, was trying to figure out, make sure, like, you were still able to be alive. Like, that was when everything, kind of changed. 

**Caleigh (Host):**
Yeah. And I would say I was. That was the first time in my life I was even scared of dying because all the way through my first transplant, I wasn't actually afraid of dying because the decline was over years and years. And then this decline was. Yeah, it's so sudden and so drastic that being from no oxygen to being on 8 liters of oxygen full time and being scared to fall asleep, I mean, that could not have been easy on you because there were some times where I would just literally say, I don't want to sleep because I'm afraid I'm gonna die. Or I tell you, like, please don't sleep tonight. I'm afraid I'm gonna die and I'm just too tired to stay awake, which is not fair to ask anybody. But I did. 

**Bryan Takayama (CF Spouse and Caregiver):**
But it's not that it was. I mean, for as hard as it might have been for me, like, imagine how hard, like, how I'm thinking about it for you. Like, that's how you're feeling. 
That's crazy. I'll do anything to help you. And, like, you're just the one that's trying to survive. 

**Caleigh (Host):**
Yeah, well, besides my emotions, which are. I'm already tearing up because it's like thinking about those moments. Those were some of the most scary moments for me. For me in life. 

**Bryan Takayama (CF Spouse and Caregiver):**
We got years of crazy moments ahead of us. 

**Caleigh (Host):**
Well, I still think about those, though, because I was out of the hospital. So much different. But, like, how was that emotional tool on you and what were you doing to find self care, find ways to sort of deal with this emotion? Were you reaching out to friends? Were you finding friends in the community of caregivers or in cystic fibrosis community at all? How were you dealing with it? 

**Bryan Takayama (CF Spouse and Caregiver):**
I don't think my answer is going to be as helpful as you probably hope in this, for this sort of podcast, but I think my job taught me really well how to compartmentalize emotions. So like when I needed to focus on work to make sure that we could afford what were doing, like I would be able to just kind of like close off and focus on work. And then when I needed to support and when were going through hard times, it wasn't allowed. It wasn't about like allowing my emotions to get in the way. It was very much like we have very sad things we need to do to make sure that you are as healthy as you can be. Or like we're meeting like your health requirements and it's like we do those and that's it. 

It wasn't about allowing like emotions to kind of cloud judgment or not necessarily get in the way, but like I very much just kind of closed off. I had friends in the area, I don't think I talked about it very much with friends, but whenever we needed to do like a, or like I needed a little bit of a blow off valve, I would hang out with them and your family would be there to take care of you in those moments. But it was very much like we knew what we had to do to push forward and we did it. It wasn't. 

**Caleigh (Host):**
That's what made being with you so different from, I guess my support network previous. And the way that I knew how to care for myself, which at that point I was mostly being cared for still throughout my entire life, was that you are a logistics person, you are somebody who looks at numbers, you are somebody who looks at statistics and stuff. And so for you it was all about control. And I didn't quite know how to control things completely as well as, you know, learning from you. And also like, I just didn't have people in my support that were doing it that way. 

So let me word it better is, you know, I used to have all of my pill boxes on a top shelf in the kitchen and every morning my mom would sit there and take all of them out and put it into this…

**Bryan Takayama (CF Spouse and Caregiver):**

That’s bananas.

**Caleigh (Host):**

Yeah, put it into like a daily cup. Every morning. Every morning my brother would crush everything. Every morning. You know, it was like hours of the day spent on doing the same thing every single day. That was in a way lost because you were like, that's crazy. Why, why would you guys do it that way? Get a bunch of weeks of pill boxes, sort it at once. Yeah, it's Going to take you three hours to do it, but you won't have to think about it again for a month. And things weren't as stable. So I think, you know, things were shifting a lot more. So we couldn't quite do, like, we didn't have like a week of the same exact thing at all times. So it was a bit different. But just with tube feeds, with blood sugars, all those things, it's like you were the one who was like, if we test it every single hour on that hour, we will find out that at four hours into your blood feed, you need more insulin and two hours later you don't. And all of these things that in the hospital they sort of do for you, but in the hospital, they're not actually quite teaching you how to care for yourself. They're doing the caring. They're trying to get you to the next stage, which is just out of the hospital and into the clinics. But, you know, you're not really learning those ways of caring for yourself. 

**Bryan Takayama (CF Spouse and Caregiver):**
Just something that I'll call out here. There are so many things, I mean, even still in this day, but like, especially in those days, there were so many, like, tasks. And my mindset was like, let's be as efficient as we can to get through the tasks, so we optimize our extra time. It was, it was a concept of, like, the pills, like, it takes, like you were saying an hour to do that every day. If you're doing them pill by pill or 20, 30 minutes, whatever, versus three hours at one time, that's. That's time saved. You only have so much energy to do so many things. So, like, while you wanted to do the laundry and do the dishes and stuff like that, it was like, it was crazy. 

Like, if that takes up 50% of your energy through the day, like, I want to do that. That way we can go on an extra block on our walk. It was like, what were all the different activities we could think about to make our time most meaningful? And that's. That was something that was really important for me in those. In those times. 

**Caleigh (Host):**
Yeah. And being in San Francisco, we didn't have as much of a support system when it came to the cystic fibrosis community, you know, because all of my friends that I had post transplant were in Los Angeles. So I think that, like, support network for caregivers came later.

**Bryan Takayama (CF Spouse and Caregiver):**

For sure. 

**Caleigh (Host):**

So talking about organ rejection, I was denied from Stanford, and that was just a few months after being told I was in organ rejection. I got treated for a one and sort of refused biopsies after to test whether or not I still had rejection, but I was losing lung function. It was still declining. And it wasn't by just one percentage. It was by, like, multiples of percentages every time I was going in. And I think I knew definitely my brother knew. I'm not sure at that point. You must have known, but we all knew, like, this rejection was not gone. It's still there if I'm declining at this pace. 

So now that we're talking about organ rejection, let's talk a little bit about how you jumped into action. When I was told that I was going to be denied from a redo double lung transplant, and this was a few months after I initially was told that I was in organ rejection, and at that point, I was still being given the information that I was going to be relisted at the same center, and were getting worked up for relisting. At least that's what our belief was. And then were told that, in fact, I was too ill and I wasn't going to survive a double lung transplant. What were your thoughts? 
Because I know from my perspective, it was very tough to balance my own beliefs of what was happening and what should happen with my mom and my brothers, who were definitely on the same team when it came to the way that they thought about this particular issue. 

You jumped into action. What did you do and why did you do it? And how did you really gain that confidence to sort of say no to my mom and my brother about what they thought was right? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah. So a stance that I've taken as or that I took as a caregiver in those days and that I still believe that I do, and ****I think this is very important for all caregivers is the mindset of, like, we're not here to make decisions for you, we're here to make decisions with you. We're here to support. Support you in making decisions. Like, this is your life. You're the one that's really living it. And while it impacts us, there's something that's really important to me is like, I want you to feel like you have ownership over all the choices that you make regarding your health. 

So when the doctors told you they weren't going to transplant you and wasn't necessarily that, we accepted that as fact, but you kind of not necessarily resigned to, like the way that you feel, but you're like, well, let's figure out how to live life the best. So immediately after that moment, it wasn't about, like, Knocking down doors at hospitals, yet to figure out how to get you in. It was, you said you wanted to go live your last days in Hawaii. So I remember, like, looking at the budget, figuring out how to sell my 401k. I remember, like, looking at all these hotels, and not hotels, but Airbnbs and short term places where, like, your family could come too. And, like, how we could figure out if you had 6-12 months left, like, how we could live in Hawaii. And we did that for, like..

**Caleigh (Host):**

6-12 months?!

**Bryan Takayama (CF Spouse and Caregiver):**
I don’t know, I

**Caleigh (Host):**

I think we were thinking like one, two months. 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, well, I was, I mean, planning, but it was very much like, how can we live out the. Live out your last days? Like, to be the absolute best. And, like, I was figuring out how to live your happy life in. In Hawaii. But then there was one specific and very pivotal moment where it's Friday afternoon, Friday evening, you're in the bathroom at our apartment and I'm outside of it. And I just hear you say, “fuck this. And I'm like, what? And you're like, I've been living my whole life, or I've been fighting to live my entire life, and I just now have you and I have a reason to continue living”. Not wording that entirely correctly. I don't know if you remember the words specifically, but it was something to the effect of

**Caleigh (Host):**
I was like,” I've been fighting my whole life to live. Why am I gonna give up now?” 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah. And that moment you said, I want to figure out how to get the second double lung transplant. And that's what kind of push kicked me into action. I think. I don't think I slept that night. I remember, like, filling up multiple pages of paper, like, writing out a plan. And then we got all of your medical records because, like, we didn't. We weren't getting help from your clinic, so we needed to go into the clinics ourselves. So we got all of your records exported and put into a nice Excel system. We had all of your notes. We had information about your health, your current state and everything. And we started to reach out. 

**Caleigh (Host):**
When he says we, it's. He. Bryan requested all the records. He organized them on the computer. He started to reach out to the nurse coordinators at different centers. And also the big hurdle was insurance, because I also was still on state insurance. We weren't married. And that was my way that I was getting care. I was also surviving off of that. So we had to figure out who would accept that type of insurance, which I think there was like, two hospitals. And then we had to figure out how we could get past that hurdle. I mean, there were so many actual things that had to take place before we could even talk to anybody at different centers. And while this was happening, were being told that my center reached out on my behalf to centers across the nation and I was denied from every single one. 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, we just didn't accept that at face value. And we wanted to find out for ourselves. And it wasn't a matter of insurance at that point in time, like were going to figure it out one way or another. It was like, who would accept you? And that was when we reached out to all the centers like UPMC and Duke and a number of centers in Boston and ultimately ucla. But yeah, there's a lot of logistics and a lot of emails and a lot of not great responses and then a lot of positive ones too. So, like, there was always hope. We just had to figure out how to get your family on board and how to make sure that we could get you from one hospital to the other. Because it was also wintertime and that was like a big concern in taking you to the east coast, which was if you got sick while we traveled there or while were there, like, that would be the antithesis of going to Hawaii to live out your best days. So it was figuring out how to take the most optimal approach

**Caleigh (Host):**

and also how to. Like you're saying how to get there because my team was saying, no, you can't fly there, you can't fly anywhere, you're too ill to get on a plane, you don't have enough oxygen. So the only way to travel is to go on event and get air, like med evac. And then you'd have to find a center that would transplant you off event before you're even listed. I mean, there was just so many obstacles that were put in our way where it felt like really discouraging from my point of view. But also I would look over and you were just on the computer day and night, either working or working on this. Working, working on this all of the time, making tons of phone calls and the entire time again, my mom and my brother were still super hopeful that I would be a redo candidate at the center that I was at because we knew those doctors, we knew that they had good outcomes. They had saved my life many times before. I think it was comfortability in staying where I was, which was a big lesson to me because I think I had inherited this belief that I should always stay at the same center I'm at I should stay with the people who know me best. But in fact sometimes you do need that shift in mentality on your case or that different lens on your case in order to survive, in order to get fresh new thoughts on treatment and care and you know, go for it. But you were specifically; we were getting told a lot of no's and so I'm wondering for caregivers who may be facing similar challenges and maybe clashing heads with their co caregivers or not really clashing heads because it's not like were clashing but you weren't in agreeance with that sort of care or the same sort of care. 

Do you have any advice for other caregivers who may be facing similar challenges when it comes to disagreeing with their co caregivers? 

**Bryan Takayama (CF Spouse and Caregiver):**
First and foremost, you're a team. And like the whole like being a caregiver for someone, like it requires you to be a team or nothing would be worse for that individual than seeing her loved ones fighting with one another. 

So you have to make sure that everything you're doing is in love and is being considerate of one another and being approached in a thoughtful and collaborative way. Especially for someone that's new in just diving into the; I'm less than a year into the scenario like especially for someone like Michael. Like they have a lot more experience. So my thought was always to be collaborative but never to accept any answer from the doctors or from one another as like at face value, not necessarily face value but like as fact. There was always more information to gather. 
There was always more things to learn and more opinions to get. So I think the advice that I would give after rambling quite a bit is be collaborative but also like be willing to gather more information and continue to present it to the team to help make the picture fuller. 

We never have all of the information, so just always continue to seek it out and also make decisions based on, I don't want to say like quantitative reason like but like don't make declarations or don't be like really strong opinionated on feelings. You want to make sure that you have a lot of information that's supporting everything that you're saying or else it's not. It adds a lot of value to the situation. 

**Caleigh (Host):**
When were going through rejection, organ rejection and also rejection from a redo transplant, there were a couple of tools, resources that you used to help push our case forward. 

**Bryan Takayama (CF Spouse and Caregiver):**
It was called Grand Rounds. That was one service. I don't know if it still exists. Today, it was a startup that was essentially the purpose of it was to help you get a second opinion from other medical facilities. So we leveraged that. We reached out directly to these different doctors we reached out to. Cystic Fibrosis foundation has one. You know the name. You were just talking about it the other day,

**Caleigh (Host):**

Compass. 

**Bryan Takayama (CF Spouse and Caregiver):**

Compass. We reached out to Compass for more information about insurances and our options, utilizing their services, as well as to help get into doors. And then I also leveraged my employer. I reached out to them to see how they could help us get in contact with other hospitals. I guess the point of this is like, you're not alone, and you should. If you feel alone, it's. 

You're not doing enough outreach or research to find other services. You should never feel like you're in this fight just by yourself. So leverage the Internet and leverage the other resources out there to help make these things possible. 

**Caleigh (Host):**
Yeah. Another good one that I thought of that I don't think we use, though, is just like CF groups, possibly, or the support groups that they have online through CFRI or CFF, things like that, where there are support groups for caregivers to go to specifically. And a lot of times caregivers go to these not only for support while they're going through a difficult situation, but also for advice and for other resources that other people have found that they can share with them. And there's another really good resource that Cystic Fibrosis foundation has now that's Peer Connect. We didn't have it when were going through this, but that's a great one because you can find somebody who's similar to you in either being a caregiver, being a spouse, being somebody with cf, being a parent, whatever it is, and specific to the situation that you're currently need help with or support with. That's a really good one as well. And I'm a part of it. And I actually find that a lot of times I get partnered as sort of like this peer mentor, but I'm getting mentored from the people because, in fact, they're my peers. Right. So we're talking to each other about the situation, and it's helpful on both ends. So I highly recommend that one. 

But all while all this was going on, you were still working. And I think that is something that a lot of people don't give enough recognition to caregivers for, is it's not just managing being a caregiver. You also have to manage a lot of times being the person who financially supports you and the person you're caring for and sometimes children and pets and all of those things. So the entire time we are struggling with this every single day inside the hospital, you are still working full time and you never let that slip. How did you balance that? 

**Bryan Takayama (CF Spouse and Caregiver):**
If I didn't succeed at work, my wife lost her health care and I lost my job. It was very much like I needed to do it. I don't want to speak so black and white again on this topic, but it was, I knew what I had to do and maybe that sacrifice, being able to go to weddings or go to bachelor parties or like fun weekends out and stuff like that, it is what it was like. I chose to be a part of this life. And now you are not only fighting to be with me, but you were dependent on kind of some of the things that my employer provided. Like I had to make sure we kept it up. It was a necessity. 

**Caleigh (Host):**
Yeah. So you've mentioned compartmentalizing your life and our life several times. And this is something that I've highly recognized I do as well in my life. And I've learned to do it just simply from living both lives of living in the hospital and living in my medical world and being submerged in that. And then for many years just trying to simply not like others, not see that. And so trying to have this other part of me that people were seeing and experiencing and now even being healthy. I do that.

A few times today you have spoken about your coping mechanism. That is compartmentalization. And I also recognize I do it in my life and I've been doing it my entire life because I've always had this belief that I live a double life. And some years my life is spent more days in the sick world, and some years it's spent more days in the healthy world. But it's a tool that most people kind of associate with psychopaths having. But I don't think it is at all. I mean, if maybe people want to say that it is, then fine. But I think it's been super essential and critical for me, for my survival and just my mental state. 

Let's talk about last week. Last week I spent hours and hours every single day on the phone with insurance and pharmacy and going back and forth and trying to get medication from the United States over to Spain, which is not easy. Right. And it was really difficult. 
But then I'd have to leave and go to Spanish class or leave and meet up with a friend to eat lunch. And I was like, frustrated for hours on the phone. And then I'd have to, like, turn it off and go into, like, a more me. Like a positive. Not saying, like, people wouldn't accept my frustration, but, like, I don't want to bring that frustration to others because I don't want to trauma dump or stress dump other people. So how do you compartmentalize? Like, is there any sort of, like, structure or helpful tips? Because for me personally, I just think it, like, happens. I don't really try to do it. I just do it naturally. It's the only way for me to not be, like, depressed and sad. I think about things sometimes. Truth. 

**Bryan Takayama (CF Spouse and Caregiver):**
And I agree, not for you, but for me. So the way that I learned how to compartmentalize, it wasn't like I trained this skill. Maybe I did over time, but it was from my time at Deloitte. It was. I would observe this from my managers and the partners that I was working for. We would have back to back meetings throughout the day. And meeting one would be about some topic, meeting two about a completely separate topic, meeting three would be a completely different topic. And the mindset was, is like, if Meeting 1 went horribly, we couldn't let that blend into Meeting 2's topic, or else we would not be productive in that session. So it was very much like what happened in that session stayed in that session, and we would deal with whatever happened there later when we had time for it, but we couldn't allow it to interfere with the next one. And I think that is how I started to live my life, especially in these health situations. 

It wasn't how this doctor's appointment went. We would deal with however it went. But if we had an hour of free time afterward, we're going to go walk in a garden or drive to Napa or go do something fun. Like, we shouldn't allow, like, any specific moment to interfere or ruin the next or change our judgment in the next. 
And I think that seeing the benefit from that mindset is largely how why I adopted it and why it translated into this life that we're living and is a core part of our life. 

**Caleigh (Host):**
That's well said. Now that you say that about Deloitte, I also have to say it's probably my mom, because my mom, like, whenever we'd have really horrible appointments or horrible news that would probably put me into a lesser than positive mindset, my mom would help me in, like, blowing that off and shifting gears by just taking me out of that element which was taking me from sitting on the couch on the oxygen, dealing and processing what was wrong by putting me in the car and taking me down, you know, the block to the beach and letting me sit on the sand there and like, look at the Golden Gate Bridge and look at the dogs. And it wasn't that we didn't process it, we would still talk about things, but just being outside of that element and some fresh air with some vitamin D and all that can really shift the way that think and handle things. 

**Bryan Takayama (CF Spouse and Caregiver):**
Absolutely. And I think a something that we're both saying but not specifically mentioning is it's the concept of when you get an email that you're not happy with, don't respond immediately, respond the next day. And it's because you are giving yourself time to actually process it. And now when you do choose to look at it, you're looking at it through the lens of logic and rational irrational thought as opposed to one clouded by potentially less than positive emotions. 

**Caleigh (Host):**
That's another lesson you've taught me, I think, in dealing with relationships with healthcare workers, because especially when you're dealing with steroids, if you have an infection or you're post transplant or whatever it is, the steroids can really cloud your judgment and perspective sometimes. Because roid rage is 100% real. Yes, I've experienced it many times. For those of you who are listening. Couldn't see. Brian literally just imitated me post transplant where I literally just was so fed up with the fact that my ICU nurse was like pulling me out of bed to walk several times a day, which was necessary to my recovery. But I was just like, I just want, I'm in so much pain. I was only on Tylenol, I was on no pain medications, fresh out of transplant, and all I could do was like, throw my hands up, scream. 

Not directed at anybody, but just directed at the world, and like let go of that like, anger or like angst. 

**Bryan Takayama (CF Spouse and Caregiver):**
”arghhhh”, that’s the sound that she made. 

**Caleigh (Host):**
And my dad was there like just staring at me like, is this real? Is this happening? But it was, I mean, it allowed me to continue the day because like, once I got that out, I was like, okay, fine, like, I guess I'll go for this walk that's saving my life right now. But there's like many, many times for one reason or another where I know I do get frustrated with my healthcare workers that are simply there to do their job and keep me alive and help me survive and give me a better life. But sometimes you don't always see it through that lens and that perspective because you're just in pain or you're just tired or you're just dealing with a lot. You know, there's constantly tons of on our plate. And you have taught me that like I can't just, I don't think I've ever really like lashed out on people, but like, I can't just respond right away. I need to like have a second. And whether that's like just thinking to myself whether it's writing, because writing's always been very good for me, a way for me to reflect and have like a overall lens on something rather than just like a one sided point of view or it's talking to you, which I know I do a ton. I hope I've gotten better at it. But especially in our early days of, you know, when you became like my sole caregiver, you were the person because it was my brother. And I say too, like, my brother was a big person that I would dump all of my stress on all the time. We'd have like an hour to the hospital, an hour home every single day and we just talk about things and my brother also is very good at like looking at it from several point of views. I'll give him that like every single day. And you guys both are the people that I like dump all of this on. 

So how does that affect you emotionally? Because you're not just dealing with your emotions in the matter, but you're also dealing with mine, which I, I feel the same way. I'm like, I'm not just dealing with mine, I'm dealing with yours and the doctors and everybody's. But you guys are doing the same stuff. So how do you deal with that? 

**Bryan Takayama (CF Spouse and Caregiver):**
Well, I think I can say immediately that it would be way harder to be effective in the role that we're playing if you didn't do that. Being able to be a partner in your emotions is I think critically important for us being able to support you not just from like the emotional connection that you sharing that and trusting with that vulnerability makes, but. And us being able to shape how we're viewing all the events happening around you to help be your best caregiver. So it's heavy to get a lot of emotions. It's heavy that we're all going through all this. But like, I think it's critical for you and caregiver for patients to, and those that are receiving the care to be vulnerable and be open. 

**Caleigh (Host):**
So post second double lung transplant, we had lived at UCLA for six months. I had Then had three open heart surgeries. It was like another six months of just basically being in the hospital all the time. And within those six months, my brother moved back to San Francisco. Right. He was trying to stay in LA for a little while and decided that San Francisco was the best place for him. So he moved back to San Francisco. My mom had stayed in San Francisco when you, my brother and myself went to UCLA. And so you completely took over caregiving for me 100%. It wasn't like you were all alone. My family was there as much as they could be. But I'm saying realistically, dealing with my insurance, my pharmacies, my day and night stuff, you know, dealing with the stuff that I hide from other people because maybe I don't want them to see the pain or the struggle or whatever it is. I know a lot of times, like when my dad came on Wednesdays, I just want to have a good day. I wouldn't want to pour my heart out all the time. Not that we didn't have great talks, but sometimes it was like that was my escape from what was happening, which I don't always feel is fair to the main caregiver because like you guys are dealing with everything. And then I heard this from my brother a lot. Like he's dealing with everything and then I get to go have fun with whoever I was going out with for the hour and he's like, it's not always, you know, the most fun because then I have to go home and deal with everything you just said to me and what I'm dealing with and everything. 

**Bryan Takayama (CF Spouse and Caregiver):**
I felt that very significantly. When you were living in the hospital pre transplant, it was like the hardest. Like I almost started to going. I did go try to go to therapy for one class. It didn't. Everyone in course session didn't really go that well, so I didn't go back. But I remember feeling like I was working so hard and there was so much like in doing all the things I needed to do. But like you were in the hospital with your mom and your brother so much and they got to enjoy like all the time with you, even though we didn't know how much time you had left. And I remember calling my dad and asking like, because I this is the way that I felt. 

The only thing that I could relate it to is like mom raised my brother and I and she got to spend all the time with us, taking us to school, sports and being there for all the things and like all that. But he was working two jobs, 5am to midnight, and like very little time. And I asked him, like, how did you cope with like all of your work going into raising my brother and I when you didn't get to spend any time with us? And his response was, it was what I had to do for you guys to be able to live and that really helped me become okay with it. But that was really a hard moment because it was that same concept. 

**Caleigh (Host):**
That's a good share because I'm sure a lot of people that are listening to this probably feel that way, especially in today's society where a lot of times it's not like one person, one parent working and one parent getting to raise the children. Most of the time it's both parents working and their kids going to daycare or, you know, being cared by others and spending that time together. So I think a lot of people in general can just relate to what you said and your dad is always somebody who just drops wisdom. But I mean, what are some of like the biggest challenges that you faced during that time of my family kind of starting to grow their own lives away from like, separate from caring for me. Not that again, they weren't supportive, but like that's fact. That was one of our major goals, you know, that we both had as a couple, was allowing my family to let go a little bit and us really taking over all aspects of health, which luckily we were able to do. But what were some of those biggest challenges that you faced? 

**Bryan Takayama (CF Spouse and Caregiver):**
I think the biggest challenge, so there were a lot of mini micro challenges. It was figuring out how to be the one to be able to drive you to all of your appointments, then the collection of all the meds and the scheduling and ordering of all the meds, a lot of like the logistical components because like there was no longer two sets of hands to three sets of hands doing it was primarily just one. And then there was also the component of like making sure that we still had fun and did things right because like you were just now you're regaining your health, regaining your independence and like I was also just getting back into working after being off post transplant. So it was like juggling all the logistics with being present at work when being present with you. 

So it was figuring out how to do all of those things. So I guess it was just a lot of different balls in the air and figure out which ones to focus on when. There is this really amazing quote that I read recently that I Think applies pretty well to how we approach all of these and figure out how to cite this correctly. But it was, ”Every single activity that you have has glass balls and plastic balls. Like working with the medical professionals, working at working with family and all these others. Like, it's. It's not that each one of them or like any one of them is a glass ball or a plastic ball. It's. Each one has sets of those. It's figuring out which plastic balls can drop, but never dropping the glass ones. Like, you can miss a doctor's appointment, you can miss a meeting at work, but you can. You gotta reschedule it quickly. But, like, you can never miss taking tacker at nighttime or in the morning. Yeah. You can never like celebrating anniversary. We can't miss doing that. Right. But, like, we can miss dinner on a Wednesday night or something. So it's figuring out, like, which. Which areas to focus. And I feel like that figuring out which were the glass balls versus the plastic balls was like, the hardest or the biggest challenge to overcome. 

**Caleigh (Host):**
I like that. Talking about, like, independence a little bit more and regaining independence for me. 

So post second double lung transplant, when were in Los Angeles, I was 28 years old, and now this was like, my first real time of becoming more of an adult. I got married and I was still being cared for. And, you know, these are things like doing the laundry, going on a walk, getting groceries, turning into. Now dealing with insurance myself and dealing with pharmacies myself and doing all of my appointments by myself and fully taking independence on all of those things. Of course, like, sometimes I do need help, and that's fine. Can you share your philosophy behind, you know, allowing me to have that independence while also not giving me too much that it's either overwhelming or dangerous for me? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah. I think the first thing that I want to just call out as. As you were explaining that you've made a comment like, how did I help teach you independence? I don't think you teach independence. You give people the opportunity to become independent.  Most things that you do throughout the day, like I could do for you. But, like, one, I don't really want to do that too. I want you to feel like you have the ownership and the autonomy to do it. Life is much more exciting in the world, and there's so many more opportunities when we are both feeling independent and capable of making decisions. And that's something that I think is important for my philosophy on how I want to live. And That's one that I wanted to share with you. ****

Early on in my career, one of my, like my coach at the time, she said no one's going to care about your career more than you. So like don't sit by waiting for other people to help you progress as fast as you want to progress. And this is something that we took into account with your health, with your medical providers was no one's going to care about your health or like the way that you receive care more than you. And that proved successful when we got into UCLA and similar. I think we now talk about that a lot where it's like no one's going to care about your professional journey or like you're like your maturing journey or your growth journey as much as you. 

So like you have to take it and you have to own it and I'm fully supportive of it. There might be times where we disagree or where there's some challenges that arise from it. Like that's all part of us being us growing up. 

**Caleigh (Host):**
Yeah, it's true. How, how you say, like giving somebody the opportunity to become independent is really huge in that person becoming independent. You've always been somebody who's like really pushed me along in a different way. My, my mom, my brother and my dad have similarly like pushed me along in life to do things and be capable of things. But you've done it in a way that has given me this like self empowerment belief of being able to go into the world without you if needed. And we talk about that a lot too because I think that's really necessary. This isn't something I prepared to talk about, but like we've talked about, if something happened to you, what would happen to me because I don't have my own career, I don't have my own income. I. You do so many things. 
We talk about that because one, I want to be prepared so I'm not blindsided. I know how to go about these things. So in a way it's a little bit selfish just so I'm like not completely just left in the dust. 

**Bryan Takayama (CF Spouse and Caregiver):**
Independence is about being informed too.

**Caleigh (Host):**

Being informed. So I know that I can survive without you. Because again, it's this sense of confidence of being able to know, like if something happened, I don't have to immediately pick up where I am, move in with somebody else, rely on that person heavily, put all of my eggs into being like still and stagnant in one place. I can still live the life I want to live and know how to do it. And so we talk about that A lot, which I just am putting out there. 

Like as a caregiver, it's not just about caring for us when we're ill, it's about caring for us when were not ill and giving us the tools to succeed in life, you know, whether it's in a medical situation or not. Because caregiving sometimes is also mixed with just being a partner in life. 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, I think the, what I'll just say in summary of like all this, the independence and empowerment concept that we're touching on here is it's really important as a caregiver to be there to support the person that needs care. And I know it's very easy to get in the mindset of like we want to do 100% of the things for you and for that person and make their life as easy as possible. But there is sometimes a negative impact or there are consequences to that and it's important to figure out like where is the balance in doing for to make their life easier and empowering to ensure that they feel empowered and feel independent. So like it's a tough balance to find and we're never going to, we're not going to do it perfectly. But like, I think it's very important to be cognizant of this and thoughtful of it on a very regular basis throughout the journey in very sick days and very healthy days. 

**Caleigh (Host):**
Do you think that you've found ways to motivate me to be that way or do you think it's like in my nature? How do you find when I just, I think in the beginning I was more wanting to do the laundry, wanting to make meals, wanting to do these things because it's like also to prove to myself that I can do it, to take the weight off of others who have been doing it. There's a lot of like guilt that comes along with relying on somebody. And so I wanted to like lift some of that burden. But as time goes on there's definitely times when I can be lazy and, or I don't want to do something. 
Have you, can you give an example maybe of when you've seen that trait come alive in me and like how you can motivate me or push me along? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah. Something that your brother and I both, we've talked about quite often and we both deploy pretty similar tactics and it's all about goal setting and then creating bite sized ways to achieve that goal. It's whenever laziness sets in or it's not, you're not a lazy person. It's whenever, like, motivation is not there, it's figuring out how to make the steps to getting there attainable. Because I think big goals are tough, big, just the nature of them. But not achieving that goal immediately sets in, like a feeling of failure. And failure is very harmful to your motivation specifically, and I'm sure to many people. So it's like, how do we feel successful on the journey to the big goal is something that's really important. 

**Caleigh (Host):**
It's something I do to myself where I'm like, I have big imposter syndrome. I consider myself failing at a lot of things that I'm just have never done and I'm trying to do. And so, yeah, you do find ways, I think that's true. True. Like, to make me feel like I am succeeding along the way. And it's not just like I have to push out the best product right away. 

So Covid obviously impacted everybody in the world, but it impacted our family very dramatically. We didn't see friends or family. We didn't see anybody. And that meant you also didn't see anybody. But you could have seen people like, you have good health. You could have done what some of our friends did, which was go travel, and at a lesser cost. You could have experienced different things than I had to experience. 
But instead, you chose to completely lock down as well and sacrifice seeing people. How do you keep doing that year after year, you know, challenge after challenge? How do you continue to make those sacrifices on my behalf? 

**Bryan Takayama (CF Spouse and Caregiver):**
This is the life that I signed up for, and it was like, you're number one. Like, when we started dating, I knew the challenges that were going to face when we started dating. When we got married, I knew the challenges that we would face with your health. And then, well, we didn't foresee a global pandemic happening. Like, you're. You're my number one goal. So the choice is easy. It's actually not even a choice. It's just a natural decision. 

**Caleigh (Host):**
So going into more of our healthy years. So Covid happened, and we decided to jump in a van. We were trying to figure out something sort of how we could benefit from my healthy years. Right. I was feeling like I was sort of wasting my health. Now that I finally had health, I was just at home not doing much. I was trying to figure out what we could do. Traveling sort of fell in our lap because of a wildfire, and we had to escape it in a van. And we decided to take that route and start traveling in the van. And we haven't stopped traveling. We spent about two and a half years in the van. Never thought we'd do that. And all that time, were able to stay healthy. Right. 

We had a few times where I was hospitalized in different places, but were able to handle it due to just the fact of organization, of keeping all of my records, keeping all of my med lists, my, you know, doctors on. In constant communication with my doctors, and knowing and building a relationship that was strong enough that if something did happen, we could rely on them. And there's a lot of things that we did to create this lifestyle that we're living. And now that we're living it four years almost down the line and we're traveling, people want to know how we do it. This is the biggest question in the moment, second to how we met and how we started dating and how we've been able to have a strong relationship. This is the second question I always get. Like, the most popular question, how do we travel? How do we do it? What are some steps that you took in preparing to take me and all of my, like, medical stuff on the road that you knew in order to travel, in order to live this life? Like, these are things that you need to have prepared on your end. And also, what responsibilities did you maybe hand off to me and could count on me to do? 

**Bryan Takayama (CF Spouse and Caregiver):**
Yeah, I think that's actually the most amazing part of the arc that we're going in. Throughout this room journey is the only things that I really did were coordinate logistics of planes, make sure we had international emergency health insurance. And getting the van was pretty extreme because were going to be living in wilderness and sometimes be very far away from anything remote. So it was just one making sure there was enough storage in the van to have emergency supplies of meds. We were never going to. We were no longer going, like, 30 days at a time for our meds, but making sure that we had much larger, longer in larger stocks. So a lot of space was allocated to this. This was for IV meds, for port flushes, as well as for your medications. It was being aware of our proximity to good hospitals at just about any time, whether were going to Alaska, which we did end up needing to go to Providence up there in Anchorage, or traveling in any zone like Utah or Montana, where there isn't solid proximity, some fantastic hospitals. So being able to know where they were and how to quickly get there, having emergency access to communications, because if were going to be in a remote location, we might need to have an SOS call to Be able to get some support. So having a garment in reach and having emergency exfiltration. Exfiltration insurance. I mean, like, any, like, were never going and doing, like, serious, like, rock climbing in the backcountry or backcountry skiing and stuff like that. But like, there were times where were far from services like 911 wouldn't be able to reach us. 

So being able to utilize our Garmin to connect with the satellite and get in touch with a operator anywhere in the world, and then that person could then call on any sort of services to get us in an emergency, like that sort of service. 

**Caleigh (Host):**
Yeah. So paying for insurance, that would do like search and rescue and stuff like that? 

**Bryan Takayama (CF Spouse and Caregiver):**
Oh, yeah. I guess the basis of it all is just making sure that were prepared. There's a lot of logistics that go into being prepared and having a thorough list to make sure that we covered our bases. That was what we did to make sure it was possible. And it was making sure that, like, were accepting more risk by doing this inherently. But balancing that risk with preparedness was something that we constantly did, but we evaluated it on a regular basis and made sure that each decision took that into consideration. 

**Caleigh (Host):**
Yeah, I think also, just like, having confidence in one another to be able to handle the situations is really huge because we do assume a lot of risk by living this sort of lifestyle and traveling to places. But like you're saying in preparedness is we really nailed down, like, what is the biggest risk to my health that could happen while we're traveling or while we're away. Let's nail it down to infection and my GI system. What's going to happen if I get distal intestinal obstruction syndrome. And so we looked up both of those things and you were willing, thankfully, to take on that role of being able to access my port. 

Because we had an incredible home nurse that were seeing, and were about to set off in the van, and I remember I was like, I want to learn to access my port in case, you know, something happens. But also you also took that lead in being like, oh, I could learn. Because if you're not feeling well, how are you going to experience be expected to, like, access your own port. So you learned how to access my port and do it in a safe environment and clean environment, and how to also give me fluids, how to give medications, all of those things. 
Because a lot of the time, too, it's like being a caregiver is just learning constantly and, you know, giving yourself tools to be able to keep this person stable, basically, because if you're really sick, you need to go to the hospital. But just keep me stable enough to sort of like combat it and not go straight to the hospital. A lot of times previously, if I got dios, I would have to go to the hospital right away. But in this case, were able to learn how to give me fluids and do manipulation by, you know, rubbing my stomach and finding ways to actually go to the bathroom on our own without needing to go straight to a hospital and getting help. 

**Bryan Takayama (CF Spouse and Caregiver):**
When we build our long list of things that we need to have, one of them was she needs to flush report every. Every once a month. And if we didn't learn how to do that, then we would have to go to a medical facility that would be willing to do that once a month. And that's a massive bottleneck to being able to travel around the world. So we learned how to do that. It was like figuring out what your checklist is. Things like insurances, the various different forms of it, things like the contingency planning. It's just being prepared, walking in, you're going to make mistakes, you're going to run out of things that are going to be. Things are going to happen. Having a plan for it is what you need to do. 

**Caleigh (Host):**
Yeah, just organization, right? Like you built a really strong organization tactic for us to be able to easily see my list of medications, my providers, all of their contact information, which medications I get from which pharmacy, the numbers for insurance. Like you sort of gave me that organization and then I was able to like input everything into it. And. And that was huge in me taking over because I have goldfish brain due to medications, I don't remember anything. So there's no way without like detailed notes, I would know when to refill medications or the numbers to this person or how to get, you know, this and that. So that's a really big one for us. 

**Bryan Takayama (CF Spouse and Caregiver):**
And one thing I'll just call out there because it sounds like we are like, Caleigh's put a lot of emphasis on my professional background and my degree and like the amount of effort I go into data organization and those sorts of things. I don't love data organization. I don't love maintaining different data systems to be able to organize all this. But there's so much value investing time into creating it because of the amount of freedom and higher fidelity of outcomes that it enables. So like there's. You don't have to be that person to be able to create and do these sorts of things. Just put in the effort on a weekend or whenever you can. And it will pay dividends. It's an important thing to note. It's not something we do just because it's something I'm good at. 
It's something that we do because there's so much value in the activity. 

**Caleigh (Host):**
All right, well, just to close this off, what are some of your favorite, best moments that we've shared together since being together?

 
**Bryan Takayama (CF Spouse and Caregiver):**
We have insanely large volumes of amazing moments. Like from our wedding to our stories of getting together, to van life, to now living in Spain. But I think my. My favorite moments are every time you achieve something you didn't think you would be able to achieve, the second double lung transplant, walking up those stairs, the 10k you just crushed. Remember doing like the 14 mile hike in Yosemite with you climbing on a Glacier in McCarthy, Alaska. Like, every time you do something that you didn't think you would be able to do, whether it because you never thought you get the chance or you never thought you'd physically be able to, like, every time that accomplishment occurs, like, there's like this, I don't know, like a butterfly learning how to fly again. It's like the coolest thing ever.

And every time those happen, I just like everything. All the hardships, all of the tough times are 100% worth it because you're getting to have those. Those experiences and I get to have those experiences with you. And it's like, sort of really great. 

**Caleigh (Host):**
What would you say to somebody who would ask you why you would be with somebody who's terminally ill? 

**Bryan Takayama (CF Spouse and Caregiver):**
I didn't marry you because you were terminally ill or because you were not terminally ill. And I didn't like, start the relationship with you for any one of those reasons either. It was. You are the most amazing person I've ever met. And I knew that the day I met you and you just happened to have these circumstances. So, like, for me to be with the most amazing person I have ever met, I had to adapt and learn to work with those circumstances. And that's just the way it is. 

**Caleigh (Host):**
I just want to thank you for being so supportive to me and for teaching me along the way as you're learning as well. I know that our life is not easy. There's so many challenges that we face that others don't. And you've adapted amazing to those challenges. But I truly do thank you for making the choice to be in my life. Because I don't think I could have any better of a partner. Honestly, not during my sick days, not during my healthy days. I could never find somebody more of a perfect fit than you. 

**Bryan Takayama (CF Spouse and Caregiver):**
I love you forever and always. And thank you for making it easy to be this person for you. 

**Caleigh (Host):**
As we close out today's episode, I want to take a moment to talk to you directly. Our listeners. Your voice, your story and your support are what make our Fight to Breathe a powerful platform for change and connection. We believe that every story has the power to inspire and create change. Whether you're living with cystic fibrosis, a caregiver, a medical professional, or a supporter, we want to hear from you. By sharing your experiences, you're helping to create a world where no one feels alone in their CF journey. Your voice can offer comfort to someone in need, your experiences can provide valuable insights, and your support can drive advocacy and awareness. 

Share on social media using the tag Fight to breathe that's @Fight2breathe or email us at [caleigh@fight2breathe.org](mailto:caleigh@fight2breathe.org). follow us on social media Fight2Breathe and share our episodes with your friends and family. Engage with us through comments, questions and discussions. Advocate for better treatments, support systems and awareness by partnering with us in campaigns and initiatives. Initiatives reach out to others in the community, offer your support and build meaningful connections. Together, we can create a powerful network that uplifts and empowers everybody. Every action, no matter how small, contributes to the strength and resilience in our community. By engaging and sharing, you're helping to foster a sense of belonging and hope for all those affected by cf. Together, we can unite, inspire and empower each other to face the challenges ahead with courage and confidence. 

Thank you for being a part of our Fight to Breathe. Let's continue our journey together, one story at a time. 

And a heartfelt thank you to the Cystic Fibrosis Foundation's Impact Grant for supporting this podcast. See you next time.