653 – Advocating For Your Own Medical Needs

Well, today we are going to have Sarah Hart Unger back on the podcast sharing an unexpected event that she has gone through, which is timely and relevant to both of our audiences. Sarah, welcome back to the Organized 365 podcast.

Thank you so much. It's always an honor to be here and always fun to chat with you, Lisa.

Now you have 2 podcasts, so you have your podcast, Best Laid Plans, and then you also have a podcast that you co-host with Laura Vanderkam called called Best of Both Worlds. And so I think I've been a guest on both of those.

You have been a guest on both of those. I think maybe even multiple times on some of them because we love your work. We love how you think. And, um, it's just always fun to chat. Yeah.

And I've had you and Laura on my podcast, I think multiple times also. So we all, we are planners like you, me, Laura, we are, we are planners. So I want to start by saying that this podcast is about an unexpected event. From, from you, and you are very planned. But before we get into that, remind everybody who lives with you in your house. And also, I would like you to tell us— I don't normally ask this question, but I would like you to tell us what your profession is and what your spouse's profession is.

Yes. Okay, so I am married. Um, my husband is a vascular surgeon. I am a pediatric endocrinologist, um, which means I treat kids with like all kinds of hormonal things like diabetes and early puberty and all All sorts of stuff. And then I have 3 kids, ages 7 is my youngest, and then I have a, she's a girl, and then I have a boy in the middle. He's 11. And then my oldest daughter is 13. Lisa, I have a teenager. Oh my gosh.

I remember when you were pregnant. That is how long I have been, I mean, at least, oh my gosh. So we've known each other at least 7 years.

When I started Best of Both Worlds, our intro said something like, I have 2 kids, soon to be 3.

Oh my goodness. Okay. Yeah, that's probably then when I found you. Um, wow, I cannot believe she's 7. Okay, I'll, I will focus myself.

All right.

So you're a planner, 7 kids, you and your husband work in hospitals, like you are doctors.

Yes, we are both doctors.

This I think is relevant information for what we're going to talk about. So you're in a double medical household and then you had this medical event happen to you. And if you wouldn't mind explaining what happened, which will set the stage in as much detail as you're comfortable sharing.

Yeah, I have no problem. I've told it a few times by now, so hopefully it's gotten more streamlined too. But this was the definition of unexpected because I am 44 years old and about to be 45, but whatever, still 44 for now. And I'm a runner. I'm very healthy. I, you know, I, everyone has little medical things. I've had migraines at one point, but honestly, like, I don't take any meds. Like, I'm a very healthy person and have also been running for most of my life. I've run 6 marathons. Um, 4 of them were before I had kids, and then in 2020, 2023, 2024, I kind of like was like, oh, my kids are bigger now. I kind of want to run again and started doing marathons again, really enjoying my training. And I ran a race on March 2nd, 2025 in Miami Beach where I was like, okay, this will be fun. You know, half marathon, like many, I've done dozens, you know, and 11 miles or so into the race, I suddenly was like, ooh, something's bad in my body. Like, I guess this was a really bad race. I bonked. That's like a word runners use when they like all of a sudden feel like they ran out of fuel. But I'm like, I don't bonk. What the heck? Like, this is so weird. So I kind of like text my husband. I'm mad that my race didn't, you know, end the way I wanted to. And I start kind of walking and jogging to the end. And I get to the end and I'm like, hmm, like I've stopped. My heart seems to not, not be getting the message. Like, why does my body still feel like it's working really hard? I'm like, okay, I just need to walk around a little. It's fine. And I find my friend who had done really well. I was mad. 'Cause she beat me. And like, I was like, I wanna beat— I should have, you know, done better than I did.

Yeah.

And 'cause my mind was not thinking of anything serious, it was just like, oh, it's a race. But I'm walking around and I'm, I'm feeling like, what's like, something's off. So I go to the medical tent with my friend. I'm, um, she calls my husband and is like, Josh, I think you should come meet us over here 'cause Sarah's not feeling great. And initially they put the pulse ox on and they're like, you know, I think you're fine. Your blood pressure seems okay. I think all good.

And I'm like, Okay.

And I get up to walk away and then, uh, I'm like 5 steps away and I'm like, no, I think I'm having an allergic reaction or something because I feel like I can't breathe in. Like I'm breathing through a straw. And that's what anaphylaxis is, right? I mean, I don't even have any allergies, but my brain was not doing that great. So I was like, okay, I'm having anaphylaxis. I gotta go back there. Maybe I need an EpiPen or something. And I sit down and they're like, let us just put the monitors on. And then like everything changed because—

So you mean like EKG heart monitors?

Yes. Yes. Okay. Because like the pulse ox only picks up like What pulses are going through to your arms or finger, but the heart monitor actually shows what your heart is actually doing. And my heart was not doing anything normal. It was like beating 260 times a minute and it just looked like these zigzags. And they, they know, they're like, that's bad. Um, so all of a sudden, like everything changes. My husband had made it over there. And honestly, it was kind of a whirlwind after that. I, my blood pressure dropped some and I know just like, this is not my field at all. I treat kids with thyroid issues and diabetes, and I don't know adult cardiology, like, at all. And, but I knew enough to know, like, okay, that low blood pressure they just read off is bad. And, um, they start talking about, like, the medicines they might give, something called adenosine and all this other stuff. Um, and they're putting me in the ambulance and they start talking about, like, shocking me and they're trying to put IVs in, like, everywhere. Like, this part's kind of, like, blurry. Um, and knowing a little too much, I was terrified of being shocked. And I kept saying to them, like, I don't, I don't think you're supposed to get shocked when you're awake. Like, shouldn't I be asleep if I'm getting shocked? Like, can you get me to the hospital so I can be asleep? Because I don't want to be shocked. And I was like doing my times tables and like trying to like do anything to convince them I was lucid enough to not shock me. Because I guess based on my vitals, they wanted to shock me. But I'm like, my brain still works. And I'm also starting to panic. And, um, they gave me this medicine called adenosine, which actually made me feel like the light was fading out. Like when people are like, oh, I saw death, like that, that it almost felt like that. And I was like at one point saying like, I love my children, like protect my babies, like all kinds of Crazy stuff.

Oh my gosh.

So it was like a ride, you know? And then I, I get to the hospital and, um, thank goodness they were able to get an IV in me and they did. They put me to sleep and they shocked me and it worked. My heart went instantly back to like a totally normal rhythm. Um, and apparently my, my husband said I went like, what happened? Um, and they were like, wow. So I wish I could say like, that was the end and now I'm fine and it's over and like, That was just a freak thing. But long story short, the rest of it I'm gonna keep really short. I was in the hospital for about a week because when that kind of thing happens, they're like, why? You know, a 44-year-old should not, just 'cause she ran a race, should not cause this.

Right.

And over the course of getting a million tests and imaging and heart rate monitoring and an MRI and a CT scan and an echo and 2 caths, it turns out that I have a condition that's called arrhythmogenic cardiomyopathy. that predisposes you to arrhythmias and can also progress over time, gets worse with exercise, and probably has some genetic component. Um, although that part's kind of complicated. That took a long time to figure out. I spent 2 nights in the ICU. Um, the rest of the time was in the hospital.

Wow.

Um, and then finally got an implanted defibrillator towards the end of the hospital stay because they felt I met criteria and that it would be safer for me to go home with that. So that was like a surgery kind of at the end of that week where they put it under my arm. It's like in my armpit. And then I went home. I had 2 weeks off of work after that, so 3 weeks total to kind of recover from all of that and also the surgery because it like hurts, you know, they stick something under your muscle. And then since then it's been slowly seeing other doctors, working on getting other opinions because— and I know, Lisa, you've had experience with this— like my case is not a boring, like straightforward, like, oh, this is so common, we see this all the time. Like—

Right.

It was like, no, no, no, there's one center that treats this, or maybe like a few in the United States and just a few experts experts, and you don't even want to trust a diagnosis from, like, you know, a non-expert center because you could be misdiagnosed. So we're going to talk about records and stuff, but putting all the information together in a format that will be, you know, accessible for the ultimate experts has been really, really important. And I felt like there was like a deluge of stuff just like coming at me as someone that had totally boring medical history before and now has like—

Yes.

CDs and reports and labs and this and that. It's like, it's a lot. And I'm even leaving out the part where like my liver enzymes and my cardiac enzymes were elevated and I had, you know, like stuff just cascades into stuff.

Right.

But as of now, this moment, I'm fairly confident with the diagnosis and I'm actually going to a very expert center in a week where I think I'll get confirmation of everything. So that's where we are.

Well, first of all, we are so grateful that you are okay.

Thank you.

And then I know when you tell your story on your podcast that, you know, that you went back to the tent, that you were so close to a trauma center, that you knew where you were going, that there was a good trauma center, that, you know, like, there are just so many things that were in place to make you have the positive outcome that you did. So, so very grateful for that. I remember listening, and obviously, when I'm listening to the podcast of you telling it, I know you're okay because you're giving the podcast.

Yes.

It's not like somebody else is giving the podcast. So I was like, Holy cow. And as I was listening to your podcast, I was like, she's a doctor. Her husband's a doctor. Like, like, if this were to happen to me, I am— I mean, I'm going to be a PhD, but that is not a doctor. Like, and so I want to unpack this in a couple of ways for those of us, because someone asked me, you know, I'm getting ready for Abby to have back surgery. And someone said to me, okay, this is great that you're explaining how you prepared for Greg's surgery and, and Abby's surgery and taking care of Grace and all that. And they said, well, what if it was you having surgery? And my mind was blown. I was like, well, I mean, I'm screwed. Basically, that was what I thought. Okay, I'll need to prepare every single thing I want in my upstairs room and put a microwave in there. Like, how can I be self— and you can't. Like, you cannot be self-sufficient when you are the patient. And I think so many of us women are like, so I want to start there. Like, what was this like experiencing this as the patient and not the doctor?

It was totally wild. It was totally wild. I mean, sometimes again, I feel like the lines blurred. Like, I think most people wouldn't have known to like be scared of being shocked or be like, no, I need to go to sleep. Like, they might not have like done that. But then again, it was an area that I knew nothing. I still like, I, this is not my area of expertise. So for me to like pretend I actually knew what to do in any of these circumstances, and my husband too, um, would have been way out of line because we were not experts in this particular area. Um, so I don't know what we could have done. To like prepare, uh, you know, it was weird. I mean, even just being in the bed, like being on the wrong side of everything, it's like, you know, how many times have I rounded on patients? I will say I was just so grateful for like the nurses that were nice, and I was like, oh my gosh, like I knew it meant a lot to the patients when the, the staff was, was like nice and listened and stuff, but like to really feel that firsthand. And, and it really is like the nurse— like the doctors are very important in determining the plan, but like Your hospital experience is all about your nurse and even the nurse, like the nurse assistants and the blood draw techs and everything. And like having nice people on that. Like it was really, it was really great to see that. And yes, I do feel just really lucky. Um, cause this could have happened like anywhere and to get to go to the hospital. But the funny thing was I did go to a hospital that wasn't my hospital and wasn't my husband's hospital either, because I don't live in Miami Beach. That's just where it's like an hour away. Like that's where we went to run the race.

Yeah.

It's where my in-laws live. live, which actually worked out really nicely because they came and supported me and did some stuff. Um, so yeah.

Okay, so you're on the other side of the bed, you're in a hospital situation. Um, I would love to know, were there any tips or tricks that you were able to employ as the patient where you're like, oh, I know how this goes, so I'm gonna do this? Or how were you able to navigate that hospitalization as a medical professional? Give us all the tips.

I mean, I do feel like I was good about knowing that I should write down my questions because that's something that I tell patients all the time because things will pop in your head at like 2 in the morning and you're like, no, start a notes document right now. Like, because you're going to want to ask these when you're in a better frame of mind. And also there's no one to ask at 2 in the morning and I wouldn't want to bother someone at 2 in the morning. So that was, that was one thing that helped. Um, I also feel like I knew to take any opinion with a, with a small grain of salt. And I mean, that's a controversial thing to say. I don't know what to say because I think there is a fine line between, like, listen, if a patient gets diagnosed with diabetes, like, there's really only one treatment right now and it's insulin. And a parent can say, oh, I'd like to, like, research that, but, like, feel free to research that. You're not going to find another answer right now. Maybe you will in 5 years. I don't know. So, like, yeah. But then there are certain areas where it's just like there's not as much known or it's not clear-cut or a patient doesn't fit some clear, like, typical mold. And I kind of knew I was that. So I, I just knew I might have to keep an open mind. And, um, the nice thing was I actually felt the doctors were really respectful of that. Like, they wouldn't say, oh, I'm sure I know what's going on. They would say, like, you know what, we actually have to share your images with, like, the cardiology WhatsApp chat of the world to get different opinions on it.

Mm-hmm.

And I'm like, thank you. That's— I love that. Like, please tell me you're not sure because it's better. For it to be that way. So I guess, yeah, like, wow, respecting the uncertainty and knowing also the thing that helped me, that things like this take time. I think some people might have had the expectation that like, listen, I'm in the hospital, I'm ready to get out of here, I should get my rubber stamp diagnosis and like be done with it. But I kind of like figured it would be a long haul.

Okay. You are a healthy person. I mean, I know you as a healthy person. You run, you eat healthy, you take care of yourself. You even manage your stress levels and you plan like you're a healthy, healthy person. And I kind of feel like I'm— I am not as healthy as you, but I feel like I'm a healthy person. So you're kind of talking to me like, I didn't expect this for you. You didn't expect this for you. I wouldn't expect it for me. Is there anything now that you've had this experience as a healthy person, even that you would have done Proactively to be prepared.

Yes. So, and this kind of goes to some of your stuff in your medical binder and keeping closer track of your own records. But like, it would've been nice for me to have saved some of my old labs or even EKGs, cuz I get them done every couple of years cuz my doctor just does them for screening. But I don't keep any of that stuff cuz I'm a healthy person. Right. And why would I ever need that stuff? So I do feel like now I know and I'll be keeping everything going forward. And like, oddly, I feel like I've been pretty good about keeping stuff for my kids. But I wasn't keeping it for myself. The other thing is that I will admit that like there were times in the past that, um, I pointed out that I had a lot of extra beats in like 2017 and my PCP ordered an echo and I never did it because I got pregnant and then I forgot. So like, you know, I probably could have been better about carefully following up with what the thing— and even if I put that in a folder to deal with like in the future, maybe it would have jogged my memory.

Yeah. Again. Yeah.

To be like, oh, I'm feeling that again. Maybe I should actually like ask for another order cuz that one probably expired 5 years ago. Um, so things like that. So I do think paying attention to patterns and not making the mistake of being a parent and like not closely following your own stuff cuz you think, oh, you're fine. Cuz like, I think we all are probably pretty good about like, I can give you my kids' growth parameters from birth, but, um, Yeah, wasn't paying as close attention to my own stuff.

So when I went to a new OB-GYN, like, I've never been pregnant, so I stopped going to an OB. Like, I don't know, when I adopted my kids, I was like, guess we don't need this doctor. So I was talking to my, uh, regular doctor about menopause type stuff, and they were like, you need to go to an OB. I'm like, why? And they're like, well, they do menopause too. I'm like, oh, okay. So he had been following my labs all this time, which is not digitized, So when I went there and she ran my labs, she's like, oh, you know, like, you're in the yellow zone, you're not in the green zone. And so next time you come, we're going to talk about cholesterol medication. I was like, I do not want this. So I went home and I went through all my paper things and I made myself a little chart of like my numbers, like before menopause, like the last decade. And basically they have not changed. And so I came in, I was like, I understand that I'm yellow, but I've always been yellow. I've never been green. And I've been slowly getting— I'm actually getting lower yellow, more towards the green because I have been changing my health habits and my eating and things like that. So. I'm probably never going to get out of the yellow, but I'm lower in the yellow than I used to be. I'm not in the red and I'm now fully through menopause. So we've been through this 3-year transition. So this is probably my number. And she goes, great, you don't have to have medication. And it's because I knew my numbers. So when I— when you say that you have had these numbers done, were you able to go back and get them? Were they digital? How did you—

My old EKGs? No, I think my— like, I'd have to go through my doctor's office and I don't think it really— and the truth is my echo actually didn't even show anything this time that was Totally obvious. I think if an expert in what I had read it, they probably would see it. But like, I can play hindsight and maybe I would've gotten that echo and it would've been normal and I would've gone on with my life. But I would've, um, they weren't digitized, like they were printing them out. So actually that would've been like me, the smartest thing to do would've been me taking a picture of that at least, and either printing that or saving that photo digitally, like in Apple Notes or something like that. But I didn't think to do it.

So, I mean, I know somebody that was in the hospital last week that I was with. And I watched them do the echo and I have tracked everything in the MyChart and it has never showed up in the MyChart. Like it was done so that they could go rule something out and move on. But even the fact that it was done isn't even listed in the MyChart.

That's unusual. Usually with echoes, you would at least get the read, but then that's not even— that's not enough because we'll talk about like when I'm going to this expert appointment, I actually had to get discs and upload every single image of everything so that they could like reread it themselves.

Yes. So, um, so that's interesting. Can you go back and get your labs?

My old— well, nothing would have shown on— the only crazy, crazy labs I have were from this hospitalization, and I have all of those, like, because I have a good MyChart account from that hospital, and I can pull up every— from the minute I stepped in there. Um, I don't think I had anything on old labs that would have shown it. It was more the EKGs that I would have loved to, to see the old ones to see if there were any, like, weird signs that, that are subtle.

Sometimes Though it's nice, like, there's a range, like, when you do a CBC, like, that whatever that stands for. What does that stand for?

Complete blood count.

Thank you. When you do a CBC, there's like, they run all these different tests, and then there's yellow, and then there's green, and then there's yellow. So, like, one thing is my daughter has really small red blood cells. I don't remember what that's called. It always shows up.

Could be iron deficiency. Can be— oh, her MCV is low is what you're saying.

MCV. Yeah, her MCV is low. Like, the actual size of them is just just small and it's like way low. So when you see it, you're like, oh my gosh. The first time we're like, oh my gosh. Now every time it comes through, we're like, she has small ones, she has small ones, and you just move on. Um, but even though there's that range of green, sometimes you're more towards this end of the yellow or that end of the yellow. And so I will often, especially with her labs, I will continually look all the way back and see if I'm noticing a trending pattern.

Totally.

Yeah. No, that's in the green.

I think that's, I think that's excellent. Um, again, for me, like, it's just that there's not a clear lab marker, but I think for things like prediabetes, for cholesterol, for kidney function, yes, looking at that trend and your cholesterol, like what you said is so important. And actually, like how I practice in reality, the trend matters a lot. So like, I might follow a child with an LDL that's really high, like 170. Um, but let's say, or let's say it's 140, but like, was it 140 coming from 170 or 140 coming from 90? 'Cause those 2 things, right, like would have a different— Whole different discussion. Like the 140 coming from 170, I'd be like, good job. Okay, let's keep—

Yes. Whatever.

Keep doing what you're doing.

Yeah. I just think that we can find patterns when you have the information. And I think that we are led to believe that the information is there somewhere and our doctor, because it's digital, our doctors have all of it or we have access to all of it. Oh, and I wanna keep reiterating that we don't. That's kind of where I'm going with this is like, no, we don't. We don't. And so if you don't have it, you don't save it, you just might not have it.

And the best is if a patient somehow tracks it and keeps it all together, because you're 100% right. Electronic medical records change. You might move, you might go from institution to institution, you might go to Quest one time and then LabCorp the next time. And then so like, you can't like compare them that way. The really, like, when I see new patients coming from elsewhere, if they have like some kind of resource printed out, written, whatever, that actually shows old stuff, It is worth its weight in gold. And like, best case is if I don't even have to get it from the office, but I can get it straight from the patient. So like, these things do matter and can actually really influence the, the level of care you get. 'Cause also, um, you want, when you're coming for an appointment, you want all that time to be dedicated to the doctor, like thinking about you and not like trying to track down stuff. Preach.

This is what I've been saying. You guys are hearing it from a doctor. Like, and, and as a doctor, you're saying you do want information from the parents 'cause Or patients, cuz sometimes we feel like, oh, they're a doctor, they know what they're doing. They don't need it from me. No, no, you need whatever we can give you. You know what you know as a doctor, but you need everything we could tell you about us to marry those two.

The best is if it's organized. So like, I don't care how big the pile is, it can be huge, but if it has some degree of organizing, that helps so much. So maybe like there's a, they have a binder and there's a section that has labs. Awesome. I can flip through labs like a boss. Like I, but it's so much easier to flip through labs than flip through like labs mixed up with like medication recs. mixed up with this, mixed up with that. And it does take time to go through some of that. But it's actually, you don't need a medical degree to figure out like what papers have like labs on them or to arrange them in chronological order. That's like hugely helpful. Now I'll do it myself if a patient hands me like papers and they're mixed up and I'm like, okay, I'm trying to figure out what's first. Often I'll often like type into the chart like a summary so I can see where the numbers kind of went over time. And by the way, I'm lucky to be in a specialty where we get a fair amount of time per patient so I can do this.

That's what I was thinking.

This is harder if you are primary care and we can get like 45 minutes per patient, sometimes even more, but that's not every specialty sadly. So, coming in with your stuff as organized as you can is the best or sending it ahead of time because then the team can kind of pre-chart on you and have everything ready when you get there, which I love to do.

I haven't gone that far. So, when I usually pull, I'll usually get all the labs together and then I'll put a cover sheet on top. It's just handwritten. I'm not typing any of this. And I'll just draw the graph. So, it was interesting when I did my HDL, LDL, my cholesterol in order to make my case of I didn't want drugs, The range of what was considered healthy had changed.

That's funny. Yeah.

Yeah. Yeah.

Those things can change with time.

Yeah.

And be careful because assays can also change with time. So again, like, you know, LabCorp can like change the reagents used to test TSH and now all of a sudden 4.5 is high and before it was okay and it's actually like a testing difference. So that stuff's harder to get behind. But at least if you have the different papers and you can see where each of them is like from, then that's—

Helpful. Yeah, I thought if I have the summary on top and you look at the summary, and that's as far as she went. But if she wanted to dig in, all of the actual tests were there, and then she could have looked at them.

You're a great patient.

Oh, well, thank you. I have a lot of experience. Okay, so let's talk about, yes, with Abby's back. Like, I just took her X-ray or whatever on a disc to my cousin-in-law is a radiologist, and he just pulled it up on his computer last night. He's like, oh, yeah, I see the L4, L5, blah, blah, blah, blah, blah, blah, blah. Anyway, I was like, okay, so are you saying surgery? He's like, yes, we're saying surgery. I'm like, all right, give me that background. Brian. But yeah, you had to get the disc in order to read that. I think it was an MRI that she had.

Yeah, it probably was.

So explain the papers and stuff that you're getting. How are you— what are you doing now?

Yeah, and it actually depends on the specialist. So for example, I need to get hand X-ray images on disc for my patients because we read that to figure— if a kid's there for growth, we look at skeletal maturity, I wanna look at that image myself. Like, I don't care what the radiologist says. I believe the— my version. 'Cause I just, yeah, I read a ton of them and like, you know, we're trained in that. However, there are other studies like a thyroid ultrasound where I hate to tell you, but I have no idea how to read the pictures, so I need the report. So the best is to have both available because it's gonna be hard to know as a patient, like what they need. Um, but when you get anything done as a study before you leave the hospital or the facility, you should ask 2 questions. Number one, like, where will the report be sent or how do I get access to the report?

Yeah.

And number 2, can I please get a copy of that image on disk? Do both of those things and then you can put them both in your medical binder and you're gonna be prepared for either scenario of what is needed. Um, because I ended up needing— my husband was super smart. I was like too out of it, like post-op, like pain meds, who knows? But he was like, we need everything on disk. And it was so good that he did that because I ended up having to upload everything to the Hopkins portal for my like, you know, big opinion or whatever. And They need that. They wouldn't have been able to do it without me, and I didn't want to be messing with like FedExing things. They needed the actual images anyway. So yeah.

So for Abby's back surgery, um, I have had many of you reach out to me, but someone in Colorado was like, send me the disc, I'm having this person look at it. And I already knew I wanted my, my cousin-in-law to look at it. And Abby's having like the least level of back surgery you could possibly have. So when we were checking out at the orthopedic, I said, okay, I need the disc. Because I knew I needed a disc. They didn't even tell me. I was like, I need a disc. And they're like, all right, fill out this form. I said, well, I need 3. And they're like, 3? And I was like, yes, I want one and I'm sending 2 out for opinions. And the woman's like, we've never had anybody have more than one before. I was like— she goes, we don't know how to do that. I said, can you just take this, this paper Abby's doing and Xerox it 3 times and send it in and then they'll send you 3? And she's like, we'll try it. Sure enough, I got 3.

That is awesome. My husband has—

Because I wanted one.

I want to keep one. Oh, my husband knew how to like open it and send the files, but like I didn't even know how to do that. So I feel like you're right, the safest thing to do is get multiple copies if you're going to send it elsewhere, and then you don't have to worry about it.

Thousands of dollars, like they can send you an extra CD-ROM.

That probably costs $1.

You want to keep, and then, you know, because when you have it at the doctor's office, what if you leave it in the computer? What if you like—

yeah, just No, you're right. And actually, patients all the time tell me like, oh, I have extra, like, you can keep that. And I actually don't want to keep it because I usually just— I like can upload it to our hospital system. But, but I appreciate that I don't have to worry about like not, you know, giving it back or whatever.

Okay, so back to the event and the immediate hospitalization. I didn't even think about the fact you weren't in your actual city.

Yeah, I mean, it wasn't like far, but I wasn't home. Okay.

Is there anything you could have done that would have supported your husband as you were pulled out of the household manager duties? And I have to caveat this because you are not full-time. You work 60% time away from home. You do have good care nannies. You and your husband do like planning retreats. You guys are on the same page. Let me just tell you, if it was Greg and I, he'd be in the hospital and he'd be like, I don't. I mean, she'd be like, Lisa, what do we do? Like, we don't have like this care system set up that you already— you already had a lot of experts in place, but still.

Yeah. I mean, at this point I definitely work at least full-time because I work 60% at my clinical job and then my Ready Books podcasting job has, has, has swelled. So I, um, and I previously did work full-time, so we are like very fortunate. We've had the same nanny Who is also kind of like partial. Like I feel like I'm the CEO of our household, but then she like does the operations, you know? So she kind of knows like the ins and outs of everything. And so I don't know if I would have needed to do anything differently because it was very natural, thankfully, for her to just be like done picking up the slack. In fact, she was even like Josh, don't worry about it because he was coming to be with me because I was like terrified and not in the right mind to talk to doctors and didn't know what was happening and like couldn't even tell you. Like he's the one who helped me decide on the defibrillator, like all that stuff. Like I needed him. He kind of went, he actually went back and forth. Like he'd put the kids to bed, he'd come back to the hospital. He went back and forth. So she was like, okay, you know, I got it. Um, I do think it's like the strength of our weekly planning that, um, kind of enabled our nanny to even know like, oh, these are the things I need to prep for the week. Like I, I'm so used to getting the screenshot of our, we have a whiteboard that we fill out every single week with all the activities that she could basically fill it out herself without an issue. Um, So yeah, I think for me, the lucky thing is that I kind of already have those structures in place just because, um, I, you know, I even have call weeks where I have to be working every day. So we, we've just needed that level of childcare. Um, but if I didn't, I think, yeah, it would have been rough. And I definitely think—

Oh yeah.

Having like, maybe having like a friend or family member like understand our weekly planning rituals might have been helpful. Like, so if we didn't have a caregiver, Um, then maybe one of my in-laws or my sister-in-law, I would have been able to be like, this is what our whiteboard normally looks like, which I have screenshots of that on my phone. And like, so that's like what the kids' activities are, and then use that as a jumping point for her to be helping kind of fill in that role. But it is, it's tough.

Yeah, I'm, I mean, I'm gonna tell you right now, I don't have a solution for this. Like, it's awesome you have a solution, but I wouldn't have a solution. I don't even know. I just wouldn't have a solution.

I mean, maybe the answer is that most people should get a friend or family member to like, if, if you have like a retired family member that like could potentially help you in a pinch, have them visit for a week sometime and just do stuff alongside of you so they know how they could do it if you needed it. I know that's a luxury, but if they were planning on visiting anyway, like maybe have a couple of those days just be regular days versus always doing like vacationy things just so they understand. I mean, it would have to be someone close to you who's willing, but I could imagine like, you know, if your mom lives not that far or like. a sister-in-law or something like that.

Yeah, I'm still, I'm still drawing a blank over here, Sarah. And I, I'm saying that out loud because I know a lot of people listening are going, no, it's me. I'm on an island. Like, I know if anything happens to me, the ship is going down, even though you're organized, even though you have all these things. Um, and that is a weight and responsibility.

You can also let the ship kind of sink to some extent, right? Like, so the necessities have to happen. Your children have to be fed. They should be taken to school, but like, they can miss soccer and they can miss ballet for a week and like nothing terrible. So, and, and actually we did, I mean, I kind of told her, I was like, you know, do what you could do, but like some things require 2 drivers. Like I'll be driving to dance while she'll be driving to soccer. And I was like, just don't worry about it. Like, let's keep things in perspective and remember that like everyone's healthy. If kids miss some extras, um, and they eat takeout for a week, like they will be, they'll love it.

Yeah, yeah. How did the kids do?

I think, I mean, they were, they were scared because, um, you know, they knew I was in the hospital and everything. Of course, like, they came actually very early on, which I think helped. Again, being so lucky to be there with my in-laws. So like, you know, they, it was like, oh, they saw that I was like surrounded by family and, um, that helped a lot because I think that reassured them as well. So they visited a couple times and Um, they were scared for a little while, but then I kind of like framed it like, you know what, I have amazing doctors and like I got this thing implanted to keep me safe. Like that's the whole point of it. If my heart ever does that again, guess what? This thing will save me. I mean, that's the whole purpose. So I think they, they get that. Um, and I, I think they're doing good.

Yeah.

And if we're—

you said your oldest is 13?

Yes.

I mean, that's, that's old enough to kind of kick in.

Yeah.

And, you know, they know the routine. They know how this works.

Oh, she's very, um, yeah. And it's a girl too. I mean, not to generalize, but yeah, but generalize anyway. But yeah, she's quite self-sufficient. I mean, she's got her beauty routine. Like, I don't, I don't need to tell her how to get ready for school. Like, that, that is not a problem. So yes, it, this, this was easier in my scenario. If it had happened 6 years ago when I had a 1-year-old and like, I can't even do the math right now, but you know what I'm saying? Like, that would have been, yeah. Yeah, that would have been rough.

Yeah. Anything else you want to say about, um, organizing your medical records?

I think, I think spending some effort doing this is going to put you so far ahead of most people, and I think it's very worth doing. So I would say don't be perfectionistic about this because some people are like, oh, this is all gobbledygook, like I, I don't really want to like deal with it, I'm not going to be able to have it like smartly organized, so like I'm just not gonna bother. Okay, if all you can do is just make sure you have everything in one box and just throw it all in there, that is still a million times better than not having it. And I definitely think getting paper copies of things is helpful because there are so many different systems. Like, I'm now in 3 different MyCharts because I got the one where I was diagnosed, I got my home hospital, now I'm gonna get my second opinion. And like, I need a central repository for everything. I actually have a paper— I'm using Lisa's medical binder because she sent it to me because she's the nicest. Like, it arrived unexpectedly and I'm like, Of course, Lisa, thank you. And I also have digital copies of various things in a little Apple Notes folder that I created so I can like get it on the fly, but I'll be bringing my binder with me to my appointment. And, um, I, I just think don't let yourself be intimidated by it because it's better to bring it and have it than to be like, oh, it was just too much, so I, you know, left it to the experts because the experts might have trouble finding everything.

You know, you mentioned when you're in the hospital, if you had a question, you wrote it down. You said you wrote it down Apple Notes. Did you write down the answers also?

Ooh, I think my husband wrote down some answers. I don't think I wrote down very many answers.

So I, I only asked that because you— because there is a digital and a paper trail. So as my kids, you know, they started getting diagnoses— well, with Joey, it was, you know, 10 months was when we got the asthma diagnosis, and Abby was around 4 when we started getting her diagnoses— and I would carry the Warrior Mama binders with me. And in between the meetings, In between our doctor's appointments, I would write everything down. I had a planner then, a hand planner, so I'd write it all down and then I would rewrite all my questions before I went to the doctor's appointment. And then as the doc— as I was asking the questions, I would write down all of the answers. And what was interesting was not the answers in the moment, because the answers in the moment I retained and I knew what to do. What was interesting when I would do like 3, 6, 9-year reviews and I would go through all of their IEPs, I would still have all the questions and answers I had written. So I would notice, oh, every August I ask the same question. This is a mood indicator. Oh, I asked this over and over again. So, so I'm just pushing towards paper again because I think that paper is how we actually learn and analyze, and digital is how we increase productivity. And like you said, you can like upload it, but we tend to see more patterns when you're looking at it printed and when you read back through it. That was where I started to realize, oh, there are like certain behaviors that happen that then indicate that we need this kind of a medical intervention. I'm being vague on purpose.

Totally.

But I then got to the point where I could have 20 things that if I noticed these 20 behaviors, the number of behaviors, if it was 2 out of 20, 4 out of 20, 6 out of 28, I could see how quickly we were moving towards this medical intervention that was needed. And so I got to the point where I could diagnose like that because I had been writing down all these And I just kept looking back over and I was like, oh wow, that's a pattern that I finally noticed. Because every summer I would go through their entire Warrior Mama binder. I would take out things I didn't know. I would move all the notes into this note section, and then I would just sit there, you know, and cry and read through all of the notes like, oh my gosh, this is a lot. This is a lot that I'm doing. This is a lot that I'm advocating for. And that's when I started to see some of the patterns over time.

I have 2 things to say, and I think that's brilliant. Number one is I need to be better about writing down answers, especially when I might not like the answer or if I need to discuss the answer with my husband. So like I have kids that have maybe similar, some stuff going on and like we actually have an appointment coming up in a couple weeks. And I think that writing down the answers will be helpful so that after the fact when we're like trying to figure out what to do, we're not telling each other different stories about what was said.

Mm-hmm.

Um, and then the other thing, actually I have 2 things. Another thing is that it's so interesting that you said that about the checklist because with my cardiac diagnosis, I was like, oh, there's a million criteria and it's everywhere and it keeps changing and it's different. And finally I came upon this PDF that someone had shared on like a Facebook group for the diagnosis. And I was like, oh my God, it's all there in one page. And it was from the center where I'm going. And I printed it out and I was finally like, oh, this is so easy. Like it, it was weirdly so many more, much more doable and understandable in paper form than it had been digitally. And I can't— Yeah. Yeah. Like I could check it off. Oh, I have this. Oh, I don't have that. Or, oh, I need to ask if I have this or this, cuz I don't actually know. So that's, that's huge. And then the third thing I was going to say is when patients ask me questions as a provider, I try to put my answer in the plan. And that's more for my first thing that I said, which is that like, I don't, I want them to have something to refer to. I don't, I mean, in that case it's typing, not handwritten, but like, if I'm, you know, they, they may ask like, okay, like, is it okay if they miss doses? And I'm like, no, they really need to take it every day.

Mm-hmm.

Um, I want them to have that in writing. In part because I don't want them to like wonder and then also in 3 months be like, oh, but you said it was fine to miss a bunch of doses. Like, no, I didn't. I handed you this paper. Look what it says. So I do think like we are underutilizing written materials in medicine.

Yeah. And I think that when you're reading, like, so I keep all the discharge notes from hospitalizations or doctor's appointments or whatever they give me or whatever I can print out. When you're reading it on an annual basis, if you have something that is ongoing, You should be reviewing your entire binder every year. Like I do my financial binder every year. I read through all of it like, oh yeah, better move the house into the trust so that if the house happens, like it gets replaced. So you see things differently when you're reviewing than when you're in it. And if you're dealing with anything chronic, then you need to have some reviewing time. I like to do it in July, and I think it's because my kids were in school. So the Worry Mama binder, like you can't have an IEP meeting in July, so I wasn't dealing with any outside pressures. I was just like, okay, I'm gonna go through the binders, I'm gonna get myself ready for the next school year. What worked? What didn't work last year? How do I really want to advocate for them next year? Are there improvements or deficiencies? I want more testing. And so I really came in very knowledgeable. And really, the binder is— for me, it's an external representation that gives you the confidence for the knowledge you have. You already have the knowledge about yourself or your kids if you're advocating for your kids or whoever you're advocating for. But when you have it in paper, you're able to more objectively go through it. And also you're able to find an actual test or whatever to hand to a medical or school professional and say, no, this backs up what I'm verbally telling you. It gives you the confidence to actually advocate in the way that you can. But I also think as the school or the medical professional hearing what the mom or the patient is saying, when you can back it up with the labs, then you're like, you know, me saying that like, no, I've always been in the yellow for my cholesterol, this new doctor might be like, yeah, yeah, yeah, you don't know anything. But when I brought it all in, she's like, fine, you don't need the medicine. Like, it was not even a— it was, it was like done just like that. Whereas if I said, no, no, no, I'm pretty sure it was, she either would have said, well, I'm going to have to go get all that information, or she might say, well, science is showing now that even in the yellow, we want to do this. And so she would have put me on the medicine. I know she would have.

Yeah, that's where she was going. You made it easy for her to actually understand the trend. And like, you're right, sadly. It's not that she's a bad clinician, it's just that like—

No, no, she's absolutely not.

We all have limited time and it's great that you took away the step of her having to figure that out. Or she might have said, oh, let me look into that, and then it might have just gotten dropped because life happens and—

Right.

Yeah.

She didn't have time to do homework. I have to do the homework for my appointment. She's not gonna do the homework for my— come with your homework done.

Yes, I agree. It helps. It really helps. And I think patients sometimes think it's a burden. I'm like, no, no, no, that's the best. Thank you. Like, Again, when it's a mess, I'd still rather have it as a mess than not have it at all, because actually doctors can get really good at, at, um, going through and seeing what's important.

Yeah, you know what to look for.

Yeah.

Um, anything else you want to share from your personal experience as a household manager, as a patient, as a medical professional?

Yes, just that— well, I don't want to be like morbid, but just like, don't ever just assume like, oh, I'm healthy, like I'm Nothing can ever happen to me because, I mean, I knew that. We all know that. And, you know, none of us know anything. Like you could have a car accident or, or whatever. Yeah. Right. So you do wanna make sure to think through different scenarios, not in a bad way, but just to make sure that like if anything like this were to happen, that, um, and I don't really mean the household managing part cuz yeah, Lisa and I don't have a great answer, but like even the, the like formal part, like, and the part that you help a lot with, with the financial stuff that like all the information is in an accessible way. Um, and that you've thought through kind of all those scenarios, because life can just change really, really quickly. You wake up, you're running a race, and then you're in the cardiac ICU. Like, what? Like, what happened?

And you mentioned that there might be a genetic component to what you're dealing with.

Yeah, there usually is, um, but my gene testing is kind of confusing. Like, it had a variant that I don't know if the variant has it, because it's not like a classic variant for the condition. So actually, this becomes a little bit complicated, and my kids probably have get screened cardiac-wise, but hopefully they're not super high risk because I didn't have like a known gene come up. Um, but yeah, it's actually unsatisfying for me because I'm like, I want to know why, you know? If something lit up that it was like, yes, this is clearly the cause, this is messed up in your body and now we know. Like, but no, I don't, I don't get that. Um, I mean, it's overall a good thing. It's much better for my kids to not have them be like marked with something where they know, because that would be a really hard way to live, I think. Um, and this makes them lower So in general, this is a good thing. But yeah, that's— it's very complicated. They also apparently— this condition is like new enough that there are all these genes that like 5 years ago they would have— people would have tested negative, and like now they're like, oh, now we know gene XYZ is also— so, you know, this could change with time.

Yeah, I think with time we will have a lot more like DNA testing that will reveal like all of that. I think we're in the messy middle between like just, you know, what doctors learned in medical school and the symptoms that you verbally tell a doctor or that they can read on a scan versus— I mean, I'm sure in the future it'll be more scientific. With that said, in the medical binder I sent you, there's your health history in there, which you're very, very healthy. But now your children, and then maybe even your siblings, will want to look at this because there is a genetic component to it.

Right.

And so I think that there is, um, and we're giving away the half— first half of the medical binder perpetually for free now. It's if you go to slash relief page so that you can do your health history, your allergies, All that. Because even if you or your parents don't want to do your whole medical binder or any of that, it is really hard to get medical health history from people who have passed or who now are experiencing Alzheimer's. And you can't go get their medical file, like they don't exist. You can't go back and get these. So just even taking the time to write down your health history and your immediate family's health history, you know, my kids are adopted, so we walk in and they start that and we go adopted.

Adopted.

Check. Like, there's— game on. We have no idea.

That's so hard. I wish, I wish they should have come with, like, a medical binder when they were born.

Yeah. Well, I mean, a lot of times their parents are very young, so they don't have a lot of medical conditions.

No, because their parents are, like, in their 40s.

Yeah. And, you know, a lot of stuff doesn't happen until your late 40s, 50s, 60s. So if you're having your baby at 18 and your parents are 40, like, you don't even, like, Like, they wouldn't even have a health history really to report yet. Now they would if we were in communication. But yeah. And yeah. And I don't wanna do one of those tests that says all the possible things that could happen to you in the future.

I'm like, I don't either.

I do not want that one. So I'm like, I just wanna deal with, like, the known things that our family deals with.

I hear you. I don't want too much information. I never have.

Yeah. Yeah. Yeah. So anyway, Well, Sarah, I really appreciate— I know that you have negative time and you are, you know, transitioning into new ways to use your time and new ways of living. But I, when we were doing this series this month on unexpected events, power of healthcare, power of attorney, hurricanes, you also experienced hurricanes. I was like, oh yeah. If Sarah could come on the podcast as a medical professional and share her story, I know that it would really serve our audience. So thank you, thank you, thank you.

Thank you so much for having me. I would like to not come back to talk about any more hurricanes, so let's just not have any more of those.

Yeah, no hurricanes, no more health things. But we'll probably have to have you come back in January. Why would we need that, Sarah?

Aw, because I have a book coming out called Best Laid Plans: A Simple System for Living the Life That You Love. So that is so nice. Thank you.

Yeah, that'll be great. We'll be looking forward to reviewing that book. I think, I think you can already preorder it.

You can, although they haven't chosen the COVID yet. So I'm like, this is no fun. You go to the link and it's like my name, but like a blank picture. So I don't know, you can wait to click on that till we have a pretty cover.

It'll be soon. But go ahead and go on over to Best Laid Plans Podcast if you want to hear more about, um, Sarah shares a little bit more about the unexpected event that she's experiencing. And also, Sarah, you've had quite a few good podcast episodes come out, but you are verbally processing this change as it is happening, which some— I mean, it's so isolating to need care yourself or be a caregiver. Like, caregiving is the most most isolating, I think, event that you have. And it— there's so much weight and responsibility with it for yourself or for whoever you are caring for. And it's long. Like, it's not just like a weekend. It's like a long season. And so the more that we can normalize the amount of work that goes along with this and support each other as we go through these experiences, I think the podcast episodes you're doing right now are great for that. So head on over to Best Laid Plans to hear more of Sarah's story.

Thank you so much for having me, Lisa.

This was great. Thank you.