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Episode Nine: The Butterfly Effect

Allison Chrestensen worked as an occupational therapist, and absolutely loved her job.

“I did some work in hospitals and in people’s homes and just really got to experience what it was like for people and families to overcome illness,” she said.

Seeing patients redefine their lives wass rewarding, and she saw that delivering the best patient care means having empathy for patients and their experiences.

Through her clinical work, Chrestensen thought she had a good grasp of what patients and families who were coping with.

And then a lifelong medical condition nearly took Allison’s life and changed her perspective on what it means to be a patient.

Allison and her husband, Michael Chrestensen, an information technology analyst for Duke Health Technology Solutions, came to the Voices of Duke Health listening booth to talk about what happened next.

Resources

Allison Chrestensen started her own business, Tandem Healthcare Solutions, to help bridge the gap between patients and medical professionals.

Transcript

Allison Chrestensen: Do you want me to tell you about how Mike and I met?

Karishma: Yeah, please do.

Allison: A friend of mine from OT school, actually, was working with Mike and said, you know, you guys should really meet and if you don’t date, you will get along famously.

Karishma: That’s Allison Chrestensen. And, at her friend’s suggestion, she went on a date with this guy—Mike.

Mike Chrestensen: That was a lot of fun, I wanted to take her to the museum that had these butterflies be released every hour, and in my head there was thousands and thousands of butterflies. And they essentially brought out a cage and there was one butterfly and the gentleman came out opened the gate and one flew out.

Allison: I refer to it as a poof. It was like three butterflies and that was the extent of the…

Mike: So yeah, that was a big part of our first date and have had an amazing time ever since.

Karishma: This is Voices of Duke Health. I’m Karishma Sriram. Allison and Mike got married in 2011. And things were going great—they bought and renovated their dream house, they went to Hawaii, they went camping and hiking as much as possible.

Allison: I have had a condition called paroxysmal atrial fibrillation since I was a small child. In fact, I remember having these little flutters in my heart as a kid and kind of thinking, I’m just not sure if I want to tell anyone about this because I might need a heart transplant. I actually didn’t tell anyone for a really long time, and then I had been to see a cardiologist and they were not able to identify anything, because every time they put the event monitor on, nothing happens. Like, you know, when you take your car to the shop and it doesn’t make that noise. So I found myself in my 20s working in the hospital and I had an episode of afib and I went to the emergency department and I asked them to run an EKG right away so that we could send that to my cardiologist, which they did. And he said, oh yeah, this is afib. And that’s about all we can tell you, because the structure of your heart is normal, we don’t see any kind of pathology or anything that would indicate cause that we can point to for why this is happening. So the good thing about that was that we were able to develop a protocol, so it was still very unpredictable about when it would happen and why it would happen. But having that “here’s what to do when it does happen” was very comforting and it made the whole we-don’t-know piece of it a little bit more manageable.

Karishma: So was this around the time that you had met Mike or was this pre-Mike?

Mike: Yes, so Allison had mentioned to me when we were dating that she had some heart issues and really was never an issue. And then when she had the events, she would have afib and it wouldn’t go away. And so I was so nervous. I mean, I had never met anybody with a heart condition and she had to get a cardioversion and I didn’t know what that was. And so, you know, I’m very analytical and so I look it up and she had a cardioversion while while we were dating and I had to watch her get cardioverted and it was it was very scary. And so ever since that happened, I kind of have this low level anxiety about, you know, do you have, like, palpitations? And I think I’ve scared her a little bit because I think that I worry a little too much and that she might not tell me all the time that she might be having heart palpitations or other issues. You know, it gives me concern because I love her very much and I don’t want anything bad to happen.

Allison: One of the things that shocked me about—I don’t mean that as a pun, but it comes out about that way—about Mike’s experience that cardioversion happened with him in the room. And I think one of the things that I’ve really drawn from this experience is how difficult it is for patients and families, who are really standing by and just watching, right. And it’s almost in many ways I believe more difficult than it is for the person in the bed, because that that sense of loss of control is just so acute. And it’s just really watching things happen to someone that you love. And that really occurred to me when Mike told me that he had been in the room for that cardioversion that I was almost- I was really shocked by that. I thought oh gosh I want him to be protected you know. Yeah.

Karishma: So I guess you guys are doing well all the way up until 2013, so what changed in 2013?

Allison: Well, I had actually just gotten back from a trip visiting a friend in Chicago. And I remember it was March and I came home and it was possibly the next day or two after I got back, and I went into afib and I always had that “oh no” moment in my brain because I know we have like a certain amount of time or it’s going to convert or it’s not. And if it’s not that I have to go into the protocol and we have to talk about cardioversion. And those are all things that you know prefer to avoid. But I did in fact call my team and just said hey I need to come in tomorrow. And so we scheduled that appointment and we went to sleep and intending to wake up very early the next morning. Maybe I should let Mike pick up the story because that’s kind of where I fade out in terms of consciousness.

Mike: So yeah I woke up at 3:45 and Allison was making a very strange noise and she was blue. And I immediately jumped out of bed. I was super scared but I thought it was a stroke because that’s what I had read about the risks of afib so ran to the phone, called 911 and they talked me through checking her airways, looking in her mouth to make sure there was nothing obstructing it. And honestly inside of two minutes or so the emergency personnel were at the front door. So that was such a blessing. And so they did what they needed to do, trying to revive her. They were not able to. And they took her to the hospital very quickly and it was very intense. I think that I got a little bit of shell shock from all the alarms going off all the time because every one of them I was is she OK, is she OK.

I think the toughest thing for me was calling her parents and not really knowing what was going on. And, you know, it’s 4:20, it’s not a lot later right. Because it happened very fast and having to wake her dad up and mom up and tell them that I really didn’t know if she was going to be OK, because they couldn’t say that. They said that she had an arrest. They’re trying to cool her down and she’ll be in a coma. But beyond that they try to be careful but not promising things. But she had not been breathing right, so for a while, and they say, well only a few minutes, you can die from that. So I was really scared that that we might lose her. And it was a lonely moment, and then it gets into 4:30 and 4:45 and I’m just sitting there and just really scared, really scared for her well-being and not really knowing what to do.

Karishma: What did your support system look like, for as long as this was going on?

Mike: I was very lucky, so her support system sprang into action, her family came up as quickly as they could. She has a very strong relationship with her best friend growing up, who came up and brought some of her stuffed animals to put in her bed. And they came to visit and so very fond memories of hanging out at our little house with her entire family.

Allison: In fact, we have a good couple of good photos of that of everyone sitting in our dining room table and eating a meal and I was in the hospital at the time so I wasn’t there but what a source of comfort to see that there’s fellowship, right, and that people are taking care of each other. It was just awesome.

Mike: Yes, it was awesome and they were amazing and we had a good time there. And then I’m very lucky, I have five buddies in Durham that we get together every week for 10 years. We’re called the Boneyard and we just joke around every Sunday night. And we’re there thick and thin. And so they sprang into action and helped as well, they helped at home, they helped shop, they helped relay information. So we feel very lucky to have support like that.

I remember so many stories from the ICU waiting room because it’s such an intense area. There is a gentleman who had a son who is probably his 20s, who had some sort of heart failure and he was so worried about his son and he was also very worried about- he’s a truck driver and he didn’t make money when he wasn’t driving. And so his son didn’t have insurance. And I ended up talking to him many times. And we shared some stories, he was a very nice man. And that was one of many stories in the time where there, I think there were a number of other families in the ICU.

Karishma: How did that help you, or did it help you, process at all what was going on with Allison?

Mike: That’s a great question, it helped me a lot. The ICU is for the sickest patients, there’s families that are coming in in the middle of the night, there’s people that have been there for weeks. And so they’re vulnerable, they’re nervous and they’re open about talking about things. And it was an opportunity to feel grateful depending on what your situation was and it was an opportunity to kind of listen to someone else or to bend someone else’s ear, kind of, in a way where the person would understand because they’re there too for a very serious reason.

Allison: Yeah, so that idea of fellowship again. Having some of that external support is so huge, really.

Karishma: Yeah. And it’s amazing that you had that with people that you knew very well, but also with complete strangers. I think it’s really beautiful that you were able to have that opportunity to bond with them.

So then fast forward a little to when Allison woke up. What were you thinking? You must have been overjoyed.

Mike: I was so relieved and so happy. So she woke up around Easter, her whole family was there, we went to church, and we just felt this incredible relief. Where there’s a lot that is still yet to be known. But she was awake. So that was momentous, momentous day for us. And she was a little drugged out when she first woke up.

Karishma: Rightfully so.

Mike: So it was like a moment she might not remember vividly, because she was probably very groggy, but yeah we were all very very very happy.

Allison: Yeah, I think my first memory was the speech therapist and greeting me with some meat slurry, like, doing swallowing tests for me. You know, the puree diet. I was like, oh this is one of my people and, I know what this is all about this, this swallowing test. And it was awful. Don’t ever eat pureed dinner roll. It’s not good.

Karisma: Can’t imagine. Okay, so that was your first memory away. What else do you remember from that first day that you woke up?

Allison: Honestly not a lot, but I will say that when I think back to that, what I think about is this enormous sense of safety. Like I felt very safe, I felt not only surrounded by the people that I loved, but I had also all kinds of physicians and, you know, PAs and nurses and social workers and everyone coming in and taking a lot of time to explain what they could to prepare me for what might be coming next and to make sure that I felt comfortable with it. And honestly it just- I’m so grateful for that. You know, because it’s a confusing time to try to understand what has happened and what are all the events that I was awake for. So I’m just immensely grateful for that. I think that was a real gift.

I remember coming home and looking under our bed and seeing the cast offs from the EMTs, like the tourniquet and the rubber stoppers for the syringes. They were all just under the bed. And so we had gotten to the point where we’re like, okay, we’re on level ground, and then you see something like that and it’s all just back. And you’re like, wow, this happened. And here’s evidence of it in my bedroom. So that’s the thing too is just that you process these things and you internalize them and you- and it’s part of your story. But then you keep being surprised by it.

Allison: Now at this point I’m monitored regularly, I’m happy to say that I I feel great. I don’t any restrictions on my activity level back to exercising back to working and all the things that I love that I honestly have a very skilled group of MT’s and Duke practitioners to thank for that 100 percent.

Allison: This thing happened to me, probably a year or two after this event, this hospitalization. I discovered that my car been broken into, and some things had been taken from my car. And so I called the police, and I just said, hey, just want to report this. Not a big deal, but I’m assuming that you track these things, just wanted you to know. Well, they sent an officer out, which is not at all what I anticipated, but he came to the house. And he looked at me, with a sort of surprised and intense look on his face, and he said, did you have a heart thing a few years ago? And I said, yes. And he said, well, I’m the officer that responded to that call. And he said I’ve driven by here a few times and I’ve seen you in the yard and I wondered if it was you. He said, because I’m the person that drove your husband to the hospital when you were in the back of the ambulance. And he said, I am so glad that I ran into you, because we never get to see what happens to people after that. You know, from the caregiver perspective, the first responders, you know, this message of gratitude is so key. there are people I know around Duke that are doing work with that and I just think it’s so critical and so important that people know how grateful we are and that we’re okay because of them. And so I just think that was really- like one of those, I don’t know, maybe heaven-sent moments, it was really incredible.

Karishma: Thank you guys again for coming to join us, I really appreciate how vulnerable and open you both were.

Allison: Oh it’s our pleasure. It’s great to be able to share and express our thanks to the Duke community.

Mike: Thank you so much.

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