Host, Boots Knighton's, story continues with twists and surprises

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Boots Knighton: Ready for inspiration, A lesson in cardiology and a Dose of hope. Well, welcome to the Heart Chamber, patient Stories from Open Heart Surgery and Recovery, and I am your host, boots Knighton.

Mary Olson: Welcome back. this is part two of a kind of three part. story where Boots is sharing her journey with open heart surgery and the events kind of surrounding that. the part one, she walked us through the events, leading up to having open heart surgery and then also with the death of her mom.

and then now we're kind of, gonna get into what happens next. And I can't wait to, sort of keep the story going. it's really a remarkable one. And, I look forward to, part two as I hope you do.

thanks Mary, and again, my friend Mario Olson, joining me from Washington State. yeah, so last part.

mom cleaning out her house, [: 00:01:00

And I was also at the time not fully acknowledging that I was dealing with my own cardiac depression. my surgeon had warned me that people who have heart surgery typically get depressed afterwards. It's like cardiac depression. And that's something I'm gonna dive into in a future episode with actually, a variety of different people who have various perspectives on cardiac depression.

ch a good thing to do. and I [: 00:02:00

And I, I did write about it, in my journal and it hit me pretty quickly. Like I was still in the hospital and it, it's a very different type of depression than actual like episodic depression or, maybe brain chemistry, depression. This, it, it's its own thing. So I had that in the background and I'm, grieving my mom.

which would be like mid-April: 2021

And then I go back to work and I'm having [00:03:00] more and more pain. I'm noticing that I can't lift anything. and by mid-May I call my surgeon and talk to the PA and tell her what's going on. And by now I could really feel the wires, like I could run my fingers up and down my sternum and find each individual wire and.

she gets me on the phone with my surgeon and I describe to him what's happening, and he's like, you know, I was worried about this. he's like, I'm very, so I'm a very petite person. And he acknowledged that. And he said, you know, most people, like 99% of the people have no problem with external wires, but he's like, you're probably that 1% who reacts to them.

It was, it was pretty gross.[: 00:04:00

And so early June, Jason takes me back down to Salt Lake and they have to open up my entire scar, my entire sternal scar that I had worked so hard to heal well, and take out all the wires. Now these wires had already adhered to the bone, or the bone had already adhered to them. And so, it was a lot of trauma to my chest, to pull all these wires out.

And I think there were seven of them. Six or seven. See, even that, see memories do start to fade. um, so , I, it was a, you know, it was an outpatient surgery. I mean, they put me under, but I was able to go home same day. And I was sore. It really was a traumatic surgery to my chest, and my whole right boob was swollen and black and blue.

im, like just like pulling , [: 00:05:00

He was like, why would you wanna do that? And I was like, well, I don't know. It was like, you know, I wanna make jewelry out of it one day, or, I don't know, an altar, I, why not? they cost me however, hundreds of thousands of dollars it felt like at that point. And so it took me about two weeks to like work up the nerve to open the package and like look at them.

But when I did the first thing that was shocking was how thick they were. And I was like, wow, you could like fix a chain link fence with these things. That was my first , my God, my first impression. my second impression was it looks like part of a wire is missing

ave my body. I was extremely [: 00:06:00

Like, I felt like I had just been pummeled by the universe. everybody, I was not in a good place. And I called down to the office in Utah, and I was like, Hey, I'm holding all these fires in my hand and I wonder if one is still in my body or part of one. And they're like, the person was like, okay, I'll check.

And she's like, I go, you know, I went back and read all the surgeon notes. He says he got it all. would you like to get an X-ray? Just to make sure. and I thought to myself, and I was like, I'd rather shoot myself in the head than go into another hospital right now. Like, that's how I felt. I was like, I am just gonna take your word for it.

ires looked. So, you know, I [: 00:07:00

I'm trying to sell her stuff and, I'm having some of the stuff I wanted to keep moved out to Idaho. It was like this dumpster fire. So here I am grieving my mom, finishing up her life, trying to heal, trying to figure out who I am. Now after like all of this, it's still covid. it was bananas.

And so by early August the pain in my sternum is not going away. And if anything it's getting worse and it's really starting to bother me. Just kind of below you're like Adam's apple. Like there's like, if you touch the middle of your throat, it's like right where that dent is.

at was in the indented part, [: 00:08:00

And so the surgeon I call and let 'em know, he's like, I'm gonna order a CT of your chest just to make sure you're healing okay. And I walk into the hospital by now, I think this is the third or fourth CT of my chest since this whole thing began in June, 2020 with contrast. I was so sick of the contrast and.

they're like, why are you here? And I tell 'em, I was like, well, you know, I had the open heart surgery, then I had the sternal wires removed, and I'm still having trouble. And the guys are like, okay. And the sad thing was they recognize me. Like at this point, like the whole hospital knows me over in Jackson, Wyoming.

d the surgeon promised me he [: 00:09:00

He's like, okay. And then I lay there a little longer and then he brings the radiologist in and that like never happens. And the radiologist was like, Ms. Knighton, I have some really hard news. You still have a wire in you.

yeah, that was a tough moment. And, you know, I'm in a mask, they're all in masks, and I could tell that they were like, feeling it for me. Hmm mm-hmm. . And like, I, I finally had like, nothing left. I couldn't cry, I couldn't say anything. Like, I just laid there and just rage took over and disbelief and, you know, they, they were, the radiologist was like, go get dressed, and I'll bring you back into the office and I'll show you.

. He's like, it likely broke [: 00:10:00

And then I call the surgeon's office and I just could not remain calm. And, you know, the long, very long story short, there, I, I calm down. I choose not to sue. and I choose to meet him as a human being. And, you know, He was like, unfortunately, I wish that was the only problem. But he's like, I don't think that's what's causing your pain.

each other and that's likely [: 00:11:00

So I let him, and it was, it ended up being the most healing thing I could have done for myself. For him. He's a human. It was a mistake. I would still recommend him a million times today. He made it right. You know, and the bummer was I had to be opened up a third time. So the top of my scar has been cut three times.

I deal with a lot of chronic [: 00:12:00

but By letting him fix it, by us meeting eye to eye and letting him say, I am sorry, and me saying, I forgive you. Just, just fix it and let's move on. I never held any grudge or bit of anger or regret after that. And what it provided was peace for him so that he could go back doing the amazing work he does as a surgeon, and then I could fully focus on my healing

Mary Olson: And peace for you too, right?

I mean, I think that's, oh yeah, that's forgiveness end up being internal work for us and, and really like it has such a profound effect on the forgiver as well. Um mm-hmm. , I think, and just mm-hmm. , what you said about him seeing him as a human and meeting him as a human. I think something we don't really do.

like we, we put them on, on [: 00:13:00

Boots Knighton: Yeah. Yeah. So, yeah. I had the plate put in and then I just focused on moving forward and healing, and I was still holding on to. You know, getting back to skiing, getting back to my life as it was before and I had not radically accepted that my life needed to change in every way.

lly over that cuz I just was [: 00:14:00

, it took many more months for me to really understand that and to accept it. And I mean like radically accept it and I wasn't okay with it. I felt like, my old life had died and my identity died and I had to figure out who I was gonna be now with this imperfect heart that thankfully, you know, had been unroofed.

my body. And by December of [: 00:15:00

I'm out of breath. I'm having rhythm issues. And by Christmas night I'm put back in the hospital and it felt like I was having a heart attack. But, and the, the, the troponin wasn't elevated, but this time, a blood marker called B N P was elevated, which is, like a heart failure marker. And it wasn't like sky high, but it was enough that it got my cardiologist attention, a different cardiologist that I'm now working with and I was really not okay.

y. And we tried a variety of [: 00:16:00

and I'm now on just like a slow acting nitroglycerin. I'm starting to kind of come around now, but reflecting back to then I was asking too much of my heart. It hadn't even been a year yet. Like I tried, I, I, I can't even believe. I thought that was a good idea and. To try to teach skiing even half day, like it's a lot on the body.

les and being like, knock it [: 00:17:00

Boots Knighton: You know? I was just, no, we're gonna, no, you better pull it together. I know you've been cut into and your feelings are hurt, but we're gonna get back to our old life. And it's like, no, we're not, and I'm gonna put you into heart failure if you don't pull it together. Mm-hmm. ,

Mary Olson: there's so much identity wrapped up in that.

Gotta get back, gotta get back, gotta get out there. Yeah. yeah, it's, it's a hard, it's gotta be a hard thing to reinvent.

Boots Knighton: And that was what last winter was. You know, I wrote a book last winter, I wrote 94,000 words and it was basically making meaning of my mom's death during my time fighting to live.

was gonna like, die of some [: 00:18:00

or I ride it out of me. . So I chose to write it out. And then by March 20th, a year, exactly a year after my mom's death, I wrote the last sentence of that book. And I felt like I had done all the grieving I needed to do. And, I mean, I still grieve my mom. I miss her. I love my mom. But it was like, a year of truly, deeply grieving her.

Boots Knighton: And I started to pull out of it some, I mean, I did have to go to the Mayo Clinic this past summer because I'm still struggling with endothelial dysfunction. Vasospasms, I'm likely on the edge of some microvascular disease. but my local cardiologist wanted me to go to the best of the best just to really make sure that.

Clinic. So, I wasn't patient [: 00:19:00

and so I've learned that I've learned what forgiveness really means and is like, not only of forgiving my surgeon, but also forgiving my mom. it was such a complicated grief for me. that's why there's a whole book that I've written about it. and then the other thing that I really have had to learn is just the deep self-love that is needed.

Boots Knighton: To get through something like this and the amount of grace that one has to give oneself in order to make it through something like this. And I couldn't have gotten that from a book. You just have to be in it and you have to be living it every day, with a damn good therapist by your side and a damn good husband and support network, and two dogs and three cats.

f there are just a couple of [: 00:20:00

So kind of understanding that everyone has their own journey and that they're gonna be, you know, there's no maybe shortcut, but what would you kind of tell people, as both advice, encouragement, anything else?

Boots Knighton: If you don't have a therapist, find one. . even if it's like a support group, like even a support group, both would be better.

But you know, if you, obviously there's the myocardial bridge support group for, the defect I had corrected. There's a bicuspid support group out there. a microvascular disease support group. I'm part of that also on Facebook. so, find your people, even if it's over social media that really understand.

ical trauma of the body that [: 00:21:00

which helped me be able to stay calmer going into the heart surgery. And then we did a bunch afterwards. and I will tell you that's why I think my open heart surgery was really not that big of a deal. In fact, when Jason and I were leaving the hospital, I said to him, that wasn't nearly as bad as I thought it was gonna be.

But we did not do it for my first heart catheterization at Stanford. We didn't prep for that. And I was severely traumatized from that. Severely traumatized. And so actually like doing pre trauma work and post-trauma work, is so important for the body. It's really important for the nervous system. And then that way you just get right, your body can get like right to the healing part.

d then just being willing to [: 00:22:00

And then I definitely couldn't cook after surgery. and I just needed that weight taken off Jason so he could focus on all these other things. And so let your people, let your community help. And if you don't feel like you have a community, I bet you're wrong. And I bet you're more loved than you even think you are.

Like, you know, we are not alone. We do not have to do things alone. We are social beings and we are meant to love on each other and be there for each other, but you have to be willing to ask for it and be open to the help.

Mary Olson: So set up a, set up a support network ahead of time, and then be willing to use

Boots Knighton: it.

As well. Mm-hmm. . Mm-hmm. . [: 00:23:00

Mary Olson: lean into that. Lean into that community.

Boots Knighton: Yeah. Yeah.

Is there anything? I think that's, I think that's enough. , if you're still with us. Us. Thank you. . Imagine living this. yeah. Yeah. And so, you know, for listeners, what I have coming up for the heart chamber is so exciting. I have other stories of myocardial bridging. I have bicuspid stories. heart transplant.

ected with her. in August of,: 2022

And so she's coming on, I'm bringing on my physical therapists to talk about ways you can heal at home as, and maybe you're really isolated and don't have access to a good physical therapist. so I'm providing that. And then, I'm hoping to bring on, various cardiologists and surgeons, but it's mostly gonna be patient stories where we're all coming together to share our hope, and our, support and grace for each other.

well thanks for sharing your story and, and thanks again for having me on to, to do it with you. and yeah, looking forward to everything to come on heart

Boots Knighton: chamber. Yeah. Thank you Mary, for being here today. Means a lot.

he heart chamber podcast.com [: 00:25:00

I want to hear from you. Lastly, don't forget to leave a review and make sure you subscribe so you never miss another Tuesday edition of the heart Chamber. Thanks again. Have a great week, and I'll be back next week with more stories of open heart surgery and recovery.