Jennifer Van Syckle  0:00  
Thank you for joining us for this episode of talking health in the 406, where we're one community under the Big Sky. I'm your host, Jennifer Vansickle, longtime health care worker turned health educator. And we're going to listen back in to Rachael Anderson, as she shares her journey with her daughter's struggle with asthma.

Rachel Anderson  0:27  
I was so scared. I thought if she gets COVID, she might not survive it. So that so that was really scary. Her job, let her work from home. So that was good. So this is going into the fall of 2020. She and that summer, and fall was terrible for wildfires. And the air quality was really, really bad. So she she was struggling again, because of that. And, and then she had gotten sick, just a normal cold. It wasn't she didn't get COVID She just It was a cold. But every time she would get sick, it would take her so long to recover. And it was you know, at this point she she was using her maintenance inhaler like she should. She had another medication asthma medication she was on. She had a nebulizer. She had all all of the things that she could have.

Jennifer Van Syckle  1:37  
Yeah, every tool possible in the toolbox. Yeah.

Rachel Anderson  1:40  
So November 14, it was midnight. I got a phone call from her boyfriend Ryan. He toldt he said Mia is on her way to the hospital again. She had stopped breathing again. And he she was with him at the time he did CPR. She, she knew she was going to stop breathing. She could tell. And she told him to call 911. He did that. And they got there. He said they got there within two minutes. But this time, her heart stop. And so the paramedics, they got her heart going again. But it took 15 minutes. So when I got to the ER, the doctors told me I'm worried about her brain. Because she was without oxygen for so long. So doctors did everything they could there's a whole process to go through. And I don't know what it all involves. But one of the things that they did was to cool her body way down to take her body temperature down. So to allow the brain to heal is is how I understand it. So they did that. And that was several days. And this was all at the kind of the height of COVID where it was the worst. This was before there was a vaccine. And so visitation was really limited. So she could only have one person with her each 24 hours. So we couldn't be there with her all the time. Not both of us. Her her dad and I both couldn't be there. And then then Ryan her boyfriend, so we had to take turns.

Jennifer Van Syckle  3:50  
Wow. So your daughter's in the shape and you're only getting to see her pretty much every three days. Yes. My understanding. Wow.

Rachel Anderson  3:56  
Yeah. So so the ambulance had taken her to St. Vincent Hospital in Billings. Her dad works at at Billings Clinic. So we actually had her transferred to Billings Clinic because insurance and you know, all all those reasons so transferred over there. And the day we transferred over there all visitation shut down. Oh, man. Yeah, but they gave us an exception. So which was was really, really good. At this point, we were we were still very hopeful. She was gonna come out of it. And then they did all the testing that they do for brain activity. And it told us that she had enough brain function for her heart to work and and basically basic, basic function. But that's all. And so we had to make that tough decision to keep her on life support or not. And we knew that she would, she wouldn't want that she wouldn't want to be, you know, on life support like that. So. So we made that the decision that we would take her off, and, so then these amazing two women from LifeCenter Northwest came to talk to us. And they asked us if we wanted to donate organs. Mia, when she was 15, she she had signed up to be an organ donor. And so we knew we knew the answer was was absolutely yes. So they kept her on, on the life support for, I think it was three or four more days after that, to line up all of the donor recipients. And they were just they provided so much support for us. And I really don't know how we could have gotten through it. Without that support. They, they did things like, they gave us a quilt, put her handprints on it, they they brought these little stone hearts in and put her fingerprint on all of them. So we can give them to her friends and family as a, you know, way to remember her and so she saved three lives. And she was able to donate both kidneys and, and her liver. She she couldn't donate her heart because there's very specific laws about that. And you have to have no brain activity at all, in order to donate your heart. So since she had that little bit, just enough to, for her heart to work, she couldn't donate her heart COVID was new, actually could not be an organ donor. If you got if she tested positive for COVID She could not be a donor. Oh,

Jennifer Van Syckle  7:42  
okay. Okay. Yeah. So still lots of precautions and caution, Okay,

Rachel Anderson  7:48  
you were testing her every day. And she never, she never got it. And but they did the they did let us be there with her. And I, I pretty much lived at the hospital that whole time and stayed there, you know, stayed there with her the whole time. And they let a you know, everybody was able to come see her that needed to all of you know, her sister and brother and cousins and aunts and uncles, grandparents. Were all there in the ICU waiting room and they let us go back one at a time to see her. And she also was able to donate corneas. So restored sight to two people as well. So when, when it was time when everything was set, and it was time the there's a short window in order for the organs to be viable. We were able to we went with her state, unhooked her from all the machines and then we stayed with her until she passed, and then we had to leave immediately because there's that short window. Yeah, just say our goodbyes in advance and the hospital does this really amazing thing when, when someone's an organ donor. They do. It's called the ahh Now the name of it just slipped my mind but as she's being wheeled into the operating room, all the staff the hospital staff is all lining the hallways the whole way. And it's a walk of honor that's what it's called a walk of honor. And that was really amazing. And then they had Cody and I her dad write a statement about her and And, and then they read that statement in the operating room as a way to honor her, for her for her sacrifice. Yeah, it really, really, really helps me to know that three lives were saved. Because of her. It's because it wasn't all for for nothing, something positive came came from it. And Mia has always been she was always a champion for people. If there was somebody that was an underdog or being teased, persecuted, she, she always stood up for people and fought for them. And so it was, it's just very, very fitting that she would, she would save lives in the end, it would it would make her her very, very happy to get to do that.

Jennifer Van Syckle  11:05  
Did you ever learn about the recipients? Like, did you? Are you allowed to be in touch with those? Were the people that received your organs?

Rachel Anderson  11:13  
Or,

Jennifer Van Syckle  11:16  
you know, how has it been in the two years? Since then? How much contact Have you been willing to have? Yeah.

Rachel Anderson  11:25  
So that all of the communication goes through LifeCenter Northwest, and they they only communicate things if you want too. And I said yes, I want to know. And so I got a letter from them. That said her without too many details, you know, her, her liver went to a man in his 30s. And her kidney saved a woman in her 20s and a man in his 20s. So that that's what I knew. And then you can send letters back and forth to the recipients. The letters go through LifeCenter, Northwest, and then so they called me one day and said, I have I have a letter for you. Do you want it? And I said, Absolutely. So I did get a letter from one one of the recipients so far. And, and that is amazing. And and very helpful as well i I'm going to write back. That's one of my goals. I haven't yet because to sit down and write a letter back is going to be very emotional, and I need to get there. But I'm definitely going to, and I think it would be amazing. If someday i i met some of the recipients as well. So can

Jennifer Van Syckle  13:01  
you tell us about your life since then I know you're stepping kind of into the advocacy role. That's how you and I met and what, what's on the horizon for you. But yeah, what's on the future?

Rachel Anderson  13:14  
So I have been looking for ways to to advocate because I think asthma when people think asthma, they don't always think that it's a very big deal that it's, they don't, I don't think people necessarily think of it as life threatening. And so my goal is to advocate and get, try to get the message out there, how serious it is. And if even, you know one person hears her story, and ends up taking their asthma more seriously and take takes care of themselves and and can prevent something like this from happening. Then it's all it's worth it. And so how I kind of got hooked up with this advocacy part is in in May. So my son who's 17 also has asthma, and in May I got a text from him that said, Mom, I'm having an asthma attack. My inhalers not working. And he was at work at the time. So this is some pretty big PTSD for me. I was I was actually very close. So I ran over there. He couldn't talk. I called 911 the whole thing. ambulance came he went to the ER he actually called me from the ambulance to tell me Mom I'm okay. Because he knew you know, he knew how, how scared I would this happening again. What for him? What happened was he had inhaled a whole bunch of smoke key works at the movie theater, he, something went wrong with the popcorn machine. He was trying to fix it breathed and a whole bunch of smoke. So after that happened, I went to Helena for work. I went to the State Health Fair in Helena. And that's where I learned about the asthma home visiting program. I didn't know I didn't know that it existed. I didn't know about it. And so I decided to sign my son up for for the program, I had, you know, grabbed a brochure about it. And it sounded like a really great, a great program. So went to sign him up. And in the process of doing that, I came across a group called the Montana Asthma Advisory Group online, and anyone could join. So I did. And I got a welcome email and was emailing back and forth with the director of the program and eventually went to a meeting in Bozeman last month. And that's where I met Jen and got hooked up to do this podcast.

Jennifer Van Syckle  16:22  
Well, we appreciate we appreciate your voice and sharing your story. I know I never took asthma seriously before what's sad, and what's scary, is, in Montana, there's seven people that die from asthma every year. And in our state. You know, our tagline, we're one community under the Big Sky, I guarantee listeners will know someone, eventually, you know whether now it's Mia touching those listeners being one of those seven every year, but seven over 10 years that 70 people died from asthma, and some of it can be prevented. There's so much work to do and to be done. When you look at like us sports coaches. The only thing they get is a little box that says this is a child have asthma, yes. There's no guidance. There's no bring your inhaler. To practice with you. There was a little boy in Washington who died a year or two ago after having to do PE outside in the smoke in the horrible wildfire smoke. And so that's why I'm so glad that you came forward with your story of MIA because, you know, I sit and as I listened to the care she got you know, there's so much that can be done and more. So every year, more and more new developments. And

Rachel Anderson  17:44  
one of the issues I think for a lot of people is the cost of the inhalers is is tough. I went to get my son's maintenance inhaler recently. $300 after insurance.

Jennifer Van Syckle  18:00  
Yeah, yes. No, it's It's something that absolutely, I mean, even in the diabetes, world cost of insulin. You know, it should cost dollars, why is it costing hundreds. And a new thing that's popping on our radar is spacers. So a spacer is like a tube that connects to the other end of the inhaler, that somebody can basically breathe a little slower and get that medicine down in their their lungs will spacers a lot of insurances don't cover it. And they're 11. They're $15. And in today's world, that's the difference between paying for half your groceries or not. So how much do you think you're having to spend every month for medication for your son? Or that he is?

Rachel Anderson  18:48  
Probably about 350 to $400?

Jennifer Van Syckle  18:53  
Yeah, and that's a bite most people can't take? Yeah, it's it's crazy. It seems

Rachel Anderson  18:59  
to the cost seems to change, too. It's not always, always the same. And the other interesting thing is the way that the provider writes the prescription makes a difference as well. So basically, if they write it so that one inhaler lasts longer than a month, the insurance makes you pay two co-pays for that one inhaler.

Jennifer Van Syckle  19:25  
Whoa. Oh, I didn't know that. That's crazy.

Rachel Anderson  19:28  
Yeah. So so they have to write it so that it will technically in theory, I guess get used in a month. And you can avoid that the two co-pays and I don't know if that varies from one insurance to another it could but for the insurance we have that's the way it is.

Jennifer Van Syckle  19:48  
And you mentioned the asthma home visiting program which it had been kind of limited availability in Montana, but now it is in all 56 counties and Yeah, it's been proven we've been in the asthma program, we've been watching the data on this for, oh, gosh, years, and it can really help the home visitors can help identify things that might make the asthma worse. They can help you get your medications sorted out. They're kind of just that extra, extra helping hand to help with that asthma care.

Rachel Anderson  20:24  
I just, I wonder, you know, if Mia would have been part of a of that program, and, you know, maybe things would be different. Yeah. Yeah,

Jennifer Van Syckle  20:39  
just that little extra education, that little extra care and in time, and let's help figure this out and understand what's going on and help you get get through it. Yeah, it's a, it's a year long program. And, you know, not only that, but the recipient gets a HEPA air filter, which in Montana is almost starting to become a must, unfortunately, every summer because of that wildfire, smoke that we, we all seem to live with. And yeah, and you know, the other thing that's out there, too, there's a thing called certified asthma educators, and these are nurses, pharmacists, respiratory therapists, people who have had a lot of experience and asthma, they take a very, very difficult exam, and kind of almost become the experts on asthma care in the state. And those are frequently available. And unfortunately, it's not something that's really advertised because again, with a lot of billing, like a lot of them are pharmacists in Montana. And they're not able to get reimbursed for a lot of that education they provide, they have to just do it, kind of almost free across the counter, but they can really help with asthma care, but it's part of the struggle is getting the word out about that. And so we definitely appreciate, you know, you sharing your story and stepping out there with it to help spread the word and I know, every single one of us know somebody with asthma, and maybe whether they need it or not, that little bit of extra help could definitely go a long ways. Rachel has had to walk one very difficult path these past few years. I want to take a moment and thank her for sharing her journey for sharing the memory of her daughter, and for stepping out and advocating for asthma and awareness of that chronic disease. And thank you for joining us for this episode of talking health in the 406 where we're one community under theBig Sky. If you'd like more information on anything you heard today, visit our website at Talkinghealthinthe406.mt.gov. Until next time, take care.

Transcribed by https://otter.ai