Latest / Get Savvy...Demystifying Healthcare / Episode 144: Both Sides of The Bed: The Nurse Who Tells Caregivers What the Healthcare System Won’t

Transcript

Episode 144: Both Sides of The Bed: The Nurse Who Tells Caregivers What the Healthcare System Won’t · Get Savvy...Demystifying Healthcare

• 0:00
  SPEAKER_02: Going back in my mind to back in the day, you know, your doctor wants you to have an MRI for your back because your back hurts and they put it in, the insurance denies it.
• 0:10
  SPEAKER_02: Well, most of the time it's being denied because you haven't had an x-ray or you haven't had physical therapy yet.
• 0:16
  SPEAKER_02: And you have to try and fail so many things before you can get certain tests.
• 0:20
  SPEAKER_02: You know, having that explained to you because maybe the doctor or the nurse didn't transfer that information over.
• 0:26
  SPEAKER_02: Or maybe you don't believe them.
• 0:28
  SPEAKER_02: You know, I've had a lot of patients like my insurance wouldn't tell me that.
• 0:32
  SPEAKER_02: Well, okay, you could call too.
• 0:34
  SPEAKER_02: But being that advocate and being able to have those conversations, I think is the biggest thing that we need to, as caregivers and patients, to learn.
• 0:47
  SPEAKER_00: If healthcare has ever left you feeling frustrated, overwhelmed, or stuck, then show it's for you.
• 0:53
  SPEAKER_00: Welcome to Get Stabby, the Mystified Healthcare Weekly Podcast, where we take complicated healthcare topics and make them simple healthcare.
• 1:13
  SPEAKER_00: Get Stabby with your host.
• 1:23
  SPEAKER_01: Hello everyone, before we get into the show, just a quick 90-second update.
• 1:28
  SPEAKER_01: What could you accomplish if you could gain five or even 10 hours every week?
• 1:33
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• 1:36
  SPEAKER_01: Well, if you haven't heard, I do have a second podcast called Playbook AI Partners.
• 1:41
  SPEAKER_01: Yes, it's that AI topic.
• 1:43
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• 1:53
  SPEAKER_01: As always, I am doing what I do best, and that is demystifying those confusing topics and making them simple.
• 2:01
  SPEAKER_01: At Playbook AI Partners, I deliver practical conversations, expert insights, and simple AI knowledge nuggets that you can put to work in your business or personal goals right away without becoming a technology expert.
• 2:15
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• 2:32
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• 2:36
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• 2:38
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• 2:40
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• 2:47
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• 2:49
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• 2:53
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• 2:56
  SPEAKER_01: Check out Playbook AI Partners Podcast, the AI Solution Locker, and join us in the Huddle.
• 3:01
  SPEAKER_01: I'll drop a link to it.
• 3:03
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• 3:05
  SPEAKER_01: Let's demystify AI together.
• 3:08
  SPEAKER_01: And now on with the show.
• 3:15
  SPEAKER_01: What happens when you suddenly become the one responsible for managing appointments, medications, insurance, and impossible healthcare decisions?
• 3:24
  SPEAKER_01: What if you had the scripts, the checklist, and insider knowledge to navigate the system without losing yourself in the process?
• 3:32
  SPEAKER_01: Today we're cutting through the confusion with the No BS Guide for every caregiver trying to hold it all together.
• 3:38
  SPEAKER_01: To help us get into this topic today is Tiffany Avell.
• 3:41
  SPEAKER_01: Tiffany is a registered nurse, functional medicine health coach, and caregiver coach with more than 20 years in health care, including senior leadership.
• 3:49
  SPEAKER_01: She is the author of the No BS Guide to Caregiving.
• 3:52
  SPEAKER_01: Tiffany knows the system from both sides.
• 3:54
  SPEAKER_01: She spent decades working inside it, then found herself navigating it as a caregiver for her own husband.
• 4:01
  SPEAKER_01: Welcome to the show, Tiffany.
• 4:02
  SPEAKER_02: Yes, thank you very much.
• 4:04
  SPEAKER_01: Well, we are excited to have you on.
• 4:05
  SPEAKER_01: You have such a story to tell, and I think one that uh listeners can greatly benefit from.
• 4:10
  SPEAKER_01: So let's get started with having you tell us your story and how it led you on the journey you are on today.
• 4:16
  SPEAKER_02: Yeah, so I was in healthcare for 22 years, still in healthcare.
• 4:20
  SPEAKER_02: I'm actually a doctoral candidate for integrative healthcare at this time.
• 4:24
  SPEAKER_02: But my husband in 2016 uh was diagnosed at the age of 39 for him at the time with renal cell cancer.
• 4:32
  SPEAKER_02: And he had his kidney removed and we were told he was cancer free and life was good.
• 4:37
  SPEAKER_02: But then seven years later, he started having some vision problems, and we kept going back and forth to eye doctors, and um I went to his primary care provider, which is someone that I worked with because I was in uh the health care system at the time and worked with in primary care in all of the ambulatory clinics that are local small health system.
• 4:56
  SPEAKER_02: And she and I were talking about it, and we decided that he needed to get a CAT scan of the brain just in case because of his history.
• 5:04
  SPEAKER_02: And we ordered that, but I told her, I was like, you know, they always told us that if it came back, it's gonna be in the abdomen or chest.
• 5:10
  SPEAKER_02: So go ahead and scan those two just in case.
• 5:13
  SPEAKER_02: And she did.
• 5:14
  SPEAKER_02: And that night the brain came back fine, but his abdomen showed that he had metastatic cancer to his pancreas and his liver.
• 5:24
  SPEAKER_02: And so we were really shocked with that because it wasn't something we were expecting.
• 5:28
  SPEAKER_02: We were expecting something in the brain or his eye because of this vision issue that he's been having.
• 5:33
  SPEAKER_02: So we jumped into the system of getting things ready, uh, what treatment options are there?
• 5:41
  SPEAKER_02: He only had one kidney.
• 5:42
  SPEAKER_02: There's different things that go on.
• 5:44
  SPEAKER_02: And one of the things that I talk about, and I really stress for people, is understanding the system a little bit better.
• 5:50
  SPEAKER_02: Because if you're able to understand it, you can then navigate it.
• 5:54
  SPEAKER_02: The night before he was supposed to have his first immunotherapy, I got a phone call from the nurse in the oncology clinic, and she told me that insurance was denying his immunotherapy.
• 6:05
  SPEAKER_02: And I've been around insurance enough.
• 6:07
  SPEAKER_02: I've done prior authorizations.
• 6:08
  SPEAKER_02: I spent 45 minutes to an hour on the phone back in the day when you had to call every one of them.
• 6:14
  SPEAKER_02: And now we have portals which make life a lot easier for the ones doing them.
• 6:18
  SPEAKER_02: And uh I told her, I was like, there's no way my insurance is denying this.
• 6:22
  SPEAKER_02: Like, we don't even need to have a prior authorization for an MRI.
• 6:25
  SPEAKER_02: They are not gonna deny immunotherapy.
• 6:27
  SPEAKER_02: I'm like, I'm gonna call my insurance myself.
• 6:29
  SPEAKER_02: And so I was before I got off the phone with her, I was like, the medication you're gonna give him is key truda, correct?
• 6:34
  SPEAKER_02: Because I knew from my experience that I needed a J code or CPT code associated with the medicine for the insurance company to know what I am talking about because insurance companies, everything's in codes, and then the diagnosis code.
• 6:47
  SPEAKER_02: And so I got the diagnosis code they were using, which was metastatic retal cell, and then the code for the ketruda, and I called my insurance company, and they're like floored.
• 6:58
  SPEAKER_02: We don't know what's going on, we've never denied anything.
• 7:00
  SPEAKER_02: There's no denial on our end, we wouldn't deny this.
• 7:04
  SPEAKER_02: Like, you need to call them back.
• 7:05
  SPEAKER_02: There's no reason for this.
• 7:06
  SPEAKER_02: So I called my uh or my husband's uh nurse back in the oncology office and spoke with her, and I was like, Hey, we'll be there at 9 30.
• 7:15
  SPEAKER_02: This is what they're telling me.
• 7:16
  SPEAKER_02: We'll see you then.
• 7:17
  SPEAKER_02: Well, 10 minutes later, she called me and she said, Tiffany, I'm so sorry to bother you again, but I just got off the phone with my prior authorization specialist and they said the code you're using for the medication is the wrong code.
• 7:29
  SPEAKER_02: And I said, Well, you told me it was Keytruda, right?
• 7:32
  SPEAKER_02: And she said, Yes, it's key trudge.
• 7:33
  SPEAKER_02: I said, Well, what did they say is the right code?
• 7:36
  SPEAKER_02: Well, she read back to me the code, which would have been the diagnosis code for the renal cell cancer.
• 7:42
  SPEAKER_02: The prior authorization specialist had actually flipped her codes and was using the diagnosis code for the procedure and the procedure code for the diagnosis.
• 7:49
  SPEAKER_02: And the system wasn't smart enough to say, hey, this doesn't even exist for this category.
• 7:55
  SPEAKER_02: You've entered the wrong thing.
• 7:57
  SPEAKER_02: They just say denied, which is also why the insurance company had no record of a denial because it was never truly a denial.
• 8:04
  SPEAKER_02: It was that she was entering the wrong code.
• 8:06
  SPEAKER_02: So we were able to sort that out.
• 8:09
  SPEAKER_02: And my husband and I went to his appointment the next day, and it was 9 30 in the morning.
• 8:14
  SPEAKER_02: And his doctor, when we got there, was ecstatic because they had had so many denials and they could never figure out why.
• 8:22
  SPEAKER_02: And now they were wondering if this is what was going on.
• 8:25
  SPEAKER_02: And it made me realize even then, so early in his treatment, that if I was able to figure it out, because I had been the kind of manager, nurse, director who was able to uh get into the nitty-gritty and learn a little bit about coding, learn a little bit about billing, learn about how these systems work, most people wouldn't.
• 8:45
  SPEAKER_02: They would have just heard you can't have your immunotherapy, and then their treatment would have been delayed or not have happened at all, which is scary.
• 8:54
  SPEAKER_02: And so we continued with my husband's treatment.
• 8:58
  SPEAKER_02: So all this started in January 23.
• 9:00
  SPEAKER_02: In January of 24, he had a PET scan and it showed brain meds.
• 9:04
  SPEAKER_02: And we had been treating his eye as if it was renal cell cancer, and along with his abdomen and his pelvis, because they could find funny things back in the eye.
• 9:12
  SPEAKER_02: We were seeing an ophthalmologist, but they could never say for sure it was renal cell.
• 9:17
  SPEAKER_02: It was an assumption, which is the right assumption because it's really hard to imagine you'd have two primary cancers.
• 9:23
  SPEAKER_02: So they did gamma knife on him on um February the 14th of 2024.
• 9:31
  SPEAKER_02: And the next day he woke up and he couldn't put his pants on and he couldn't write his name.
• 9:36
  SPEAKER_02: And gamma knife is a type of procedure that is so safe that you really should be able to go to work the next day.
• 9:42
  SPEAKER_02: What it was though, well, ended up taking him into my local ER, transferred him up to the hospital where he was receiving treatment at, and had to go in for an emergency craniotomy the next day.
• 9:52
  SPEAKER_02: Which he was released the day after that, but he did really go through that procedure, but a week later they called us because the specimen came back and what was in his brain was never renal cell cancer.
• 10:03
  SPEAKER_02: He had central nervous system lymphoma on top of the renal cell cancer.
• 10:07
  SPEAKER_02: So the renal cell cancer was in his pancreas and his liver.
• 10:10
  SPEAKER_02: His eye, though, I believe the whole time was it was ocular lymphoma.
• 10:16
  SPEAKER_02: There's a ocular lymphoma that happens that is really hard to diagnose.
• 10:21
  SPEAKER_02: And when it goes untreated, it will spread to the brain.
• 10:25
  SPEAKER_02: And so that is what had happened with him.
• 10:28
  SPEAKER_02: So he he did really good.
• 10:30
  SPEAKER_02: My husband, he was really strong his entire battle.
• 10:34
  SPEAKER_02: He did eight long treatments of high dose methotrexate.
• 10:38
  SPEAKER_02: And when I say long treatments, each one of them required him to be hospitalized for a minimum of five days uh to receive the medicine to ensure that his kidney that he had could continue to hold up.
• 10:48
  SPEAKER_02: And then in June of 25, he was cleared of the uh central nervous system lymphoma.
• 10:55
  SPEAKER_02: And things got rocky up and down.
• 10:57
  SPEAKER_02: You know, his cancer was spreading still with the renal cell, medications weren't working as well.
• 11:01
  SPEAKER_02: But in April 1st, 2025, he uh acted like he was having a stroke.
• 11:08
  SPEAKER_02: And I made him go to the hospital because I told him we sorry, I have a friend that we had fought this long to uh keep him alive.
• 11:15
  SPEAKER_02: The last thing that I was gonna do was lose him to a stroke.
• 11:18
  SPEAKER_02: And he went and what it was was the brain cancer was back.
• 11:22
  SPEAKER_02: And it was worse than it was before we found it the first time.
• 11:26
  SPEAKER_02: And so he decided then not to continue with treatment.
• 11:30
  SPEAKER_02: And we lost him on April 25th.
• 11:33
  SPEAKER_02: And there were a lot of things that happened through his care, and people would often say, Well, what would you do if you didn't have Tiffy?
• 11:41
  SPEAKER_02: Or, you know, thank God Tiffy figured this out, or you know, because it was just really hard trying to navigate the system that I already knew inside and out, that if it wasn't for me doing it, no one else would have or would have known what to do.
• 11:56
  SPEAKER_02: And so that's kind of where I started thinking even before you passed away, like, how can I help other people like me?
• 12:03
  SPEAKER_02: How can I help caregivers?
• 12:05
  SPEAKER_02: And that's where my book came in.
• 12:07
  SPEAKER_01: Thank you for sharing uh your story and being so open about it.
• 12:10
  SPEAKER_01: We talked about that in our pre-talk because the more open we can be, the more I think that people can learn from that.
• 12:16
  SPEAKER_01: And I am sorry for Dave's loss.
• 12:19
  SPEAKER_01: It sounded like he fought a good battle.
• 12:21
  SPEAKER_01: And again, you know, with you by his side, you sound like you were such a source of strength and his anchor through all of that.
• 12:28
  SPEAKER_01: But what what I kept going to in my head as I was listening to this, and and I think you were going there, but I think about, you know, you have this experience as a nurse, you've worked in the healthcare system.
• 12:38
  SPEAKER_01: I mentioned to you I've I've been an insurance broker and I've, you know, I have my this podcast, of course, because I think healthcare illiteracy is so high, and most people just don't know where to begin or how to navigate or how to troubleshoot, or if a denial occurs, it occurs.
• 12:53
  SPEAKER_01: But when you were talking about the coding, most people, and I'm not being condescending of anyone's intelligence, mind you, it's just we don't all live in the world of coding every day, or even in most cases, know what that is.
• 13:05
  SPEAKER_01: So, what did being on the other side of the bed teach you, really, that two decades of nursing never did?
• 13:10
  SPEAKER_01: If you had to pick two or three things, what did you learn most being when I say on the other side of the bed as a caregiver?
• 13:16
  SPEAKER_02: So, and I I knew this already, but at the same time, I I don't think I fully grasped it.
• 13:24
  SPEAKER_02: But those of us that are in healthcare, we're only human and we make mistakes.
• 13:28
  SPEAKER_02: Doctors make mistakes, you know, that prior authorization specialist, she never intended for that to happen.
• 13:34
  SPEAKER_02: You know, I'm sure after she figured it out and me being a patient's wife figuring it out really made things worse.
• 13:40
  SPEAKER_02: But no one intends for bad things to happen, but they do.
• 13:44
  SPEAKER_02: And as a caregiver or as a patient, you need to, I don't want to say be resilient, but you have to be ready for those and not worry about asking questions or pushing back or like if a denial occurs, okay, well, why was it denied?
• 14:01
  SPEAKER_02: Uh, let me call my insurance and taking the action to try to work within the system for yourself or for the person that you're caring for.
• 14:10
  SPEAKER_01: For sure.
• 14:10
  SPEAKER_01: And you do have to be resilient through all that.
• 14:13
  SPEAKER_01: Did you talk about that Dave was treated for the wrong cancer for over a year?
• 14:17
  SPEAKER_01: How does that misdiagnosis like that happen?
• 14:20
  SPEAKER_01: And what do you wish you or his doctors had caught sooner or done differently?
• 14:24
  SPEAKER_02: I don't know if there's a way to have kept that one from happening.
• 14:29
  SPEAKER_02: I feel like we really did all the things that they could have done in his the vision problems was uh people describe it sometimes like a retinal tear where they have these floaters and the vision like spots are going in their eyes, and that's what his main uh problem was.
• 14:44
  SPEAKER_02: And so we were seeing one of the best ophthalmologists in our area and going to him and he did surgery.
• 14:49
  SPEAKER_02: He went in and removed the lens and cleared it off, even tried biopsying the samples, but with eye samples, they're so small and that you may not ever get enough to actually get a clear diagnosis.
• 15:04
  SPEAKER_02: His came back where they didn't have a reason or what maybe it was, like it didn't show the cancer in that biopsy.
• 15:12
  SPEAKER_02: But I deeply feel like it was intraocul that's what it's called, intraocular lymphoma.
• 15:17
  SPEAKER_02: I know when we were in the hospital when we got admitted, right after the uh doctors had caught us and they said, Hey, you know, that biopsy we did on his brain, it came back.
• 15:25
  SPEAKER_02: This is central nervous system lymphoma.
• 15:27
  SPEAKER_02: You need to pack up, come to the hospital, you're gonna be here for a while.
• 15:30
  SPEAKER_02: Like they wanted him there that day.
• 15:31
  SPEAKER_02: And when I started learning about it, because I'm also, you know, healthcare nurse, you know, I'm always trying to learn more about what things are.
• 15:40
  SPEAKER_02: I asked them as soon as we got there, I was like, could his eye have been intraocular lymphoma the whole time?
• 15:47
  SPEAKER_02: And we missed it.
• 15:49
  SPEAKER_02: And this is it coming in the form now of primary central nervous system lymphoma.
• 15:55
  SPEAKER_02: Because the the central nervous system lymphoma and the uh renal cell are not two that are ever linked together.
• 16:00
  SPEAKER_02: It's not like a metastatic cancer or you may get one cancer with another.
• 16:04
  SPEAKER_02: And uh oh my God, everybody was in the room after that.
• 16:08
  SPEAKER_02: Yeah, like they all started showing up, like, oh well.
• 16:11
  SPEAKER_02: And I was like, I wasn't meaning it like to say, you guys messed up.
• 16:15
  SPEAKER_02: I was meaning it more like, what can we do to make things better?
• 16:18
  SPEAKER_02: What can we do to not miss this again?
• 16:20
  SPEAKER_02: How can we work through it?
• 16:21
  SPEAKER_02: Because, you know, we are all human and we all do make mistakes, but what differentiates us is how we learn from those.
• 16:28
  SPEAKER_01: No, absolutely.
• 16:28
  SPEAKER_01: So I have a question for you.
• 16:29
  SPEAKER_01: As you were talking, one of the things I think about is our traditional healthcare system.
• 16:33
  SPEAKER_01: And I think to your very point, I I always assume good intent, but I often think one, I think as a consumer or as a patient, it's really hard to figure out how complex it can be, insurance and all then some.
• 16:45
  SPEAKER_01: But we also think on the provider side that are trying to navigate whether it's a large healthcare system or it trying to maintain an independent practice or you know, a big practice you now bought by private equity.
• 16:56
  SPEAKER_01: I mean, there's so many layers to this that make traditional healthcare not effective, whether it's the massive amount of work or patients that have to be seen in a day.
• 17:05
  SPEAKER_01: I sometimes wonder, and I was curious about your thoughts on this, is how is a provider supposed to be successful or can be successful in our current system, given what they are up against with the admin, the insurance, the authorizations, and which unfortunately I do think lead to mistakes that happen.
• 17:24
  SPEAKER_01: And how can two-part question, knowing what providers are up against, how can consumers better advocate for themselves or their loved ones?
• 17:31
  SPEAKER_02: So one of the things that I like to talk about is it used to be, and I live in rural West Virginia, so we still have Doc Pete.
• 17:40
  SPEAKER_02: Doc Pete was the local doc who knew everybody, he probably burst half the town, you know, 20, 40, 50 years ago.
• 17:47
  SPEAKER_02: And so people still think, well, when Doc Pete was here, Doc Pete knew everything about me.
• 17:52
  SPEAKER_02: And, you know, he delivered my mom, my grandma, you know, like those kind of old-time home visit small town doctors or the ones that we see in Virgin River, or you know what I mean?
• 18:03
  SPEAKER_02: Like, but the truth is, is your doctors and your providers are within a system, even if it is private practice, they usually have a caseload of 2,500 to 5,000 patients.
• 18:15
  SPEAKER_02: And that is in order for them to be financially successful.
• 18:19
  SPEAKER_02: And I'm not just talking their paycheck, I'm talking keeping the lights on in the facility, hiring the nurse, paying for the receptionist, all the computer equipment, uh the electronic health records, you know, having the audits paid for, having the billers there, the coders.
• 18:36
  SPEAKER_02: There's so many people that need to be there to do the job.
• 18:39
  SPEAKER_02: So that doctor, every patient that comes through, has to help pay for those expenses.
• 18:45
  SPEAKER_02: And then you have the insurance company who, if we bill, and I say we still, but if a doctor bills$100, where I was working at, we were lucky to get 25 to 46% of that$100.
• 18:59
  SPEAKER_02: So, you know, most in my area is mostly Medicare, Medicaid, because we have such an aging population, too, that would then drop it closer to the 26%.
• 19:10
  SPEAKER_02: So for every dollar billed, we were only going to collect 26 cents for every dollar.
• 19:14
  SPEAKER_02: And it just adds up.
• 19:16
  SPEAKER_02: And healthcare, you know, people complain that healthcare is expensive, and it is, but there's a lot that goes into it.
• 19:22
  SPEAKER_02: And there are things that we can get into a whole bunch of different, you know, discussions on that.
• 19:28
  SPEAKER_02: But, you know, that's why I really feel that patients and caregivers really need to understand themselves, their condition, and be their best advocate because their doctor's not always going to remember it.
• 19:41
  SPEAKER_01: Absolutely.
• 19:41
  SPEAKER_01: Thank you for that background on that.
• 19:43
  SPEAKER_01: It was hard to hear that, but I know that for my days of contracting for provider groups, I mean, the rates that providers are able to negotiate for that reimbursement is is barely enough to keep the lights on, unfortunately.
• 19:55
  SPEAKER_01: But with that, you have created your book, No BS Guide for Caregivers.
• 20:00
  SPEAKER_01: And let's talk about that because I think that if there's something that that in my mind that patients can do is to work, I always say in partnership with their providers.
• 20:10
  SPEAKER_01: But part of being successful at that partnership is certainly having that knowledge.
• 20:14
  SPEAKER_01: You wrote the book, No BS Guide for Caregivers.
• 20:16
  SPEAKER_01: Tell us more about the book and and what people can expect.
• 20:19
  SPEAKER_02: Yeah.
• 20:20
  SPEAKER_02: So the book is part guide, part my life, and what I went through with Dave.
• 20:25
  SPEAKER_02: Um, there are different chapters from the very beginning, which is organization.
• 20:29
  SPEAKER_02: And I know that's one thing that I find is very important is having things organized the way that is best for you or whoever.
• 20:37
  SPEAKER_02: It could be with the notes app on your phone, it could be with a Google Drive, it could be with a old-fashioned spiral notebook or composition notebook or three-ring bind or whatever it is, just making sure that you have all the information you need in one place and it's available when you need it.
• 20:53
  SPEAKER_02: Because a lot of times we ended up waiting if we couldn't get information, like between doctors and things like that, because let's say uh they needed Dave to have a PET scan.
• 21:04
  SPEAKER_02: A lot of times they would want to do the PET scan at the hospital where his treatment was, but that's an hour and a half away from us.
• 21:10
  SPEAKER_02: So we would do that on the days that they had doctor's appointments there and we were driving up and doing a PET scan in a doctor's office visit.
• 21:17
  SPEAKER_02: But if it was going to be on a separate day, we wouldn't didn't want to drive an hour and a half when we could drive 20 minutes down the road to the local hospital and have a PET scan.
• 21:25
  SPEAKER_02: So making sure you had like copies of orders and things of that nature so that way you were able to follow up and help make sure things are scheduled where they need to be.
• 21:35
  SPEAKER_02: Copies of orders too would also help in the instance where um if you're calling a insurance company.
• 21:41
  SPEAKER_02: If you had the copy of the order, then you're gonna have those codes that we talked about in front of you because those are gonna be on it, but also making sure that you have medications.
• 21:50
  SPEAKER_02: You know, I'm I've checked in thousands of patients in my day, and you know, I take a white pill for my blood pressure, or I take this pill for my heart, but nobody remembers.
• 22:00
  SPEAKER_02: what their pills are or what they're for or who they come from or who ordered it.
• 22:05
  SPEAKER_02: And so um I always suggest having a very detailed medication list.
• 22:10
  SPEAKER_02: What you take, how often, what the dose is, who prescribed it, what pharmacy do you get it filled at.
• 22:15
  SPEAKER_02: Now that we have mail order pharmacies and some have to come from different mail order pharmacies, like my husband's medicine, a lot of it came from biologic uh pharmacy.
• 22:24
  SPEAKER_02: So it wasn't even like the normal mail order or local pharmacy.
• 22:28
  SPEAKER_02: It had to come from a higher sourced pharmacy.
• 22:31
  SPEAKER_02: And those are the kind of things that you're gonna need.
• 22:34
  SPEAKER_02: And if you don't have it organized, you're you're gonna be lost.
• 22:37
  SPEAKER_02: But what I also get into is how to talk to a doctor how to have these difficult conversations when you don't understand what's going on.
• 22:46
  SPEAKER_02: How to call your insurance company and talk about a diagnosis code to see or how to talk about a prior authorization to figure out why it may have been missed or denied.
• 22:59
  SPEAKER_02: Going back in my mind to back in the day, you know, your doctor wants you to have an MRI for your back because your back hurts and they put it in, the insurance denies it, well most of the time it's being denied because you haven't had an x-ray or you haven't had physical therapy yet.
• 23:14
  SPEAKER_02: And you have to try and fail so many things before you can get certain tests.
• 23:18
  SPEAKER_02: You know, having that explained to you because maybe the doctor or the nurse didn't transfer that information over.
• 23:25
  SPEAKER_02: Or maybe you don't believe them.
• 23:27
  SPEAKER_02: You know, I've had a lot of patients like my insurance wouldn't tell me that well okay you know you could call too but being that advocate and being able to have those conversations I think is the biggest thing that we need to as caregivers and patience to learn.
• 23:42
  SPEAKER_01: Absolutely it sounds like the book is very factual and people can really go through that and certainly understand the story that you've been through and certainly your wisdom that you've we've acquired to really help people do that.
• 23:54
  SPEAKER_01: And we'll make sure and link to it but in most places I believe like Amazon you can find your book if do I have that correct?
• 24:01
  SPEAKER_02: Yes it is on Amazon.
• 24:02
  SPEAKER_01: Okay perfect.
• 24:03
  SPEAKER_01: Are any other places that you want to mention that they can get your book from Amazon is the biggest one right now.
• 24:08
  SPEAKER_02: It's on Ingram Sparks too so libraries are able to get it.
• 24:12
  SPEAKER_02: Oh good.
• 24:14
  SPEAKER_01: Well as we draw to a close I was hoping that you could share for someone who's maybe listening whose loved one was just diagnosed or who feels completely overwhelmed what are just a few things that you tell them to do in the next week or the next month to support their loved one and not lose himself along the way.
• 24:33
  SPEAKER_02: So it's hard.
• 24:35
  SPEAKER_02: This is the hardest job being a caregiver that you've never signed up for you are essentially going into the position of medical office manager and learning an entire new role and understand that you are going to need time to learn it and you're gonna make mistakes and things are going to happen, but you need to give yourself grace because it's just we all learn from mistakes too.
• 24:58
  SPEAKER_02: You know I'm a big believer in that and you just do the best that you can and do the best you can even taking care of yourself.
• 25:05
  SPEAKER_02: I know when my husband was going through it I had gained so much weight.
• 25:09
  SPEAKER_02: I was up to 267 pounds and I'm five foot eight and I was like people would say something about my weight gain and I look at him I'm like I ain't worried about my weight gain right now.
• 25:19
  SPEAKER_02: I'll worry about my weight gain later.
• 25:21
  SPEAKER_02: Like right now I'm if I need a chocolate bar to make me feel better by God I'm eating a chocolate bar.
• 25:26
  SPEAKER_02: And but then you know after I lost my husband I needed to do something to help take it off because I still have a five year old that I need to care for and so I need to be here for him.
• 25:36
  SPEAKER_02: So I've thankfully lost about 60 of those pounds and still working on it.
• 25:40
  SPEAKER_02: But uh you know you're gonna lose yourself in the process that's gonna happen.
• 25:45
  SPEAKER_02: And you know another thing I always like to tell people is you're gonna start grieving way before your loved one passes away.
• 25:51
  SPEAKER_02: I don't want it to sound morbid, but especially if you're dealing with someone who does have a terminal condition, the grief will start months before mine I think started about a year and a half before when I realized that this could be our last Thanksgiving.
• 26:04
  SPEAKER_02: And that's normal too.
• 26:06
  SPEAKER_02: And I always encourage people to talk to someone it could be a friend, it could be a trusted coworker or if it needs to be someone professional that's perfectly fine.
• 26:16
  SPEAKER_01: I appreciate that because um I think a lot of us are coming up on caring I know it's a little bit different than someone who's been diagnosed with an illness but getting to that point we're also caring for our senior loved ones as well.
• 26:28
  SPEAKER_01: And so just being that caregiver is much more common, I think that we're beginning to see.
• 26:33
  SPEAKER_01: So I appreciate those words of wisdom and especially your openness about you know the grief process as well.
• 26:39
  SPEAKER_01: And but I'm really so grateful that you wrote the book and and it's not easy to probably pour your heart out in that but just to to share your words of wisdom and and we'll certainly do our part to get the word out there about this because we want people to pick up the book and read and certainly learn from what you've experienced and certainly what you've shared with us today.
• 26:57
  SPEAKER_01: So thank you Tiffany I really appreciate it.
• 27:00
  SPEAKER_02: Thank you I appreciate you inviting me on and giving me time with your audience.
• 27:03
  SPEAKER_01: I enjoyed having Tiffany on the show I appreciated her telling her story and rising up to share with you and others about how to navigate the healthcare system for you andor if you are a caregiver.
• 27:16
  SPEAKER_01: Make sure and check out her website to learn all the great things that she's doing as well as her book The No BS Guide for Caregivers.
• 27:23
  SPEAKER_01: In our next episode and at the time of this recording it is that time of the year for 2027 Medicare open enrollment.
• 27:31
  SPEAKER_01: This is the time of year I think that most people dread.
• 27:34
  SPEAKER_01: They think about all those nonstop commercials promising money back, Visa cards, extra benefits and a plan that sounds like it should come with the Superman cape.
• 27:43
  SPEAKER_01: And the question becomes is the plan that you have still working for you or is there a better plan or are these promises from these commercials really true?
• 27:52
  SPEAKER_01: Well we're gonna cut through all of that hype.
• 27:54
  SPEAKER_01: We're gonna demystify the Medicare open enrollment and talk about what to check, the questions to ask and the power of having a broker on your side I'm bringing on Krista Hugenberg to help us a better understand this.
• 28:07
  SPEAKER_01: Krista has over 15 years of experience working for health plans and provider groups Krista's healthcare knowledge is deepened by her role as a medical mom caring for her own child who faces medical challenges.
• 28:19
  SPEAKER_01: Through her personal and professional experience she has developed a profound understanding of the complexities and obstacles individuals and families encounter while navigating the healthcare landscape.
• 28:31
  SPEAKER_01: Make sure you follow the podcast so you don't miss this episode or any of the other episodes as well.
• 28:36
  SPEAKER_01: I appreciate you following and your support until next time get savvy