E138: Advice from Both Sides of Healthcare with Dr. Melanie Hoppers

Episode 138 May 16, 2023 00:30:23
E138: Advice from Both Sides of Healthcare with Dr. Melanie Hoppers
The POTScast
E138: Advice from Both Sides of Healthcare with Dr. Melanie Hoppers

May 16 2023 | 00:30:23

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Hosted By

Cathy Pederson Jill Brook

Show Notes

Dr. Melanie Hoppers has a unique perspective on POTS - she learned of it when her daughter became ill and now dedicates her medical career to patients with POTS, ME/CFS, MCAS and long COVID. Join us for this fascinating healthcare system episode from the patient and physician perspective.

You can read the transcript for this episode here: https://tinyurl.com/potscast138

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Episode Transcript

E138: Dr. Melanie Hoppers on Advice from Both Sides of Healthcare [00:00:00] Jill Brook: Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today I am honored to get to speak with Dr. Melanie Hoppers, who is double board certified in internal medicine and pediatrics. Her clinic in Tennessee includes primary care, urgent care, emergency medicine, and occupational medicine. Dr. Hoppers is also a researcher for new drugs coming to market, so she has vast experience and expertise as a physician, but she also has seen healthcare for complex patients from the other side as a family member of a loved one with complex chronic illness. So I feel so lucky she's gonna share her insights with us today. Dr. Hoppers, thank you so much for coming. [00:00:47] Dr. Melanie Hoppers: Thank you so much for having me, Jill. I'm so excited. [00:00:50] Jill Brook: So maybe for starters, can you just tell us a bit more about yourself, your medical practice, and maybe what drove you to originally want to be a doctor? [00:00:59] Dr. Melanie Hoppers: Sure. Honestly I have no idea why I wanted to be a doctor. I was in fourth grade when I decided I wanted to become a doctor. I had no idea what it meant, but I knew that was what I wanted. It probably stems from the fact my mother had ovarian cancer when I was younger and my mother survived the ovarian cancer. But I guess it just drove me to have that desire, but it's been exactly what I wanted to do and I've enjoyed it and loved what I do, so it just worked out perfectly. I live in Myland, Tennessee. It's a small town in rural Tennessee. And I have two clinics and it is primary care, urgent care, occupational medicine, as you've already said. But I currently only see patients myself with long COVID, myalgic encephalitis, POTS, and MCAS and various and sundry things such as that. This was stemmed from the fact that I could not find healthcare for my daughter when she needed it in our area. [00:01:53] Jill Brook: Wow. So are you saying that in a small rural town in Tennessee, you have enough demand that you have a a decent amount of those things? [00:02:02] Dr. Melanie Hoppers: Yes, it is insane. I had no idea. I currently have, and this doesn't sound like a lot, but I currently have 75 long COVID or ME or POTS patients in our little town, and I don't particularly advertise it. I post things occasionally on our website and things like that, and we have a little thing in our clinic. We have primary care, and so our primary care providers refer me patients, but yes and they keep coming. They keep coming. [00:02:33] Jill Brook: Wow. Okay. So can I ask you what it was like to be a doctor, like before COVID, before you were introduced to the world of chronic illness? Like what was a day like and what was it like to be a doctor back then? [00:02:47] Dr. Melanie Hoppers: I was a very traditional conservative. You know, straight up doctor, I did everything by the book. I was an empathetic doctor and I love my patients, and I would have concern for my patients who probably came in and had, say, POTS or ME, and I didn't know it. I was empathetic with them, but I didn't know what was wrong with them. When I went through medical school, however many years that was ago ME/CFS, well even named that then. It was called Chronic Fatigue Syndrome. And it was eyes roll you know, patients dismissed. I was never taught it was a real thing. And then I would see patients that probably had CFS. And again, I was sympathetic and I would do all the traditional things. Lemme check your thyroid, you know, all the things that you can do for fatigue. Couldn't find anything. And I had no idea what to do for them. And POTS wasn't even named when I went through medical school. So so anyway, I kind of went off on a tangent here. I was a very traditional by the book, you know, if it was in the book and it said to do it this way, that's why I did it. I didn't do anything off book, which now is completely different. You know, you have to think outside the box when you're taking care of patients with long COVID, ME/CFS and POTS. [00:04:05] Jill Brook: And so when you're a traditional doctor, do most patients come to you with just like one problem for that day? [00:04:12] Dr. Melanie Hoppers: No, I mean, not in our area. You know, we had the triad of diabetes, hypertension, hypercholesterolemia, heart disease, some kidney disease. In West Tennessee, that's our thing. And that's what I saw. It's pretty traditional internal medicine practice, you know, older patients, overweight, that kind of thing. I have a completely different practice now. [00:04:30] Jill Brook: Wow. Okay. So can you tell us what happened to introduce you to the world of the complex chronic illness? [00:04:37] Dr. Melanie Hoppers: Well a little bug called Mono. My daughter her name is Sarah. She is aware that I talk about her. She was 10 years old and she developed mono and Sarah just never got better. Let me give you a little background. I'm a pediatrician also, and when she developed mono, she did what I expect with mono. She was tired. Very, very tired. And you know, I would see patients with mono. You know, it could go anywhere. I'd see patients that were still tired after a year, but usually they resolved and everything was fine. So, you know, the first year I'm just like, huh, Sarah's awfully tired, but she's gonna get better. Then it went past that and so, you know, we do the workup. Does she have a thyroid problem? Does she have an autoimmune disorder? What else is going on? Nope. Check the mono again. Oh look, her mono titers are still high. Okay. Maybe she got mono again. She would have the good days and the bad days and bless her heart, she would come to me and say, Hey, you know, mom, I don't feel good. I'm dizzy. Well, we all get dizzy sometimes. I didn't really think anything of it. Fast forward another year or two. At this point I'm getting very concerned. I've taken her to A couple of facilities in our area, you know, bigger name places, and they had no idea what was wrong with her. Places that should know what was wrong with her. At that point, let me just tell you, POTS was not on my radar. I knew POTS existed. I didn't know anything beyond that. That was it. And I had at least figured out that Sarah probably had Myalgic encephalitis. And so, I went to one of the bigger names around here and I think she has that. They did not even blink. there was not any, oh, well maybe that's it. You know, nothing. There was just no more talk of it. Anyway, I'll fast forward to one of the many middle of the night Google sessions I had where I was trying to figure out what was wrong and what we could do, and I found an incredible place online called the Bateman Horn Center. Have you ever heard of them? [00:06:35] Jill Brook: I'm hearing about it now because of the long COVID patients finding help there, I believe. [00:06:39] Dr. Melanie Hoppers: Oh, I have a picture in my mind of who they are to me. I can see myself in the middle of a black ocean. And I'm drowning and I have my hand up and they're reaching for me. That's what they did for me. I emailed Dr. Lucinda Bateman. I didn't know her. She didn't know me. How many people email her, you know, and, and don't y'all all email her? But I emailed her and she was so gracious. I am a physician, so she answered me. And she gave me some advice and then actually did a zoom with my daughter and gave me some kind of guidance on what I could do, cuz I'm here, she's in Utah, you know. And we had a great primary care physician who was very willing to do all the things. And that's when we did the lean test, which is where I heard about a lean test was through Dr. Sandy Bateman. And I did the lean test and her heart rate was around, you know, 60 supine. And then at the worst point of her lean test, her blood pressure was 80 over 60 and her heart rate was around 180. [00:07:41] Jill Brook: Whoa! [00:07:42] Dr. Melanie Hoppers: I had no idea. I had no idea my daughter was doing this. I'm a physician and I didn't know. That's pretty sobering. So anyway keep going forward. Dr. Bateman, who was so gracious, she also has helped me in so many ways to learn and. Everything was great, but I kept saying, I need more. I need more. In the long run, I ended up going to her clinic and they allowed me to shadow because one of the mission statements they have is that they are helping people with POTS, long COVID, et cetera, but they also wanna teach physicians so that they're multiplied. And so that's what I did is I went there. And I've never stopped trying to learn. Every day, I'm like a medical student. I read something, I listen to your POTScast every day. I send my patients to it, by the way, because I tell them you need to hear something positive. And every single episode I have learned something. And so it may be something simple like there are flavored salts. I learned that one of the first ones and, you know, all these different things. And some of them are little tips and tricks that, you know, are great. And I send my patient to it all the time. But anyway, I'm constantly trying to learn. But Dr. Bateman and Dr. Yellman and all of the people at that clinic. I've never encountered a clinic like that. I came back and have based my clinic on them, and one of the things they do is their initial visit. And I hope they don't mind me talking about all of their stuff. I'm just telling everything. But they spend about two hours with each patient at the initial visit. So that's what I do. When you have POTS, as you know, there are so many comorbidities. You can't just spend 15 minutes and figure out what's going on with the patient. So that's how my practice has evolved. [00:09:35] Jill Brook: No, that's fantastic. Well, we're honored that you send people to the POTScast and thrilled to know that you are using your experience to not just help your own daughter, but to help everybody around you. That is exciting. And we are excited for the Bateman Horn Center and the good work they're doing to spread the word. So thanks for that. But you know, what I'm thinking here is that we have interviewed a number of moms who have worked so tirelessly and so hard to help their kids, but I think you're the first one we've spoken to who had the MD and that was one of your superpowers that you were able to leverage and make that mean so much. So part of your experience then, it sounds like you were really combining the mother role with the physician role. And turning that into a superpower, but what was it like during that whole time of diagnosis and searching for answers to be on the patient side of the healthcare system? [00:10:33] Dr. Melanie Hoppers: It was horrible. And so eye-opening. So eye-opening. At the same time, let me say this, I had my parents and my in-laws were getting old and I was taking care of them, so I was also seeing it from that side as well. There's so many problems and it's hard to find solutions. But it was just so discouraging. And here's the thing that really bothered me. I don't use the doctor card. I'm not real big on, you know, doing that kind of thing, but I would at least let the providers know I'm a physician. And they treated me, I'm sure better than they would someone who is not a physician. That's pretty terrifying. I told a neurologist, my daughter I believe has myalgic encephalitis and again, I did not have any clue she had POTS. No clue. So I didn't know to speak of that, but I told them that, and in the note it says Mother thinks child has myalgic encephalitis, but there was no more mention of it. And, it's a neurological condition, and it was just so deflating every time we would leave. We would travel to go somewhere, which for Sarah, who is a very sick young lady, it was very, very hard for her to do that. And it might involve a crash for a week because we went to this facility and it was just all for naught, it was just a waste of time. And we also went to cardiology. At that point we had done the lean test and we said she actually technically has orthostatic intolerance rather than POTS because she also lowers her blood pressure. But anyway, to me semantics. But told them and there was no E K G, there was no echo, there was no tilt table test, there was no testing whatsoever. There was simply advice to not drink caffeine. The end of story. Every time we would leave, I just remember feeling so terrible for her and we would drive home in silence because she was just so deflated. And again, I can't imagine how dismissive and condescending someone would be. If they were that way To me, how are they to other people who maybe don't know how to verbalize what they're feeling. I just can't imagine. I'm trying to navigate the healthcare system. That's a job in and of itself. [00:12:54] Jill Brook: Right, right. And I'm assuming you already kind of knew the ins and outs of all of that stuff and insurance authorizations and referrals. [00:13:03] Dr. Melanie Hoppers: Right? Exactly. And I have someone who is at my clinic who can do that for me. Hey, Kim, do you mind hitting them up for a referral? No problem. It's taken care of. And even then, it takes a few days. Not to get in, it takes longer to get in, but you have to wait for a phone call back. I finally did this. I have an email for my patients. All of my patients can email me. If you have a problem, email me. Now, I may take the email and hand it off to my nurse and say, please take care of this. Please call them back or whatever. But I don't have to worry that when they phone in, that the phone call gets back to us, because sometimes it doesn't. If we're not there that day, where does the phone call go? yes, it can be on a voicemail, but same things get overlooked. So I can't imagine being on the other end with no power. [00:13:46] Jill Brook: Wow, so I'm curious to hear a little bit more about that, what you were thinking while you were on the patient side about what you would do differently as a physician, if anything. And I'm guessing you didn't let your patients email you before all this, did you or... [00:14:03] Dr. Melanie Hoppers: no, it never occurred to me. It never occurred to me. No. Mm-hmm. And the other thing I tell my patient is please update me every two to three weeks. I want to know how you are doing because when you have POTS, I add a medication. Well, first of all, I Dr. Bateman taught me this. Everything is topsy-turvy. All these years I've given people propranolol for hypertension, right? Or for migraines or for whatever. I give a typical dose. No problem. Very rarely have I had side effects, except maybe it makes them tired. I give it to a patient with POTS, oh my goodness. I no longer start at that same dose. I start at a very lower dose and I give it for a little while. If they tolerate it and there's no hypotension, no hypoglycemia, then we slowly go up. But I don't wanna wait for two months till their next appointment. So if they email me in two or three weeks, yes, I'm tolerating this dose. Okay. Okay, great. Let's go on up and we'll titrate and do things like that along the way. Now I understand. Not everyone can do this. Not all physicians can do that, but I'm on a mission. If nothing else, I want to be a, a very good provider for people in our area with POTS and all of these other diseases, and give them what they deserve. We may not live in Salt Lake City, Utah, or wherever other great ME doctors and POTS doctors are, but at least here in rural Tennessee, you can have something that's good. So I'm learning from my patients is what I'm getting at. I'm learning from them. As well as from all these great people that are, that are on your show and that I follow, like I listened to Dr. Afrin the other day. I listened to episode 40. You know, it was really great. [00:15:43] Jill Brook: Oh good. Well that's amazing. And you know what it reminds me of? I mean, it makes me so happy to know that there's a little pocket of Tennessee where people can get wonderful, wonderful care. And in my POTS journey, you know, I had a 17 year diagnostic delay where I pretty much saw every doctor in, you know, Southern California. And then because I was so heat intolerant, I ended up moving further north and further north until I ended up in Alaska. And what I discovered in Alaska, Was the best medical care ever for my POTS. Not because I found somebody who even knew what POTS was or a mast cell or any of that stuff, but because like you, she cared and she thought of me as a person instead of just another number. And I almost have to laugh like Southern California, I'm sure has so many brilliant physicians, but I think they're also busy, that they have, at least in my experience, largely lost the ability to see each person as a unique person. Cuz there's just too many people all the time in their office at the parking lot everywhere. Too many people on the freeway. And I would, any day of the week take a person who cares and takes time over a person who is a specialist. And shout out to my saving doctor, Dr. Montano in Alaska. Because I think that she had a lot in common with you where she was a person on a mission. And I think ... [00:17:14] Dr. Melanie Hoppers: That's even more awesome because she didn't have a daughter that was sick that she was concerned about. She was concerned about you, her patient. That's beautiful. I love that. I love that. I mean, cuz it's hard when people come in and there's so much overwhelming information, just so many things that you need to read about and learn about. And we just get kind of stuck in a rut, I think. I don't understand what's going on with POTS and MCAS and ME/CFS where providers are so, Reticent to believe. I tell everyone about Sarah because the more people that know about these illnesses, the more recognition, the more you know when they have someone come in, they'll know about it and I tell them, and I frequently see this look in their eye. And they'll cross their arms and they'll kind of turn to the side a little bit and I can just see their disengagement when I start telling them how sick she is. They don't believe me. But my daughter was 10 years old when she got sick. She didn't ask to miss out on prom and high school and all of the things. You know, she wants to do all of that, but she is unable. And I don't understand the disconnect. I really don't, I don't know if it's so horrible that they just think if I believe that it's real, I'll have to imagine that someone's that sick. I don't know. But we don't do that with cancer. We don't do it with other diseases. So I don't, I don't understand it. [00:18:43] Jill Brook: Well, I do wonder sometimes we are so blessed in the POTS and chronic illness community to have some leaders who are the kind of doctor who, like you, they said they're open to learning more and they learn from their patients and they listen. But a lot of people seem like they have kind of almost decided apriori that they're not gonna listen. And I wonder what that is. Is that a personality trait? Is it something that some medical schools teach, but other medical schools don't? [00:19:13] Dr. Melanie Hoppers: I don't know. I think it may just be the person, I think it may be the person. I don't know, because there are some people that I really admire and that I think are good physicians, but I can tell that they think I exaggerate. I can just tell, you know, Sarah she's, she's improved, but for a while she would have sometimes two to three days in the bed asleep. I mean, she would get up to the bathroom and she would sleep, maybe eat once that was it. I mean, days at a time, she's much improved. But when I tell people that they think there's no way. There's just no way. And these are people that like I said, I admire. [00:19:56] Jill Brook: So can I ask just how is Sarah doing and how long ago did all this happen? Like how old is she now and where's she at? [00:20:04] Dr. Melanie Hoppers: Sarah is 18 and she's kind of in a little bit of slump right now. Her brother came to visit and so she's not quite her best. She now typically can be awake. Her days and nights of course, get confused like so many peoples do. I was thinking the other day, she probably has about 15 days a month where she is probably awake for eight hours. A lot of that's sitting and not doing a lot of walking or going around. But the rest of the month, probably four to six. She'll occasionally drive to McDonald's, which an our town is only five minutes away. Five minutes there and back. She can drive and do that. She had about a year where she didn't do any schooling at all, but she's back doing some schooling. She can do an hour or two a day, about three days a week. [00:20:47] Jill Brook: And I think what that is showing me, it's just showing once again that some patients, I'm sure that you have tried everything and some patients, there's a ceiling on how much they improve, even when they've tried every known POTS strategy and... [00:21:05] Dr. Melanie Hoppers: we've tried a lot. We're current anyway. We've currently tried a new medication and we have a fabulous doctor guess where they're from? And he's always got something new, he's great. He's just great and he's the one that has gotten her to this point. [00:21:22] Jill Brook: Oh, good. Good. Well shout out to Sarah. We wish you well, Sarah. So do you have any advice for patients who... [00:21:31] Dr. Melanie Hoppers: this is the question that I've really thought about a lot. And it's hard because really and truly most physicians can't spend two hours a visit. You just can't, you'd go out of business and then you couldn't see anyone. So you can't do that. I think first I would find someone, I mean, if you know someone who's an expert at POTS, great. Find someone who's an expert at POTS. But if you don't have that in your area, or you've been to the expert and you didn't feel like you got what you needed, Find someone you know who loves their doctor, who's in internal medicine, family practice, whatever. But find somebody you know that loves their doctor. And cuz first, like you said, you want someone who cares. You want someone who's open, someone who will listen to you. And then when you go with POTS, I mean, my gosh, all of the things that can happen from POTS, you know, your GI issues, the headaches that can occur, all the different things that can occur. If you go in and you say, I have 20 problems and you wanna address all 20 problems, well, that doctor is gonna get really overwhelmed and just decompensate. And they're gonna get real dismissive and they're gonna get their hand on the door and try to get out the door because they're afraid they're gonna get stuck. At this point are we saying, do you know you have POTS or do you just think you have POTS or whatever, depends on what your situation is. But let's say you have POTS and you know that because for whatever reason, and you come in and you think you have that, but you don't have a provider that's helping you with it, then just come in and start with that. Like I said, it's so wrong that we have to tell the patient to do all these things to make the doctor feel better. You know, we're trying to make the doctor feel more comfortable, so he'll treat you right, or she will treat you right. Well, that's horrible, but it's true. So I'm trying to tell you things that might make a visit more successful. Go in and don't overwhelm them with too many things. Start with maybe your three biggest issues and discuss that and then ask, could I be seen maybe in a couple of months, and let's go over some more issues that I have. Because honestly, when I have a POTS patient, I've also learned, cuz I get real excited and I wanna just get everything. I wanna fix it all right then. And I've learned you absolutely cannot do that. You know, you cannot start three different medicines at one time. Something bad will happen. Cause they probably have MCAS and then they're gonna react to the medicine. So no, no, no. We do small things a little bit at a time. So just tell 'em a few things and kind of get that doctor's trust and also try to do what they say, not if it's detrimental to you, but if they ask you to try breathing exercises, try the breathing exercises. Let them know how it went. Did it help, did it not help? You know, all the things that you might think won't but give it a try. Now if he says to exercise 30 minutes, they don't do that. that's okay. You're relieved of that duty. Because they'll probably tell you that at some point. I'm a firm believer in exercise, but not for my POTS patients. At least not in the traditional manner. But you're gaining the physician's trust that you, and again, I hate to say this, but there's always that patient in your list who you know is going to take more time than you have allotted. There's always that one. And every time they come in, and you may love them, but you know, oh boy, when after that, I'm gonna be late for everybody else. So don't be that one. You know, at least not at first. Kind of gain their trust that you'll listen, you know blah, blah, blah. And again, I hope I haven't offended anybody by saying any of that. And if you get there and you do all of that and your doctor's a jerk, hit the door, you know, find somebody else. And now you can find so much stuff on the internet and kind of read what people think and say, and there's just not enough POTS doctors out there ... you're not gonna find one necessarily on every street corner that's gonna be good. But like you, if you find someone who'll do some reading then you might get at least an advocate for you. [00:25:13] Jill Brook: Right. Right. And I really appreciate you just being straight with people cuz people need to know what the deal is. What I hear you saying is that there's a certain system within which doctors need to operate and they cannot give you unlimited time. And so to be a good patient and to get a good working relationship, you need to show that you're gonna be good to work with. And part of that is respecting their time. Part of that is not overwhelming them and kind of take the long view that this is a long relationship here and we're just gonna start making it good. [00:25:44] Dr. Melanie Hoppers: Right, right, right. right. And you may just have to go in more often. we're delicate creatures. Okay. We have big egos and we're delicate flowers, so, [00:25:52] Jill Brook: Okay. That's really helpful. I so appreciate that. Any other advice that you would give patients? [00:25:58] Dr. Melanie Hoppers: Read, you know, read about your illness. Again, seriously just listen to this podcast and go back and like when you hear something, like when you hear Dr. Larry Afrin, you can go and find all sorts of things that he's done outside of this and you can read all kinds of things, but just be informed. Be informed. Know what medicine you take because when you go into the doctor, it's great if you have what medicine you're on, what you've tried before, things like that. I guess that's the big thing. Just be informed and Have a little patience with us. We're absolutely not perfect, but like I said, find somebody that you think is kind and will listen and they'll get in your corner. It may take a couple of visits, but I, I think that you can probably find someone who will. [00:26:43] Jill Brook: Mm-hmm. That's great. So thinking a little bit more about sort of like there's the world of doctors and the world of patients, and you have seen it from both sides. What do you wish more doctors understood about being a patient and what do you wish more patients understood about being a doctor. [00:27:05] Dr. Melanie Hoppers: I wish that doctors understood the impact they have on people. That 15 minute encounter can absolutely just slay someone, if it goes wrong. And someone may have waited to see you for three months and then you come in and you dismiss them and how devastating that is and how unfair with this illness, one devastation can equal a month in the bed. It's just so wrong. So that's what I wish doctors knew. What I wish patients knew is that physicians are absolutely human. I mean, we are so human. It's just incredible how human we are. We get tired. We get frustrated. I think one thing about physicians is that the majority go into it because we wanna help people. And I'm gonna tell you the worst thing is when you can't help someone. And I have gone outside the room a couple of times and sat out there while we're getting labs or EKGs or something, and I'm sitting there thinking, I don't have a fix. And I just think occasionally I'll get this little brief moment of I just wanna run away because I can't fix this person. And then I'll sit there and think, okay, no one has figured out how to fix POTS since 1993. And I'm probably not gonna figure it out today. And so get your butt up. Pull your pants up, your bootstraps up, whatever, and go back to work and do what you can do. That's I think where some physicians are coming from. [00:28:32] Jill Brook: That's great. I so appreciate your straight talk with us and your insights and I wish I lived closer to Tennessee. Boy, I would. I would run to be your patient. [00:28:41] Dr. Melanie Hoppers: I would love to talk more to you. I have so many questions. [00:28:44] Jill Brook: But I mean, boy, thank you for your time today and your ongoing work to help complex patients, and it has just been so refreshing to hear from somebody with all of your experience and your brain power. So thank you so much and all the best to you and your daughter. [00:29:01] Dr. Melanie Hoppers: Thank you so much. [00:29:02] Jill Brook: Okay, listeners, that's all for now. We hope you enjoyed this episode. We'll be back with more next week. But in the meantime, thank you for listening. Remember, you're not alone, and please join us again soon.

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