Hello everyone who's joining we'll be starting in just a couple of minutes putting yourself on mute that would be fantastic and we'll get started in just a couple of minutes. Allison I'm not a baker but I watch too much Food Network shows so I end up trying to make things but my daughter and I made a very successful Victoria sandwich cake just a few weeks ago we were very happy with how it turned out. Nice nice tomorrow is national chocolate pecan pie day so I have that on I have everything if you were looking behind me behind this camera you would see all the ingredients for a pecan pie that I've already put out in place preparation to make tomorrow morning. Fantastic but yeah it's also I think there's also a Victoria sponge it takes some work to do a Victoria sponge so no but it's fun it's fun it's very doable but it's fun yes yeah yeah it's doable but you gotta pay attention to the to the steps that's right. To everybody who's joining we'll be starting in just a moment so please as you join put yourself on mute and we'll get started in just a moment. So Thank you for watching. All right, well, we're going to get started to make sure that we're respectful of everyone's time. Thank you all very much for attending. If everyone could please be sure you're on mute, that would be fantastic. Thank you. Welcome. I'm Bruce Hammond, and I serve as HMDCB's Executive Director, and I'm pleased to be with you today to introduce our first webinar in our For HMDCs, By HMDCs series that we've put together for you. We definitely appreciate your interest in attending this session. We actually had more than 130 registrants, which is more than 10% of our certificate base, which is fantastic. So we're really thrilled with that number as we launch this opportunity for you all to connect around the credential. So before we get to the session, I'd like to provide you with just a couple of updates about HMDCB, and then I'll introduce our speakers and get us going for today. First, I hope you can tell that we've been working hard to help you as certificants have more opportunities to connect around the HMDC credential this year. We've launched not only this webinar series, but also our coffee chats, which have provided opportunities for you all as certificants to connect with one another about the issues you're dealing with in your practice and help one another through those issues. The next coffee chat we're holding will take place on September 16th at noon Eastern time, and you can register for that on our website at hmdcb.org slash events. I also wanted to remind you about the next two sessions in this webinar series. Session number two is going to take place on Monday, October 25th at 3pm Eastern time and will feature a panel of several HMDCs who serve in leadership capacities within organizations in the hospice and palliative care field, as well as adjacent fields. So we'll have leaders from AHPM, NHPCO, AMDA, and the American Academy of Family Physicians, all of whom are HMDCs, and our moderator will be as a leader in the National PACE Association. So several organizations around hospice and palliative care. It's going to be a great session. We hope you can join us. And session three is going to take place, as you can see on the screen, on Thursday, December 16th at noon, 11am Central time, and will feature three presenters discussing the changing role of hospice medical directors. It is a follow-up to a session that took place at the 2021 Annual Assembly of Hospice and Palliative Care, and you can always learn more about these and register for these sessions by visiting us at hmdcb.org slash webinars. We're also busy looking at our continuing certification program to determine if there are additional tweaks that are necessary for that. I'd really encourage you to participate in a survey that is now out, and you'll be receiving a reminder about on Monday of next week. Hopefully you'll share your opinion with us. The deadline to fill that out is on August 30th, so we hope you'll take a moment to do that. And finally, a quick plug for an event taking place next Friday, August 27th, called the Hospice Physician Compliance Conference, a day-long virtual event which is created by our friends at Weatherbee Resources. This session is eight hours. We'll provide eight hours of CME for your attendance that you can use for your HMDCB continuing certification requirements as well as others. And HMDCs receive a 15% discount on the cost of that event. So if you're interested in attending, you can head to our website at hmdcb.org, and on the homepage under Upcoming Events, you can click on the event to learn more. You can also connect with us at info at hmdcb.org or at gparisi at hmdcb.org, which is on your screen to get that 15% discount code for that event. So again, very, very excited about all the things that are happening with HMDCB currently, and again, really excited that you're with us here at today's event. Now I'd like to take a moment to thank our series sponsors for this webinar series, Kindred at Home and Bluegrass Care Navigators. We really appreciate their investment in helping make this series free for you all as certificants. Just thank you very much to them and to their leaders for taking the initiative to invest in this webinar series. So now without further ado, I'd like to introduce our speakers in the session titled The Physician as the Patient, which features three amazing HMDCs who have in the not too distant past been the patient themselves while dealing with health issues. They're here today to talk a little bit about that experience and how it helped them in their work as physicians. So our speakers today are Allison Jordan, who is a hospice and palliative care physician in St. Louis, Missouri, Tommy Farrell, who's a hospice and palliative care physician in Abilene, Texas, and who is HMDCB's current president, and John Mulder, who is a hospice and palliative care physician in Spring Lake, Michigan. So once again, thank you all for participating, and I'm going to turn it over to Allison to take it away. Allison, I think you're on mute still. I was. Well, thank you, Bruce, and thank you to everyone who has joined us today to talk about this. It's really an honor for me, and I'm so humbled and honored that I was asked to participate in this panel today. So just a little bit about me and kind of my journey. I was diagnosed with advanced breast cancer in 2018. I had previously been just been recruited to St. Louis, and in 2018, I just started to feel really bad. It sounds cliche, but I felt like I was just getting really sick, and like I was just kind of falling apart, and I thought that, well, you're a brand new attending and a new health system at a hospital. You're doing all of this work. You're doing grand rounds. You're presenting at AHPM. You know, you're pulling 14-hour days. You know, you're going to feel tired for a reason, but I just didn't feel right, and I kept getting the flu about every three to four months, like almost predictable, and I thought, something's just not right, and I thought, well, maybe I should just go and talk to someone, you know, so I found another doctor who's trained in internal medicine and psychiatry like myself, and I started talking to her, and she said, something's not right. She's like, we can talk, and she's like, but I think you really need to go get checked out. Couldn't get into a PCP, ended up getting into an OBGYN. I described my symptoms to her, and she said, you just bought yourself a diagnostic mammogram, and I said, I figure as much, and so went to the breast center here in St. Louis, and I could immediately tell that something was wrong because they started taking pictures. They'd have me go out and wait, and then the technician would say, we need you to come back and take more pictures, and then they'd have me back out in the waiting room, and they'd keep calling me back in to say we need more pictures, and I happened to take a look up at the monitor, you know, being nosy, and looking behind the radiology technician, and I saw the images, and I said, something is seriously wrong, and then that's when they brought in the radiologist and said, we know, we need to do biopsies, we're really concerned, and I said, well, what are you worried about? You know, classic palliative care, you know, what worries you? And the radiologist said, I think you have cancer, and I was like, okay, great. So, you know, we did the test, we did the biopsies, and I actually found out my diagnosis when I was in the room with a patient. So I had my phone ringing, I stepped out of the room, and it was the OBGYN calling me freaking out because I don't know how many times she's had to give a person a diagnosis that you have cancer, but I was literally in the middle of a palliative care consult when I got the news in the hospital. And so my journey went from there. I'm happy to say that right now, with my recent imaging, that everything looks really good, I've gone through my treatment, so I'm really grateful for that, but it has definitely changed, you know, my practice and how I approach things, having gone through this over the last couple of years. So I will stop there. I'm happy to answer questions as we, you know, have this hour together about my experience and what it's been like for me. So thank you all. I'm Tommy Farrell, as introduced. I, on August 1st of 2020, I ran 20 miles, I was in a training program for some running I was doing. So I ran 20 miles on August 1st last year. Then on August 15th, I was supposed to run 16 miles and I only got 12 of them done before I had to walk the rest of the way home and then sleep all day. And then on August 20th, so that would just be a year ago, minus a day, I walked up two flights of stairs at the hospital and was short of breath. So I knew something was wrong. So I had my buddy check some labs on me and then he called me that night to tell me, I said, are you calling me for some abnormal labs? And in almost a joking manner, he says, I am. And so then I immediately felt bad for him that he was having to do that and let him off the hook and called my PCP and the next morning, as I visited with a really good friend, I do a, I do a, one of my palliative care task activities is I do a symptom management clinic at our cancer center every Wednesday afternoon. So I've got them very, very close to the cancer doctors there because we're all part of the same team. And I felt, I remember how bad I felt for my friend as he was having to sit there and try to say to me what I had and how hard it was. And I had to ask him, so what do you think I have? And he told me, I think you have leukemia. And he was correct. And so two days later, I was shipped off to a Dallas Baylor hospital who took care of me really well as I was in a DIC. And I started getting, my treatments have been arsenic, which sounds really badass. So it's kind of cool to say you're getting arsenic and then high doses of vitamin A. And after surviving all the side effects of that for eight months, I have been in remission since June. And there's a 98% chance that that remission will just become, go on to become a cure here in a few years. So I'm doing quite well with that. And that's my story as I pass it on to John. Thanks Tommy and Allison. And thanks again, Bruce and Gina for hosting this and allowing us to tell our stories. I'm John Mulder. I got my first hospice gig back in 1984. So I've been doing this business for a long time. And my story was that it was September 18th of 2014. I was playing golf on a particularly hot and humid North Nebraska day. And I got to about the 13th hole and realized I really couldn't go on. I just blamed on the heat, the humidity, but I just sort of collapsed and, you know, kind of recovered after a little while. I didn't think too much about it. A couple of months later, I went into my doc, family doc, because of a knee issue. And is there anything else I should know about? And I said, well, you know, I've been having problems walking upstairs and stuff. I really think that I'm just overweight and out of shape. And he looked at me and says, you are. But let's take a look at what's going on with that, you know, with that breathing. And he listened, didn't like what he heard, got an x-ray, didn't like what he saw and ordered a high-res CT scan. And I will tell you that it's pretty daunting, you know, as physicians, you know, one way or another, we get copies of our reports, of course. And when you see end stage next to, you know, your diagnosis, which for me was idiopathic pulmonary fibrosis, was pretty daunting. And you know, they told me maybe three years and everyone that I ever took care with IPF in my practice was dead in a year and a half. And so that's what we were prepared for. And that's what we sort of, you know, batten down the hatches, prepared for my funeral. And you know, it didn't come immediately. It was, you know, I was starting to circle the drain a bit on, you know, through 2015 and early 2016, and it got bad enough. And that was when they first brought up the prospect of transplant, which I thought was intriguing. They said, don't get your hopes up. Most people with IPF don't qualify for transplant. Those that do may not make it to the listing and those who get on the list may not get the transplant. And if you get the transplant, you may not survive. So that's really what they wanted me to understand. So we, you know, we went through all the steps in terms of, you know, oxygen dependency and kind of really tapering back pretty much everything that I knew and loved, you know, and so that was a really particularly daunting time. I did, you know, finally make it to where I got a call on September, I'm sorry, April 12th of 2017 that, you know, Mr. Mulder, would you be interested in a new lung? And I said, yeah, let's do this. And so I've had an absolutely delightfully uncomplicated post-operative course. I've had no side effects from the medications of which I take a, I guess for lack of a better term, a shitload. And but I tolerate it well. I have blood tests all the time and just to kind of monitor all that stuff, x-rays and stuff. And so the monitoring is a constant reminder that I'm not normal, but I certainly feel well and I certainly feel blessed. One of the interesting things was, and I don't know if it was because the surgeon at the first meeting knew what I did for a living, but he said, I just want you to understand the transplant, if this goes through for you is considered a palliative procedure. And I sort of smiled and I said, that's interesting. I really have never seen anybody pay $1.2 million for a palliative procedure before, but you can call it what you want as long as I get one. And he said, you were trading one disease for another. And that's really the bottom line. We're not curing you. You're not going to live forever, obviously. And we're trading the disease of IPF for the disease of being immunocompromised for the rest of your life. And at some point in time, one of two things is going to probably take you out unless you get hit by a bus. You're either going to get an infection that your body is not capable of withstanding, or you're going to reject that lung. And average life expectancy is 6.8 years in their program. And so that's kind of what I was left with. And I sort of argued with my team who, after transplant, said, you are now completely and totally and permanently disabled. I said, not good enough. And so we had a lot of negotiation in terms of what I could do and what they wouldn't let me do. But bottom line is I've been able to get back to doing some meaningful work. They just said, don't hang out with sick patients. And I said, that's kind of what I do for a living. So anyway, so that's my story. And it kind of brings us here. I've had an opportunity to share the story with folks in terms of really what it is like to look at the reality of your mortality and not anticipate that you're going to survive many more months, to now getting a new lease on life, feeling better than I had before, but knowing that life is still short for me. So one of the things we wanted to do, Tommy and Allison and I, just to kind of share just some really brief reflections on what it means to be in this role and how it has impacted us as palliative practitioners. One of the things that was apparently more difficult for me, as I'm now being told by others, I thought it was perfectly rational at the time to try to make sure that my physicians and my team and the residents knew how to treat pain appropriately. But it was the surgeon at one point in time came and sat on my bed and I said, I need to ask you to stop trying to manage your care. And I said, I didn't perceive myself as managing anything. I just saw some teaching opportunities for your health staff here. And so there's been this kind of struggle, push and pull, trying to leverage what I know about disease and symptom management into my own realm. And that's been a struggle. One of the things we wanted to talk about was the symptom burden that we carry. And for me, the worst was clearly the dyspnea and the coughing, which is something that we as HPM docs face all the time. And it was always perplexing for me as a practitioner to really nail it. Did great at nausea and vomiting, did great at pain, but the breathing issues were kind of challenging. And they were equally challenging for me as a patient. And there again, I was fortunate because I'm in the town that I practice, knowing the pulmonologist and knowing the compounding pharmacist to be able to come up with the types of recipes and nebulized formula that would help with that so that I could at least feel I could function with my family, if not out in society. And so pain was not an issue for me, except post-operatively, which we sort of expect when they cut your chest open. But for me, it was the issue of pain. And I know that Allison and Tommy, you both had some issues with symptoms that were really quite perplexing to you as well. Yeah, I'd say for me, it was interesting. I'm a journaler, so I kept track of my symptoms maybe too well. So I logged 27 different symptoms that I could think as distinct, and I found out how much bowel movements are important to me, because that made my journal like about one out of four entries. But the most interesting part for me on symptoms, pain was not my most distressing. It was present, because I get headaches from the vitamin A, but the most perplexing for me are the ones that didn't have medicines for them. And so I learned that there's a difference between the words fatigue and malaise. I thought they were interchangeable, and then I noticed that on one of my medicines that I was experiencing side effects, it lists fatigue, and then it listed malaise. I now know what the difference is, you know. The malaise was a moment that was very interesting. I went through a few days where it wasn't just tired. I mentally, as well as physically, could not go on and felt like there was nothing that could spur me to keep moving. And that was just extremely distressing. And anorexia was extremely distressing, because I knew what happened to my patients who didn't eat. And I would take a bite of food and not want to take another bite of food. And to have to negotiate each bite of food was a surreal event. And so those three symptoms, the fatigue, the malaise, the anorexia, that I knew there was no treatments for, except getting through the treatments, were very, very interesting. And a thing that I learned from this was just how much I appreciated those people that would just sit and think about that with me. There was a nutritionist I'm extremely grateful for, one of the internal medicine doctors that was running on me I'm extremely grateful for, because they just spent time with me in those symptoms. And we didn't change, well, we ended up changing some medicines to get away from side effects. But it was the fact that we were thinking through, they were the great value to me of having the presence of a person in symptoms that are that distressing. Yes, for me, I can definitely relate to some of the symptoms. And the two or three that really stand out to me was the brain fog after the chemo. And really hard as a palliative care doctor, and I was also still doing hospice when I was going through treatment and not being able to do the calculations for the opioids. And that is what we do, that is what we have trained to do. And when I was in training as a fellow, you didn't pull out an app, you did the math, you showed your work. And I knew those conversions and I could close my eyes and see them burned into my eyelids, the conversions from morphine to Dilaudid to fentanyl, I could do them. And during treatment to be struggling with, okay, I've got to slow down and really check my work because I didn't, it wasn't coming to me as fast on those post-treatment days. And that week after treatment of not really feeling like myself and feeling like a zombie. And the other part too, for me was definitely the GI part, the nausea and trying to find the right regimen of medicines that would work for me, because that is such an indescribable feeling. But now I really appreciate it when people tell me that they're feeling nauseated, because I can really truly understand how miserable that feeling is to not be able to have a bowel movement. It's really important because everything, the chemo just shut my GI system down. And so every other week I was going through this, trying to be proactive to get that stuff out of my system so I could continue to eat and continue to work. So having those kinds of conversations with my team, making those adjustments and learning my body and what was really gonna work for me and I don't need dexamethasone. I just needed hydration and physical activity. So that little bit of things that really stood out for me. So we did have a question come in or two here. So let me just jump in and ask. It looks like John answered one of the questions. One of the questions was the age at the time of your diagnosis. So John, maybe- Yeah, I was 62 at the time of diagnosis. And what I didn't realize, and one of the challenges for me was that, that they had told me that most programs at that point in time, and I realized it was four and a half years ago, five and a half, six and a half when I actually was diagnosed, have a cutoff for transplant at 65. And that's why they had really anticipated that I may not qualify because I may age out of the program before I'm sick enough to actually get it. And one of the things that I also experienced, and I'd be curious, Tommy and Allison, if you had some of this, was that the physicians that cared for me, especially within the transplant realm, there's a real tendency, and we sort of see this, for physicians to want to do something. And there's an abundance of people that felt the need for writing prescriptions and for doing more things. And I remember having to ask them along the line. So help me understand, are you doing this because there's some scientific validation for prescribing this or recommending this course of action? And a lot of this is post-transplant now. Or is it because that's your experience or you just have a hunch? Because I felt that I was sort of having their eyes roll when I would walk in because they knew that I was going to be challenging some of the things they recommended. I swear I've been twice the medicines I would be now if I hadn't challenged that. And even now, when I'm going back, if anyone who's ever had the joy of being on magnesium supplementation, when both Alison and Tommy commented about the importance of bowel habits, and I'm telling you, nothing's good if you can't poop, nothing. But in order to get my magnesium level to somewhere where they felt comfortable with, they have given me very significant amounts of magnesium supplementation. And I can guarantee you, pooping is not an issue, but it keeps me close to the john. But their desire to fix things that I'm not sure need to be fixed and to tweak and to supplement, things that may not need to be supplemented, to follow these algorithms and to feel like they have to do something. And one of the things that I sometimes treat, to teach to the students, is the importance of we as practitioners being, our presence is sometimes more important than our provision. And just being with and being supportive and being present with our patients, I think is such a huge thing. Sometimes that's all I needed. I didn't come to see you because I felt I needed you to write me anything. I just wanted to know you were there for me. Are you gonna speak, Alison? Yeah. Well, I was gonna say, I mean, that's a great segue into kind of what one of the themes that I wanted to just touch on was that communicating with your team and that team alignment. I think that, again, with the work that we do, when I got diagnosed, I had reached out to one of my colleagues in the hospital and I sat in her office and I said, what do I need to do? And she's an oncologist. So she helped me put my amazing team together. And my very first team with my medical oncologist was a goals of care meeting. And I said, this is what's important to me. I have a trip to Belize coming up. This is what we're gonna do. I'm not doing fourth line treatment. Like, if this doesn't work, like, you know, and she was like, whoa, whoa, whoa, whoa, whoa. She was like, you know, but I really wanted to have that kind of open communication and really let her know right from the get-go kind of what my thoughts were, what we wanted to do, you know, let's talk about advanced care planning. And, you know, but I really wanted to have that communication and I wanted them to be honest with me. And also kind of like what John's saying, like, are we doing these things? Are you giving me more because I'm a physician or is this what you would give everybody else? And the other interesting thing too for me was that I had to continue to ask for things because of my knowledge as a physician, trying not to be annoying, but there were things that they weren't necessarily offering me, you know, things like fertility preservation or going to see the nutritionist, or maybe I don't need all these medicines, the Zofran and dexamethasone and, you know, the prepotent or whatever for the nausea, you know, it was just, so they were giving me some things, but the basic stuff that I felt like I really had to ask for, because I know with our patients that that's what they really need. They really need to figure out how to eat. They really need to be worried about, you know, what's going to be their life after cancer. For me, I was diagnosed at age 37. So maybe I would want to have a family one day in the future. So having to advocate for those things to kind of build the team that I knew that I needed, that I've seen my other patients really need that would be otherwise overlooked, like, oh, well, you're a doctor, you don't need to worry about the nutrition or this. I'm like, no, no, no, I still need those things. I still want to know about all of those options for me, or, you know, what's going to be the cost of this? Yes, I have health insurance from the health system, but this is still going to be, you know, we always talk about, you know, the financial toxicity, or maybe we don't talk about it enough, but there were a lot of questions that I felt like I had to advocate to really communicate to my team and to make sure that we're all in alignment and that was something that's really was important for me. And still is, even though, you know, as I continue to talk with my doctors about what's the next steps, what's the plan, what can I anticipate? So Tommy, how has it been for you? Yeah, I'm going to reflect on that and I'm going to kind of grab a few questions along the way that I saw flash on the bottom of the screen about like, wow, was there anything that you thought about that you say, why do I give this to people now that I've experienced it? And someone asked if we get regular checkups, I am a regular checkup guy. In fact, my doctor told me, my primary care doctor had told me the year before that he didn't think he needed to see me until I was 50 to talk about the colonoscopy. So he gave me a two year reprieve, but I got this at 49. So I'm glad he was available when I called him with my labs, but that advocating, you know, one thing that became very, very real for me, I was in the hospital when Chadwick Boseman died and which I kind of consider the pinnacle of what's been going on in the past year with race relations and understanding entitlement. For me, I so understand that at a different level now because I realized how much I was being given because I knew to advocate for myself like Alison's talking about. And I feel so much more empathy for those who don't even know what things they can be asking about. So interesting thing for me on the medicines and this advocating piece is I was resistant. So I, you know, I don't, my team was very open to me giving input inside of an assentive doctor. It was interesting that being a doctor who gives pain medicines all the time, I didn't want to take anything more than Tylenol-3 for my headache at first. I really wanted to take ibuprofen, which ended up working great when I was out of BIC, but at the start, I couldn't have it. And they, and I had to have one of my oncologists say, and I'm sorry for the languages, but he said to me, he said, damn it, Tommy, just take the oxycodone and see how it feels. And it worked. And so I learned, I learned oxycodone's legit. I've learned that a conscious sedation is really legit when you're getting a procedure. I'm really appreciative of conscious sedation and the interventional radiologists. I, my big advocation moment that had to come up for me though, was when a doctor, one of the internal medicine doctors wasn't aligned with the oncology team, with the pain medicine. And he really wanted me to be on Diamox instead for my headaches, instead of the oxycodone that was working fine, the five milligram oxycodone. And so in the midst of that, I got on a medicine that was increasing my anorexia, increasing my, that's the medicine I said they had on the list, fatigue and malaise as the first two symptoms. And I was going through fatigue, malaise, anorexia, and I was withering spiritually. And I had to have this moment where I had to say to this internal medicine doctor and the oncologist, and I had to talk them into being in the room at the same time and saying, can we forego the theoretical risk of respiratory depression because I'm on an antifungal and five milligrams of oxycodone and instead get rid of this Diamox I'm having very, very real symptoms from. How would another patient even know to look up those side effects? How would another patient that didn't have my background know that? And so I had to advocate for myself, refused the Diamox the night before I had this conversation with those doctors and sure enough felt my brain working better. And the dear, dear nurse who wanted to say, well, will you take the, you know, when my headaches were coming back and she said, what's your pain level? And I said, seven out of 10. And she's like, well, we need to get you something. I'm like, no, I'm okay. She said, well, won't you take the Diamox? No, I won't. What will you take? I'll take oxycodone. Well, we don't have that order. Like I understand, and I understand how this sounds. I don't need anything other than oxycodone tonight. And so finally the evening doctor in the middle of the night agreed to give me 2.5 milligrams of oxycodone with a pulse ox on my finger. And I don't know how funny that is and how fun that was to report to the oncologist the next morning. But getting those teams aligned and listening to me and recognizing I was able to do that because I'm a educated doctor. I mean, there's a lot of things I just put into that one little group of statements, but that's a big part of my experience. I remember that the cardiothoracic fellow came in just pre-op and said, anything you're concerned about? And I said, yeah, I actually a little bit worried about post-thoracotomy pain. And they said, you need not worry about that. We're really good at that here. And I reported back to him. And I said, I've taken care of your patients. You're not as good as you think you are. And so I had specifically requested perioperative ketamine infusion. And they said, we've never done that before. And I said, young man, you've got about two hours before you're planning on cutting me open. I suggest you go look up a couple of articles. You're gonna find some surprising stuff there. The fact that you've never tried it before does not mean it's not valid or that it won't work. And I will tell you that they, to my surprise, to my shock actually, when I woke up, I had a ketamine drip running. And they gave me a PCA, which I rarely used. I didn't need it. And when I left the hospital after the thoracotomy, one of the most surprising things to me, they gave me a bottle of five milligram oxys. And I remember telling them, what, you only got 42 in there? What happens when that runs out? And they said, well, use them wisely because you're not gonna get more. And I think you just, you know, I just had a thoracotomy for Pete's sake. And, you know, it turns out that having a lung replaced is a big deal. And he said, just use it wisely. And what I did was I sort of resorted back to some of the pain lectures I did. And that, to me, was kind of surprising that I teach this stuff. And I may not necessarily have been paying attention, but I started using extra string Tylenol on a scheduled basis. And I still have 40 of those 42 oxys left. And so I developed a brand new respect for the power and the effectiveness of extra string Tylenol. And so I make some very strong recommendations to patients now in response to one of the questions in the thread there to use that. I still... So that really solidified that. Someone had asked about my algorithm for dyspnea. And really briefly, because this is a quick one, I start and I do this. This is what I did for myself. And I do this for patients now. Tesla on pearls, but you need 200 milligram pearls. Most people are not aware that it comes in 200s. They just know it comes in 100s, but you do 200s, give them TID, and it's okay to take an extra one or two in the middle of that. If that didn't work, then I went to a hydrocodone containing cough syrup, which for me worked better than morphine. So that was my second step. And then I had compounded, we used a 4% lidocaine solution, and I would nebulize that. And then my fourth stop was using a combination of nebulized morphine and decadron. And I know that their literature doesn't support the use of nebulized morphine, but if you look at those studies that Pooh Pooh, I'll tell you, you'll see some significant methodological flaws, and I can assure you that it works. And sometimes, I tried, and those weren't the only two I tried. I tried all the usual suspect characters in the nebulized world, but that worked great for me. And usually if there was an occasion where the lidocaine didn't help, and I would resort to the morphine deck, but in most circumstances, by the time I got to the nebulized lidocaine, both the coughing and the breathing was much easier. I would say that technically the lidocaine worked better for the coughing jags, it wouldn't break. And the morphine and decadrons worked a little bit better for the breathing, even if I wasn't coughing. So that's sort of at the test salon, the hydrocodone containing, and then the two nebs. And I do those for patients all the time now. And get good success. John's got me beat on the bragging rights on pill counts, because I got my bottle of 30 oxycodone when I left the hospital, five milligrams as well, and I have four left. So that was over eight months. That was over eight months. And I believe in the power of ibuprofen. I was, I died down two SANS containers of ibuprofen during the course of my treatments, but those kept my headaches away. So I like ibuprofen and I also had to ask to not have steroids given to me during my chemo treatments because I decided I'd rather sleep better and eat less and just take more ibuprofen. So I foregoed dexamethasone injections that they were adding to my treatments. Yeah, so I had, there was one period of time a couple of years ago when they were concerned that I was rejecting. They couldn't prove it. In fact, I had two broncs and they biopsied and I didn't reject. But some of my pulmonary function studies were declining and I said, well, that's simply because you left in a bad lung and that's continuing to scar down. But nevertheless, they said, we're gonna treat you as if you're rejecting, which is three daily doses of IV steroids. I forget which one they gave me and what dose, but I remember it was equivalent to about a thousand milligrams of prednisone a day times three days. And if you wanna know about the side effects of prednisone, get blasted like that for three days in a row. I was very, very productive, but I didn't sleep. And it was a very, very interesting three days for me. A couple of days after that to get out of the system. They won't let me take the non-steroidals at all because of my anti-rejection medications or have a tendency to fry my kidneys. And so even those are two of ibuprofen has caused some upsetting numbers there. Alison, another question came in that I thought was interesting, and maybe you've touched on this a bit in one of your answers, or one of your points, but it was what things your colleagues and teammates did that were most helpful for you when you were trying to work while not feeling well? I know you talked briefly about that. Anything else you'd like to share there, or Tommy or John, maybe jumping in and sharing that. I thought that was an interesting question. Yeah, that's a great question. I will say that I was very lucky. I have a very small palliative care team. It was just myself and my chaplain and my social worker. And we were small, but mighty team during my treatment. But I felt that as a palliative care doctor, I have a phrase that's called outliving it. So I wasn't tied, but I'm going to show up to work on my non-treatment days, and we're going to do it. And so I think being honest with the other hospital staff leadership, I think that they gave me a little measure of grace. Still got plenty of consults, very busy hospital. We still had a lot going on, but they knew I couldn't pull those 14 hour days anymore. And I was just going to have to take, I did some teaching, my grand rounds and some one-on-one, and kind of teaching more primary palliative care. And some of them started wanting to wear bracelets that would say, WWJD, what would Jordan do? Because they knew on Wednesdays, she's in the chair. She's going to take Wednesday and Thursday off, and Friday she'll be back. But they also knew that if I wasn't feeling good and you know that the GI system wasn't so great, I'm going to head home early and really listen to my body. So I think that's what my colleagues did. They did the best that they could. They understood that this was a treatment. And I was open and honest about, this is where I'm at every month. I would try to send out my schedule so people would know kind of when to anticipate when I was going to be there, when I was not going to be there. So they wouldn't be thinking, gosh, is there still a palliative program? Is there still stuff going on? And my chaplain would step in and co-pilot family meetings with the ICU. My social worker could help talk with folks about advanced care planning. So the beauty of palliative care is that there's a whole team. And so it wasn't just me. And it gave a chance for my other team members to actually highlight and showcase what they brought. Because the team isn't just me. I am the medical director, but the other people on my team are well-qualified and I poured into them. So they knew how to get people through family meetings or they can't do symptom management. My chaplain is not prescribing opioids or giving nausea med recs, but he can certainly be present. He can certainly sit at the bedside. He can certainly help people if they get stuck in a family meeting. So I hope that answers the question. If not, please let me know. I'm happy to answer questions from the group. Our team, and I work in Grand Rapids and the company that I came to work for in 2006, so 15 years now. When I came on, they asked me if I wanted to be an employee or an independent contractor. And I said, it doesn't matter to me as long as the money's the same. And they say, we'd prefer that you'd be an independent contractor. That kind of works with our model. We just don't know how to take care of doctors as employees. So for the next 10 years, that's what I did, nine years. And then when I got sick, it was really right after the diagnosis that they came to me and they said, we think you ought to become an employee. We can protect you better with whatever you're going to be going through. And I thought that was a really generous thing for them to do because when I did get sick enough to have to get off of work, that was probably about five, six months prior to transplant and then for the entire six, seven months, eight months beyond transplant, I worked very, very little and I never missed a paycheck. And they were very creative in sending me a note. Can you provide some commentary on this or can you consult on this? And they considered that part of my job. And so that's how they justified just keeping me on the payroll. And my clinical responsibilities, it didn't happen all at once. And so as I found that my strength and my ability to function was waning, they would bring on people to supplement that. The people that I had already working in the organization were sacrificial in giving up their time and changing their level of responsibility to accommodate what I could no longer do. And that was both gratifying and very humbling as an older guy who was somewhat type A and first one to work and then the last one to turn off the lights to claim some element of frailty and need for others to help. That was a really, really tough nut for me to crack. And of course it was gratifying. And I got over the embarrassment of having to rely on others relatively quickly. But that for me was a very, very difficult thing to reconcile. My team was quite wonderful too. And I have nurse practitioners both on the hospice side and the palliative side that did a lot and tried to protect me. I think I learned very quickly for myself was, I actually had calculated how much time I was gonna potentially need to take off, but they gave me a laptop that I could use in the infusion center. And so I did a lot of meetings and a lot of work there in the infusion center. And then I ended up working more than I thought. And a big part of that for me is I learned a lesson that was important to me. I would not want to put this on anyone else's illness life that they had to live. But I realized I can feel sick on my couch or I can feel sick doing something I love doing. And so I was going to work. And kind of as Alison said, people knew I wasn't feeling great and I'd have to stop and sit down a lot more. I still tried to take at least one flight of stairs and then I'd stop and get on the elevator. But I'd rather be at work feeling sick and doing something meaningful than sitting around at home feeling sick, doing nothing that felt meaningful. So I was getting enough rest. I kept working through a lot of my sickness. And I'm gonna segue this a little bit into a thought that we wanted to make sure we highlighted too as a group. I learned a new phrase from Alison actually in our preparations before I even met her on an email that became very important. Cause when we were trying to prepare this, I just got into my remission phase. And what was surprising for me is I actually did worse emotionally in that first six weeks and remission than I did during the treatments because I was ready and I know I'm supposed to rebuild and I haven't exercised for eight months and all my body's saturated with some levels of arsenic levels. But I just wanted to feel better sooner and I wasn't feeling better sooner. And I wanted to be more grateful. And this was an interesting feature. I wasn't feeling grateful. And I was like, you know, I'd be grateful I just survived cancer. And so I was going through this really big funk. And then Alison said in an email that she wanted to make sure we highlighted about the support we did in the after period. And just her saying that phrase lit something inside me to realize, oh. And so I had to learn a new phrase just like my old phrase had been, I'd rather be sick working than sick sitting at home. It became, I don't have to feel well to be doing well. I'm gonna focus on how I'm doing instead of how I feel emotionally and spiritually. And eventually now I'm feeling better emotionally and spiritually and physically. But that was an important lesson I learned from Alison. And there was a question put in the chat line about how do you approach people differently? And one of them for certain is when I remember sharing this with a colleague and he's like, oh, I was wondering why these people aren't more happy when I have them alive at the end of a surgery. Maybe I just need to give them a little bit more leeway that it's okay to not feel grateful yet when they're right at past their illness. I think I'm giving people a lot more grace on what they're experiencing and especially paying way more attention for the nuances of things they're experiencing that I know that they don't have a doctor's degree to articulate. So that's all I'm gonna say a little bit about that and pass it back to my colleagues on more comments on that. One of the things that has been challenging for me, again, I feel very fortunate because I've done well, but not all the people that were in my cohort and most of the people that got transplanted around the same time that I do, you get to know them pretty well because you're in pulmonary rehab every day with them and you're on the same schedule for visiting the docs and getting the labs. And so, and the spouses developed this, kind of this impromptu support group and they haven't all done well. Some have had, some have rejected, some have had infections, some have required additional surgeries, some have died. And so I've had to reconcile some of the survivor's guilt. I was a regular participant in our local IPF support group and I had to stop going because I felt so awkward looking at all these folks, most of whom are not gonna qualify for transplant, many who are struggling. And yet here I am just happy and good color and playing golf and playing my guitar again and things that they will never, ever be able to do. And yet somehow I am. And that was really, really hard for me. And I worked with the pulmonologists to kind of share some of my, kind of my palliative chops to help them help others with this, with the symptom side of it and the quality of life side of it. But that became really, really awkward for me to do so much better than others in that realm. Yes, I would say for me, one of the things that my colleague, the medical director for the hospital has told me one day when I was at the hospital, and she said, you make having cancer look really easy. You look really good through everything that you're going through. Even though I didn't feel great, I don't think I looked great. I thought that I was just a mess, but other people thought that it was making it look easy. And I think for me, this after part, I am still learning, I'm still navigating, going through my own little personal pandemic. It's changed how I look at things, how I approach patients and families. I thought I was empathetic before, but I think now when I've been in the bed, I've taken some of these medicines, I really, I am more present. I do try to slow down. I do really try to listen. You can't just grind this out. Like you really have to listen to folks, listen to your own body. Don't ignore signs, things that you just kind of brush off as stress or anxiety, but really paying attention to that. And then seeking the help. And so if patients are saying something's not right, something doesn't feel right, I tell them, you know your body better than I do. And I'm here to advocate and advocate even harder to your other specialists on your team, if you're really not feeling right. And if these medicines are making you feel worse, please tell me. We don't have to keep doing it just because of an article. Your body just may not be the best person for this medicine. So let's continue to work on this and really partner and let me know so I can go to bat for you if you feel like your concerns really aren't being heard. Because I think that was one of the hardest things for me is when I would bring things up and it would be saying, oh, well, that's just, you're young, it's stress, it's not this, it's that. You know, and then to find out that there's, I still have lingering side effects from the chemo. You know, my heart was damaged. You know, I've got neuropathy. So like I'm better and I look really good, but you're never quite, you're done, but you're never quite done. It's never quite over. It's always kind of lingering in the background. You know, it could always come back, you know, definitely can have some scan anxiety, you know, so learning how to navigate this after, reprioritizing what's important, maybe what isn't as important anymore, not sweating the small stuff, you know, really figuring out what matters most when you've gone through an experience like this. I'm gonna answer one of the quick questions. Someone asked if you use more pain medicines or less pain medicines? I actually use the same. I think my pain medicine prescribing hasn't changed, but everything that Allison just said has changed. I was always listening, but now I know how to cue in to different listening. So I think my practice looks the same from the outside. It feels different, but my practice habits are similar, but it feels different in all the ways that John and Allison have described. One of the things that I have done on occasion when it seems appropriate, and again, I have to kind of allow my heart, my gut to guide when I've got patients, because I would have a clinic in the cancer center also. Since I've gone back, I sort of have made some provisions that would allow me to still see patients. Usually it's in conjunction with my fellowship, my fellows, but I'll be there with the patient and I will see them struggling with things that either are currently real or certainly were real to me when I was in the pre-transplant phase. And just to be able to say, you know, I know what you're going through because I've experienced that. And I just, I understand, and I know, and I will do what I can to help you through that. There are not many times in medicine when we can do that. You know, I delivered 1,100 babies back in my family medicine career. I can't empathetically tell a woman, I know what you're going through, never will. And there's, but every once in a while, there'd be something, and I remember having a conversation with a gentleman who was short of breath, and I'm sitting here with my oxygen on, wondering, I said, where's your oxygen? And he said, well, it's in the car. I said, well, it's not doing you much good there. And he says, I can't really tell you how much better you're gonna feel by using that. And so it's just, it's little things like that. Kind of one of the things I just wanted to kind of, I, one thing I told my post-transplant pulmonologist and my transplant surgeon was, I want to be the reason you went into medicine. And I've, and they both kind of looked at me surprised, and I said, I mean it. I'm gonna be the reason you're doing what you're doing. And I said that kind of half as a joke, but half seriously. But I've tried to adopt that with every patient that I saw subsequent to my diagnosis. I wanted them to think that I went into medicine specifically to help them with this moment in their journey. As we turn the time back to Bruce to close out whatever part he needs to close out, I just want to thank everyone that's been on the call, and I want to thank Allison and John. And this originally, I think they were about to rope me into doing most of this, and I actually roped the two of them into participating on the way we did it today. And this was so much more richer, and I appreciate their mentorship to me. And Bruce, do you want to wrap us up? Sure, just very quickly. Thanks to everyone for attending. Thanks to John and Allison and Tommy for sharing your great, fantastic information that you shared, and hopefully everyone was able to take away something worthwhile to take back to your own practices. As you can see, we will be sending a survey about today's session, so please take a moment to fill that out if you would. And when you receive it, we'll also be sending the recording of the session to all who registered for the meeting. So thanks again. Thanks to our sponsors once again, and thanks to our speakers. We really appreciate it. And hopefully you all can go back and utilize some of what you heard today in your own practices. So thanks so much. And we'll see you soon. Bye-bye. Now I got to know, Allison, do you just go to Belize for pleasure, or I've actually been to Belize six times all for medical palliative care.

Allison Jordan

breast cancer

advocacy

medical team

goals of care

pain management

guilt

support group

emotional challenges

patient care