Voices of Experience Podcast
Welcome to the Voices of Experience podcast, a podcast dedicated to sharing powerful stories from patients and their families, showcasing the importance of patient-centered care.
Presented by Tampa General Hospital, each episode dives deep into real-life experiences, offering insights into the challenges, triumphs, and transformative moments in healthcare.
Join us as we explore the human side of medicine, where empathy, collaboration, and care are at the heart of every story. Whether you're a patient, a healthcare provider, or simply interested in the stories that shape our medical community, the Voices of Experience podcast offers a unique perspective on the journey to healing and hope.
Voices of Experience Podcast
Life as Kidney Transplant Donors with Michael and Debbie Lundberg
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In honor of National Donate Life Month, this powerful episode of Voices of Experience highlights the inspiring journey of Advisors Michael and Debbie Lundberg, living kidney donors who turned personal compassion into a life-saving gift.
Join host Amber Washington as she sits down with Advisors Michael and Debbie Lundberg to discuss what motivated them to donate, how the experience changed their lives, and why they continue to advocate for organ donation. From emotional highs to unexpected challenges, their story sheds light on the realities of being a living donor and the impact of giving the gift of life.
Tune in to celebrate hope, generosity, and the incredible power of saying yes to organ donation.
National Donate Life Month is observed each April to raise awareness about the importance of organ, eye, and tissue donation and transplantation. It's a time to encourage registration as a donor, honor both living and deceased donors, and celebrate the lifesaving gift of transplantation.
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Every single month we get updates about what's happening within Tampa General here in Tampa and then Tampa General's growth and what changes are happening.
SPEAKER_04They keep asking for a continuous improvement, which is fantastic because most people in organizations, say you work for an organization, they don't really want your input or your feedback. But Tampa General is really asking that and they're making the changes when they are recommended by the patient.
SPEAKER_00With our host, Amber Washington. Together, you'll explore the impact of patient and family voices on healthcare innovation and patient-centered care. Stay tuned as we dive into today's episode, and don't forget to subscribe to the podcast so you never miss an episode. Whether you're a healthcare professional, a patient, or simply passionate about making a difference, this podcast is for you. Let's get started.
SPEAKER_01I have been wanting Debbie and Michael on the podcast for quite some time now. They have such an amazing story, and they are a part of the Patient and Family Advisory Council at Tampa General. So, Debbie and Michael, welcome to the show.
SPEAKER_02Thank you.
SPEAKER_04Thank you. Happy to be here.
SPEAKER_01Wonderful. So we like to always start off the show by giving our guests an opportunity to talk about themselves a little bit, tell the audience where you're from, what brought you to Tampa, and how you're kind of connected to TGH.
SPEAKER_02Well, we both met here in Tampa, neither of us are from here, and we met on a blind date 20.
SPEAKER_04Two years ago. 22 years ago. It took a second. Yes, yes.
SPEAKER_02Immediately we clicked and we were engaged a year later and married shortly after that. So we've been married for 20 years. And what brought us both to Tampa was our work. And then Michael is still doing that work. And then 19 years ago, I started my own practice presenting powerfully. So we're connected to TGH because we're both living kidney donors, which is how we're connected to the patient and family advisory.
SPEAKER_01Thank you, Debbie. And thank you, Michael, again for being here. Yes, they are an inspirational couple, and we're gonna dive into the story a little bit today. And so, yes, as they mentioned, they are a part of the Patient and Family Advisory Council. And for those tuning in for the first time to the podcast, that is a council at Tampa General Hospital comprised of patients, caregivers, and family members that advise a hospital at a very high level and really give back the patient voice by implementing into new processes, new buildings, new opportunities in ways that Tampa General can really enhance the work that they're doing. So really glad to have Debbie and Michael here, and they're really special to the PFAC. As we dive into today's conversation, we're really gonna discuss the patient's story and how you all became a part of the PFAC. And so I want you guys to kind of talk about a little bit how you became donors and kind of your why behind doing so. And I'll start with you, Debbie.
SPEAKER_02Sure. So it was February of 2020 when I first went to have my blood drawn to see about donating a kidney because I'd heard about the need for kidney. I read a post about it and really didn't realize at all. And I have, as you know, no embarrassment sharing that renal failure and kidneys were such an issue, and not knowing that one in three people will be impacted and one in seven will have somebody in their family, and then 13 people die every day waiting for a kidney transplant. And so I really just thought, you know what, I dislike when people say, Let me know what I can do. I prefer people say, Here's what I can do, and I'm going to do it. And so I figured I could understand a little bit more because I didn't know much. And I think that's really good for people to hear who are listening to the podcast. Is it's okay not to know things about health or wellness or about the patient and family advisory council. And if you ask, people at TGH want you to learn. So I really went and had my blood drawn. And I mean, before that, I did the finger prick, and I thought that was good enough to figure out, but it wasn't. So with that in mind, I went to Tampa General Hospital, I went to the professionals, and right from the start, the phone calls, the engagement were very professional, dependable, engaging, and thoughtful. And then that funny thing called the pandemic hit. And when that happened, I was also told that, hey, we get it, you might not want to do this because you won't be able to do it in the manner that you typically do. And I thought, I'm still willing to do it. And then I learned so much about not necessarily having to know who you're gonna donate to when they told me, Are you willing to donate to whomever? And I always thought, probably like a lot of people listening, that it had to be somebody who was related to somebody or it was really rare that you could donate. And I found out that it isn't, and that there are so many people waiting. So I went through the process by myself going to all of the appointments with Michael's support, but he couldn't go. And I mean, every time I went, I mean, the phlebotomist I got to know really well, and you could feel so much. And when they said, I hope to see you again, that they really meant it. And you've heard me tell the story with the new team member orientation that when they say it, you see it in their face and you feel it in their heart that they're hoping somebody who they've been working with for so long who's waiting for an organ is has the possibility of getting one. And so I think that whole connectedness, even though we had to have physical distance and there were so many strange things at the time, it was something I was doing quietly that only Michael really knew about, and my aunt and uncle and my running partner, because they had to sign off that they would take care of me if anything happened so important that they knew. So going through it, I mean, even things like I'd never been through having a stress test. And so that whole experience of having on a mask and only having so many people around and finding out how really fit and healthy I was was a huge bonus. And then to find out that I could be a living donor was a relief to think, wow, this could happen. And then it was also that idea of well, what really happened? So I did go through the process, and Michael dropped me off at the hospital on August 6th of 2020, to leave me with two kidneys and pick me up with one the next day. But I was fortunate because somebody we know was going to be doing rounds there and had access and was able to take me home. So it was a very smooth process. And Dr. Wong hears me say this all the time. He's a great surgeon, not the best jokes, but the best surgeon I could have wanted. And I mean, I've attempted to coach him on joking, but let's face it, it's more important that he's good at the surgery. So then TGH invited me to come and speak to everybody involved in surgery at TGH to do a Teams meeting with Dr. Wong, which I was thrilled to get to see him again. And he was very thoughtful in the fact that he was aware of my habits and different things. Like he said, we typically have a 14-day check-in. I'm gonna do yours at 12 because I know you're gonna do what I'm saying. And he's like, You better do what I'm telling you. And I did, I mean, I did the walks, I did everything, and so they asked me to come in and tell the story with them. I said, Yes, can I please have one request though? Can my husband, Michael, come? Because he's never gotten to come into TGH throughout all of this, had never met anybody or my surgeon, so I would love for him to be involved. And then I turn it now over to Michael because while I was doing the talk, it really wasn't. I mean, I'm not saying it wasn't because of what Michael experienced with me because I had a good experience, but I know you tell the story about how Dr. Wang impacted you.
SPEAKER_04The same thing here. I knew what Debbie was going to go through and what her recipient was gonna go through, but I didn't know the global scenario regarding kidney disease. And Dr. Wang said there's over 100,000 people on the waiting list and over 13 dying every single day. And I thought about that, and I put it in terms of my fraternity brothers. We have a golf outing every year. There's about 40 some of us, and I'm thinking about that like we're together about three days, and put that in perspective, everyone could be dead at that point.
SPEAKER_03Right.
SPEAKER_04That's the number of people, and just those three days we're together. And I thought about all those people in that room and all their families, and it was just heartbreaking. So immediately I'm like, well, I'm definitely doing this when I retire in about 10 years or so. And then we started getting to the end of the year, say December, January, December 2020, January 2021. Yeah, I was still wasn't traveling a whole lot for work. I said, I'm gonna do it now. Called the people Debbie introduced me to at the transplant center, and like, oh yeah, yeah, we know your wife, she's great. I'm like, well, I'm coming in next. And so I went in, and next thing you know, five weeks later, I'm in the OR and donating. I just was an altruistic donor to said whoever needs it will get it. And then I got to finally meet my donor. We met him a year and a half later. My recipient. My recipient, sorry. Yeah, it was an unbelievable experience.
SPEAKER_01Wow, and you all speak so highly about what you all did, and it's really, really passionate things that you did for those individuals, and you didn't even know them, right? You just said, I want to do something because I want to do it and I want to give back. And a lot of people don't have that type of courage. So it's really inspiring to hear that part of your story, and that's why I really wanted you all on the podcast. And it's fitting because we're recording this on the first day of donor month, right? It was very fitting, and I was like, this is perfect. And so I really want to kind of tap into some of those feelings that you all had because some people might be afraid, they may want to do what you all did, right? And it's a personal choice. Um, but some people may be afraid or maybe thinking about I want to be a donor, but I don't really know what that process looks like, or is it really worthwhile doing? And you all said the stats, the numbers don't lie, right? There's thousands and thousands of people who need transplants every day. Right. And the fact that we can live with one kidney as a bonus, of course, with proper medication and taking care of ourselves. But talk a little bit about if someone wants to be a donor, what words of encouragement maybe can you give them?
SPEAKER_02I think that the best thing to think about, because I've had the opportunity to engage with 19 people now. And the reality is, Amber, you said, and most people don't do it. And I tell everybody, you can ask me anything, nothing's too personal or strange or silly. There's nothing about it that you can ask me that I won't answer. And sometimes I tell the men who talk come to me, I'll say, if you'd be more comfortable talking to Michael, he'll talk with them, or if I'm not available. So, number one, ask questions because there's a lot of misinformation out there. We happened to be talking with the National Kidney Foundation of Florida yesterday, and we were talking about how it's almost this hidden disease for people who have kidney disease, but also for donors, there's not a lot that people know. They don't see people who look like Michael and me, who are super active and athletes and have been our whole lives, and how it doesn't disrupt that much. So I'd say the second thing is it's okay if you don't do it right now because you'll learn about yourself, you'll learn about it, and minimally please consider signing that you'll donate and having that you're a donor on your license, because a donor can be a living donor, which does give people much more longevity, but a cadaver kidney or other organs can also save lives. So I think I thought that unless it was a dire situation in some family member, I mean, let's face it, I'm of the age that I've seen stale magnolias, and that was my impression of kidney donation that it's horrible on the donor and people could die. And I mean, you know, that I get it, that's true. People can die, so I don't want to make light of it. But that's all I really had because I didn't have it in our family. Neither of us had it in our family. So I think ask as many questions as you want, and don't you know? People ask us, I will tell you, one of the most common questions we get asked is so now you guys can't drink, drink alcohol. And you know, it's a weird thing, but it's like, no, we can. And and I mean, I'm telling you the in chats about it. I mean, people are like, no, I'm pretty sure you can't. I'm like, we've lived through it, we drink alcohol. And so, I mean, it's not like we're saying you have to drink alcohol after, but there are these odd things. And I guess what is the most common or was when I went through it, when I was talking with everybody at the transplant center, I said, What's the reason people give you? Now it's not necessarily the true reason, and people will say the scar. Now, the scar is below your bathing suit line, and what's to be embarrassed about? You did something that you were able to do and you could assist someone else. So I think there's this whole idea of it's gonna make you look so different or be so different. And the reality is it's okay if you don't want to do it, if you have any interest, though, ask someone like us or get somebody from PFAC who's on the transplant PFAC, or anybody who's willing to talk about it who knows what they're talking about.
SPEAKER_04The scarring is so minimal, you can't even really see our scars anymore. And I know there's a couple things uh the doctor is joking, he's like, Well, we want you to not play football anymore or any severe contact sports, and that didn't really crush my dreams and my visions of becoming a professional rugby player or football player. And one other one that's fairly common is they don't want you taking a lot of anti-inflammatories that are NSAIDs.
SPEAKER_02Those are like Advil and things like that. I will say that in the medical community, I wish they'd say that more clearly because we happen to know because we're around Tampa General Hospital a lot, but people are like, I can't take Tylenol. You're like, no, no, you can take Tylenol. Don't take the Advils or the Motrins, things like that. But the other thing is the Americans probably take too many of them anyway. So it's not good for your kidneys, whether you have one or two.
SPEAKER_04Yeah, and regarding the numbers, you do all your numbers before you go in, they test you, you get the most complete physical you've ever had in your life. They want to know everything about you, make sure you're in perfect health, and they check all your numbers, and within three or four months, our numbers with one kidney were the same function as when we had two.
SPEAKER_02Yeah, I mean, we really didn't see much of a difference at all. And you might have some things pop up. It's funny, and I don't know if it's still true, but the pharmacist who works with transplant, I said, What happens to people with one kidney? Like, what are the mistakes they make? Because you know us, and I'll be like, what are the things we're not asking? And he said, People do things like they hear about something that's not prescribed by their doctor, or they take too much of something, and they don't realize the impact on their kidney. So people will say to us, like, well, what if one of you needs a kidney at some point? Number one, it's highly unlikely. And number two, if it happens, we go to the top of the list as living donors, and we certainly hope somebody else like us would be there. But people will also say, Well, I have children, so I don't want to do it. There's no guarantee you're a match for your child anyway. Or people say, Well, I'm not the right blood type. Well, you don't have to be the right blood type now because of this is it called chain or train. I always want to say train, but it's chain. So, like, let's say, Amber, you needed a kidney, and let's say Michael and I both had two. And it doesn't matter so much to us what your blood type is or what ours is, if we're willing to donate to you, which is a directed donation, then what happens is this whole chain happens. And there could be somebody in Pittsburgh and somebody in Portland, and they all agree, but the matches happen behind the scenes, and that hasn't always been the case. You know, we've got over 50 years of transplants now, and that wasn't the way. Now, when people say, Well, I don't have the right blood type or have a rare blood type, it's like that doesn't discount your value at all.
SPEAKER_01Oh. You guys bring up a valid point because I think that's a lot of people's thoughts, right? That the blood type is gonna match, is the or I'm gonna get rejected, right? And those thoughts are always running through people's minds when it comes to transplants. But kidneys is unique because it has those opportunities where you don't have to have the exact match, and the technology has grown extensively, and TGH is one of the top transplant hospitals in the country, right? And so the research is backed. We have leaders in place that have really done the work to really build this program up so that these opportunities are available to the community. And so that's a really good point, Debbie. And also, Michael, going back to what you said, some of those questions that a lot of these patients are having, a lot of it's just fear, right? And a lot of it is just the fear of the unknown. And you guys brought up really key points. I think really answering those questions where patients are probably listening to the podcast now thinking, oh, I didn't realize I had all this opportunity or all of this technology was out here where we can actually give. And yes, living donor is best, but cadaver is also okay and will save a life, right? And that was a good point you guys brought up. So thank you for that.
SPEAKER_04You're welcome. And one more thing I'd like to add the healing process within seven or eight days, we both felt great. We weren't in pain, we were off the pain meds by the time we left the hospital after one or two days. So it wasn't painful. You were just uncomfortable for the first week and a half or so, and then we both felt great, and then you have to be very careful because you do have an incision that's glued together, no stitches, and they just want to make sure you don't cause that incision any harm. So you feel great, but you still have to dial it back. That's probably the hardest part because you feel great, like, oh, I can do anything. I feel 100%. It's like just take it easy with that incision.
SPEAKER_02It's true. Like, I usually run like 26 miles in a week, and I did at that time. And during COVID, I was doing 10,000 steps before sunrise. And so Dr. Wong and I talked about it. He said, if you'll do all these things, which I walked what, four times a day. So I have people walking me, like people would come over and walk with me because I wasn't walking fast, so we don't want to misrepresent it. And we wore the girdles that keep everything together, which we have this who wore it best because we both have girdles. And yet on day 11, I ran a mile.
SPEAKER_01Wow.
SPEAKER_02It's true, Michael's right. It's like I wanted to run more, but my I was tired. I mean, I'm thinking they tell you plan for six weeks, and I realize that's important that the hospital does that because you have to have worst case scenario. But I think if you're really healthy before you go in and you have the right mindset and the right physicality, and you're excited to do it in that way, because not very many people are happy to go into the hospital. Like pregnant women with healthy babies and kidney donors and the team members are tops of the list, but not everybody's excited. So if you have that right approach and you ask the nurses, the doctors, everybody all the questions. People ask me if I was fearful. I tell them I was nervous because of course I was going under, but I was never fearful for my life. Now, everything was explained, there was a risk, but I was like, well, of course I'm a little bit nervous and Michael couldn't be there, and all these things were going on. But fear, not at that point. So I knew that my mind was clear to allow my body to heal.
SPEAKER_01You guys mentioned some very key things, right? One of them being your mindset matters when you're going into a process like that. Second one is our bodies are resilient, right? So we're going under the knife, you're doing it voluntarily, but our bodies heal themselves and they have properties within our bodies that manifest and allow us to heal and basically go back to our lives. You guys went back to running and doing the things you love. And third is your scar isn't gonna be that big. So don't worry.
SPEAKER_02I mean, he was really seeing my scar or Michael's scar besides us.
SPEAKER_01So, with that being said, you guys brought up some very important points of being a living donor, and I don't think as many in the United States. So you guys are very rare in a sense, because like we just mentioned, most people are afraid. But I like that you mentioned you were nervous, Debbie. So you still had emotions, you still had feelings towards the process, but your mindset was in the right place, and that is why you were able to thrive. And then, Michael, you mirrored right along with her same mindset, same mentality in a sense of we're gonna go in here and we're gonna change someone's life, right? And then you guys had the opportunity to meet them, which is amazing as well. I do want to dive into a little bit more of the PFAC side now. So we talked about your story. Remind me, how long have you all been on the PFAC?
SPEAKER_02So I've been on PFAC since 2020, even though that was August, I think it was already at the end of 2020, beginning of 2021, because I was on before you. You donated, so yeah, it was pretty quick because I'd gotten connected with Laura Click, who got me connected with Kristen Keller and you eventually. So that all moved pretty quickly. And so that all of your listeners know, we're still in the process of getting the transplant PFAC really up and running, like so many others that you all have gotten going. Because we've been participating, but we really are hoping to get this, and we're planning to get this over the finish line, because I do believe that the patient and family advisory council with transplant could assist in perhaps us volunteering or others certainly volunteering to answer those questions. Because I end up with the folks that I mentor. I mean, we were on a trip to Hawaii wearing kidney donor athlete hats, and the person said, We're on our honeymoon, and somebody in our wedding might be donating to her uncle, and then we ended up connected. And so to your point of PFAC, the patient and family advisory, I think sometimes family members don't want their spouse or their child or their parent to donate because of the misperceptions. And that's where we could assist with how do you do the pamphlets? And perhaps there should be a family members only conversation where they can say all their concerns and fears and we can address them, you know, with medical professionals or maybe without, because they just want to say, like, I'm scared for my sibling. I think things like that are where PFAC really comes into play to make a difference. And one of the things we've really enjoyed is the new building that is going up. And most of it's about transplant. And I know Michael can talk to all the things we've been doing with that.
SPEAKER_04Yes, on the building committee for the new transplant and neurology building. They asked us our input on things because with us, it's almost like when the IT folks tell you, here's what you need, but they don't do your job. So you want somebody who does the job assisting with the IT folks to let them know what end user, being the patients in this case, need. We went into some of their mock-ups and we're like, well, this isn't very helpful because when you're going to come into the hospital, you know you're going to be there for several days, and we said you probably want something where you can put your bag, your toothbrush, everything there. So they're like, oh, okay. Just those simple things.
SPEAKER_02And I know it's a podcast for Tampa General Hospital, but even down to when you're attempting to go to the bathroom or in the shower, because when you have that incision and your mobility is really limited, I mean you're bloated from all that air from being under, you know, you've been intubated. And so we even talked about something as small as how far away the toilet paper is from the toilet. We were invited and we participated and you did to the max in all the meetings. And sometimes it was nothing to do with it, it was only construction, but we participated fully. But they would ask almost every time all right, Michael and Debbie and other patients who were there, what do you think? How does this impact you? And when we would go back. I mean, they would make those changes. And it's very impressive to see that the company that Tampa General Hospital works with from construction, the planning stages, it starts with the needs of the patient and actually brings in patients. And then when we had resistance, they weren't defensive. It was like, oh, well, we hadn't thought about that. Now the nurses and doctors and techs, they would chime in too and say, Well, the reason we want this is because of this, but it was really collaborative.
SPEAKER_04Yes.
SPEAKER_02Very impressive. So people who end up in that facility are going to have some really impressive rooms.
SPEAKER_01Yeah, and it all started with the patient voice, right? And that was one of the main drivers behind this podcast. And that's really the main driver behind PFAC in general throughout the organization. We're really grateful to Tampa General for even allowing us to have this space to allow patients to come in and to implement their voice into processes because you all had a city at the table ultimately. They saw you all as partners. That is truly the goal and the why behind PFAC. And that was a great example. Thank you guys for mentioning that because it really gives an eye-opener from a patient perspective as to the input that you all have. I can sit here all day and say patient has a voice, patient has a voice, patient has a voice, right? But you guys are giving key examples as to how you had a voice and they listen to it, right? And so as Debbie alluded to earlier, we are trying to really build out our transplant PFAC. We have so many dedicated advisors, just like Debbie and Michael on the Transplant PFAC, who want to give back and give their voice. And Debbie and Michael have had the opportunity in various ways, but we are looking to continue to build that and to really partner with leaders. So as this year continues, as we continue to grow, we are hopeful. And these are great leaders. And just gonna plug you guys, you guys are the chairs of the Transplant PFAC. So another plus, right? And who's more fitting, right? I mean, you guys are remarkable individuals, and I really, really appreciate your voice and your time and all that you do. I really do.
SPEAKER_04Thank you, Amber.
SPEAKER_02Yeah, thank you, Amber. We're excited that we're making progress with it, that all of us, you, us, the others, that people are open to it. If we keep moving in that direction and get this information out, I think if we have this conversation the next donor month in 2026, hopefully the conversation's different about capacity for donors or how donors are changing their views on it or impacts like that. It takes time, we get it. It is time for people to feel comfortable asking the questions and making the decision from an educated perspective as opposed to a fear-based perspective.
SPEAKER_01And I am making strides behind the scenes to partner with like our performance improvement partners within the transplant space because that is a big driver where when there's a project at Tampa General, they have a team of people who lead right ultimately those projects and they're divided into service lines just like we are. And so really finding those key partners into the organization and really getting aligned with them to really see forth the vision, I think is very crucial. So we are working unique ways to get involved. And so I do know you guys are gonna be right there at the front seat, you know, ready to give feedback. And you guys have a different perspective because some of our patients are recipients and you all are donors. And so that is a whole different lens. And I do know TGH has a donor program that they have built and collaborate with donors, but I think having the patient voice from this perspective integrated in that would be really great.
SPEAKER_02And you know, it's interesting, if I may, that it just happened what two days ago. I get a lot of requests, and I don't mind. I get a lot of requests from people in a little bit of a panic, and they'll say, I just found out that so-and-so needs a kidney, or my cousin found out they have the situation, and they ask me for recommendations, and I tell them, please go to the TGH website and please look under nephrology and different things, because it is so different being a recipient versus a donor. Like we have educated ourselves, but we're definitely not experts on that side. We want to be, we keep learning, and we're happy to refer. But that you're right, there's such a difference because people are in a different mindset, which you and I mentioned earlier, and then they're in a in a different state of I don't know where you are with this. I will say though, if somebody has something, I hope it's okay to say this, that if they make something public about requesting somebody to consider donating, you mentioned it as well, Amber, that don't state your blood type. Because people will say to me, What do you think? And I'm like, please don't state your blood type because you're sending that old message of you have to be the blood type. So say, like, if anybody's interested, please we'll answer any questions. Because I think that mentality, then people go, Oh, I couldn't do it. And then we don't get a chance to share the things about you live a normal life, you feel good about your decision, you know, those things. So on that donor versus the recipient side, I think it's good that we're gonna have these experts who have received and they know so much more than we do.
SPEAKER_01Yes. And actually, you all mentioned new team member orientation earlier. And so you all are a part of it and tell your story to the new team members. And for those tuning in, this is an opportunity where the PFAG members tell their story to new team members coming into the organization and ultimately say why you're important, right? So now we're giving back to the team members and saying, you impacted us as patients, and this is why you're important, and this is why you're here, right? To continue to impact other patients. And so we recently had a transplant recipient, Luis Melendez. He is a new PFAG member coming on, and he is so grateful to TGH. He actually is a three-time liver transplant patient. And to hear his story, right, it's a little different from you all's because you all came in with the mentality of I want to give back. He came in with the mentality of I need saving. Right. He had a family, he had moved to Tampa, he was living a great life, and then unfortunately, due to his genetics and things like that, his liver was failing him. And he got connected with Dr. Dan Rady and multiple professionals within the organization and was really able to live a beautiful life now. And he really attributed to TGH, and he recently announced that he is now a granddad.
SPEAKER_02And so that's wonderful.
SPEAKER_01Yes. So stories just like that, right? From a different lens, both are really impactful and valuable. And so I hope to one day on this podcast have a recipient so we can both have the donor lens and then the recipient lens.
SPEAKER_02We could do a whole panel.
SPEAKER_01We could, yeah. I would love to do that. Yeah. Look at Debbie plugging it. Okay, stay tuned.
SPEAKER_02Happy to. I mean, I've talked with your recipient and he said, I don't love things like that, but if you all want me to ever do it, I'll do it. He tells the story really well. He thinks he's not good at it, but he's very good at his gratitude and his storytelling is better than he knows.
SPEAKER_01Wow, that's amazing. So as we start to wrap up, there is always a question that I ask on all the podcasts because this is really a big part of the voices of experience, right? And just for those who don't know, this name actually was named by the PFAC members themselves. We had a vote, and this is what came about. So voices of experience, right? The patient voice, really having experiences within the organization that truly impact the larger group. And so one question I always ask is why is the patient voice important, right? Because we're here, you all are patients, you have a voice, you're telling your story, but now why did you do that? Why do you tell your story?
SPEAKER_04Oh, we hope to spread the word about what Tampa General is doing for one thing. They keep asking for a continuous improvement, which is fantastic because most people in an organization, say you work for an organization, they don't really want your input or your feedback. But Tampa General is really asking that, and they're making the changes when they are recommended by the patients who are in the end users. It's wonderful to see.
SPEAKER_02I like doing it because when having this opportunity to talk about TGH, people will often ask questions a lot about the growth of TGH. And what a lot of people may not be aware of, and I didn't know what I was getting myself into at the beginning, but that we are brought in our entire patient and family advisory council, every single month we get updates about what's happening within Tampa General here in Tampa and then Tampa General's growth and what changes are happening, some things like with COVID when we were going through all of that, and then when new strains of different things come out. So we're getting educated so that when we're speaking our voices of experience, whether it's at a dinner party or with a client or someone happens to notice us wearing a shirt, we are coming from a place of knowledge, and it's a place of pride in knowledge. So we're not, yeah, we're bragging a little bit, but we also sometimes people come to us with concerns, and then we can get them to the right place. So I think it's also we know that we're not perfect, we know that TGH isn't perfect. And to Michael's point, the continuous improvement, if we come to you or anyone else and we say, Whoa, this happened, or we text you, we know that you're gonna direct us to the right place. And I've noticed over the last four years that people text me when their loved ones are not feeling well, and I'll be like, please go on Kennedy and go to the standalone emergency room, like, please do the emergency department that's there, and they're like, Except I'm like, no, no, please go there. And so to answer the question, patient family advisory council is more than just telling our story, it's getting the information in both directions that we know you care, but then also you know we care. That when we're out and people are like, Well, I don't know, I heard it had these long waits. Yes, there's a lot of people who want to go, you're getting just as good of care if you're waiting, you know, things like that instead of there's just a group that's frustrated.
SPEAKER_01Right.
SPEAKER_02So I like that aspect that unfortunately it was about a year ago I was with someone at an event and she fell. And some people happened to be there from TGH, and Michael was coming to pick us up, and we got everything taken care of, but I had so much confidence as long as we get to Tampa General Hospital, I knew she'd be taken care of. And I get it. She was like, No, I'm okay, I'm okay. I'm like, no, no, no, no. And the EMTs, everybody knew that getting her there, and it was that next level of confidence.
SPEAKER_01Yeah, and you brought up a great point, Debbie, because we do believe in open line communication, right? Because how can we ask you all to serve for us if you don't know what's going on? And so that's where that openness comes, where we're sharing about what the organization is doing. And the organization is proud to share it. I mean, we have opportunities when we hear about new technology, and just to plug the next meeting we're having, it's all about the new technology that's happening at TGH. So stay tuned. You guys are really going to be in for a treat. But with that being said, right? I mean, you guys have the opportunity to sit at a table, hear about what's going on, and then be able to spread it through the community. And then you bring back their concerns to us too, right? And thank you for bringing up the Kennedy ED. I mean, the PFAG was able to walk the ED and give feedback, right? That is a testament again. You know, why is the patient voice important? Okay, the patients went, they saw the facility, they see the work that's happening, they see that it's high-level care, right? You're gonna get the same care there as you would at TGH Maine. And now you guys can be a testament and say, no, no, no, it's okay. You can go down the street. They built it for a reason, right?
SPEAKER_02Yes, yes. And Michael's utilized it.
SPEAKER_03Yes.
SPEAKER_02And I mean, it happened somebody with their child, and I said, please go there. I mean, you know, part of me in the back of my mind is thinking, like, okay, you're you know, you're texting me, a non-medical professional. But at the same time, because we do so much with TGH, I love that people feel comfortable with it. I mean, we saw the room of the future. That was another one. You've tasted the food. Things like that. People don't realize the changes with the cafeteria. And so if somebody makes that comment, like we had input on what new restaurant was going in when McDonald's went out. Yep. You know, things like that, does it change everything? No, but that part of it, when we get permission to share and we share, people are like, oh, how do you know that? It's like you get involved, you gain confidence in the organization.
SPEAKER_01For those listening, the Patient and Family Advisory Council right now has 70 plus advisors serving. And I mean, we are continuing to grow. And I'm really, really proud to have individuals like Debbie and Michael because you all are examples for the next advisors coming in, right? You guys are literally the epitome of what a good advisor, great advisor is. And ultimately, right, you give input in a strategic way, right? It's straight to the point. It makes sense, it makes sense to the organization, and then it also is impactful, right? You're not just saying, yeah, I don't like that, but you're also, but you're giving solutions, right? You're giving a reason why. That's really what stands out between just it's a regular person giving feedback and an advisor. An advisor understands the impact. And so when they open their mouth and give their feedback, they're giving tools for success as to why it's gonna be impactful to the organization. And that is the key to this patient and family advisory council. And I'm gonna say it, we have one of the best in the country, and I'm gonna say it until people start repeating it. But I truly believe that because individuals like yourself, we have such a strong PFAC, and I hope we continue to grow. So thank you all so much for giving up your voice. Thank you so much.
SPEAKER_02You're welcome. Thank you. Thanks, Amber.
SPEAKER_01As we close out today's episode, I want to thank Debbie and Michael again for joining us on the Voice of Experience podcast. And if this is your first time listening, please tune into our website at voicelofexperience p fac.com, and you can check us out on social media at Voices of Experience PFAC. But until next time, let's keep the conversation going.
SPEAKER_00Thank you for joining us on this episode of the Voices of Experience podcast. We hope you found the conversation enlightening and inspiring. If you enjoyed the episode, be sure to subscribe and leave us a review. It helps others find our show and supports the incredible work of our patient and family advisory council. Stay connected with us on social media. You can find the PFAC podcast on social media at Voices of Experience PFAC. For more information about PFAC and how to get involved, visit our website by clicking the link in the show description. Until next time, let's keep the conversation going and continue to advocate for patient-centered care.
