“When you're diagnosed with a chronic illness, if it's diabetes or kidney disease, whatever it is, it really, you know, adversity introduces you to yourself.”
In this episode, Lori Hartwell talks about her story of surviving and thriving with chronic kidney disease, her work founding the Renal Support Network with the goal of helping kidney patients become their own best advocates, and her work developing public policy to advocate for individuals with chronic kidney disease.
Lori Hartwell’s mission is to help people living with chronic kidney disease. Hartwell suffered kidney failure at the age of two, survived 50+ surgeries and 13 years of dialysis, and is now living with her fourth kidney transplant. Hartwell founded Renal Support Network in 1993 to instill “health, happiness, and hope” into the lives of fellow patients; she serves as President to this day and has inspired patients, family members and healthcare professionals. She has built a national network of people who she refers to as her “kidney kin” to help let them know they are not alone in this journey and help them find the tools needed to navigate this illness.
Shireen: Lori Hartwell talks about her story of surviving and thriving with chronic kidney disease, her work founding the Renal Support Network with the goal of helping kidney patients become their own best advocates and her work, developing public policy to advocate for individuals with chronic kidney disease.
Podcasting from Dallas, Texas, I am Shireen. And this is the Yumlish podcast.
Yumlish is working to empower you to take charge of your health through diet and exercise and reduce the risk of chronic conditions like type two diabetes and heart disease. We hope to share a unique perspective and a culturally relevant approach to managing these chronic conditions, with you each week.
Laurie Hartwell’s mission is to help people living with chronic kidney disease. She herself suffered kidney failure at the age of two, survived 50 surgeries and 13 years of dialysis. And is now living with her fourth kidney transplant. Hartwell founded Renal Support Network in 1993 to instill health, happiness, and hope into the lives of fellow patients.
She serves as a president to this day and has inspired patients, family members, and healthcare professionals. Welcome, Lori.
Lori: Thank you. Thank you so much for having me.
Shireen: An absolute pleasure. Lori, can you tell us a little bit more about your story surviving and thriving with kidney disease and how you got into your wide range of roles in the areas of kidney patient advocacy, support, and policy?
Lori: Well, you know, when you're diagnosed with a chronic illness, if it's diabetes or kidney disease, whatever it is, it really, you know, adversity introduces you to yourself. You're going to find out who you are, and you learn at an early age, I learned like I wanted to focus on making the most of my life because I was never promised tomorrow.
So, I think one of the benefits of having an illness and this is weird, but it, it allowed me to take more risks. And because, um, and I see this with my peers. Like I'm not afraid to go and try anything. And I think being a part of research in the 1960s, you know, the dialysis was very primitive back then.
So, people were always trying new things on me. So, I really helped me understand that taking chances and just going for what you believed was right. Was okay. And I learned that at an early age, and I've applied that throughout my life.
Shireen: You have got to have huge amount of strength to have gone through so many different transplants in itself.
I mean, just going through that journey has got to be immensely tough, but like you said, I mean, it's, it's a strength that you, that you sort of bear with. Right.
Lori: Well, it, you know, um, it's a little bit of an advantage, I think. And when you're a child and you grow up, you kind of learn to adapt. I just learned to adapt to my illness, and I had no kidneys from age 12 to 24.
So, I mean, for those of you listening, I didn't go, I didn't urinate for 12 years. Okay. And my kidney failure was caused from e-coli bacteria, from meat, not properly cooked when I was a child. So, infections, bacteria, viruses, they all wreak havoc with your kidneys, just like diabetes is the number one cause of kidney failure.
And so, you know, I just learned to just go for it and, and I learned some pretty major coping skills. Because if you don't go through the Kubler Ross stages, I mean, if anybody's listening right now and you've just been diagnosed, you're going to go through shock and then fear and then anger and then depression, and then finally understanding and acceptance and you have to go through them.
And I have to tell you, I was so angry one time at my health situation that I had never felt such anger. And I knew I had to develop coping skills. So, I could get to the understanding and acceptance stage and live the life I was meant to live. Because if you don't get to that stage, you can't realize your full potential.
Shireen: And you, you mentioned diabetes just briefly. Lori, can you help us understand what is the cause of kidney failure?
Lori: Well, the two main causes of kidney failure or diabetes is first, and the high blood pressure is second. And just to give everybody a little example of why it hurts your kidneys. And I love to give this example because when your sugar levels are high, it's like little shards of glass going around in your bloodstream because you know, sugar is kind of glassy looking right?
When you look at it and it just scars your tissues of your kidneys, your kidney veins are the same size as your eyes. And that's why people have diabetes affects your eyes, but also affects your kidneys. And so, whenever your sugar levels are high, your damn you're hurting them. And, and kidney disease is silent.
So, you don't feel it until your doctor's like, oh man, you're in trouble. So, it's really important. And then the same is true with high blood pressure is because it's just, think of your plumbing, like the pressure is high in the plumbing and it rose the size of those vessels and they just scar, and they don't filter anymore.
That's really the simplest answer. And then there's a number of reasons because of autoimmune diseases and genetics. Mine was environmental of just, you know, exposed to something. And, but the two number one causes are high blood pressure and diabetes. So, watch it.
Shireen: And you've really dedicated your life to your organization.
What is the mission of your organization? The Renal Support Network, one of the leading patient advocacy groups in the country, by the way. And can you talk about RSN support groups and how they help?
Lori: Well, I think, you know, everybody wants to hand the patient educational brochure to learn about their illness, you know, or attend this conference and learn what all the stuff that's going to go wrong with you.
And it's, you know, that's important, but you know, you have to have hope. You have to understand that you have a future. And that's why I created RSN in 1993. I’d just had my third kidney transplant. I was like 24 years old, and my first two transplants didn't work. And I just felt such gratitude for this community that kept me alive.
And I decided that I had seen several of my friends pass away and I just had like the secret sauce or something. I don't know what it was, but people were like, come talk to this patient, come talk to that patient. And I just saw the hope and I also for the healthcare professionals, because sometimes they see a lot of people who don't do well.
So just having that presence of being in. And that led me into like public policy and stuff, because I had a lot of ideas on how to improve this community, you know, because nobody knows it better than the patient, but you have to be educated. So, I really learned how policy and payment and quality, and I know enough to be dangerous.
Let's just say that.
Shireen: That's lovely. No, no better words have been spoken, you know, enough to be dangerous. So, tell us how does RSN help patients become their own best advocates?
Lori: Well, I think, first of all, we try to provide an example. Because I think a lot of times people go into, maybe, let's say a doctor's office and you just see a lot of people being passive.
When you attend an RSN support group, we are active. Um, we will push you. I mean, a doctor may tell you, you know, can't tell you to get off your butt, but we can, we can tell people to, you know, look, come on, you know, get moving, you know, we care about you and get them because you have to go through the Kubler Ross stages.
And so, by coming to our support groups, so we have exercise classes where becomes a support group, you know, because you're moving and you're with people who understand what's going through. Sometimes your family just doesn't understand your friends don't understand. And it's our duty not to be just constantly complained to them, you know, find support and you'll find solutions.
And then one of my key mottoes of my organization when I started it, I didn't really think it would ever be national was, you know, one friend can make a difference. Find somebody that you really relate to. And you have something else in common too, you know, you can't just be stuck by your illness, you know, and navigate this illness together, it’s much easier.
Shireen: Can you tell us about your favorite success story of a person living with kidney disease who benefited through an RSN support group?
Lori: Well, the one that comes off the bat is two of our members, Ginger and Bill met at the support group and got married. So, you know, that's, that's always fun to hear, but you know, one of the things we do is we do a prom for all the teenagers, with kidney disease.
And I spent all my teenage years on dialysis, and I didn't go to school very often. I didn’t know teachers and I didn't relate because I was just like, I had a 10-year-old body, and I was like a teenager in a 40-year-old brain. So, I didn't relate. And when I got old enough to understand, I thought, you know, I'm going to throw a prompt from my peers and just get them together. And so, they can inspire each other and then I can stay connected to them so that they'll, they'll trust me. And so, we just hosted our 23rd prom and I've seen over two decades of kids growing up and becoming lawyers and becoming nurses and, you know, and just these wonderful stories. And sadly, some, you know, don't survive.
It's, it's not easy, but at least they have somebody who understands. So, we're there to help them navigate and, and to let them know that they can achieve their dreams despite their illness.
Shireen: Great. You're so involved in public policy, concerning kidney patients. And recently you worked with Kidney Care Partners to develop their 2022 policy priorities.
What is the importance of a legislative agenda to advocate for kidney patients? And what are the KCP’s 2022 policy priorities?
Lori: You know, I think first and foremost, patients are listening to this. Every single illness has policy people creating policy without a doubt. And so, if you can get in a position to be educated and learn about it because payment drives practice.
And also, quality is a big issue. So, through KCP, we try to create policies because with people who are on dialysis or have end stage renal disease, which is a weird name, just means our kidneys are an end-stage. Not that we are on in stage, that, um, we're the only disease group that has access to Medicare.
And I benefited greatly from Medicare, but it's also a bundled payment system and it actually prevents and a lot of cases bringing in innovation because you have a set payment. So, we're always dealing with that. There's a couple of new payment programs that, you know, Medicare is creating to allow innovation to come in, but it's, it's complicated.
And if you don't thread that needle correctly, it just doesn't work.
Shireen: Can you talk a little bit about the bundle? I want our audience to sort of understand what that is.
Lori: So, what happens is, is when you go on dialysis, if you have kidney failure, you, you know, the majority people qualify for Medicare, they can still keep their private insurance, but patients have a combination of Medicare, private insurance, Medicare, and state programs.
So, what happens is, is that Medicare pays the dialysis provider. And this is just an average, but about 250 per treatment. Okay. Let's just throw that number out there. And, um, that includes all the dialysis supplies, sitting in dialysis chair, you know, all the staff and they're adding more medications and stuff to that bundle.
And so, what happens is, is that they're like, okay, we're going to give you $10 a treatment for this drug. Right. So how do you make sure the patient gets the drug? And, you know, I mean, and so the goal is to create quality measures, to help the person or help the healthcare professional, make the right choices, which we hope they all do.
And they, they provide enough of the medication to get you at the established level, the community agrees on, but it's hard to develop measures. It's really difficult because they have to be reliable. They have to be validated. I mean, there's this whole structure that, and I'm on the national quality forum.
So, I've participated in, I've learned so much about, it is so hard to get a measure, right. It is. It's really difficult. And, and to give you an example, like Medicare created a measure to improve patients, getting a fistula, which is a dialysis access that's I suppose, is the best is a gold standard, but it takes longer to mature than like a graph, which is a synthetic tube for hemadol.
And then there's also a catheter. So, they were pushing fistula first, people getting fistulas put in, but also getting a catheter put in because they needed dialysis. So, catheters are the highest rate of mortality with an access. So, you know, we kind of switched and we're like catheter last. Okay. But we all thought it was a good idea. Until you put something into practice, you don't understand the consequences.
Yeah, you just don't know how it's going to come out in the real world. So, so that's one of the goals, and also to, um, you know, research. Research is so important in this community. You know, we work as a, as a group, try to let the elected officials know because every disease is knocking on the door.
Shireen: That's true. And then the importance becomes getting their attention. Yeah. In order to lobby for your, or voices for you or for you work.
Lori: And then, you know, even transplant. They, um, finally, uh, Congress passed a bill about providing lifetime immunosuppressant medication for people who have a kidney transplant. And so, in the past, what had happened is patients get transplanted, Medicare pays for it, and then they cover you for three years, which is great.
So lucky to have access to Medicare, I can't even say. And then after three years you don't qualify for it anymore. So, some patients weren't able to get insurance, they would lose their transplant and go back on dialysis. And then Medicare would pay for them to go back on dialysis. So, this particular bill will help, and we have a blog on our website about it.
It's, it's not a perfect solution, but it is a solution. Because it does help pay for the medication, but it doesn't pay for the doctors or the lab values. So, patients need access to insurance, period, and, and I'm very grateful for the, you know, the Affordable Care Act and the ability to get rid of pre-existing conditions, because that was a game changer for so many people, just to have access.
And it's really quite frightening because, you know, when you don't allow people to have access to health insurance, they become dependent on the system. They spend down, they do everything to get health insurance, and that is not a way to live the life you were meant to live.
Shireen: What is the most important thing for individuals with chronic diseases to know?
Lori: Well, I think it's just really important for people who've been diagnosed with an illness is you have to do your own research. You have to learn about what the options are. Not everybody is, you know, it's a medical practice and they're practicing on you. Okay. And so, to give you an example, I went to one center for getting a transplant and they offered a totally different protocol than another transplant center. And so, you know, through my network of friends and being on support groups, I'm like sharing, what are the options? And I was able to make a very competent decision, and what I decided to do, and I made the right choice, but I had to do my due diligence because a chronic condition, you have to manage it.
And unfortunately, and I always say this to my healthcare professionals. They can be very parental at times, you know, and I'll do this for you, and I'll do that for you. And you have to be your own advocate.
Shireen: Um, so, with that Lori, we are toward the end of the episode at this point. How can our listeners connect with you, with RSN, and just really learn more about your work?
Lori: Well, our website is rsnhope.org, and you can go on all of our services are provided at no charge to people who have kidney disease. And we have a magazine and I do a podcast too, called Kidney Talk. And, you know, we have a lot of activities and fun educational information, support groups, and, uh, we're on social media as well.
And you just have to find a group that you connect with and don't stop until you find it because you know, there might be an online discussion board. I always say this to people. Just be aware when you are on an online discussion board, make sure you check the privacy, because if you're looking for a job or use whatever they search for you, you know what I mean?
You're sitting there sharing, you know, I'm climbing Mount Fuji and you know, you're on disability. You have to be a little careful. So, we have zoom support groups that are really wonderful. Because it's not public, it's not shared, you know? And, uh, we're also working on some more private ways for patients to be able to share their stories without risk of you know, somebody mining the data, which everybody seems to be doing now, I'm like, oh my God, I don't want to be mined.
Shireen: So, what I'm hearing is your group is very cognizant of privacy of sort of having those conversations in a very safe and private way.
Lori: Yes. And if you sign up, we do not sell your name or not giving, I mean, I've been victim of that. You know, people like to sell my name or whatever, and I'm, I’m just, trust is the most important element in healthcare.
And if you trust your healthcare professionals, you know, you don't need an Adavan at the end of the day, you know, and it's the same for the other groups surrounding them. They need to really trust you. And I hope that I'm able to do that because they're my peers. They're my kidney kin. That's what I call them.
You're my kidney kin.
Shireen: Love it, with that, Lori, thank you so very much for your time. It was an absolute pleasure having you on.
Lori: Yes. Well, thank you. And, uh, you know, everybody, um, just take care of yourself and do all you can, and don't be afraid to speak up.
Shireen: Absolutely. And to our listeners on here, head over to our social media and answer this quick question.
What does patient advocacy mean to you?
Lori talked about it. Tell us what it means to you, how you are being an advocate in your care. So, what does patient advocacy mean to you? Head over to our Facebook or Instagram. We will see you there after the episode. And again, Lori, thank you so much.
Thank you for listening to the Yumlish podcast. Make sure to follow us on social media @Yumlish_ on Instagram and Twitter and @Yumlish on Facebook and LinkedIn, for tips about managing your diabetes and other chronic conditions and to chat and connect with us about your journey and perspective. You can also visit our website Yumlish.com for more recipes, advice, and to get involved with all of the exciting opportunities Yumlish has to offer. If you like this week's show, make sure to subscribe so you can hear more from us every time we post. Thank you again, and we'll see you next time. Remember your health always comes first. Stay well.