PowerLiving with Kimberlee Langford
PowerLiving with Kimberlee Langford
Christina's Tale of Resilience: Overcoming Kidney Disease and Adversity with Humor and Love
When life throws you curveballs, sometimes all you can do is swing with all your might – and that’s exactly what Christina, our fabulous and resilient guest has done. Listen in as she shares her extraordinary journey from battling kidney disease, enduring a pregnancy with undiagnosed PIH (Pregnancy Induced Hypertension) that caused blindness and seizures, to finding strength through humor and love. Her story isn't just about survival; it’s about thriving against the odds and embracing each day with hope and joy.
Throughout our conversation, Christina and her champion and husband, Michael transport us through their life's tapestry. Hers is a story of determination as she navigated the challenges of being a young single mother dealing with kidney failure. Her candid revelations about societal misconceptions and personal adversities shed light on the often-overlooked struggles of those living with chronic conditions. Despite all the setbacks, she rose again - over and over. She met and married Michael and they live life to the fullest and on their own terms. Their narrative is a powerful reminder of the human spirit's indomitable will to find self-worth and happiness, even in the darkest of times.
Join us as we explore the intimate world of home dialysis, nocturnal treatments, and the unshakeable bond she shares with her husband and care partner, Michael. Their story is a testament to the profound impact that support, empowerment, and a good laugh can have on overcoming life’s obstacles. Prepare to be moved and inspired as we honor Christina and Michael's gratitude, strength, and the life-changing role of nurses and caregivers who inspire, educate and support people to thrive on dialysis.....and beyond!
we are all together. We got a couple other nurses popping on. As usual, we're busy talking with patients, saving kidneys and hearts and livers and spleens.
Speaker 1:If you're a venom fan, right, just saving lives you know, no big deal, yeah, so we may have some people pop on, but I'm so excited to have Christina with us on our Nurses Brown Bag. So, you know, once a month, the nurses all get around a round table. We share stories and insights and hopefully share a little bit of smarts out there and an inspiration which, of course, if you want to talk inspiration in the realm of kidney disease and dialysis I can't think of anybody who does that more than you. So, and here's Nancy. I know you met Nancy last time. Hey, hey, hello, hello, so, yeah, so, and you're. You know, if you're not following Michael Gilchrist and the blind chick living on dialysis, you definitely want to follow them on LinkedIn. They have so much great content out there. But gosh, christina, if you wouldn't mind taking a minute, and gosh, just tell us a little bit about your story and why you know what is this blind chick living on dialysis?
Speaker 2:All right, all right, so okay, well, I guess I have to start. When I was 12. I went in for a sports physical and I had protein in my urine, and so they sent me to a nephrologist and I had a biopsy done and I found out I had a kidney disease. It is a genetic condition. I have eight siblings and I am the only one who got it. I don't know why, but I got it off. Only one who got it. I don't know why, but I got it off. But they're all healthy little butt heads, you know you sacrificed for them.
Speaker 1:That's what that is.
Speaker 2:I always say that, like you guys, I would tell them you guys are just lucky. I took all this on, yeah, but so so I found out I had a kidney disease and my diagnosis was nephritis. But they weren't sure what strain of nephritis and so we just kind of went with that and my doctor said it would probably not affect me until late, late, late in life. So go on with life as normal. So I did. And when I was 22, I got pregnant and during that pregnancy I developed toxemia, which is also preeclampsia now. Pregnancy I developed toxemia, which is also preeclampsia now, and my doctor didn't catch it.
Speaker 2:So I ended up going into seizures and during those seizures my optic nerve and my retina in both eyes imploded. So I was completely blind for about six months. I went on some medication yeah, I know, I went on some medication and we started clearing out the excess blood and I was left with I have no central vision. So we we've all looked at the sun and you get that mark right, that little blind spot. I have that, and just my son's a bit bigger, and it just never goes away. So I look out of my peripheral vision and I always my son, my son Joe's. Mike loves it when I do this, but it made dating really easy, because everybody's attractive when they're blurring.
Speaker 1:That's what I tell my husband too. Keep your glasses off in the morning, because I look a whole lot better.
Speaker 2:I love that. I love that, yeah, it's true, that's okay.
Speaker 3:I get the jackpot, so it's all right.
Speaker 1:Oh, I think he heard that now. Michael, you're still handsome, it's all good. She didn't mean it.
Speaker 2:He knows he's handsome. That's why I can get away with saying that he's gorgeous.
Speaker 2:Yeah. So also during those seizures my hypertension just went through the roof, which caused me to go into kidney failure. So I gave birth to a three pound, 12 ounce baby girl and when she was born they said not to expect her to cry or anything, because she was so preemie, and but she did. She cried, and so the hospital said, okay, well, she's strong, we're going to go ahead and feed her. And so they fed her and the food only got to a certain part because she had no intestines, so it hit her stomach and then turned into infection and started coming right back up.
Speaker 2:So I the interesting thing is they did a C-section and I didn't know I had given birth because I was so out of it. And so about a week after I gave birth they came into my room and I still didn't know I had a baby. And they came in and they said, hey, your baby is really sick and we need to lifelight her to another hospital. And I'm thinking, what do you mean? My baby's in here and I'm still talking to a baby in my belly, you know. And they're like oh, no, no, no. So I got to meet her for about five minutes before they took her in the, in the lifelight, and so the first time I met her I couldn't see anything.
Speaker 1:I don't remember seeing her all I remember, blind and you, you were uremic, so you have what we call that brain fog, right?
Speaker 2:yes, yes, yeah, yep, and, and since I had that toxemia, um, after my doctor delivered my daughter, he bailed because he knew he messed up. I actually I went in for like three or four extra appointments and kept telling him something's wrong, something's wrong, and he kept saying, oh, no, no, you're fine. It's normal to swell while you're pregnant. But I had, I had one month in particular where I gained 50 pounds and I was not holding anything down. Everything was coming right back up. So I knew there was no way I was gaining 50 pounds and so I knew there had to be a problem. But he kept saying no, no, no, this is normal. And so I listened to him.
Speaker 1:So all that high pressure? So here's the pathophysiology for folks all that high blood pressure and fluid overload. It doesn't just happen in the nose. So, former labor and delivery nurse, that's how you tell the nose flattens the nose. Sometimes you don't notice it, and then all of that extra fluid and pressure also tears up the filtering unit of the kidney. Yeah, yep Christina. I.
Speaker 5:I just, you know, hi, I'm a little late and I just want to introduce myself. My name's Stephanie and you know it's crazy. Just hearing your story I feel very heard. Um, I went through a very similar situation during my pregnancy and I just gave birth last summer, you know. Luckily I'm doing well and I'm recovered, but during that time I can't imagine what you were enduring and being so traumatized by not even knowing that your baby's not inside of you anymore. I just really take to that, yeah.
Speaker 2:It was really hard because, um, when I did get, when I met up back with her after I was at the hospital and she was at the hospital for months I didn't think she was mine and I remember thinking I, after a couple of days of, like, taking care of her, I was like, oh my gosh, I got to watch this kid forever. And I remember there was no connection there. And yeah, it was so hard. But after time she started doing little quirks and I was like, oh okay, wait a minute, she's mine.
Speaker 3:And then I fell in love with her, you know, and yeah, but so Make sure you tell them about the bucket on the side of your bed, basically.
Speaker 2:Oh, I will, Don't worry, I'll get back. So, um, so I was at that hospital and they didn't know what to do with me. So one day the nurse came in and she said hey, we don't know how to help you. They had me doing enemas every two hours. Me doing enemas every two hours because they they didn't even like know it was toxemia or preeclampsia, they were just guessing. And they so literally every two hours.
Speaker 1:so they thought it was your liver.
Speaker 2:I don't know what they thought it was. They thought I could somehow get the fluid off through enemas, but it didn't do any good, it just tortured, tortured me even more. And so one day the nurse came in and she says we don't know what to do with you. You need to leave. And so I was kicked out of the hospital in my gown. And the really crazy thing is that couple of weeks that I was at that hospital, it's crazy to me how our minds we come up with solutions and I couldn't see anything. And so in my mind the lights were off. And so I kept telling them why don't you turn the lights on? And they kept saying the lights are on, they're on, christina, they're on. And I thought in my mind, I thought there was some type of a natural disaster that happened and they didn't want to tell me that I had like lost everybody I loved or something you know. And so in my mind I was thinking, oh man, they're going to tell me something eventually. But I thought there was no power.
Speaker 2:And the day I left the hospital, I left in my gown and I walked outside with my mom and I could feel the sun on my body, and I stopped and I said, mom, is the sun out? And she goes oh yeah, honey, it's a beautiful day, the sun is up in the sky and the sky is blue. And she starts explaining it to me and I said, oh my gosh, mom, I'm blind. And she was like, I know, honey, and I was like, and that's when it all just kind of was like, whoa, the lights weren't off. The lights are off in your head, you know. And that was a big moment for me.
Speaker 2:But I went home and that night I had more seizures in my bed at home and I got taken by ambulance thank heavens to a different hospital At home and I got taken by ambulance thank heavens to a different hospital.
Speaker 2:Thank heavens, thank heavens, yes, thank heavens. And the interesting thing is, during these seizures they gave me the highest dose possible to pull me out of these seizures and they actually told my mom and my dad there's nothing else they can do. If I didn't pull out, then they couldn't help me anymore and I bit my tongue off and so I had this blood coming everywhere and my mom says it's probably one of the scariest moments of her life, because I was just seizing and blood going everywhere and they just they couldn't do anything to help me. And so when I got to that hospital I pulled out of those seizures, thankfully, and they called in my nephrologist and he came in and almost immediately he was like you got toxemia, we need to get this fluid off. And so he put an IV in. He put me on IV Lasix and they literally put a Home Depot bucket next to my bed and I had a catheter into the bucket.
Speaker 1:I lost 97 pounds in one week and the following week I lost 36 pounds so think about all that fluid, not just tearing up the kidneys, so the and the thing that that you know most people when their kidneys fail, it's also your heart. Your heart has to. Your heart was basically, I tell people imagine a heart with little legs on a treadmill walking along and you put on 100 pound, 130 pound backpack. After a while the heart says forget you and the kidney.
Speaker 2:So you are a tough, mama, I will tell you, the heart's gonna come into play. But so so while I was at that hospital, my beautiful baby girl was life-flighted to a different hospital and they gave her a co-op to me bag and a stoma, and so she came home from the hospital. We actually I got out of the hospital like two days before she did and so we both went home together and it was the best thing ever because my amazing mom and my dad I moved in with them because my daughter's dad we were 22, we were babies and he couldn't handle it, so he bailed.
Speaker 2:And and honestly I don't. I think I might've bailed if I could have too, you know. And so I don't blame him to this day and I truly I actually thank him a lot because he helped me. Not dwell on what I had just gone through, and I'll tell you about that in a sec. But so when Tyler came home, she had a colostomy bag and so, thankfully, my mom and my dad they did so much to help me and, the best thing, it was one of my favorite things ever. But whenever my mom would change that colostomy bag and Tyler would start crying, her abdomen would flex until it would shoot liquid out, and so my mom kept getting shot in the face by my daughter's stoma, and I thought that was the best thing ever In my mind. I was like my mom's getting poop in the face, and that made me so happy for some reason at the time, but again, being young.
Speaker 2:But so so I moved in with my parents.
Speaker 2:I actually slept on my sister's bedroom floor because they had already downsized by the time I moved out, so I slept on her floor in a blow up mattress and I had nothing.
Speaker 2:I literally I lost my job, I couldn't drive anymore, I lost everything and I actually got sued for custody and that's where I give my ex all the credit in the world Because I had no time to wallow or be sad about what just happened. I had to pick myself up and there was no way I was losing this little girl after I went through hell to have her. And so I picked myself up and I just went running and I didn't look back and I got. I went to court and I it was very scary I got told by the judge I didn't have a job and I had no way of taking care of her and he was going to take her from me if I didn't figure it out. And so I I stepped up. I stepped it up and I figured it out and luckily I got custody of my daughter and unfortunately her dad has not been in her life now for quite a while and they do talk, maybe every couple years, but not very good. So but, so.
Speaker 2:So after after all this happened, I knew I was going into kidney failure and so we planned, I went in and I got a fistula placed in my right arm here and we were all ready for it. And because I'm in Utah and I have eight siblings, I had all these kidneys walking around right, and so we had three of my brothers tested and one was not a match and the other two were perfect matches, and so they sat down together with my parents and they decided between them who was going to give me a kidney. So my oldest brother, brian, gave me a kidney on December 9 of 2008. And I remember I was, I was so young and I looked at things so naively. I remember joking with everyone and saying I got like a drive through kidney because I only had to do like a month and a half of dialysis and so to me that just seemed so easy. After what I had been through, I was like, well, hey, I can handle this kidney stuff, you know, not a big deal.
Speaker 2:I spoke too soon because I rejected that kidney and at about a year and a half I was in full rejection and I had a group of doctors sit me down and they were like hey, we're willing to try some medications, are you willing? And so I would have done anything to save my brother's kidney. I told him, hey, let's do whatever. And so I did infusions for just over a year. I did a year of chemo and I woke up one morning and a chunk of my bangs was on my pillow, so took my girls and we, we went and shaved everything off, but actually I jumped ahead. Okay, wait, I'm gonna go back, okay yeah, you're on this.
Speaker 2:I'm on my second kidney. Yeah, okay, it's a long story and sometimes it gets a little twisted, but okay. So my first, my first transplant. I rejected it and so they put me on high dose steroids and I did the high dose steroids for about a year and a half. I got the moon phase. I even had I had tears in my cheeks. And the worst thing is, during all of this I'm a single girl. I'm young, I'm watching all my friends get married, I'm watching them all have kids. They're going on trips together and I'm barely, like, barely, surviving, you know. And I went to a doctor's appointment and the doctor came in and he was training this young doctor, and this young doctor was an attractive man. And he comes in and he says, do you mind if he stays in here? And I was like, oh no, that's fine, you know. I was like, oh, that's fine yeah.
Speaker 2:So my doctor says well, you can see she's got moon face going on. And he says and he pulls my hair to the side and he goes and if you look right here, she's got a buffalo hump. I was like what's that? And he goes well, you got a big hump on your back. I had not noticed that. I had a giant hump on my back. And so I'm like is that what it's called? And he's like yeah, that's actually the technical term. I'm like who came up with that? Obviously not someone with a buffalo hump, because you would never call it that. You know what I love about what you're sharing, right, technical term. I'm like, who came up with that?
Speaker 1:Obviously not someone with a buffalo hump because you would never call it that.
Speaker 1:You know what I love about what you're sharing right now, christina, is that so many people. When our kidneys fail, it changes the color and the texture of your skin, even regardless of what you're describing we call Cushing syndrome, which happens because of all the high dose steroids we have to be on when we have a transplant. But even before that point our skin changes, our hair changes. People with kidney failure typically they do feel less attractive because of these changes. It's really difficult. Or you mentioned your fistula. I've had some patients you know going to the grocery store is difficult because they get looked down on for this thing. That's vain, and so people assume them and accuse them of being a drug addict.
Speaker 2:I have had so many times where people will come up to me and say, hey, I did it, you can do it too. Go get help. And I'm like help for what? And they're like well, your arm and I'm like dialysis. And they're like, well, your arm and I'm like dialysis. And they're like what? And they're like don't you do drugs? I'm like no. I don't do drugs.
Speaker 2:I do dialysis. So yeah, it is one of those things and I think I've been very fortunate in the sense that it's never bothered me. I think there was one time where I had a catheter placed in my chest and for some reason I was able to see that and it made me feel less female and less attractive, and so there was a definite mind struggle with that one. I had a hard time coping with a tube coming out of my chest and luckily that wasn't there that long a tube coming out of my chest and luckily that wasn't there that long.
Speaker 2:But. But so I ended up. So I had my brother's kidney. We fought it for like a year and a half and it was really funny. There was one day where I was volunteering at my daughter's school and we were, it was Christmas time and we were making the little gingerbread houses out of the milk cartons and she was in second grade and there was a little girl that spilled a bunch of candy. So I leaned down and this little girl's helping me and she says I like your face. And I said thanks, and she goes is that hard or soft? And I said it's just a face. And she goes, oh and she goes. You look like Mrs Claus. And she goes. Oh and she goes. You look like mrs claus. And she gets up and runs off and I was like, okay, I'm gonna stop volunteering for a while. So after that I was like, okay, we'll put this moon face at home for a while and not scare kids anymore. But it it was.
Speaker 2:It was traumatic. You know, like I remember there was one time when my niece was in the hospital and I went to the hospital to go see her and I walked in the ER to find out where she was. And as I'm walking in, I get bombarded with nurses. They're just, they just come running. They're like come on, we got you, we got you. And I'm like whoa, whoa, whoa, wait, I'm just here to see my niece. And they're like oh, no, no, you need help. And I was like no, I'm on high dose steroids, I know I have moon phase. And they're like no, you need to be seen. And I was like really, it's okay, I'm in kidney failure, you know. And they would not let me go see my niece until they ran my vitals. And they were adamant like Nope, there's something wrong, you can't go in there. And it does it.
Speaker 2:It plays a lot of mind games and when you are already like a young female who, like I, gained a lot of weight having my daughter, and so I felt ugly, I felt sickly, I was broken, and so in my mind, who in the heck would ever want me again, you know? And and that was a constant in my mind for years and I just never thought I would ever be with somebody again. And I was okay with that, because at that point when I, when all this happened, they told me I had six to seven years, and in my mind all I'm thinking is I only get six to seven years to raise my daughter, and that's the only thing that mattered to me is I didn't care about dating, I didn't care about if I had tubes coming out. At that point it was just I want to be a mom and I want to experience as much of my daughter's life as possible, and that was my only goal. And so, after we realized that there was no saving that kidney, it was time to go start dialysis.
Speaker 2:And so I talked to my doctor and at that time I heard about PD dialysis, but I had no idea what it was. And so I asked my doctor. He said, hey, this PD stuff, can I do it? And he said, no, you're blind. Like you can't keep that sanitary. And I was like, yeah, you're probably right. Like I was like, yeah, I don't even know why I asked you, but yep, let's go in center. And so I went in center and I did five and a half years in center and it's funny how I say I did five and a half years, because it's like a prison sentence almost, but it was, you served the time.
Speaker 1:Yep.
Speaker 2:Yeah, I did, I did, I served that time, and what people don't realize is like you are on zero constantly. Yeah.
Speaker 2:And I was this mom, you know, and I did not want my daughter to to be raised with a sick parent, so I put her in everything, to the point where I put her in stuff that I don't even know what it was, and I just did it because she's like hey, mom, I heard about this parkour stuff, let's do it. And I put her in everything. And so my day, my average day, was waking up, walking my daughter to school a mile away, walking back home. And then I would have a. There was a nonprofit called the Ride that would give me rides to and from dialysis. They'd pick me up, take me to dialysis, I'd do dialysis, they'd bring me back home, and then I had to walk to my daughter's school again and walk back home and then say it's grocery day.
Speaker 2:Well, I can't drive, so I pull out my little cart that I bought off Amazon and we walk to the grocery store, we do all our groceries, you know, and then we walk all the way home. And then you get home and it's dinnertime. So then cook dinner, then we got to do homework, then we got to shower, and it was just. There was always something waiting for me to do it and I was on zero all the time and I remember, during that period of time, I remember thinking like, hey, I'm pulling this off, I've been to all her recitals, I've been to all her events. You know, I thought I was really doing good and I look back on it now and those five and a half years I don't remember. I remember the hard stuff. I don't remember any of the good stuff and like, like, my daughter started kindergarten and I know I was there for my daughter's first day of kindergarten but for the life of me I cannot tell you anything about it.
Speaker 1:I can't remember. Can we pause there for a minute, because I think some people don't understand too, for for folks who who might be listening or watching, when you go to dialysis, a lot of times and it doesn't have to be this way but for a lot of People get foggy even in the treatment and whatnot, can you explain or can you share a little bit about? You know, just the energy level You're kind of doing that right now anyway, but the energy level you might have before and after a treatment.
Speaker 2:Yeah, so I always like to tell people when you go in centers, like in these dialysis centers, they are working their butts off to get us in and get us out. There are so many of us that they need to treat and so they are going as fast as they can. They're running that machine as fast as they can.
Speaker 1:And they have four hours. Four hours to do what your body was doing in 24.
Speaker 2:You got it Exactly, and those four hours, though, have to last you sometimes 48, sometimes 72 hours, and so, after you're done, you've had pretty much every bit of fluid sucked off of you. You're leaving dehydrated. You know cause you have to be, because anything you drink stays on you, and that's what people don't realize.
Speaker 1:When you go into kidney failure your kidneys they produce your urine, and so when you're in full-blown kidney failure, you stop urinating, and so when you and two some people continue to make urine on dialysis for a while Hemodialysis eventually they'll make less and less and so sometimes people get confused because they say I'm peeing. I'm peeing a lot. But even for folks who do continue to create urine, it's not pulling off those toxins and eventually, on hemo especially, they quit making that urine altogether and that's why they balloon up. Yeah.
Speaker 2:See, I had to have my brother's kidney removed because I rejected it so well. Yeah See, I had.
Speaker 3:I had to have my brother's kidney removed because I rejected it.
Speaker 2:So well, yeah, and when I have that removed, I went to zero function overnight. Zero.
Speaker 2:Yeah, yep, yep. And so I was fully, I was living on dialysis, and so there was. I was not allowed to miss a day, I was not allowed to skip any of those things you know, because my life was on the line and I had to take it serious. And I did because I really wanted to be a mom as long as I possibly could. And so we did that for five and a half years. And after those five and a half years, I got that incredible phone call. And so at this time I'm sure you guys remember I said I had two perfect matches in my brothers.
Speaker 2:Well, since they didn't know exactly what strain of nephritis I had, they were hoping that maybe I only rejected because it was a living donor, and so we were hoping that maybe a cadaveric transplant would be successful. So I had done my time, I'd done my five and a half years, and I went down to get myself a second kidney transplant, and that was May 7th of 2016. And we decided, like we were done, having our life on pause. And it was so cool because shortly after my transplant, in December, I, for Christmas that year, my daughter got some luggage and inside the luggage were tickets to go to Disneyland. And we flew out the very next morning and we went to Disneyland just the two of us. It was our first vacation ever and it was amazing. You know like.
Speaker 2:I decided yeah, I decided like I'm taking my life back and, believe it or not, I decided I was going to start dating and my beautiful 10 year old girl I I had her check my Facebook messages and so she's reading my messages and she's clicking on the phone and stuff. And I'm like, so is there anything on there? And she's like, oh yeah, mom, you have a date on Friday. And I was like, okay, wait what? And I was like, okay, wait what? And I was like, what creep, are you talking to Tyler? Yes, and so I have her read me these messages and this guy sounds pretty nice. And I'm like, whoa, maybe I will go out with him. And so I talked to him on the phone a couple times and I was like, yeah, I'm going to go out with this guy.
Speaker 2:And so the day of our date he calls and he says, hey, I'm so sorry, but my daughter, she really wants to go with us tonight. And I was like, okay, I'll bring mine. And he's like, really. And I was like, yeah, we'll both bring our daughters. And it was incredible, as soon as we got in his car, it was like everything. Like every night I sat by myself and cry, thinking no one's ever going to love me again. I'm never going to be normal like anybody else. I'm never going to have a partner. All those nights like that day, it shattered all of it and I just knew this.
Speaker 3:And I'm just thinking, oh my God, this freaking hot chick is going on a date with me. She's so funny.
Speaker 2:Oh my gosh. But yeah, like as soon as I met him, it was like we just came together. His daughter was this beautiful gift of a child that I never thought I would have, and so I had two beautiful girls, you know, and I have this amazing man, and it was like it was like everything I ever wanted was coming true, my life was finally happening, and then I found out I was rejecting again, and that time I. That's when I met with a group of doctors and we decided we're going to try to fight it. And that's when I did the chemo group of doctors and we decided we were going to try to fight it. And that's when I did the chemo, and so I took my girls Yep, so I did chemo for just over a year, and me and my girls went, and I did the pink haircut, and so I cut it to where it was like a small spike and dyed it purple. It was a really bad look. Oh, it was such a bad look, though, I had sympathy hair loss too, so he says.
Speaker 2:He says ever since that day he's not been able to grow hair. So you know. But so so you know, like me and my daughter learned early that being sick is hard and you're gonna have some really sad moments and you're gonna feel alone a lot, and so, whatever you can laugh about and joke about it, you have to be able to do that Like with the moon face. Me and my daughter came up with FFS and people would tell me they'd be like, oh, are you okay? And I'd be like, don't worry, I have FFS, but you can't catch it. And they'd be like FFS, it was fat face syndrome. And they'd be like FFS, it was fat face syndrome, right.
Speaker 2:And so we tell people oh don't worry, I have FFS, and then we wouldn't explain it, though, and people are like FFS, like what is that, you know?
Speaker 2:and yeah, and I remember there was one time where when I, when I very first started dialysis, they infiltrated my entire arm and so I had a bruise.
Speaker 2:My whole entire right arm was a bruise and I thought that was the coolest thing in the world at that age. And I was at the grocery store with my dad one day and my dad is like he's like, he looks like a biker, he's got the long mullet and he's got the big beard. He's this tough guy. And so I'm standing with him, we're looking at like tomatoes, and I look across from me and there's this lady who's looking at me like are you okay? And so I kind of looked down and I see my dad and I look back at her and I realized that she's asking me is he hurting you? And so me, being the daughter that I am, I said shh. And I pointed like he's right there, shh. And so my dad looked down and he sees me pointing and he hits me, and so I go, ah, and I like act like he just like tortured me and then it couldn't happen anymore.
Speaker 2:I just started laughing and the lady was like oh my gosh. And she like stormed off and my dad was like I'm never going anywhere with you again.
Speaker 2:And I just told him that's, that's me making up for 18 years of you throwing crud at me but, I, yeah, and so we kind of made that our mission is anytime something seemed unbearable or like I couldn't get through it, we made it funny and we found a reason to laugh about it, yeah, and so I truly believe that laughter is the best medicine and if you just embrace that, you can get through anything. And that's that's what I've the 20 years that I've been sick. That's what I have been living on is just make it funny.
Speaker 3:And I think that's, I think that's why we meshed so well too. One, because I mean just her story up to now. I mean it's just jaw dropping and I was a single dad at that time and I knew how hard it was without all that medical and it just it was just phenomenal seeing this woman, one freaking hot but two, having to deal with all that she's had to deal with. Yet she's just smiling and happy. And I had a handicapped sister growing up and my mom, she would do the same thing, and so we were kind of I wouldn't say we were well, yeah, plain and simple, we were made for each other.
Speaker 3:Because I am sarcastic, I joke all the time, and the best times is when she's going in the hospital, because every single one of you nurses are saying right now oh, she's so great, she's so wonderful. And I walk behind them, I go, oh, that shit gets old, hold on, you know. So we're just sarcastic and my thing is, especially when she's in the hospital or she's doing her infusions and I credit the infusions for us getting married and getting together, because all we would do is sit and talk. We would sit and talk, we'd joke, and she has every person in her life right now, telling her that she's going to die, and I'm like hell with that. What do you want to do? Name anything you want to do, do and we'll do it. So we went up to you know, we'd start camping, we would start. She would want to drive again, so I'd go in the mountains, go in my, in the driver's seat and hold on for life your life.
Speaker 2:Yeah, we always like to say you haven't lived until you rode on an atv with me and you are all invited I'll I'll climb on okay, but we had the same attitude when she was starting dialysis is.
Speaker 3:this is not going to stop. We are going to have the time of your life.
Speaker 2:If God forbid you die doing all of this, it's going to be laughing and smiling, so but so we did infusions and it was fun because I did infusions with his mom and I would sit and chat with her and his dad took me at times my mom and dad and so I really did. I got so much time with the people. I love to just sit and talk and it ended up like me and Mike would joke and say they were our like dates. We had our dates in the infusion center in the hospital and we usually I would get him some cookies.
Speaker 2:You know, and he would eat the Laura Dune cookies and I would get him some cookies, you know, and he would eat the Laura Dune cookies and I would sit over there and drink some apple juice or whatever, and we turned lemons into lemonade. You got it. You got it and almost to the point where, when we decided that this was something we couldn't do anymore, Mike was kind of sad and he was kind of like, well, what are we going to do for dates now? And I'm like let's go on real dates.
Speaker 1:You know, take me out, dang it. I'm sure your dates were a whole lot cheaper after that.
Speaker 2:Oh, yeah, yeah, A whole lot more fun too. You got it. You got it Exactly. Yeah, those infusions were not that fun, but so after that we knew that that kidney was going to go. And so that's when I was like, okay, Mike, we got to do our homework, I can't go back and center.
Speaker 2:And you were talking about the brain fog, and it's very hard to describe the brain fog, but I always say it's the dialysis zombie. And you truly are just a zombie. You're going through all the motions in life, but your, your brain, almost sways different ways. So you'd be right in the middle of something and you're like, oh, I'm tired, and it's just, your brain wanders and it's something you can't control. And so I told Mike I can't go back to being that zombie Like I can't control. And so I told Mike I can't go back to being that zombie, Like I can't do that.
Speaker 2:So I started looking into PD and so I went dialysis center shopping and I went to five different dialysis centers and every single one of those doctors told me no, I couldn't do it, I was blind, I wouldn't be able to do it. So I went back to my doctor from when I was 12 years old, back to my doctor from when I was 12 years old and basically I I made him help me. I told him please, please, I'm going to do this to help me do it safe. And I broke him down and he said okay. And it's funny because to this day, everybody gets trained by their nurses, but I was trained by my doctor. We actually sat down together and we came up with tricks and I was so lucky that that doctor thought outside the box for me.
Speaker 2:And we all know you have to make a sterile connection with your line, and so you have to be able to line it up every single time. And I can't do that, I can't see well enough for that. So we came up with I would hold the line and then you put your pinkies together, just like that, and then you roll it and it lines up perfect every single time. And so I was able and this was very important to me I did not want this boyfriend that I had just gotten this life. You know that I always wanted. And in my mind I'm thinking, oh my gosh, I'm going to start dialysis and he's going to, he's going to bail on me, cause that's what the last one did. You know, as soon as things got a little rough, they were gone. And so I'm thinking I have to be able to do PD on my own, because if I make this any trouble for him, he's gone. And so I went home and I did PD 100% on my own. I set it up, I broke it down, everything on my own, and PD gave me life. Pd, oh my gosh, like you guys have no idea what it's like to feel so awful and to feel like you're never gonna feel normal again. And then normal happens and it's, it's everything, it was everything.
Speaker 2:We started going on vacations together. We bought some property in our canyons here in Utah and it was insane. Mike went and he got solar panels and hooked it to two car batteries and an inverter and we did dialysis in the middle of nowhere at our property, no power. We did dialysis and we kind of realized at that moment we're not letting anything hold us back anymore. If we could make that work, we could make this work anywhere. And so we did.
Speaker 2:We started living, we started flying places. I was taking that machine with me. I even did dialysis on the side of the freeway and I know that sounds terrifying us on the side of the freeway, and I know that sounds terrifying. Yes, yet I had a manual and we were stuck in traffic and I was full of the fluid and I was starting to absorb it and I was like, if I absorb all this fluid I'm going to be way fluid overdose. So we had to pull over and again. Luckily, michael has ocd and his brain it works in a way that's just incredible. And he packed this little bag and it was this tiny little bag, but it had-. The burrito.
Speaker 2:Well, this one was before the burritos.
Speaker 1:This was before the burrito, okay.
Speaker 2:Yep, this was a little blue bag and he put absolutely everything you need in it to have a sanitary exchange on PD, including. He went as far as there was a piece of cardboard in there that you open the flaps up and I put it over the lines when I was connecting so if a bird flew by, yep, yep, he covered everything. And so we pulled over and it wasn't ideal, but we made it work. And so I did dialysis on a motorcycle on the side of the freeway and you know I'm here to talk about it. So that's something.
Speaker 2:But yeah, yeah, we just I got married on PD and, like that 22 year old girl that was told six to seven years, marriage was never in my mind, never. A honeymoon was something I never even thought of. I didn't even go there because it was just never going to happen for me. And I went on a honeymoon and I did PD on my honeymoon and I I loved every minute of it. I got to be like everybody else and go, feel normal and have a honeymoon, and that was everything. And so I did PD for three years and we lived up we did everything we wanted.
Speaker 2:And after those three years, we noticed that my catheter was starting to come out. And so I went in and they're like, okay, well, we're gonna have to go pull that and place the new one. And so that's when I had heard that you could have a stomach catheter. But you could have it. Oh, is that the picture? Yep, there it is. Yep, that's on the motorcycle. But I um, what was I saying? I forgot, I got distracted.
Speaker 1:Did you get a pedicapher put in your chest?
Speaker 2:Yes, yes. So I heard that you could get a pedicapher in your chest. So I had that one pulled and I had a pedicapher placed right here, and that's the one that I had a really hard time with. Just because it was, it took away what I thought was my femininity. It took away what I thought was my femininity and for some reason I had never had anything on my chest cut open or any scars or anything, and so that was hard on me mentally to kind of cope with that tube coming out.
Speaker 2:It was something that I didn't know I would have a problem with, but I did, and I had that tube in and I went back in center and I was in center for about two weeks and we tried to use the new catheter and nothing would go in or out. So I went for a bunch of tests and they're like everything's perfect, we don't know what's going on. So we had to actually go in and when the doctor went in he noticed that all of my intestines had knotted around that catheter and it was not like anything in or out.
Speaker 2:So he pulled everything apart and he he fixed it all. He loosened the catheter and closed everything up and he said, hey, no guarantees that this is going to stay, but we'll have to see. Well, next morning I woke up and I was in horrible pain. So I went to the hospital, we went back in, he had to pull it and I was diagnosed with abdominal adhesion, which I'm sure most of you know what that is. But for people who don't, it's when you have so much scar tissue in your abdomen it kind of creates like a sticky substance and it makes your intestines stick together and so you, literally your intestines, will make knots and you've got to work through them and it is extremely painful and it's. It's one of those things. If you don't keep up on it every day, it'll get the best of you.
Speaker 2:But at that time they told me I can no longer do TD because of that abdominal adhesion, and so I'm in center and I'm thinking, uh, I want out of this center, I am a zombie, and I already was starting to get sick again and I was already starting the recovery time and we're talking, I would do dialysis and I felt awful for eight, nine, 10 hours afterwards I felt like I had just been been rang out and thrown away. You know, just awful. And you come home and you recover, and then, by the time you start feeling better, it's time to go back again. And then you do it all over again, and so I wanted out of there.
Speaker 2:And luckily I had heard about home chemo about six months before that, and so this time I talked to Mike and I said hey, I can't do this on my own. Do you want, to like, can you help me? And he, he was like, oh yeah, yeah, I'll help you with this. And then I was like you know what? I don't want to do this to you. And Mike, are you still on?
Speaker 3:Yeah, I'm on.
Speaker 1:What'd you say I know what he wants to say. He wants to say do-do-do-do-do.
Speaker 3:Well, I had to explain to her that I already was, or that she already was. You know, she was already putting me through this. I was the one killing her infant dialysis. I was the one holding her hair while she was puking, so she was trying to protect me. But was the one holding her while she was puking, so she was trying to protect me. But if we could make her healthy, oh, hell, yeah, we're going to do that.
Speaker 2:Oh yeah, so that incredible man that was just talking switched to night at work and he literally went to work all night long, woke up in the morning, we went for training. He would sleep three to four hours each day during that time and he just kept going and he did his homework, he went online, he watched every video he could find.
Speaker 1:All your dialysis supplies? I'm assuming Yep.
Speaker 2:Yep, yep, pretty cool, huh, that was actually, that was actually.
Speaker 3:Is that the wall? Yeah, that's her advent calendar that I made.
Speaker 2:Oh, that was the year that I had gone back in center and I was just feeling so awful and it it caught up to me so quickly. I was so surprised. Within two to three weeks I was feeling like that Bobby again, and so I came home one day and he had taken all of the dialysis boxes that we had used and he cut out the sides and he wrapped them all and he put gifts in every single one of them, and so he made me an advent calendar that was my entire wall and it was all Christmas decorations. Because I am a Christmas like nut. I love decorating for Christmas. If there's something that sparkles and lights up, I need to have it. And so every day I would go to dialysis and I would come home and I got to open one of those and get a gift. Wow, yeah, yeah. And that's a thing Like this man, like I'm a very lucky lady, are you not falling in love with Michael and Christina?
Speaker 1:If you're not, you don't have a pulse. That's all I'm saying.
Speaker 2:Oh my gosh, oh my gosh, you're so cute, but so so, yeah. So we went for three weeks and trained and our goal was to be home on Christmas Eve of 2021. And we met that goal, and Christmas Eve, every year I have my family over and we do a huge Christmas dinner, and so I had my family over, just like before, and I did dialysis right at the table, with everyone. And the coolest thing ever happened, because up until that point, like I would have had 100 kids if they would have let me. But I learned really well, and so I didn't make that mistake again and have another one, and I stopped with just Ty.
Speaker 2:But my nieces and nephews I always joke with my siblings and say they're taking care of my babies, for me, and they are all my additional babies and it would always upset me because if they had a recital or anything during dialysis, I had to miss it. And so my brothers and sisters would be like, oh sorry, aunt Steena can't come, she's got dialysis. Aunt Steena will feel good. She did dialysis and dialysis was betrayed as such a negative thing to all these kids, you know. And that day, for the first time ever, dialysis was what it truly is. This is a life saving device. We are the only organ that, when it fails, we can stay alive.
Speaker 2:And how incredible is that. How incredible.
Speaker 2:Yeah. And so the coolest thing, the coolest thing, the little kids we have them push the button on the blood pressure cuff and then they would scream and dance saying I just saved Aunt Steena's life. I saved Aunt Steena's life, yes. And the older teenagers we have them pull the heparin and we showed them how to measure it out and everything, how to keep it sanitary, and so they helped with that and everything, how to keep it sanitary, and so they helped with that. And literally my entire family got to see that this is what keeps me alive. This amazing machine is allowing me to be here with them, and so dialysis, truly for the first time ever, is what it is. You know, this incredible gift.
Speaker 1:Well, and the fact that now you've had the power to, to have dialysis, to do dialysis on your terms and really truly live life not live to dialyze, but to live your life. We call that thriving on dialysis. Over here, that's it. Most people don't know that the power of home dialysis truly and being able to live life on your terms instead of living around a dialysis schedule is so impactful.
Speaker 2:You're so right. I like to say I don't live to do dialysis, I do dialysis to live, and there's a huge difference. When I was in center, I was literally just surviving. What is that picture of?
Speaker 1:Dear patient, I look at your boobies during treatment from your dialysis text. Is he not so inappropriate Way?
Speaker 2:to go Michael, and again, like how I tried to make everything fun and silly, he came into my life and he was the exact same. He started joking with me and he embraced it right with me and I love, I love that and I think I don't know how I got so lucky to have that man in my life, but it's amazing, but so um wow.
Speaker 2:I can't see what the pictures are, but so, um, so I, we went home on chemo and when I first went home we did four days a week for three and a half hours. And the crazy thing is, when I went home on PD, I was floored by how much better I felt and like all the things I thought would be better happen, like I wouldn't have to go. Much better I felt and like all the things I thought would be better happen, like I wouldn't have to go out in the cold and it's convenient, I can just do it in my bed, you know, I can sleep through it and have my whole day free. When I went on hemo, I was floored that I felt even better than I did on TV. Yeah, I went back to the gym and most people don't realize like working out is a chore unless you can't do it. When you can't work out, all you want to do is feel strong enough to be able to work out.
Speaker 2:And so when I went back to the gym and started working out, I got so much back. I felt like I was living, truly living, and chemo just changed my life in even more ways than PD did and I didn't think that was possible and we started traveling. Michael decided he came to me and he says Listen, I'm asking a lot of questions online and they're kicking me out of these groups because they're telling me hey, you can't do that stuff on dialysis and you're giving people false codes and you can't do that. And so he kept getting kicked out of these groups and he said I'm going to start a support group and I was like all right, you do that, but I want nothing to do with it.
Speaker 1:He said this is all you, yep, go home, you're next.
Speaker 2:Exactly right. So our machine is part of the family. Now we decorate it for holidays and it comes with us everywhere and you know she's just part of the crew.
Speaker 1:But, but so again, what was I saying?
Speaker 2:You take it with you everywhere. Yeah, yeah, so we take it with us everywhere. But so I did that four days a week, three and a half hours, for we did that about a year. And then I heard about nocturnal home hemo, and so of course I want the biggest and the best of everything. So then like, hey, mike, what do you think about nocturnal? You know, because PD, you could sleep through it and I love that I had my days free to do whatever.
Speaker 1:I wanted Slower and longer. Dialysis is the most like how our kidneys are designed to work anyway.
Speaker 2:You're so right. So I always like to tell people people with healthy kidneys get 168 hours of dialysis in a week. When you go in center, you get between 9 and 12. That right there is shocking. That is why you feel like a zombie. That is why you're mentally not all there. You're not getting enough dialysis to thrive. You're getting dialysis to get you back to dialysis and that's it.
Speaker 3:Nocturne has scaled me a lot because I take a sleeping pill. I worked a very strenuous job and it was difficult. I'd be hanging off an aircraft just sanding my butt off coming home, having to do dialysis, and that's when we came up with the burritos where I would be so exhausted coming home and I would have everything lined out to help me go step by step by step, and the fact that we could do this while we were sleeping.
Speaker 3:Like I said, it was hard, because am I going to be able to wake up? I take a sleeping pill and all that stuff, and that was the biggest fear. But after you train on the machine, it was amazing how quick we could address those alarms and that went away after maybe a day or two, because it just became so easy.
Speaker 2:We always joke about three minutes and how quick three minutes went before you're going to clot.
Speaker 3:And so what do we say now, mike, I can almost go make a sandwich, I can put my feet up, because there's no alone that we can't address now. So I mean, dialysis is, I hate to say, but simple.
Speaker 1:And you know, I think that's so important to share because for many people you know, for our folks that we work with as they get close to dialysis, you know, as we gently start to talk about all the options, some of those you just can't imagine yourself doing. It's so scary, it's so far away and overwhelming. Until you know you know being able to trust the team that's going to train you, they're not going to turn you loose until they know that you can do this and you don't have to. You know you're going to feel comfortable before you. You're independent as well. Everything once upon a time was hard for us. It only becomes easy when we try it. I think that's a that's a really important message to share. That you know, just to be open and curious around, gee, I wonder if I could, and if I could do dialysis at home. Gosh, just to be curious around, that, I think, is so powerful.
Speaker 2:I always like to say, like, what did you do for a living? And how did? You learn how to do that. You were trained, you can be, trained on dialysis as well. Yes appointed.
Speaker 2:Take the time, you know. Take the time to listen to your nurses pick their brains, you know. Do your homework. This is your dialysis. Go home, look these things up. Make sure when you go home you are ready to go home and do not, if you start skipping steps, pull back and say I need to go back and center because you have to be able to know you need discipline. You do it the way you're taught and anything else is just not acceptable.
Speaker 3:Yeah, well, and it shows, and that's the thing too is just planting that seed of doing home dialysis is so important. I tell them, no matter what, go and join a support group, because at that moment they think they're alone, they think that this is the only thing and it's only happening to them. And the cool thing is is that, whatever they have going on, I can now find hundreds of people that are going through the exact same thing, and our group kind of just exploded it's over 6,000 people now. You can see that card. Now you can see that card. Go, follow us, because I like to say that we simplify dialysis and we find shortcuts and hints on how to do all of this stuff, and we're making videos all the time. And, yeah, I love watching your videos.
Speaker 1:It's so inspirational. I guess people an idea of what this might look like in their lives as well, and I think the idea of the support group is so important. You know, as nurses, we educate people all the time. It's totally different, wouldn't you agree? When you hear from somebody who's living it, you can read it in a book or you can live it and the education is wildly. It's different, it's a different level.
Speaker 1:The marriage of the two is so empowering and I just can't thank you enough for sharing your story, the hope that you bring to people. I love the fact that you didn't say no to instilling not false hope, true hope and inspiration that people can claim their lives back, and to date, we still in this country. There have been some incentives put in place over the last four or five years to try to increase the number of people who are offered home modalities, and it's increased by 50%, but that's taken us from seven to still only 14%, and so there's a lot of reasons for that. I think the more people can see people like you living here. I love watching you guys, cause you go everywhere.
Speaker 2:Well, I'm not done with my story yet. I still got more. Oh, get better, yeah. So I went home, I started nocturnal and I started feeling like a billion bucks. And when you're in kidney failure, there you have these little things that happen. You're constantly at the hospital. Something small here go get a fistulogram, go get this. You know, you're constantly going to the hospital and then you're at the hospital. So you get sick because other people are sick at the hospital, yeah, because you're in the Petri dish because other people are sick at the hospital yeah, because you're in the Petri dish.
Speaker 2:Yeah. Well, since I've been home, I noticed my hospital visits. They started going away. I started getting healthier and stronger and now, like, if I get sick, I'm sick like everybody else. I'm sick a few days and then I'm back in life. I'm not down and out for two months like I was before. I'm not back in the hospital yes, and down and out for two months like I was before, and not back in the hospital, yes. And so when I was in center I had my graft was right here and it actually ended up getting infected when I was in center and so that infection spread to my heart and it ate a hole in my heart.
Speaker 2:So November 30 of this last year I had open heart surgery and I got a brand new cow valve placed and when they went in there which this kind of goes back to what you're saying with all that toxic fluid that I had on me when I was pregnant, when the doctor went in there, my pericardium your pericardium is kind of a sack that sits around your heart and there's just a little bit of fluid and it's just a little extra protection for your heart. You don't have to have it, but everybody does. Mine had completely calcified and so it was squeezing my heart, yeah. And so the doctor said he basically had to peel my heart like a potato. He had to sit and just slowly cut all this calcification off of my heart. I had to sit and just slowly cut all this calcification off of my heart and he did it. He did it amazing and, believe it or not, I came out of surgery and it's funny because me and Mike joke about it.
Speaker 2:But I came out of surgery and I was up and walking and I was like I kept talking to him. I kept trying to talk them into letting me go home. I was like you know, I could do these infusions at home and I could do this at home. And if you just want to send me home and they're like, no, you're not going home yet you just got open-eyed surgery and I felt like a million bucks after that surgery and I know for a fact, if I had been in center, that recovery would have been so long.
Speaker 3:Absolutely. And when she was in the NICU recovering she was slowly putting on weight because she wasn't taking off as much fluid. The machine was more brutal than what we could do at home. When we got home we were able to take off 20 pounds in three days because we just did back to back to back long nice treatment and she felt amazing. She felt better coming home just because we could do her care at home.
Speaker 1:I think it's interesting. If you ask providers if they had to do dialysis, would they do home or in-center, 90% of them say they would do home.
Speaker 2:You're so right 90% yep, yep, yep, Nope, you're totally right.
Speaker 3:For sure. Home, you're 90. Yeah, yep, yep, nope, you're totally right. Well, for sure. And and on this too, with on the care partner side, your life gets put on hold. Yeah, because you are caring for your loved one. I stopped when, when we started this dialysis journey, I stopped getting. I stopped applying for jobs because the I never knew when I would have to go home sick. I was on FMLA. My work was amazing, they worked with me amazing, but my life was put on hold. I thought I wasn't advancing anymore. But last year I was able to get a promotion. I became an engineer. I was taken off the jet. I am sitting at a desk now. I'm not sweating my butt off every single day. And last week I was taken off the jet. I am sitting at a desk now. I'm not sweating my butt off every single day. And last week I was able to get a promotion again. I am probably the most successful that I think I will ever be, and it's because of dialysis, I was able to interview better.
Speaker 3:I was able to translate all of this stuff that we do because of dialysis, and you can see how peppy she is. It's almost annoying. Well, you're a problem solver.
Speaker 1:You know you find a way or you make a way. You know what outcome you want and you figure out how you're going to make your life work.
Speaker 2:Yeah, this dialysis is like anything else. Of course, in the beginning you're not going to know what you're doing and you're going to run around like a chicken with no head, you know. But once you kind of start to grasp it, you start picking it up and we learned very quickly that, no matter what happens the absolute worst that can happen clamp those lines and be done. That's it. You know. Clamp the lines, you're done. Start treatment again tomorrow. Just forget that treatment, you know. And the most amazing thing happened to me and Mike we got some amazing news that we were going to become grandparents. Yep, that's right. I said grandparents On March 2, I became a grandma. So you remember that 22-year-old girl that was told six to seven years Grandma wasn't in my cards ever.
Speaker 1:Yeah, you were just hoping to make it six or seven years.
Speaker 2:Oh, and I have this beautiful grandbaby that lives with us, that every day I just get to cuddle and love, and now I need to see her grow up. I need to be with Mike forever, you know. And so my journey is not anywhere close to being over. I'm at five and a half years right now, being home. I did five and a half years in center, and the difference between me now at five and a half years and the five and a half years and keep in mind I was a lot younger when I was in center, but I feel incredible, I feel like it's, and I got diagnosed in December. So I finally got some genetic testing done and I got diagnosed.
Speaker 2:I have a strain of c3 globular nephritis, but it is a strain that's never been seen before, and so our doctors think that they might have a plan on how to treat it and possibly stop me from rejecting a kidney. So I am on the list again and I have 100% antibodies. So I'm a super rare match. Not sure if or when I'll get a kidney, but if I don't get a kidney, then I can tell you guys that I can be the mom. I want to be the wife, I want to be the grandma I want to be while doing dialysis at home, and that's everything Right now I'm getting worked up to hopefully donate a kidney to give her hopefully a better chance of getting one.
Speaker 3:But you can see that card that I have on the screen. I suggest you guys take a picture of it. I've already Facebook stocked a couple of you guys so I sent you guys invites. But we love nurses on there as well. You know, even if you don't participate, even if you don't talk on there, seeing the every day that happens is amazing.
Speaker 1:It is really valuable to hear the story. So I'm on a few dialysis boards and it's really impacted my ability to communicate with patients and our members that we serve, because you know it's different when you don't live that life. I think it's really important. The other benefit of sharing that we get and thank you so much for your time is that really to understand that journey, to understand what people are going through and why they have no energy, and the importance of the interventions that we can do, how we can educate and empower and inspire other people to help them thrive on dialysis. It is possible. People don't have to quit working. They don't have to give up their lives. Their lives are not over and I think that's really a message worth spreading far and wide. Yeah.
Speaker 2:And I always, I always like to say like, especially to all of you, like I always like to say when we're on dialysis, sometimes we get what I call nose lines. We can't see past our own nose because we are in pain, we are tired, we are exhausted, we don't feel like ourselves and so when we go into the centers, we're not always good to you guys and you guys get beat up by us and you don't get told nearly enough how important you are. But you guys, every single day you go to work and you change lives. You change our lives. You become our family. We truly love every single one of you and, like what you do is appreciated, and even if we don't tell you as often as we should, your patients love you and appreciate every single thing that you give up to be there for them and help take care of them. So, truly, for every single one of you, thank you for what you do.
Speaker 2:You change lives and it truly matters.
Speaker 1:All right back at you. It's an honor, it's a real honor.
Speaker 2:We need people like you and we are very lucky that you guys have stepped up and you truly have changed our lives and there's something about being on the page that kind of humanizes your patients and because you guys only get to see a certain part of us when we go in center, and when you go on that page you start to see that we are humans and we are.
Speaker 1:With lives and families.
Speaker 3:Yeah, we are humans and we are with lives and families, and yeah, your sisters and your brothers, and your mom and your dad, and we're everybody Absolutely Make sure, make sure to that you celebrate when people go home, because if you don't talk about it, what happens when somebody doesn't come back in a clinic? What do you?
Speaker 1:think yes, that's a that's really make sure, make sure you celebrate it.
Speaker 2:So yep, yeah, anytime. Like when I went home, everybody there probably thought I died because that you don't get told hey, why is so-and-so not in our chair anymore and you can't? They don't tell you because they hit that or they die.
Speaker 1:while you're dialyzing and you wonder, okay, when is it going to be my turn? I watched them come in and they yeah Great point.
Speaker 2:My very first day of going to dialysis, I met this older woman. Her name was Jean and I called her Mean Jean, and she was so cranky all the time and she was just beautiful. She became my family and to the point where I would go to her assisted living center and I would help tuck her in at night, I would fill her pills with her, I would do her laundry. Her daughter was same age as me and her and I, together, we helped Jean with everything we needed. And that little woman, she crawled into my heart and after I had been on dialysis for about five years, I went to dialysis on Saturday, and Sunday was my birthday. I went back on Monday and Jean didn't show up on Monday and so about I kept asking him where's Jean, where's Jean, what's going on, you know? And they're like, oh, I don't know, I don't know. And then about halfway through treatment.
Speaker 2:The social worker came and sat down next to me and handed me Jean's obituary. And Jean died before she died and I'll cherish that blanket the rest of my life. But I was so broken when I lost that woman.
Speaker 2:I was hopeless At that point. I had been doing dialysis so long. I was such a zombie. I was fighting for every single thing I could. I just I had no hope and I called the dialysis center and I said hey, am I anywhere close? And the lady told me hey, listen, it could be years from now. Like, calm down.
Speaker 1:Yeah, I think we have to be real careful about that message as well. We have a member that we work with right now and he was so discouraged when the nurse told him that Same thing you know it can take years for you, so don't get your hopes up was the quote that he said was said to him and how that just totally crushed him of any any semblance of hope that he had.
Speaker 2:Yeah, yeah, and with losing Jean and being told that on the phone, I lost all of my gusto to live and I I was contemplating quitting every day. And we're talking. I had this beautiful little girl, 10 years old at the time, you know, I had every reason to live. She didn't have a dad that could just step in and take care of her.
Speaker 2:That she knew Because he wasn't around you were it, I had every reason to live and I was contemplating quitting and luckily that happened in March and in May I got that call for a kidney and I don't know how much longer I could have gone and that I was truly hopeless and that's a scary place to be and now like. That's why I say like I'm at five and a half years now being home and I got all the hope in the world, you know, and I'm a different person.
Speaker 2:I am truly the person I want to be that's awesome oh look, you're getting a heart from your beloved, if you can't see that so oh, we're actually going to um Washington DC again next and we're going to go tour the White House, which is so cool. Yes, and we have now been to Capitol Hill probably six or seven times to talk to Congress.
Speaker 1:You were just there earlier this year, weren't you?
Speaker 2:Yes, we were. We were there in February.
Speaker 1:Yeah, I stalk you guys. I got an eye on you guys.
Speaker 2:Good, good, yeah, we are pushing home dialysis so it is available to anyone, no matter where you live, no matter your income, no matter your race. This should be an option for every single person. So if you are hearing this, like, call your senators, call your representatives, tell them how important home dialysis is and tell them that we need more financial assistance to pay nurses to go home and help people take this transition the right way and do this properly. So please, like, take a second, send an email, whatever, but just make a difference.
Speaker 1:Yeah Well, thank you guys so much for sharing your story of resilience, of power and hope. The power of hope, resilience, the power of humor is what I heard. The empowerment that comes with being open enough to allow yourself to learn a new thing when that's difficult and daunting and a little scary. That's where we really have our greatest triumphs and it's certainly shown. I was thinking the other day, as I was watching you in Thanksgiving Point, thinking about you. Know how many people I've worked with.
Speaker 1:On matter of fact, we have a member the other day who said, well, I don't want any part of that because you know I've seen people on dialysis and I don't want to ever look like that. When you watch you, when you look at you, christina, you don't see a sick person, you see a vibrant woman who's living and enjoying her life and I can't thank you enough for so many people who need that kind of hope. And before we, before we wrap up, I could thank you all day long for the work that you do. And please, if you you know, rewind or maybe Michael will put up the QR code again follow them and share with somebody who needs a little hope. But do any of the nurses have any questions or comments you want to share with Michael and Christina the blind chick? Yeah.
Speaker 1:Yeah.
Speaker 4:I don't have a question, but I just want to say what an inspiration you are, not only to us, you know, but to people going through. You know what you've gone through, you know or will be going through what you have gone through. So it's just it's. It's really nice to hear your story and, you know, I see your passion for what you guys are doing and that's helping others in so many ways. So I appreciate that.
Speaker 1:There it is. Thanks, mike, yeah.
Speaker 2:And we always like to say as a mechanic and a blind chick can do this, who can't do this?
Speaker 1:Right, love it. Sharing those stories is so powerful. Sometimes they tell people. I know a guy who's dialyzed while he was driving to work and now he can say I talked to a blind chick who dialyzed on the back of a motorcycle.
Speaker 2:Come on, baby, I sure did. Yep, yep. You just got to get out and get living. You know, life is short. Dialysis is not a death sentence.
Speaker 1:It's not. It's not the end, it's the beginning, it's what allows us to live. Thank you so much for sharing your time and your story, your inspiration. I can't thank you enough.
Speaker 2:So thank you for having us. Any other questions? I don't know if you guys see. I got one question for you Are you back on a transplant list? Again Weight list. I am. I am on a list, I have 100% antibodies, and so I'm a super rare match, and so I don't know when I'll get a kidney, and it's okay.
Speaker 2:I'm at that point where I know like we can handle this. I can, I can live this way and be happy. So if I never get a kidney, I'm good. Yeah, and I do. I do want to point out, though, that my, my beautiful daughter, at 11 years old, got diagnosed as a type 1 diabetic, and the day she got diagnosed was the ultimate, worst day of my life, because, in my mind, all I could think of was she's going to live my life, and that's exactly what I didn't want for her, and doing home dialysis and meeting people that have been doing home dialysis for 30 years gives me so much hope, because I know if I can do this, she can do this and it's only going to get better.
Speaker 2:So the future for dialysis guys, it's so promising.
Speaker 1:Yes, talk about the whack. Another time we'll talk about the whack. Yes, wearable artificial kidney. I can't wait for that puppy to come out. Yes, oh my gosh, you're so right, all right. Well, thank you all. Michael, thank you so much for sharing your story, thank you for sharing your beautiful bride, thanks for sharing your travels, love following you on social media and LinkedIn, and we'll talk again soon, I'm sure. Thanks again, all right.
Speaker 2:Thank you guys. All of you have a good day and thank you again for what you do. It matters so much.
Speaker 1:Appreciate it Bye, Bye guys.