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Our home dialysis adventures! We went to WASHINGTON D.C. then went to MAIMI FLORIDA, Christina was able to swim in the ocean! We became grandparents March 2 2024, Mersadies Gilchrist gave birth to Eleanor and SO CUTE, then our Vegas trip we decided to make it a roadtrip. So we went to ZIONS National park, Mesquite Nevada, Las Vegas for the NANT ( national association of nephrologist technicians ) we spoke and it was amazing! Michael Chambers, Dr. Michael Krause, Mary Margrot, Suzy Phillips, Michelle Carver, Terry Livhfield, and Clarika Ajaya. To just name a few but look these guys up so amazing! We stayed in Tropicana Hotel and Casino which is being torn down so we were one of the last people to stay there. We saw Keeli and her family and little Maddi!!! She is talking and sooo cute! Then went to Hoover Dam and did the dam tour and rode the dam elevator, I also walked all over the dam thing! You all might not know this but it is not a god dam it is man made dam. Ok enough dam talk. We then went to Williams Arizona and rode the train to Grand Canyon, I then drove to Bryce Canyon and decided I would take the Brian Head canyon highway 14. We got stuck in so much snow!! It was crazy how much came down. Then went to Bryce Canyon that place is amazing then home!
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Interviewing Marcelo Pena The expression “making up for lost time” is used in many different situations. Buckets lists. To-do lists. Rekindled friendships and long-lost loves.
But what if you spent decades of your life – from childhood in adulthood – feeling sick, and unable to live a fulfilling life? And what if, after living that way all those years, you suddenly found something that could help you feel better, be more independent, and enjoy the things you’d been missing?
This is a quick glimpse into the life of Marcelo*, a 35-year-old home hemodialysis patient from North Carolina doing everything in his power to make up for the time he lost to end stage renal disease.
Childhood Interrupted
Marcelo started his life like most kids. He was happy and healthy, enjoyed playing with his cousins, and attended grade school in his home city of Chicago. At 10-years old he got sick and went to his doctor to figure out what was going on. After some testing, they found blood and protein in his urine and immediately ordered a biopsy. Then, a short time later, on his eleventh birthday, he was diagnosed with Focal Segmental glomerulosclerosis (FSGS). FSGS is a disease that causes scar tissue build-up on the kidneys and can permanently impair their function. When Marcelo was 13 it was determined that his kidney function had declined and was now at a point where a decision had to be made, receive a transplant or start dialysis. That’s when Marcelo’s mother offered her own kidney. “My mother was my hero,” says Marcelo. “She gave me life twice. She said, ‘I’ll give him one of my kidneys and hopefully this will just all be a memory.’”
Sadly the kidney Marcelo received only lasted around 6 months, once again due to complications from FSGS and he had to start dialysis. First it was peritoneal dialysis (PD), which was effective but left Marcelo with what felt like almost no time for himself. “Back then the machines were different, and I had to dialyze up to 12 hours straight,” Marcelo explains. “That was my life for three years. I felt like no one was going through what I was going through. I felt alone for a very long time.”
In his late teens, Marcelo learned he could not continue PD and doctors prescribed in-center hemodialysis (ICHD) as the only alternative. That began a 16-year journey as an in-center patient. During that time, Marcelo experienced other health problems that almost turned deadly. And even though dialysis therapy kept him alive, he saw it as taking away from his quality of life.
“It was almost like I was sentenced to dialysis,” Marcelo says. “For 16 years it was a Monday therapy session, and then I’d feel tired all day and into Tuesday. When I felt somewhat OK, I’d go out for a walk or something, but the next day I had to start all over again. It felt like dialysis, dialysis, dialysis, nonstop. I was so depressed and on all kinds of medications and antidepressants, just trying to cope.”
It wasn’t until his thirties that Marcelo learned of another alternative to ICHD. A nurse at his clinic began telling him about more frequent home hemodialysis. Marcelo was in a dark place, and he needed a change, so he decided to try it. After his training was complete, he was able to do his therapy at home for the first time in decades. In addition to the physical changes Marcelo has seen and felt, he’s found several ways to make up for all those lost years. Since starting on HHD he has taken his NxStage machine to Disney World, Nashville, North Carolina, and Pennsylvania. He hosts a kidney health-based radio show on iHeart Radio and has an established presence on social media. He’s learning to play ukulele, writing a book, and is certified in yoga and meditation instruction. He also has a new best friend – a Boston Terrier named Benjamin!
SEEYA NeXt time! To send us a voicemail to ask a question, make a comment or to tell us about your medical journey click on this link! https://podcasters.spotify.com/pod/show/blindchickliving/message -
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Gabi has been a CKD patient her whole life. She was born with a kink in her ureters which caused one kidney to not form and the other to form partially. She was able to live the first two years of her life with the partial function before she went on dialysis. A month before her fifth birthday she received a living donor kidney from her father. Her father’s kidney lasted over a decade before she went back on dialysis abruptly in 2015. After doing all possible modalities of dialysis Gabi finally recieved her 2nd gift of life from a deceased donor 8.5 years later. She hopes to take this 2nd chance to help encourage & advocate for others just starting their CKD journey. SEEYA NeXt time! To send us a voicemail to ask a question, make a comment or to tell us about your medical journey click on this link! https://podcasters.spotify.com/pod/show/blindchickliving/message
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JANUARY 2024, update on Christina’s heart surgery, update on Christina’s kidney diagnosis and medicine, passed on NKF summit but Christina is healing amazing so accepted and invited to a special summit, excited planning a trip for Christina to Florida so she can swim and walk on the beach and answering questions from the group. Shameka Aisborne, Ivan Castillo, Gabi Morales, Angel Pitts.
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Meet Julie Nast, lost her kidneys at a young age, pregnant while on dialysis, meet Darian and hear about Vanessa her amazing lifelong friend, meeting in Washington DC on DPC summit and showing her home dialysis set up hotel room, current dialysis, future possibilities. We are not doctors so follow up with your medical team #blindchickliving #livingondialysis #blind #patientinterview #dialysis #patient #renal #hyperbaric #homedialysis #DPC #dialysispatientcitizens #kidneyadvocate
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New Introduction • Christina having seizures!! So scary and she is one strong chick! • Appendix BURST!! Tube in stomach, Mike the dinosaur • NKF Washington DC summit 2023 • NANT conference 2023 meeting Sam and Lacye Trevino • Lobby days, meeting people in Idaho and Utah! • Boston 2023 Meeting our hero’s and idols! • Moving Mersadies to Utah, we are becoming grandparents! • California conference 2023 first RV lobby day, doing dialysis in RV. • ASN 2023 KIDNEY WEEK, Surprised Christina with WICKED • Meeting Candice Madden in Washington DC. Scott Ricks lost his wife Katie Rick’s during dialysis treatment #BLINDCHICKLIVING #LIVINGondialysis
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We have had a lot going on but WE ARE BACK BLIND CHICK LIVING PODCAST we will do multiple episodes. There will be patient/carepartner interviews, monthly episodes of our dialysis kidney disease journey. We will also do update episodes. If you want to be interviewed reach out to [email protected] or just #blindchickliving and send us a message
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EPISODE 20 BLIND CHICK LIVING on dialysis presents KidneyLuv's first video interview, Larry Hales, KidneyLuv's Chief Marketing Officer, interviews BLIND CHICK LIVING on dialysis Podcast couple Michael and Christina Gilchrist as they recount their journey with Chronic Kidney Disease (CKD) and how they are living their best life despite being on dialysis. BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis BONUS EPISODE. Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this????
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#17 BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis episode 17 we talk to newly married KAREN AND RYAN CAMPBELL it is amazing how much she has to her story….. I thought arranging the interview just a transplant story but then the onion was peeled back and soooo much to her story!!!, then we talk about the illusion of being healthy and how patients put on a front or it becomes the norm! Michael “THE CARETAKER” movie review, we review HALLOWEEN ENDS then Christina’s BLIND CHICK LIVING crazy MICHAE JACKSON THRILLER facts are talked about. Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this????
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#16 BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis episode 16 we talk to the mother of OUR HERO HANK the most adorable baby ever, 14 months old and he is on PD, then we talk about cvc placements and speaking up! Michael “THE CARETAKER” movie review, we review LYLE LYLE CROCODILE then Christina’s BLIND CHICK LIVING crazy Hocus Pocus face are talked about. Hanks page is https://www.facebook.com/ourherohank Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this???? Go look at some videos!!
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#15 BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis episode 15 we talk to the KELLY SKINNER HURRICANE IAN IN FLORIDA Oct 2022, then we talk about natural disaster and what to do if you are on dialysis or medical! Michael “THE CARETAKER” movie review, we review THE BROS, AVATAR 3D, DON’T WORRY DARING, and SMILE then Christina’s BLIND CHICK LIVING crazy crazy urban legends are talked about. Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this???? Go look at some videos!!
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BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis episode 14 we talk to the PREGNANT LADY Keeli Paige, then we talk about things we wish we knew before or sooner on dialysis, gotta put some lame dad jokes in there somewhere! Michael “THE CARETAKER” movie review, we review THE WOMAN KING and PEARL then Christina’s BLIND CHICK LIVING crazy crazy traditions are talked about. Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this???? Go look at some videos!!
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BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis episode 13 this is the Michael THE CARETAKER episode, Christina and Tylar interview Michael and you get to know his life, gotta put some lame dad jokes in there somewhere! talk about Mersadies Rebekah Gilchrist and how proud of her we are, Michael “THE CARETAKER” movie review, then Christina’s BLIND CHICK LIVING crazy corner palindrome are talked about. Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this???? Go look at some videos!!
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BLIND CHICK LIVING on dialysis podcast part of LIVING on dialysis episode 12 this is the Christina BLIND CHICK LIVING on dialysis episode, Michael interviews Christina and you get to know her life, gotta put some lame dad jokes in there somewhere! Michael “THE CARETAKER” movie review, then Christina’s BLIND CHICK LIVING crazy corner interesting facts about artists. Check out our Facebook page, INSTAGRAM, TikTok, twitter hell even YOUTUBE!! Just search BLIND CHICK LIVING on dialysis or our Facebook group LIVING on dialysis. Why are you still reading this???? Go look at some videos!!
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BLIND CHICK LIVING on dialysis part of LIVING!! (on dialysis) Interviews Brielle K. Gazzara Chirila (oh you know Mike is not gonna be able to say that name) better known as Brie “THE DIALYSIS DIVA” her story is ABSOLUTELY amazing!!! She is a kidney advocate, gym junky, a home hemo badass, been one of my hero’s for a long time!!, Michael and Christina talk about fitness and dialysis and how to do gym and fitness at your “dialysis” level, gotta put some lame dad jokes in there somewhere! Michael “THE CARETAKER” movie review, Michael adds a comment about Christina how proud I am of her for becoming an advocate and sharing her story, then Christina’s BLIND CHICK LIVING crazy corner talking about weird dog facts.
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Ok!!!!! ANGEL DUNCAN her story is ABSOLUTELY amazing!!! She has had 2 FISTULAS on in each wrist, 5 yeah I said FREAKIN 5!! GRAFTS, numerous cvc ports and even a FEMORAL PORT that is a port in the thigh and of that isn’t enough she is currently on PD dialysis!!, Michael THE CARETAKERS movie review, then Christina’s BLIND CHICK LIVING crazy corner talking about weird cat facts.
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We have the AMAZING inspirational my hero’s DAWN & JIMMIE BATES they have been traveling the country doing home hemo!! Michael’s movie review of “FALL” and “EASTER SUNDAY”, we then talk about relationships and intimacy problems that may come up while dealing with sickness, then of course Christina’s crazy corner “weird crazy words” with Tylar, Clover, Holston & Amber Hardman!!!
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We interview the amazing beautiful awesome LACYE TREVINO from Urine Inspiration yeah Sam is there but this episode is about her!!, Michael reviews DC LEAGUE OF SUPER PETS with grandma Betty Gilchrist, Maxton Gilchrist, Tyler Burrell & Bekah Burrell it was so great we took Christina Gilchrist, Mack, Scooter, Faith, Brooklyn Tingey, Then we talk the unrealized moments of care partner, caregiver, whatever you want to call it I call it “THE CARETAKER”! Unfortunately we ran over so CHRISTINAS CRAZY CORNER was canceled but that just means next weeks will be that much more amazing. This was a very personal episode for Michael Gilchrist and there was a lot of stuff talked about that even Christina has not heard due to Michael just being tough. So again very personal episode I hope you like it. FOLLOW IT, RATE IT 5 STAR, SHARE IT. also if you haven’t joined LIVING!! (on dialysis) WHAT THE HELL ARE YOU WAITING FOR!!?? https://www.facebook.com/groups/1937182836456431/
- Visa fler
