living donor

When LaVerne Bartee happened to learn after 30 years of marriage that she and her husband Kevin had the same blood type, she leapt at the chance to give him the life-saving kidney their family was waiting for.

Welcome to Season 2 of Donor Diaries!

To kick of season 2, we are going to jump into some basics about kidney donation- some helpful Q&A for anyone out there who may identify as donor-curious.  You’ll also get a peak onto Season 2, and hear about some of our upcoming guests!
Kelly Schmitt, Patty Graham and Emily Wise are not only living kidney donors themselves, but they work full time educating potential donors through a program called Donor Connect, a donor mentor program facilitated by the National Kidney Donation Organization.  
This mentor program serves potential kidney donors from over 30 transplant centers affiliated with the National Kidney Registry.  
Early data shows that a living kidney donor candidate is more likely to continue through the organ donation testing process if they talk to a living donor mentor.
This is important, this leads to more people donating kidneys which is what we all want.
Today’s guests talk to about 400 potential living kidney donors a month each!  They are likely talking to more potential donors each month than anyone in the whole country, which is pretty amazing.  
In this episode, we will cover the most common questions these donor mentors get asked about living kidney donation.

• What if I donate a kidney but then need a kidney later?
• What if I start the donation process, and then change my mind?
• What’s the process to be approved for donation, and how long does it take?
• How long will I need to take off work?
• Can you drink alcohol after you donate a kidney?
• Will I still be able to be active physically after I donate a kidney?
• What if I get tested, and find out I’m not a match for my intended recipient?
• Can non-directed donors meet their kidney recipient?
• What changes do I have to make to my diet post donation?
• What advice would you give me going into this, that you may have not known?
• Can I donate if not vaccinated?
• If my recipient is in another state, will I have to travel there to donate?
• How long do you stay in the hospital after you donate?
• Are there out of pocket expenses I have to worry about?

Show Links

National Kidney Donation Organization

Donor Connect Mentor Program

Donor FAQ Panel:  The Living Kidney Donor Experience

Patricia Graham "Go Save a Life" at Ignite Boulder 35

Kelly Schmitt on NPR “The Generosity Spectrum”

Kelly Schmitt’s Story

Donor Diaries Website
Donor Diaries on Facebook

Get this statistic: In America, 95% of people are in favor of organ donation but only 58% are actually registered, and every 10 minutes, someone is added to the organ waiting list. It’s so important to not only understand the organ donation process and registering to be a donor, but it’s also super valuable to learn the misconceptions and how to make your own decisions with all the facts.

Today’s podcast feature’s someone that knows this topic through many POVs, the transplant recipient, the donor’s relative, the family member and the advocate. It’s liver transplant recipient and Donate Life Ambassador, Meghan Smith. After receiving a liver transplant at 27, three years after her young brother also received a liver transplant, Meghan uses her platform to educate others on organ donation and registration with open-minded positivity and realism. 

Here’s the Four Hot Takeaways from the podcast episode: 

1. At 3:25 Meghan and Dominique drop the facts about organ donation and donor registry, like the ins and outs of registering and how you can alter/select your specifics when registering, and what makes transplant surgeries different for everyone.  
2. At 19:08 Meghan gives her advice on how to have mental and emotional fitness when going into big heath changes, her inner details about how stress transfers differently between being the patient and the support network in the transplant process, and how the post-transplant life is really like. Plus, there’s major drops of feeling empowered in your body and way of life after major health experiences.  
3. STORY TIME at 43:16 brings some levity to the transplant experience as Meghan has a very distinct reaction to coming out of anesthesia, and as she’d say, “it’s freaking amazing.” 
4. And the final segment at 48:01 Meghan and Dominique get breaking the misconceptions around registering to donate, how media representation of the donation process could sharpen its realism to bring a better understanding, and how to have non-judgmental conversations around donation registration and support organ donation overall. 

Please like, comment, subscribe and share this episode, follow Meghan @meghanmakingmoves and learn more about organ donation/registration at www.donatlife.net . Please check out the InvisiYouth Charity Shop to buy yourself or someone you care about our limited edition Subtle Activist Color Block bracelet on www.etsy.com/shop/invisiyouthcharity with free shipping globally, and please support InvisiYouth Charity by donating, following and joining our programs and community @invisiyouth!

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Of course we all have our "I am thankful for" lists.  Most of our lists are comprised of the same sterile nouns, family, friends, job, house, etc... But, (and it's a big but, lol) as the years trample on by, and as I reflect on my life, it really is all about giving.  Sure, birthday and Holiday gifts are a great example, watching the people you love open something you you bought to hopefully bless them with.  Honestly, as a mom, that is one of my favorite things even now, with my grown kids.  

But what if you were able to give someone tomorrow, maybe even the next few years???  It is humbling, amazing, and what I felt I was called to do, and I can't imagine being more blessed by it.   Thank you Lord, for putting this on my heart.  Thank you, God, for making this part of my story, thank you Jesus for the amazing gift of being able to hear your voice and the boldness to move in whatever you ask. 

miss.shellrogers@gmail.com

 April is National Donate Life Month. Connecticut residents have applied for both Organ and Bone Marrow donations under CT Paid Leave benefits. As of April 25th, 18 people have applied for organ donation and 4 for bone marrow donation.

 Host Nany Barrow talks with 4th term Connecticut Representative Jeff Currey, about his own journey to find a lifesaving kidney.  Jeff talks about his life openly and with a sense of humor. Find out who ended up giving Jeff a kidney!

Joining Jeff and lending their expertise about organ donation, is Caitlyn Bernabucci, the Director of Community Affairs and Development of New England Donor Services, and Annie Landeen, the RN Living Donor Transplant Coordinator for Hartford Hospital. 

Under CT Paid Leave, serving as an organ or bone marrow donor is a qualifying health condition.  To find out if you qualify, please go to ctpaidleave.org.

https://ctpaidleave.org/s/?language=en_US



https://www.facebook.com/CTPaidLeave



https://www.instagram.com/ctpaidleave/



https://twitter.com/CTPaidLeave



https://www.youtube.com/results?search_query=ct+paid+leave

In most cases, when someone steps forward as a living donor, nobody actually asks them to donate a kidney.  Usually, the donor hears the story of someone needing a kidney and makes the decision to donate without being asked.  

The Living Kidney Donors Network (LKDN) is a non-profit 501(c)3 organization established in 2007 by Harvey Mysel whose primary mission is to educate people in need of a kidney transplant about living kidney donation and help them communicate their need to family members and friends. LKDN also has a program that educates the public about the need for living kidney donors.

Harvey is a 2-time kidney transplant recipient. After proactively managing an inherited kidney condition, PKD (Polycystic Kidney Disease) for over 20 years he had his first kidney transplant in February 2007. He was fortunate that his wife Amy was a compatible donor. 

Harvey contracted a virus, (BK Virus,) 2 years after his transplant and after years of battling this virus, in August 2012 he had his second kidney transplant. Harvey and his donor, Stephen Liegghio, who was introduced to Harvey by an advocate, were involved in a 3-way kidney paired exchange.

Most kidney donors donate to someone they know and patients need to first have the knowledge about living kidney transplants and learn how to develop their kidney campaign so they could be effective in communicating their need. The FREE online program Having Your Donor Find YOU! does just that. 

In addition to the work he does at the LKDN, Harvey is a tri-athlete, competing in a triathlon 5 months after his first transplant. He is a 3-time Gold Medal winner and Silver medalist in the Transplant Games. Harvey is an accomplished bicycle rider, tennis player, platform tennis player, bowler, hiker and rock climber.

Episode Links

Donor Diaries
Living Kidney Donors Network
Northwestern Kidney Champion Program
National Kidney Donor Organization
Johns Hopkins COVID/kidney Recipient Study

Donor Diaries Website
Donor Diaries on Facebook

Brad Stoehr has always liked helping people, but becoming a kidney donor wasn’t necessarily on the list.
That all changed when he saw a social media post about a high school friend in need of a kidney.

On January 25, 2021 Stoehr gave Petra Herzog (part 1 of this story) a kidney.

The process lead them both to create the non profit Odd Kidneys.  In this interview he talks about what in his life lead to the living kidney donation. 

Find out more about the group and Type 1 Diabetes here:

https://www.oddkidneys.org/
https://www.diabetes.org/diabetes/type-1


Outside of serving Odd Kidneys, Stoehr is the Central Divisional Director for Horizon Investments.  His most important job is as a husband and father.   He and wife Leslie have two kids, Stella Reese and Miller Patrick. 
Stoehr is an avid Clemson fan (class of 2005), he was also the guy inside the school mascot when he was a student there!
 

www.charukumarhia.com

www.charukumarhia.com

Got a story we should share? Email us: thestorywithcharu@gmail.com
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Organ donation is something that is near and dear to our hearts, today we wanted to share more about organ donation, our experiences with it, and help spread awareness since it is organ donation awareness month. We understand that organ donation might not be for everyone, but we also know that knowledge is power. And with our own experiences, we didn't have a lot of knowledge. We hope you enjoy this episode, and please feel free to reach out to us anytime with any questions you may have. You can find us here:

@makinglemonade.podcast
Kels: @kbobka
@baineslegacy19
www.baineslegacy.com

Whit: @whithale
@taytaytough
www.taytaytough.org

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We talk with soccer coach and kidney disease survivor Jeremy Bedig about his experience with FSGS.

Jeremy’s Kidney Disease Diagnosis and First Transplant
- His passion for soccer as a kid and the path he was on prior to his diagnosis with FSGS at the age of 14
- The weird swelling and symptoms that caused him to go to the doctor and get diagnosed with fast-acting variant FSGS
- The first time he really felt sick, not because of kidney disease but because of the treatment
- His experience trying to keep up with school and soccer while undergoing chemotherapy and taking multiple drugs to battle his condition
- The mental challenge of dealing with a life-threatening diagnosis, and how you struggle to process what it means as you go through the day-to-day experience, especially as a high school student
- The amazing support he received from his parents and grandparents, and how important that support system is for patients
- His experience with dialysis and having a double nephrectomy (where both kidneys are removed) as a junior in high school
- The unique opportunity he got that most of us will never experience

Jeremy’s Second Transplant
- The legal battles he had to fight with his school to allow him to study based on his health situation, and how difficult some teachers made his experience
- How unprepared he was to be a college student, and why he dropped out
- What led him to try being a soccer coach, and how quickly he progressed in his first couple years
- The staph infection that destroyed his new kidney and sent him back onto dialysis for 3 1/2 years, and the emotional toll that took to be back where he was years earlier
- The experience of finding a donor but having it fall through because of a failed test
- The role coaching played in giving him something outside his condition to focus on
- His eventual transplant from a family relative and the special bond that created between them

What Jeremy is Doing Today
- One of the scary realities of being a kidney disease patient: going into the surgery not knowing if you'll have a kidney at the end
- His new coaching career with Diablo Valley College and Contra Costa FC, and the process of receiving his official US Soccer licensing
- His role as a Peer Team Lead with the Nephrotic Syndrome Foundation, and the podcast they are creating
- His desire to spread the word about mental health, and his continued struggles to deal with the PTSD associated with his kidney experience
- Why even though he received amazing care and had an amazing support network, he still often felt alone, which is an opportunity for improvement in the current health care system
- His founding the for the Amplify Athletic Alliance to support the LGBTQ community to share their experiences
- And of course, what Go Be More means to Jeremy

If you liked this episode, check out Jon’s Kidney Disease Story and our interview with Kidney Fighter Marc Coronel.

And, you can now get these show notes sent directly to your email. Sign up here!

Recorded August 26, 2020.

References:

Amplify Athletic Alliance - coming soon

Nephrotic Syndrome Foundation - website

Contra Costa FC - website

Diablo Valley College Soccer - dvc.edu

Guest:

Jeremy Bedig - @coachjeremyb, @ysarb_mot

Hosts:

Bryan Green - @sendaibry, Go Be More Blog

Jon Rankin - @chasejonrankin, Go Be More

Links:

Go Be More website

Go Be More YouTube Channel

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We talk with Marc about boxing, his kidney disease, and the what you learn from nearly losing your life:

Early Life and Intro to Boxing
- Marc was an academically strong student who socially couldn't get along with other kids, resulting in fighting and altercations
- How Marc was the first test case for the "Scared Straight" program
- The way boxing changed the way he navigated interactions with others and learned to balance himself and his emotions
- The many life lessons he gained from boxing, including his mentality to stick and move, being prepared each and every day, and staying focused on the task at hand

Marc's Approach to Life
- His father's experience in the ICU with covid-19 and what he appreciates from that experience
- Why you can't bring your problems to every situation you're in
- What it means to get the championship belt in life
- Why so many of us keep digging the holes we are digging and fail to stop a problem in its tracks
- Why what success can't show you, rock bottom can
- Why your grit needs to be stronger than your passion or your dreams
- His focus on daily prayer and giving back thanks and why we need to keep doing what we did to achieve success once we get what we wished for
- His belief that cause and effect works one way: what you cause in your body affects the world around you, not the other way around
- What his brand LIFESTYLE athletics means to him and what it represents
- The poor thought processes and habits we accept in our lives that lead us to have poor health outcomes, including getting diagnosed for kidney disease

Marc's Diagnosis and Kidney Disease Experience
- A random physical at 26 years old identified his FSGS despite the fact that he was in prime shape
- Why it is difficult to reconcile the diagnosis when you don't look, feel, or act sick
- All the questions that challenged him when he was first diagnosed, and how he dug himself into a hole for six months before he refocused on boxing and regained his footing
- The kidney disease forced him to pursue coaching instead of boxing, which led to new avenues for success and helped him to develop into a more well-rounded person
- The experience of fighting kidney disease as a constant battle with himself, not just the medications and bills and other requirements
- How Marc used social media to make people aware of his situation and to find 32 potential donors, which helped him get a transplant 9 years faster than the average
- The lengths his donor went through to donate her kidney, and how strong and committed she was to doing it and seeing it through
- What people don't know about the process of being a living donor
- How hard it is to deal with kidney disease, dialysis, and transplants, and why it's essential to care about yourself to get through it
- Jon and Marc's new motto: "I wasn't given this disease to die from it. I was given this disease to show other people how to beat it."
- Why he now feels kidney disease was the best thing that happened to him in his life, because it showed him what he is made of and the impact he can make on his community
- And, finally, what the words Go Be More mean to Marc!

If you liked this episode, check out Jon's Kidney Disease Story and our interview with Ron Sarmiento.

And, you can now get these show notes sent directly to your email. Sign up here!

Recorded August 17, 2020.

References:

A New Kind of Fight - Huffington Post

Former Boxer Knocks Out Kidney Disease - FoxLA

The Living Donation Process - OrganDonor.gov

Guest:

Marc Coronel - @kidney_fighter, MarcCoronel.com

Hosts:

Bryan Green - @sendaibry, Go Be More Blog

Jon Rankin - @chasejonrankin, Go Be More

Links:

Go Be More website

Go Be More YouTube Channel

Feedback

Subscribe on your favorite player:

Simplecast