Mighty - The Organ Transplant Podcast: Recent Episodes
Dave Johnson
A heart transplant (and total artificial heart) survivor shares his experiences and thoughts on his 18 year journey to heart transplant.
UNOS - United Network for Organ Sharing: https://unos.org/
OPTN - Organ Procurement & Transplantation Network: https://optn.transplant.hrsa.gov/
HRSA - Human Resources and Service Administration (to find your local Gift of Life/Organ Procurement Organization): https://www.organdonor.gov/awareness/...
The American National Center for Complementary and Integrative Health:https://www.nccih.nih.gov/
American Heart Association: https://www.heart.org/
American Lung Association: https://www.lung.org/
National Kidney Foundation: https://www.kidney.org/ Liver Foundation: https://liverfoundation.org/
American Pancreatic Association: https://www.american-pancreatic-assoc...
American Gastrointestinal Association (intestines): https://gastro.org/ Donate Life: https://www.donatelife.net/
Transplant Foundation: https://www.americantransplantfoundation.org
How I went to the ER with a stomach virus and came out with a new heart. The 2nd donor one. Let me regale you with the tale.
One obstacle at a time. Getting through a long crisis like organ transplant means we have to take the wins where we can. Today it's surviving yet another blood draw. Tomorrow, maintaining a fluid restriction. Maybe it's just outlasting the madness of waiting yet another day or week on the list. One little victory after another sustained me throughout my long journey.
In this episode, I try to tackle an issue that typically isn't discussed much outside of transplant patient circles. We risk offending, angering, or worrying those around us when we talk about the moments of regret, depression, or melancholy that often follow in the wake of an organ transplant.
It was tough before Covid. Now it's even more complicated. Immune suppression, much like an invisible illness, doesn't register with many people and can be frustrating when not taken seriously by friends and family. My thoughts on living an immune-compromised life, how to navigate various situations, and adjusting to this new reality.
Let's talk about the financial burden of transplants. People are stunned when they realize how much it costs, but even harder to explain is the financial toll of peripheral costs in terms of lost wages, travel, hotels, and the nickel and dime expenses and accumulate into the number one reason people file for bankruptcy in the U.S.
Confession: I haven't heard back from my donor family after five letters; most people don't. Nevertheless, most of us have things we need to say to them. I spent ten years performing as a lay pastor performing funerals, sitting at dead beds, attempting to comfort the survivors of tragic losses, both expected and sudden. In this episode, I apply what those experiences taught me to suggestions for writing a thank you letter to your donor family.
TWITTER: https://twitter.com/mightytxpodcast
An overview for caregivers who are prepping for the newly transplanted patient to come home. Suggestions for room by room cleaning and potential trouble spots, as well as some insight into handling anxious friends and extended family who are anxious to visit.
TWITTER: https://twitter.com/mightytxpodcast
I'll say AGAIN, I'm no therapist. I have no psychological training. But I have talked to hundreds of transplant patients and many of us struggle with disconnectedness, anger, restlessness, and an intangible sense of loss and otherness that's difficult to articulate (as evidenced by my broad description here). I'm not equipped to diagnose it, but in this episode, I share my own struggle with adjusting to life after transplant in terms of my thought life and suggest some reasons why many of us experience these emotions.
TWITTER: https://twitter.com/mightytxpodcast
Don't got one? Get one! You never know when you may land in the hospital for a day or two...or twelve. Here's everything I can think of about bug-out bags - what kind to get, where to keep it, what goes in it, and why you need one even if you think you don't. Plus, you save your caregiver multiple trips home and to the store. A good bug-out bag can hold you over in a hospital room even in the worst and most unexpected situations.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/5SVliwcmZ8U
A frank discussion about the psychological and physical toll of the transplant experience on patients and caregivers, which can often lead to regretting the decision to be transplanted. My honest, layman's perspective on the effect of surgery trauma on post-TX patients.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/8QqadOkcK_A
Continuing to talk about relationships, this episode relays our family's experience with friends as a support system, "drama vampires," and how to maintain friendships through open communication and cutting a lot of slack.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/JSAhfC6nUmA
My kids are... well... awesome. I honestly don't know if my thoughts here have universal application because our situation was so unique. My boys actually helped me articulate some things I hope will be useful, apparently more things we didn't do than things we did do.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/z3HrfsQcg9Y
Transplants are tough on relationships. We screwed up a lot but we also learned a lot. We're still working some things out and I'm no marriage counselor. But we made it through, and I think it's because of some of the things I talk about here.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/x3RE4_-HQTs
It's a lifesaver and a crazy maker, this pill we take. Feeling depressed and elated within the same minute? Crying, then apologetic, then vengeful? Gather 'round and listen to all the nutso things I've said and done while it had its way with me.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/0kHwztGMNpU
We all plan to win the war against our organ failure and dream about what a healthy life will be like. But planning for the worst-case scenario can leave an unnecessary burden on our loved ones. Here are some humble and simple planning I did for peace of mind "just in case."
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/0TTU8IWp1DQ
With an organ shortage and an average of 22 dying every day while on a waiting list, the good news is that 106 people are transplanted every day on average. This episode attempts to tackle the difficult subject of death and making good decisions in light of the current numbers.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/kgU5hrmiOIA
Nurses work 12-hour shifts. Docs often work in teams. Technicians change. How responsible should you as a patient be to make sure information is accurately communicated between members of their care team? And what recourse is there when something isn't working? This episode pinpoints potential break-downs in the consistency of care, and how to self-advocate when it does.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/wisBHi7cOJ0
Which pill caused what side-effect to help with the side-effect of which pill? Exactly. Let's talk about using the Scientific Method to get a baseline for meds and how they affect us, organizing mediations, and tracking symptoms vs. side effects.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/MtFb7R9WpjM
A Total Artificial Heart (TAH) is exactly what it sounds like - it's not an assist device, a pacemaker, or a pump. It's a device that replaces 2/3rds of the heart to bridge a patient to transplant. I lived with one for 9 months. For half of that time, I lived at home. I went to the movies, restaurants, the grocery store, concerts, and even a Renaissance Faire. And yes, it was crazy.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/YN8Rw0ZDX0U
It's normal to be anxious about post-transplant life, despite the fact that we've longed for it since the ordeal began. Here's a head's up, some things I wish I'd known or had figured out earlier than I did.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/srsJo4B5gGI
So yeah, I forgot some things in Episode 10, so this is a continuation of my HVICU Survival Guide.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/JQTyfp7et5k
Life on an ICU can be rough sometimes. Survival skills for all you frequent flyers out there, with a view towards long-term stays, delirium, and self-advocacy.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/TSwfeP6FfzI
What a 19-year-old kid with an artificial heart taught me about life, bad food, and surviving the ICU.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/J5c71Psm4F8
No two transplant stories are the same but all have many things in common. A few important changes ahead to prepare for, and the sooner the better.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/pRjX_OYtGUU
Contentment - it's elusive when you're fatally ill. How to find peace in this new, restricted, frustrating reality? I confess I didn't. But here's what I learned.
TWITTER: @mightytxpodcast
YOUTUBE LINK: https://youtu.be/YHVpMXIPLBg
Organ failure is an invisible illness in most cases, especially at the beginning. As I lost the ability to work, play, and function at full capacity, it's tempting to only think of yourself as a sick, handicapped person, lose your self-identity. In this episode I discuss my own struggles with self-confidence and and self-image when seeing myself through the lens of chronic heart failure and organ recipient.
TWITTER: @mightytxpodcast
YOUTUBE Link: https://youtu.be/bvWgdY3obnw
Normalcy? Seems like once organ transplant enters the conversation, normalcy goes out the window. But it doesn't have to. In this two-part topic, I share exactly how crazy the last 6 years of my heart transplant journey was. In Episode 05, I'll deep dive into how our family survived by creating normalcy in the midst of the chaos of procedures, emergencies, hospitalizations, and frequent relocations.
TWITTER: @mightytxpodcast
YOUTUBE: https://youtu.be/mGwcqWlbiNk
Normalcy? Seems like once an organ transplant enters the conversation, normalcy goes out the window. But it doesn't have to. In this two-part topic, I share exactly how crazy the last 6 years of my heart transplant journey was, and follow up in Episode 5 with how we created our own "normal."
TWITTER: @mightytxpodcast
YOUTUBE: https://youtu.be/qUId4ki9Aq4
(Note: I made a technical error in this episode - I mentioned that my cardiologist found a problem with my heart while I underwent an EGD. This test was actually a TEE. Though they both involve an esophogeal scope, though they are done for completely different reasons.)
Self-advocacy is tricky. There's a fine line between looking out for your interests and being the know-it-all patient. In the transplant world, the ideal balance is a patient/doctor team that shares information and works together to get to the finish line. In this episode, I share some personal experiences to illustrate degrees and the necessity for self-advocacy.
TWITTER: @mightytxpodcast
YOUTUBE: https://youtu.be/IdtcZqXG8_Y
In this episode, I discuss knowing your enemy - you disease. To self-advocate effectively, we need to be able to join the conversation armed with basic knowledge. Good information = informed decisions. Let's talk about self-education.
TWITTER: @mightytxpodcast
YOUTUBE: https://youtu.be/JtJwwgWkLVk
The waiting list. The transplant surgery. The donor. Compliance. Medications. In transplant world there's a lot of great info about the Big Stuff. Other things fall through the cracks - relationships, self-worth, passions, hobbies, identity. In this episode I share an overview of my 18 year journey to heart transplant, life interrupted repeatedly by procedures, hospitalizations, surgeries...the attrition sneaks up on us.
TWITTER: @mightytxpodcast
YOUTUBE: https://youtu.be/NDea5V-WxZ8