Transplant Experience Survey findings

Ldybug97

 I’m a senior psychology student (and a fellow transplant recipient) currently working on my senior thesis. I’m studying how emotional experiences—like guilt, worry, openness, and personal health responsibility—affect life after transplant.

If you’re a transplant recipient, I would be so grateful if you could complete my anonymous survey. Your honest responses will help me better understand the emotional side of transplant recovery and how we can support each other and future recipients.

https://docs.google.com/forms/d/e/1FAIpQLSftVnBB3EqERsKfkuGlfMEug31c5abZOaQzV-AnvD0mMiXtRQ/viewform?usp=header

Your participation is completely voluntary and confidential. If you have any questions, feel free to reach out.

Thank you so much for helping me with this meaningful project!

With appreciation,

LaVise

Dom

Love this LaVise! Best of luck on your thesis!

Ldybug97

@Dom Thank you

TheMac

Completed! Good luck! Would love to read it when it is completed.

Ldybug97

@TheMac thank you so much. I will definitely let you read it when I’m finished. I have to submit it June 20 and it’ll take about a week or so to get it back and then I will send it your way. I just completed one on stress and anxiety last semester. This is actually a continuation to that paper.

lescp3

Great work - please do share highlights with us here! Please also share takeaways from your last paper. Would love to see :)

Ldybug97

I recently completed a study called “Post-Transplant Independence, Social Engagement, and Work,” looking at how physical and emotional health affects life after transplant.

📊 Some Key Takeaways:

• Independence improved significantly for most recipients
• Fatigue and mild to moderate anxiety were still common
• Social engagement increased, but not for everyone—health stressors still get in the way
• Anxiety levels didn’t differ much by organ type—showing that emotional challenges are something we often share, no matter our transplant journey

💡 What’s Next: Diving Deeper Into Emotional Strain

Now, I’m expanding this research to focus on the emotional weight we carry post-transplant—things like worry, guilt, disclosure, and how responsible we feel for our health.

As a recipient, I’ve lived these feelings too. Since my transplant, I’ve done incredible things—but I still carry the thought that someone had to die so I could live.

🎯 My New Study Focus:

How do worry and guilt affect our openness and our sense of responsibility after transplant?

I’ll be exploring:

• Worry about rejection and long-term health
• Guilt—feeling undeserving or anxious about our second chance
• How open we are about our transplant with others
• Whether these emotions affect how well we care for ourselves

📣 I’ll be sharing an updated survey here soon, and I would love your input. Every experience helps us understand how to support each other better.

Thanks to everyone who participated

LaVise 💚

Kidney Recipient | NJCU Psychology Student

Sdey0522

Thanks for sharing your takeaways, @Ldybug97 👍

Ldybug97

Thank you to everyone who completed my survey ... Here were the takeaways ... It is a 24-page paper, so I am giving you the shortened version

• Emotional weight is a major factor in the post-transplant experience, deeply influencing behavior and health responsibility.
• Survivor’s guilt and emotional debt were commonly reported, as recipients struggled to balance gratitude with the loss experienced by their donor’s family.
• Responses to guilt varied:
  • Some participants turned guilt into positive action engaging in advocacy, honoring their donor, or following medical guidance closely.
  • Others experienced emotional exhaustion, anxiety, or withdrawal.
• Health-related worry was another recurring theme, particularly among:
  • Younger (40–54) and older (65–78) recipients.
  • Fears included organ rejection, infections, and long-term health decline.
  • However, many shared selectively, limiting conversations to trusted individuals due to stigma or fear of judgment.
  • Others struggled with burnout or inconsistent adherence.
• These emotional factors directly influenced self-care:
  • Some became more committed to their routines.
• The study emphasizes the need to treat emotional well-being as essential to transplant recovery not just survival, but psychological healing and quality of life.
• Disclosure patterns showed complexity:
  • Most participants felt open about their transplant experience.

TiaBean

Wow. I love this @Ldybug97. Mental health is so important to discuss during the entire transplant process. Before, during, and after. It's been a year and a half since my transplant, and I talk to a therapist weekly. I had major depression due to survivor's guilt. The struggle is real, and it should be addressed.

Ldybug97

@TiaBean you are absolutely right that mental health is important. During my Dialysis journey I had something very traumatic happen to me. When I first was put on a transplant list, I had such a fire me that I wanted to fight as hard as I could. Two years had passed, and this traumatic situation happen related to Dialysis, I didn’t feel that I had the fire in me any longer to continue. My Transplant team noticed right away. I was already seeing a psychiatrist because of the requirement to get a transplant. But they told me I need to go into therapy. They matched me with the most amazing therapist. She has gone through every step of my journey for the past seven years. I know that is the only reason that I was able to get through it.

I actually just wrote my senior thesis on survivor's guilt. Definitely something that should be addressed because that was a large part of my paper had other factors in it too. After I receive my second bachelor's in psychology, I am supposed to be pursuing my master's degree in counseling or social work so that I can counsel transplant recipients. Personally, I do a lot of advocacy work and mentoring to people who are on the waitlist and other Transplant recipients to help me with my survivors guilt. I am often at my Transplant hospital and every time I see them I’m like trying to do something to show my gratitude. They’re like you all you have to do is live a good and healthy life. But I’m like no, I have to do more. There’s never a price that you can put on getting a second chance at life, especially when I received an urgent medically necessary Transplant when I was told, I only had a couple more months to live.