How Do I Ask Someone to Save My Life?

IF YOU WANT TO DONATE TO ME!

Hey everyone! 

It's a new week and a new day. You probably already know this, but I'm actively looking for a living kidney donor. I have Diabetes and End Stage Renal Disease (ESRD).

 For me, that means multiple weekly in-center hemodialysis treatments, managing my diabetes, sticking to a strict diet, following all doctor's orders, and learning everything I can about my diagnoses and how to get a transplant. It's a lot to deal with, so I tackle it one step at a time, and when I feel overwhelmed, I take a breath and then break it down into even smaller chunks. 

There's a ton of info out there, and it's free for the asking. Below you will find how to get your request out there; how to talk about it with others; how to share your story, and a good deal of resources for both donors and recipients.

***This will give you possibilities to consider and resources to acquire to help you communicate your need in a variety of modes. I want this to be a resource list at your fingertips.*** 

Some Suggestions for Visibility

Share your story with close friends, family, and on social media, (I put my link at the bottom of every post)emphasizing that healthy people only need one kidney Cedars-Sinai. Ask them to share your story or contact your transplant team to learn about testing National Kidney Foundation. [1, 2, 3, 4]

Asking for a kidney can feel scary, but you are simply sharing your need. You don't have to face this alone.

1. Where to Start

👄 Talk to your transplant team: Tell your transplant coordinator or social worker that you want to search for a living donor. They can give you educational materials and explain how the screening process works for volunteers.

🦸Find a "champion": If asking people directly feels like too much pressure, ask a close friend or family member to be your "champion." They can share your story, answer questions, and talk to potential donors for you says the American Kidney Fund. [1, 2, 3]

🫆Create a personal page: Many transplant centers partner with programs to build a free personal website (a microsite) that shares your story and gives people a private, direct way to apply to be a donor like the National Kidney Registry. [1, 2, 3] (my microsite)

2. What to Say

You don’t have to beg or demand an organ. Most people who donate do it because they read your story and want to learn the facts. Simply let people know that a new kidney is the best way to treat your kidney failure. Mention that a healthy person can live a perfectly normal, long life with just one kidney as noted by Cedars-Sinai.

• 💯Assure them of their safety: Explain that the donor’s medical team is completely separate from yours, and the donor’s safety is always the main priority as stated by the University of Maryland Medical Center Kidney Transplant Webcast. [1]
• 🪄Take the pressure off: Make sure your friends and family know you understand it is a huge decision. Assure them that your relationship will not change if they choose not to donate or are not a medical match as mentioned by Ohio State Health & Discovery.

3. Where to Look (How to Share Your Story)

• 👨‍👩‍👧Start with your inner circle: Send an email or text to your close family, friends, coworkers, and people at your place of worship.
• 💻Use social media: Write a post sharing what you are going through, include a nice photo of yourself, and provide a link to your personal story or your transplant center's phone number National Kidney Foundation. Ask your friends to share the post so it reaches even more people.
• 👨‍👩‍👧‍👧Reach out to your community: You can ask friends to put fliers on local community bulletin boards or ask local groups to share your story in their newsletters UChicago Medicine. (I had friends and family post my NKR posters in libraries and at train stations as well as in my buildings laundry room and on each floor of my apartment building)

Note: You never need to be a perfect blood type match to your donor. Hospitals can use "swap programs" where someone donates to you, and their intended recipient gets a kidney from someone else HRSA. [1]

My thoughts on this, before(I'm still looking for an "after"):

Finding a living donor can be tough and often needs some creative thinking. I really struggled to ask my family for a kidney. It wasn't about feeling like I was overstepping or asking too much. It was more about not being able to forgive myself if something happened to them during surgery. These people have families who depend on them, you know?

I knew this was catastrophic thinking, and usually, the procedure goes smoothly. I just felt a lot of guilt. I guess I should ask myself if I think I'm worth saving? I do believe I'm worth it, but I'm still not comfortable asking family. Some voluntarily explained why they couldn't donate. I appreciated their honesty. 

I just need to find a living donor another way. I've learned from watching and participating that if I'm creative and use different places to show my request, I'll have better chances of finding a living donor (or a few!). So far, I have a microsite, posters to still put up, a blog on Google blog, and links in my Facebook posts. Check me out!

Well, that's enough from me for this post. I hope your week is stress-free and easy. Until my next post, stay well and open to new ideas.

Tina

Here's my quote for the day:

"Never give up hope. You might go through 50 candidates  but maybe number 51 is the one." — Josh Raymond, Kidney Transplant Recipient

Kidney transplant resources include global and U.S.-based networks that offer education, emotional support, paired exchanges, and financial assistance for both recipients and living donors. [1, 2]

For Both Recipients & Donors:

• National Kidney Foundation (NKF): The leading global organization for kidney disease awareness. They offer comprehensive transplant education and the NKF Peers mentorship program to connect you with trained veterans of the process.
• World Kidney Day: A global campaign raising awareness about kidney health, providing access to worldwide preventive care and resources.
• Transplant Recipients International Organization (TRIO): An international network supporting patients before and after transplantation. [1, 2, 3, 4, 5, 6]

For Transplant Recipients

• United Network for Organ Sharing (UNOS): Manages the national organ waiting list in the U.S. and matches deceased donor kidneys to recipients. Their patient portal, Transplant Living, offers educational guides on the transplant process. [1]
• Find a Kidney: A platform provided by the National Kidney Registry that assists waiting patients in creating custom microsites to securely share their story and find living donors. [1, 2]
• Scientific Registry of Transplant Recipients (SRTR): Provides public, data-driven statistics and outcomes for all transplant centers, helping recipients evaluate their options. [1, 2, 3, 4, 5]

For Living Donors:

• National Living Donor Assistance Center (NLDAC): A federally funded U.S. program that provides travel, lodging, and living expense reimbursements for qualifying living donors. [1, 2, 3, 4, 5]
• American Kidney Fund (AKF): Offers living donor assistance grants to cover lost wages, transportation, and lodging for those in designated states (including New York City). [1, 2]
• Alliance for Paired Kidney Donation (APKD): A global registry utilizing advanced algorithms and "voucher programs" to facilitate international and regional living donor exchanges. [1, 2]
• National Kidney Donation Organization (NKDO): Offers education, advocacy, and a mentor program to guide potential living donors through the evaluation and surgery process. [1
• Donor Shield: is a comprehensive support and protection program offered by the National Kidney Registry (NKR) for living kidney and liver donors. It aims to remove financial, legal, and logistical barriers to donation by providing up to $30,000 in financial assistance and ongoing medical coverage. [1, 2, 3]
• Choose Donation: The 
  National Kidney Registry
   (NKR) is proud to announce the launch of Choose Donation, a new website designed to inform, inspire, and support individuals considering living kidney or liver donation

My Links:

My Personal Microsite

MyBlog(main)

My quote for you:

"A hero lives forever through the lives they save." — Unknown