Waiting for a kidney transplant

@beitel tell everyone you know and have them pass along the info to the people they know. I didn't know the person I donated to but knew of her, so it was a directed donation even though she was a stranger to me. Social media has been a great resource. Sometimes it feels more comfortable to let people know through a post as it doesn't put anyone on the spot.
Find out as much as you can about how people can sign up to become a donor so if someone asks, you can immediately direct them to a link, phone # or website. It may reassure people to know that everyone they talk to and all of the donor info and tests are private, even from you.
Let people know they don't have to be young and in perfect shape. I'm 52 and am not at my "goal" anything. Also, they don't have to be a match, I didn't match the person I donated to but she didn't have any antibodies that would reject my kidney. A person can also be "your donor" through chain donation. As long as they follow through with donating a kidney (and you are transplant eligible), you are guaranteed one.
Good luck!

@jolinda Thank you for reminding me about it being hard to ask for things. I don't know why it didn't occur to me because I may feel the same way. I can't imagine how hard that would be.
Finding a few people to advocate is a great idea. @beitel, The more people that know about organ donation, the better. Even if it's not something someone can do right now for you, they may hear about it from one of your friends or family members and decide to donate to someone at a later date.
I realize that's easy for me to say, I don't need a kidney. The example that comes to mind is it's easier for me to tell people about the food pantry in our neighborhood, who it serves and how to keep it stocked than to say I don't always have money at the end of the month to feed my family and if you could grab a few extra cans of soup for me when you shop, that would be great. I can easily do things for the greater good but I know it's very difficult to ask for help. I'm sorry I sounded so breezy about, "just tell everyone"

You didn't come across as "breezy", just another perspective. Donors and their families are such a blessing to us all it's beyond words!!! It was such a hurdle for me to ask for anything, your food shelf comment was spot on, so tough to ask sometimes. Great info you shared, I can feel your positive energy coming through in the post.

@beitel,
Becky, In addition to the personal experience and information that members are sharing with you, I want to link you to the Transplant Pages. There are materials for transplant recipients as well as living donors in the Recipient Toolkit and the Living Donor Toolkit.
https://connect.mayoclinic.org/page/transplant/

Thank you @mauraacro. I was talking about this just this morning with my mom and my Nephrologist. They suggested to see about saying or doing something at Church since we are a big part of Church.

@mauraacro, your advice is very sound. Recently, a young man in my kidney disease support group was whining about needing a kidney and what to do. He has been on dialysis for one year. In this area the wait for transplant is 8 to 10 years. He was pretty upset when I related the following ideas, as he preferred to complain than take action:
-make a bumper sticker for your car. You never know who might see it at a stoplight
-make a lapel button that goes on your shirt each time you walk out the door
-attend Donate Life events wearing a T-shirt to let people know you need a kidney
-talk about your need for a kidney to your faith community, your interest groups, your professional associations [He is a teacher]

I am a pro-active type of person, and looking for help to find a kidney takes a lot of effort!

I did not have a living donor, but I want to add this to your conversation - Three Can’t Miss Posts if you’re Considering Living Organ Donation
https://connect.mayoclinic.org/newsfeed-post/three-cant-miss-posts-if-youre-considering-living-organ-donation/

@beitel - Becky, I remember you telling me about your love for kayaking and the outdoors. And as i was sorting my recent outdoors vacation photos, I thought of you. So i want to drop in and visit.
How are you? Have you had any more outdoor adventures? Is there any updates on the search for a kidney donor?

I'm sending hugs and prayers to you and your loved ones.

My GFR is down to 23 and l should be down to 20 in few months. My nephrologist refers to Banner as he is part of AHKD. I would like to consider Mayo Arizona as well. Suggestions? Once my referal is accepted and the testing process begins, how long until Surgey? I’m blessed that I have a number of family members as donors that are blood matches.

Hi @tomkrush, welcome to Connect. You'll notice that I moved your message to an existing discussion about getting close to the time of getting a kidney transplant. I did this so you can meet others who are or were in a similar situation and can offer tips and advice. In addition to this discussion, I think you might find these helpful too:
- Waiting for an altruistic donor https://connect.mayoclinic.org/discussion/waiting-for-an-altruistic-donor/
- Pre kidney transplant https://connect.mayoclinic.org/discussion/pre-kidney-transplant/
- What's a reasonable distance for traveling for a kidney transplant? https://connect.mayoclinic.org/discussion/whats-a-reasonable-distance-for-traveling-for-a-kidney-transplant/

I'd also like to bring @nianyi @kayb @morty and @judyth. Like you Morty is also anticipating a kidney transplant soon at Mayo AZ. There are also several members who have discussed being listed at multiple centers. Fellow members, like @rosemarya and @jolinda, can help answer your questions about timing from referral, through testing to surgery. Tom you certainly are blessed that you have a number of family who could be potential donors. Here is a great blog post that outlines the play by play steps for donors, as well as a first-hand account from @mauraacro
- Countdown to Living Donor Surgery: Key Steps https://connect.mayoclinic.org/page/transplant/newsfeed/countdown-to-living-donor-surgery-key-steps/
- Kidney transplant - The Journey from the Donor's Side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

Well, I just gave you a ton to read. Sorry about that. Keep posting your questions.