If you’re in the later stages of Chronic Kidney Disease, you and your doctor will determine if you’re a good candidate for a kidney transplant. This means you’re going to need a donor.

I was advised to get on the deceased waiting list even before my initial health screening was completed. While you’re on the waiting list, make sure you check the wait times in other states. I live in Illinois and the wait time is about five years, while in Wisconsin, the wait is about two years. I signed up for both states.

If you do some additional research on kidney transplants, you’re going to see some scary numbers. This year UNOS, or The United Network for Kidney Sharing, stated that there are over 118,000 people on the kidney transplant waiting list.

That number means nothing to you unless you’re content to wait around for a donor to drop in your lap. So look at that number, then forget it. That number doesn’t take into consideration the effect the work you do can have on your ability to find your own real live donor.

After I had my kidney transplant, people needing transplants seemed to come out of the woodwork. So many people with so many questions. Of course, the first question people ask is, “How can I find a donor?”The absolute best piece of advice I can give is this:

“You don’t need to find someone with your blood type, just find a person willing to donate their kidney.”

“But don’t I need to match the blood type of my donor?”

“Yes you do, but there is a program called the Paired Kidney Exchange, or kidney swap which works like a nationwide search engine. If your donor is not a match, someone else on this list will be.”

One database that hospitals use is the “United Network of Organ Sharing,” or UNOS. You can check out the UNOS website for information. This database is for all types of organ transplants. It can find matching donor/recipient pairs throughout the United States. If you can find a person, a hero, willing to donate their kidney, there is a database of kidney donors and recipients. If your donor is incompatible with your blood type and antibody requirements, your transplant team will search on this national database and find a match for you. Your donor will then be a match for another recipient.

Graphic courtesy of the National Kidney Registry

With a kidney swap, there will be at least two kidney transplants done at the same time, in the same hospital. I know at Northwestern Hospital in Chicago they have had up to eight kidney transplants done at the same time due to the kidney swap database.

You don’t need to go around asking people what their blood type is; you just need to find a hero.

How to Find a Hero

Finding the hero who is willing to donate a kidney can be approached like an advertising campaign. The first and most obvious thing to do is tell friends and family and have them spread the word. Then tell everyone you know, your hairdresser, the person at the checkout line, your mail carrier, everyone. Tell them to tell everyone they know and you will create a nice chain of communication. I found out that the owner of my neighborhood pet supply store donated her kidney to one of her customers, so you never know who will step up to the plate.

Business Cards
Some good advice someone gave me was to make business cards you can pass out.  If you are moderately handy with a computer, or know someone who is, you can go to go to  Zazzle.com and create your card. It’s easy to use and costs around $18.95 for a pack of 100.
When your cards arrive, put a stack in your purse, wallet, or pocket and carry them with you everywhere. If you drive, stash some extras in your vehicle. You may be able to leave a stack at a restaurant you frequent or even post some on the public library bulletin board. Be sure to print enough to give to family, friends, and acquaintances. If someone is unable to donate, they may know of someone who is.

For your business card, choose a photo of yourself and briefly state what this kidney transplant would mean to you. When you add your contact information, be sure to open a special email account for the sole purpose of being able to make contact with people interested in donating. It’s a good idea to have a tag line in your dedicated email address, something like, barbaraneedsakidney@help.com. Your tag line can be used in all your social media sites as well and will become a way for viewers to immediately identify you.

Next Stop: Social Media

In 2016, Facebook had almost 2 billion users, Instagram had 600 million users, and Twitter had 317 million users. Surely there’s a hero among them.

If you already have accountants, start posting.

If you don’t have any accounts, they’re easy to set up and they’re free.

You can ask a computer savvy friend to help you. If you don’t know anyone computer savvy, wikihow.com has great tutorials to walk you through the set up steps. You can find them here:

http://www.wikihow.com/Set-up-a-Facebook-Account

http://www.wikihow.com/Create-an-Instagram-Account

http://www.wikihow.com/Make-a-Twitter-Account

You will need to install the mobile apps as well as desktop versions because it can help with posting and keeping up with responses.

Since you’re setting up new accounts, you can make the title of your account relevant to your search for your donor. You can use the tagline that you used in your business cards, mine was, “Barbara Needs a Kidney.” Be sure to use your special email address created for communicating about your search for a donor. Keep your title consistent with all your social media accounts because the more you post, the more recognizable you’ll become.

Make it Pretty
When you post, it’s important to post an image to catch people’s eyes. One of my favorite apps for posting an image on social media is called “Word Swag,” but it only downloads on your mobile. With Word Swag, you have access to all your photos, plus a library of general photos and backgrounds. Once you choose your image, you write your text or headline. There are a variety of text styles and colors. It also has the capability to make your image the correct size for each social media program you want to post on. Once you hit “Save,” it will save your post to the photo library on your mobile and can also send it directly to the social media of your choice.

Here’s an example of the same message created with different background images you can use.

When you’re on social media there are so many websites for people needing a organ donor you can connect to. I have received so much from these sites; they offer encouragement, information and community, which is invaluable.

A few of my favorite websites are:
www.paireddonation.org
www.kidneyregistry.org
www.livingdonorsonline.org
www.unos.org
www.americantransplantfoundation.org

When you go to these websites be sure to sign the registry. Each of these websites has a Facebook group, which you can join. I can’t tell you how important community is when you’re facing a health crisis. There are so many people with similar questions and concerns and so many people that will give you hope and inspiration.

On Instagram I follow a lot of people with chronic illnesses and I can honestly say that I love them. (is that a song?) They are true warriors and inspire me everyday. So get on social media and put yourself out there. You will meet wonderful inspiring people, people with insight, advice, and compassion. Most of all; go find your hero.

All the Best,
Barbara