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ALANA, RECIPIENT:

My healthcare team stressed the importance of being transplant ready because once you get that phone call, the process moves very fast. From the time I received the call to receive my transplant, it took about 11 days and moved really, really quickly and so that's why it was very important that I was always transplant ready because 11 days is not enough time to do all your lab work and all the preparations that's needed.

HEATHER, DONOR:

For me, because there was such a short time between the time I made the decision to be tested to the time that I actually donated, it was remaining focused on the goal. It was trying to lose weight. It was not taking unnecessary risks. It was avoiding sick people. It was staying healthy. It was eating right. It was doing all the things that I needed to do to be able to make this a success for my recipient.

BUDDY, RECIPIENT:

It was important for me to be transplant ready because if I wasn't transplant ready, I may not have been able to receive the kidney that was offered to me. The doctors wanted me to take care of myself before and after the transplant, so I wanted to make sure that I could keep the kidney that was donated to me.

STEVE, DONOR:

As a donor, being transplant ready means continuing to take care of yourself, to be healthy, which got you to this point as being a prospective donor. But also I wanted to pass these tests because I didn't know who was going to get my kidney, but I knew if I kept passing tests, somebody was going to get it and I wanted them to have as healthy a kidney as I could possibly give them.

REGGIE, DONOR:

It was important for me to stay transplant ready so that I can donate my kidney to my wife.

BOBBI, DONOR:

I felt really empowered being transplant ready. I felt like I had made an informed decision and that I was confident in my decision, and I felt as though I could help my family at the same time being transplant ready. As a donor, my healthcare team was very good about making sure that I was prepared for donation. They had an advocate reach out to me individually to speak to me about my rights as a donor, and they also really stressed the importance of me maintaining my physical strength and well-being for the lead up to the transplant surgery itself.

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STEPHEN, RECIPIENT:

Being on the transplant list is a marathon, not a sprint. Be prepared to receive multiple calls before an acceptable match is found. It's not uncommon to find out, often at the last minute, that there is a problem preventing the match from being completed.

STEPHEN, VOICE-OVER:

Still, it is important to maintain a current plan so you're ready to go when the call does come in.

SCOTT, RECIPIENT:

While waiting for the transplant, keep current on doctor visits and screening tests, such as lab tests and colonoscopies.

SCOTT, VOICE-OVER:

Make plans in advance with your family and friends so they are aware of what needs to happen when you get the call. You'll likely need to drop whatever you have going on and head to the transplant center.
Many people have a bag packed so they’re ready to go at a moment’s notice.
Some of the things you may want to consider are establishing a partner who will be ready to drive you to the transplant center, and one who will be staying with you once you are released from the hospital.

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AIMEE, RECIPIENT:

Prior to my transplant, I wish I would have known all of the different options for transplant that were available to me, because the more information you have, the more empowered you are, and the better you can make the decision that's best for you.

SCOTT, RECIPIENT:

When I found out that I needed an organ transplant, the first thing I focused on was finding a living donor and then figuring out how I was going to actually find that person. I'm in public relations, so I kind of looked at this as a challenge. I need to find that one person that is a match for me, so what do I do? There wasn't social media as it is now, so I simply wrote down my story, attached the document to an email and sent it to everybody that I knew. Fortunately, my donor got the email from somebody else, and thought about it and decided to be, or attempted to be, a match for me, which she was.

ALANA, RECIPIENT:

I shared my need for a kidney by creating an Instagram page and letting anyone and everyone know how much I wanted to get a kidney transplant. I shared my journey and I let everybody know what stage of the journey I was in.

BOBBI, DONOR:

I actually saw a local news piece about the need for kidney donations and it just made such sense to me and I knew at this point in time if it was my family member, I would want someone to step up and donate. And I did my research, and I knew at that point in time, if I was healthy enough to donate, I absolutely would donate.

SCOTT, RECIPIENT:

It was so important for me to be my own advocate because I knew one way or another, my story needed to get out there. I consider myself to be an extrovert, so relatively speaking, it was easy for me to tell what the need was. For other people who consider themselves introverted or just really kind of quiet, the bottom line is, there's a story to tell, and if you can't do it, you need to find somebody who can be an advocate with you and for you to get the job accomplished.

HEATHER, DONOR:

I always knew that I wanted to be a donor when I died, and had talked to my family about that decision, but suddenly I was presented with an opportunity to help someone by being a donor while I was still alive. So even though I had never thought of it before, and I don't know why I hadn't, I was thrilled that I was able to see this happen while I was still alive and see the results of that.

BUDDY, RECIPIENT:

It was important for me to know what to expect prior to the kidney transplant. It sounds cliché, but knowledge is power. I needed to know what to do to take care of the kidney before and after surgery. I wanted the kidney to last a long time.

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SCOTT, RECIPIENT:

Kidneys used in transplants are from either living or deceased donors. There can be many benefits to living donation:

SCOTT, VOICE-OVER:

The kidneys usually function well and may last for 15 to 20 years. With a living donor, the transplant may happen more quickly, such as within one year of finding a donor, which means spending less time on dialysis. Living donation may allow for a pre-emptive transplant, potentially avoiding dialysis. This, in turn, may lead to better outcomes because post-transplant success has been shown to be tied to the length of time spent on dialysis. Finally, the length of time the kidney is outside of the human body and stored in a chilled environment is reduced, which is also associated with better outcomes.

AIMEE, RECIPIENT:

The most common type of transplanted kidney is a deceased donor kidney. Deceased donor kidneys come from people who have graciously consented to become organ donors upon their death to help people just like us on the transplant waitlist. The kidneys will only be used if they are healthy, and stringent testing is done to ensure the donor's kidney is a good match for the recipient and likely to function well. On average, kidneys from deceased donors typically last about 10 years, but they can last for your entire lifetime.

ALANA, RECIPIENT:

Regardless of what type of kidney you pursue, the most important thing is to...

ALANA, VOICE-OVER:

...remember to be a self-advocate. It's up to each of us to actively engage with our transplant teams and healthcare providers to get the quality treatment we want.

Be sure to discuss any concerns and questions you may have with your healthcare team. They're there to help you.

AIMEE, VOICE-OVER:

So how do you find a living donor? While it may be difficult to start the conversation, according to the United Network for Organ Sharing, or UNOS...

...one in four people says they'd be willing to donate an organ if asked. And 90-percent to 95-percent of people who have donated organs say that they would make the same decision again.

With the advent of social media, there are more ways to connect with people today than ever before. One big thing to remember - it's important that people don't just see you as someone that needs a kidney, but as a person. Tell them what you're passionate about, share photos of your family and loved ones. Being able to see you as a person can help people relate to your experiences.

STEPHEN, RECIPIENT:

Tell your story - anywhere and everywhere you possibly can. You never know where or when you may meet a donor. Increase your visibility, both physically and virtually. It's not always easy to put yourself out there, but one of the most important pieces of advice for finding a living donor is simply...

STEPHEN, VOICE-OVER:

...getting your story out there in as many ways as possible. Sharing honest and frequent news regarding updates to your health can also help stir people to action.

It can sometimes be hard to advocate for yourself, but...

...finding a champion who will help you share your story might be an option for you. A champion is someone who advocates on your behalf, helps share your story, and helps your personal network better understand what you're going through.

Your transplant center can be a great place to start for patients considering a living donation kidney transplant. The center is a wealth of information and can provide you with valuable educational resources to share with your friends, family and other people in your support network.

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SCOTT, RECIPIENT:

When you're told that you are in need of an organ transplant, you have a lot of options, and choices obviously are very good. The one option that you do have that people don't realize is what's called a paired donation. You may have a friend who would like to donate to you but they aren't necessarily a match. There are a lot of people in this world who are in the exact same boat and one of them might be a match for you, just as your friend might be a match for their friend.

HEATHER, DONOR:

It's really important for people to know about the paired kidney donation program because when a donor is tested and has all their hopes focused on being able to donate to their loved one or their friend, and then they're told that they are not a match and can't donate, it can be shattering. It destroys all of the hopes. And so the paired kidney donation program provides hope when there was no hope before these programs existed. So a donor who is not a match for their intended recipient can donate to another recipient while the intended recipient gets a living kidney donor from someone else who is a match for them. So before these programs were in existence, when donors were told, "No, you are not a match," that was the end of the story. So with paired kidney donation, the story continues and more and more people are getting transplanted through this mechanism.

STEVE, DONOR:

I didn't know about the paired exchange program before donating. I learned about it during the process, during the healthcare team testing process, but I didn't realize that if I passed all these tests, which I did, that then my kidney was actually going to start a chain of four donations.

SUE, DONOR:

As a non-directed donor, although I didn't know my recipient, I knew I would at least be able to help one person. Four months after having my donation surgery, I learned that I was part of an 18-person paired exchange series. I learned that I was the first surgery on a Monday and by Friday afternoon nine people had donated and nine people had received kidneys.

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STEVE, DONOR:

There are 3 types of living kidney donation options for donors:

STEVE, VOICE-OVER:

The first is called a direct donation, which is when the living donor chooses the person he or she wants to give his or her kidney to. This kind of scenario typically involves relatives or close friends.

The second type is called a paired-living donation. What’s important here is that you are looking for a donor, not a match.

Two or more patients will have a donor that isn’t a match for them but may be a match for someone else. The patients will then swap donors so that each patient receives a kidney from a donor that is a match for them. Your donor will be paired with someone else’s and you will receive a kidney from another person’s donor in return!

Remember, it’s about finding a donor and not a match. All you need is a donor to enter a paired exchange program.

The final type of living donation is called a non-directed donation. This is when a living donor does not name a specific person who should receive his or her kidney. The kidney can be given to anyone in need of a kidney who is a suitable match.

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