Letting People Know You Need a Kidney

Your kidneys are in trouble. They aren’t filtering your blood like they should. You need a kidney transplant. With the deceased kidney transplant waiting list growing longer by the day, living donation is an increasingly viable popular option. 

But how do you let people know of your need for a kidney? How do you talk about the subject in a way that might trigger someone’s desire to donate? 

Being in need of an organ to sustain your life isn’t something that happens to you every day. Neither is asking someone to undergo surgery to give you one of their internal organs. So it’s understandable you may have trouble knowing where and how to start.

In this section, we’ll talk about some of the ways to have a conversation about the need for a kidney and some of the places you can look to uncover a potential candidate.

Preparation
Before you begin talking to family and friends about your need for a kidney, make sure you’re prepared and well-educated on the subject. By educating yourself about living donation, you will be more knowledgeable about the transplant process overall and be better prepared to answer questions that might come up.

Sharing Your Story
Once you’re educated, you need to communicate your need to others. When talking with family and friends, be sure to speak from the heart. Your sincerity will help you connect emotionally with people who are hearing your story. If you aren’t sincere, people won’t take you seriously. 

Depending on how you communicate with others, there will be varying degrees of knowledge about your kidney health. Some family members and friends may know about it because they have been following your health situation. But outside of that immediate circle, people simply may not know your kidneys are in trouble.

Because there is a natural apprehension about asking others to give and more so, when you are asking them literally to give a part of themselves, it’s best to start with your closest family and friends. You’ll have an easier time initiating the conversation and choosing the right words to express your emotions. Each conversation you have will make you more confident, and the information will begin to flow more easily.  



Enlisting Help
If you’ve started sharing your story with your closest family and friends and haven’t found a compatible donor yet, turn this tight-knit circle of those who love you best into your own personal advocates. Ask them to share your story and need for a kidney with others in their lives. But first:

1. Educate them. Not just about your need for a kidney but about the entire living donation process. Send them to this website. Make sure they’re armed with all the information they’ll need to have an intelligent, passionate conversation with potential donors.

2. Prepare them to discuss their own reasons for not donating. Perhaps they’re not a match because of an incompatibility or a medical condition. No matter the reason, people will want to know why your closest family members and friends aren’t donating themselves.

3. Keep your advocates informed. Let them know how you are doing and how the process is going so they can pass along the information to others.

Remember, if someone volunteers to donate but is not a suitable candidate, there are “paired kidney donation” programs which match incompatible donors with others in need to facilitate more transplants.  You can learn more about these programs in the “Paired Kidney Donations” section of the Kidney Transplant Navigator.

How Do You Ask Someone to Give You a Kidney?
Most potential recipients think that if someone wanted to give them a kidney, they would have offered.  But on the flip side, no one can offer to help if they don’t know you are in need.

The first group to approach is your family and close friends. Tell them about your declining renal function and the best options for your outcome. Then let it soak in. Time is needed to absorb what you’ve told them. It’s usually not the best approach to come right out and ask if someone will give you a kidney. Everyone processes information differently, so let them react naturally. This takes the pressure off of actually asking someone for a kidney and allows you to just focus on your story and raising organ donation awareness. You never know. Perhaps your story (or the story you are telling on someone’s behalf) will strike a chord with some good-natured person who will want to offer the gift of life.  

You’ll also want to practice responses to questions you may get from those hearing your story. Some may be questions of curiosity about the need and procedure. Others may be more directed toward your reason for asking them. Either way, the better educated you are and the more practice you have in answering these questions, the calmer you can remain if the question catches you off guard.

Staying On Task
The process of asking people for a kidney and enlisting advocates to help spread the message can create stress and be emotionally draining. But don’t let that deter you from your mission. Here are a couple of steps to help you stay on task.

• Enlist Help. As mentioned before, most people aren’t very comfortable asking someone to do something that could potentially cause them harm. Surround yourself with a core group (advocates) who know you well, care about you and understand what you are going through. Once you’ve provided the education they need on your situation and transplants in general, turn them loose. It’s much easier for someone who knows you and cares about you to do the asking than it is to do yourself.
   
• Create a List of Potential Donors. Make a list of everyone you know who may be a possible donor. Include family members, friends, work associates and individuals you know from professional organizations and your place of worship. Don’t worry about whether or not they will make a good candidate at this point.  Just create a list.
   
• Review Your List. While looking at your overall list, make a note of the ones you consider healthy and potentially courageous. Maybe they’ve done something kind or noteworthy in the past for others. Maybe they are in a line of work that requires bravery or compassion. The people who have these characteristics may be predisposed to consider donating a kidney.
   
• Put Your People to Work. After you have refined your list, pick who you will talk to personally and assign your advocates to talk to specific people based on the qualities known of each. By matching a possible candidate with the right advocate, you can discuss the strategy of how you think they can best be approached.
   
• Spread the Word. You or your advocates may want to send an email or letter to everyone on the list you have created.  Now is the time to share the personal story along with what you know about kidney transplants. This will enlighten others about the need for a living donor and help you expand the network of people who may be interesting in providing assistance.
   
• Partner with the Media. Some people work to engage the media (radio, television, newspaper) in some form to help raise awareness of their need for a kidney. The news organization will consider several things before covering the story.  Much of that decision is based on the person in need and how dire or how moving their story. To get the most out of this approach, help the news organization understand how this story can impact their readers, viewers or listeners. You can outline your story by clearly and concisely communicating the circumstances that have brought you to where you are – and the benefit that will come if you were to receive a transplant. To increase your chances of getting a bite with this method, put something in writing which explains your situation. You can then send this to media outlets in your community for consideration. If you don’t think you can write a story about yourself, ask someone close to you to help. Media outlets tend to look for an angle that affects the most people, so highlighting the need for organ donation is a good “hook” for kidney transplant stories.
   
• Keep the List Fluid. For whatever reason, many potential donors are not able to donate. You could have 20 possible donors lined up, but none of them can donate. So it’s best to keep looking and asking until the final tests are done and the surgery is just a short time away. Always keep your options open.

Talking Points

How do you sum up all the facts, feelings and emotions necessary to help people understand your need and pique their interest to want to help in some way? While it may sound difficult, it’s really not.  

If you think about it, most of us are usually pretty comfortable talking about things we’re knowledgeable about. The more you know, the easier it flows. The same thing goes for your need for a kidney transplant. The better you educate yourself about the process, the easier it will be to talk to others about the need for a transplant and the process itself.

But it takes a little practice to get your story where you want it to be. If you can, practice with a trusted friend who can give you honest feedback. As you take that feedback into account, continue to practice your story until you are comfortable with it and can share it with others.

Organizing Your Talking Points

Everyone’s communication style is different. You will most likely adapt your story and approach based on who you are talking to as well. However, if you remember to fold in some key points into each conversation, you will ensure you have covered all your bases – no matter how it comes out.

Points You Need To Get Across

There are certain points of information you need to get across in your conversation to give your listener a solid background and understanding of your situation. These include:

• Why you are in need a transplant (what caused your problem)
• How you are doing right now
• Why a transplant will help you
• Where transplanted kidneys come from (waiting list/living donation)
• People who are healthy can usually donate

Also Important
If you conversation is going well, you can also move to work in some other points to further expand on the transplant process. Some of these topics can include:

• Why living donation is preferable
• How people are matched for a transplant
• The surgical process

Handling Feedback

As mentioned before, the point of having these conversations isn’t usually to ask for a kidney.  However, if someone has questions, let them ask. This will help them feel more comfortable. Additionally, you want to make sure they know you aren’t asking them for a kidney right now – even if they start making positive remarks in that direction. This decision isn’t something that should be made at the spur of the moment. Finally, if during one of your conversations someone does offer a kidney, you should let them know they can back out of the process at any time for any reason.
 

Goal

The main thing you want to do with these conversations is to build interest. The more you heighten awareness and make people curious, the more productive it becomes. So how do you do this? Let people ask questions. By satisfying their own curiosity, it might help increase their desire to want to give. At the very least, awareness of the need for more organ donation has been shared with another person.  

I Want to be a Donor

What do you do when someone says they want to give you a kidney? Obviously you’ll want to thank them – but, again, you’ll want to remind them that if any time they decide donating a kidney isn’t for them, they can back out with no questions asked. Let them know you understand that might come up as they continue to think about the process as a whole.  

If they continue to want to be considered a donor candidate, you can provide them with the name of the transplant hospital where you are having your transplant so they can be tested. The hospital will then schedule a series of test to determine if they are a viable candidate for you.

As mentioned before, even if someone has offered a kidney, you shouldn’t necessarily stop asking others. There are many reasons a person might not be the ultimate donor. Most hospitals have their own procedure for testing potential kidney donors. Some of the testing can last a month. With that in mind, you don’t want to lose that time counting on just one person in the event they don’t work out. Keep your options open. Keep sharing your story.

Sample Scripts

Elevator Speech

An elevator speech is a quick, concise overview of project or idea. The name reflects the fact that an elevator pitch can be delivered in the time span of an elevator ride (for example, thirty seconds and 100-150 words).

You want to use this technique to provide a general synopsis of your situation and need and deliver it in a manner that will pique someone’s curiosity enough to want to hear more.

When crafting your elevator speech you’ll want to be sure to cover your main points in about 30 second.  It is suggested you talk about 10 seconds each on three main points. These should include some variation of the same points in your overall talking points.
 

• Why you are in need a transplant (what caused your problem)
• How you are doing right now
• Why a transplant will help you
• Where transplanted kidneys come from (waiting list/living donation)
• Most people who are healthy can donate a kidney

Here’s an example of an elevator speech:

It’s hard to tell what’s going on inside someone’s body just by looking at them.  In my case, my kidneys are failing. My doctor says they will shut down in the next couple of months. My hope is to get a transplant so I don’t have to go on dialysis, but the waiting list is several years long. Fortunately, living kidney donation is a viable option, but most people aren’t aware of the process. It’s not as popular yet as most people don’t know you can live just fine with one kidney.   So I’m doing my best to educate everyone I can.

Obviously what works best for you will be different than anyone else. An effective talk is something that feels comfortable for you and conveys the important parts of where you are in your need for a kidney.

Sample Scripts

For someone who is speaking on your behalf – an advocate – a message or discussion to inform others can take many forms.  Again, it’s got to be something they are comfortable with to be sincere. But like any approach, it needs to cover some of the main points and help educate along the way.  Here is sample script from a website called Kidney Kinships which encourages people to learn more and get involved in living kidney donation.

My friend Risa inherited a genetic kidney disease (known as Polycystic Kidney Disease - or PKD) which is rapidly squelching her remaining kidney function. Since PKD has no treatment or cure, Risa only has two options: (1) get a kidney transplant, or (2) spend the rest of her life on dialysis. While transplant is the superior quality-of-life choice, it can be the most challenging with 83,000 people waiting ahead of Risa on the national kidney transplant list.

Sadly, the average wait on this list can be five years - or more. And while I thought I was already doing my part by declaring my intentions to be an organ donor (on the back of my driver’s license), I now see our nation's organ shortage cannot rely on deceased donation alone.

Through living donation, a healthy person can donate one of their kidney's while they are still living! Living donors also allow those in need to circumvent the need for dialysis, (which can be extremely hard on the body). Kidneys from living donors also offer a number of superior benefits, from greater success rates to nearly double the years of function.

Living donors not only help those in need get a healthy "living" kidney (when they need one); they also prevent those in need from getting sicker (or dying) while they wait. I think "living" kidney donors are the "energizer bunnies" of  human kindness, as their donation keeps on giving a "daily dose" of life!

...I wish I was (younger/healthier/a different blood-type), so I could donate one of my kidneys.  If you were healthy enough to do so, would you ever consider donating one of your kidneys?"

Again, you’ll need to get your main thoughts on paper then do some editing to get your story or letter to the place where it’s comfortable to you. But once you hit that point, you will become more and more confident with every conversation you have.

If you have a story or set of talking points you’d like to share with others, click here to send us an email and we’ll add them to our library so others can see how others are using words and ideas to tell their story.