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Being Transplant Ready

Donors and recipients share why being transplant ready was important to them as well as tips to help others be transplant ready.

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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.


    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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    Sanofi does not provide medical advice, diagnosis, or treatment. The health information contained herein is provided for general educational purposes only. Your healthcare professional is the best source of information regarding your health. Please consult your healthcare professional if you have any questions about your health or treatment.


    MAT-US-2011599-v2.0-10/2024

Educating & Advocating for Yourself

Recipients discuss how they got the word out about their need for a kidney transplant, while donors talk about what motivated them to give. This video also includes education on the difference between living and deceased donation.

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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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Transplant Day

Donors and recipients talk about how they prepared themselves for transplant day as well as what a typical transplant surgery and recovery entail.

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    SUE, DONOR:

    I prepared myself for transplant day by first of all educating myself. I watched a laparoscopic kidney donation surgery online. I also read a lot about being a kidney donor. I felt comfortable that all my questions were answered from my transplant center, so I felt like I was educated about it.


    ALANA, RECIPIENT:

    On transplant day I felt excited and ready to go. It wasn't my first transplant, so I knew what receiving a healthy kidney would feel like, and I was so looking forward to getting my energy back.


    SCOTT, RECIPIENT:

    On the day of my transplant, I really felt good because I had prepared for this day for a pretty long time, and so the day of my surgery was kind of a natural progression. I got a really good night's sleep the night before, woke up feeling really great.


    BOBBI, DONOR:

    On transplant day, I had a remarkable sense of calmness. I was ready to go. I was confident in my decision and I was really excited because I knew that my recipient was going to be in the next room and this was going to give her a second chance at a new life.


    SCOTT, VOICE-OVER:

    I didn't realize how bad I felt until I actually had a kidney transplant. I told the doctors before I went back that if you can make me feel as good after transplant as I do right now, I'll be perfectly happy with that. And I was surprised to find afterward that I actually felt significantly better than I did before the procedure started.


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    ALANA, RECIPIENT:

    When you’re making preparations for your transplant day, it’s nice to have an idea of what the transplant day will potentially look like.


    BOBBI, DONOR:

    Living donor kidneys are usually removed in one of two ways:


    BOBBI, VOICE-OVER:

    either with an open surgery, which is a large incision in either the abdomen or the side of the abdomen, or laparoscopically, which is a less invasive procedure using small incisions in the abdomen. Laparoscopic surgery has become much more common. This surgery usually takes about two to two-and-a-half hours and is performed under general anesthesia.


    SCOTT, RECIPIENT:

    The donor’s hospital stay is typically only a day or two. Recovery time is about a month. Most people who donate a kidney return to their normal activities within 2 to 4 weeks. And it’s recommended that women wait for 6 months before becoming pregnant.


    ALANA, VOICE-OVER:

    The actual surgery for the kidney recipient takes anywhere from three to five hours, but the whole process from getting prepped for surgery to waking up in the recovery room will typically take 4 to 8 hours. The procedure requires you to be under a generalized anesthesia for up to 5 hours.


    BOBBI, VOICE-OVER:

    Typically, doctors will not remove non-working kidneys – they leave them in your body. The surgeon places the new kidney into your belly, which is not where kidneys are located naturally. The surgery is performed in this manner because it is the easiest way to connect the new organ to important blood vessels and the bladder.
    Serious complications can occur during or immediately after the transplant surgery but affect fewer than 5% of patients. Some of the serious risks include problems with anesthesia, which may include confusion, pneumonia, stroke, or heart attack. Other risks include infection, fever, and bleeding or blood clots.
    After a transplant, kidney recipients will need to take anti-rejection medication for the rest of their lives to prevent their bodies from rejecting their new kidneys.


    ALANA, VOICE-OVER:

    When someone has a kidney transplant, his or her new organ often begins to function almost immediately.
    The new kidney starts producing urine either during the surgery, or very soon afterward. Because of this, during the transplant, a catheter is placed into your bladder so the urine the new kidney is producing can easily drain.


    SCOTT, VOICE-OVER:

    Some people may experience delayed graft function (also called DGF), which means that their new kidney is not working ideally right after surgery.
    DGF occurs in up to 30% of deceased donor transplant surgeries, and patients may have to be on dialysis for a short time until their newly transplanted kidney starts working optimally.
    Most people receiving a kidney stay in the hospital from a few days to up to a week, and then spend the rest of their recovery time at home.
    Recovery typically takes about a month, but as time goes by, you should start to feel better and be able to return to your previous level of function.
    Some people feel more energy after the transplant because their new kidney is working.
    It is important to work with your healthcare team to gain a complete understanding of any medical procedures before making treatment decisions.


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    Sanofi does not provide medical advice, diagnosis, or treatment. The health information contained herein is provided for general educational purposes only. Your healthcare professional is the best source of information regarding your health. Please consult your healthcare professional if you have any questions about your health or treatment.


    MAT-US-2011601-v2.0-10/2024

Paired Living Donation Exchange

Learn how finding a donor - but not necessarily a match - could be an option for you.

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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. And so the paired kidney donation program provides hope 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.


    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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    Voiceover:

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


    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.


    (Disclaimer) Sanofi does not provide medical advice, diagnosis, or treatment. The health information contained herein is provided for general educational purposes only. Your healthcare professional is the best source of information regarding your health. Please consult your healthcare professional if you have any questions about your health or treatment.


    MAT-US-2011602-v2.0-10/2024

Underutilized Kidneys

Donors and recipients share information on underutilized kidneys.

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    SCOTT, RECIPIENT:

    If you have the need for a kidney transplant, it is really important to understand that you have choices and everybody likes choices, no matter what you're going into. For me, I was solely focused on finding a living donor, but there's the option also of deceased donors. I know people that have gone through that. And also the option, this day and age, of underutilized kidneys.


    STEPHEN, RECIPIENT:

    Twenty-one years ago, when I had my kidney transplant, there weren't many options available. Now, there are plenty of options available and after having been educated, I understand that there were numerous options available, including the underutilized kidneys, which is something that I will definitely investigate further as I get ready for my next transplant, should that day come.


    AIMEE, RECIPIENT:

    I know more now, or today, about the transplant process than I ever knew when I was going through the transplant process. One of the things that I wish that I would have known then that I know now is all of the different options for transplant. And really being able to inform myself about those options, as well as having someone to answer those questions, and kind of guide me through that process.I think it's incredibly important to be an informed patient so that you feel empowered to have those conversations with your transplant team, and know that you are making the best decision for you.


    BUDDY, RECIPIENT:

    Today, I would consider all options for a kidney transplant, including underutilized kidneys.


    BUDDY, VOICE-OVER:

    You might think that you don't have a lot of choices when you go into this, but believe me, you do. And the best thing you can do is consult with your doctor and let him or her explain what options you have.


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    Voiceover:

    Although deceased donor kidneys are the most common type of kidney transplant, only about 21,000 were done in 2023 with almost 90,000 people on the waitlist. Unfortunately, some of these organs have very high discard rates and are thrown-away, even though they may have benefited the right recipient. We call these “underutilized” organs. We’re going to talk about two types of underutilized organs that you may want to discuss with your doctor.


    HEATHER, DONOR:

    Deceased donor kidneys are assessed at a score between 0 and 100, which reflects how that kidney compares to all kidneys transplanted the previous year, based on a predetermined set of criteria. For example,


    HEATHER, VOICE-OVER:

    a KDPI score of 30 means that kidney was in the top 30% of kidneys transplanted the prior year. A KDPI score of 70 means that 70% of kidneys transplanted the previous year had a better KDPI score.
    Low KDPI kidneys are typically offered in priority to younger patients, without diabetes, who may have a longer life-expectancy, but high KDPI kidneys might be appropriate for someone who may be older or a person who could potentially benefit from receiving a working organ sooner. High KDPI-scoring kidneys undergo a very thorough screening process, so they are still functional kidneys, suitable for transplant. Ethically, doctors would never place an unhealthy organ into a living person. Written authorization is required by the transplant center before a high KDPI kidney offer can be made to the person on the waitlist. Only about half the people on the waitlist have given authorization, and so high KDPI kidneys are considered underutilized.
    *disclaimer: You always have the right to refuse any organ that may be offered to you, even if you signed an agreement form stating that you would accept a high−KDPI-scoring kidney.


    SUE, VOICE-OVER:

    Another category of underutilized kidneys are infectious risk organs. Due to the recent opioid epidemic, there has been a significant increase in kidney donors who have died from drug overdose. These donated kidneys are more likely to be classified by the US Public
    Health Service as being at...
    an "increased risk for disease," or IRD.


    HEATHER, VOICE-OVER:

    IRD kidneys:- Are from donors at higher risk of infectious diseases such as hepatitis C or HIV- Tested for infectious diseases and the results come back negative- Have a very small (4 in a thousand) chance of being false negative- Usually in good health, as the donor’s lifestyle typically affects the liver and the kidneys are not especially harmed


    VOICE-OVER:

    Considering an IRD kidney is a decision you should discuss with your healthcare team to determine if it is right for you, but there are a few resources that may help you better understand the potential risks and benefits.
    Johns Hopkins offers an IRD Kidney Transplant Calculator that provides a personalized estimate of patient survival of accepting an IRD kidney vs remaining on dialysis, and InformMe offers a web-based app to help patients make informed treatment decisions about whether an IRD kidney may be a good fit for them.
    When you use these sorts of tools, please remember that the tool only provides information based on what an average patient with your characteristics has historically experienced. These tools do not know all the details of your specific situation, so consult with your healthcare provider before making any decisions.

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    (Disclaimer) Sanofi does not provide medical advice, diagnosis, or treatment. The health information contained herein is provided for general educational purposes only. Your healthcare professional is the best source of information regarding your health. Please consult your healthcare professional if you have any questions about your health or treatment.


    MAT-US-2011603-v2.0-10/2024

Remember, when awaiting a transplant, it’s important to:

KTC education yourself

Educate yourself about your transplant options

KTC actively engage

Actively engage your transplant team

KTC remember

Remember that you are not alone – reach out to your family, friends, and support groups

KTC stay

Stay “Transplant Ready”

Following are online resources you might find helpful.

Download a copy of the Kidney Transplant Resources found above.

The health information contained herein is provided for general educational purposes only. Your healthcare provider is the single best source of information regarding your health. Please consult your healthcare provider if you have any questions about your health or treatment.