Talking About Living Kidney Donation with Family and Friends

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1 Talking About Living Kidney Donation with Family and Friends

2 Purpose of this guide Y ou may be a person who has kidney disease. Perhaps you know someone with kidney disease. Talking about kidney disease and treatment with your family and friends can be hard. But, it can help them know what is going on. It can also build the support you all might need. This guide can help you talk about kidney disease with your family. Small talks now can make a big difference later.

3 What s inside? This booklet has seven parts: Questions & Answers about Kidneys and Transplantation...2 If You Need a Kidney...4 If You Know Someone Who May Need a Kidney...12 Concerns about Relationships and Living Kidney Donation...20 Conclusions and Resources...22 Glossary...24 Contacts and Notes...26

4 1 Questions & Answers about Kidneys and Transplantation Q: What are kidneys and what do they do? The kidneys are small, bean shaped organs on either side of your spine. The main function of the kidneys is to take out waste from the body. They make urine from the waste. Q: What happens if my kidneys stop working? Kidneys can stop working for many reasons. If this happens, you will need treatment to take out the wastes. You will need either dialysis or a transplant. This booklet is about transplants. Q: What is a transplant? A transplant is a surgical process. In a transplant, a donor s healthy kidney replaces the recipient s failed kidney(s). This new kidney takes harmful wastes out of your blood. Q: Where does a transplant kidney come from? A transplant kidney can come from two places. It can come from someone who just passed away. It can also come from someone living. Kidneys from deceased donors are distributed by a waiting list. 2

5 Q: How easy is it to obtain a kidney for a transplant? Many more people are waiting for kidneys than there are kidneys available for transplant. There is a waiting list for kidneys from deceased donors. There is no waiting list for a living kidney transplant. Q: What is a living donation? Healthy people have two kidneys. They can live a normal life with only one. If a person wants to, he or she can donate one kidney to someone who needs it. This is called a living kidney donation. Q: Who do living kidney donations come from? Most living kidney transplants come from family related by blood (brother, sister, parent). If you don t have family who can donate, that s ok. A friend, spouse or co-worker can donate to you. Doctors check to see if this kidney will work in your body. If it would, then the transplant process can start. Q: Who can be a living kidney donor? To qualify as a living donor, someone needs to be in good shape and in good health. He or she can t have high blood pressure, diabetes, cancer, or kidney, heart, liver or lung disease. The person cannot have HIV or hepatitis. Talk with your doctor about your ability to be a living kidney donor. 3

6 2 If You Need a Kidney This part will cover issues that you may most want to know about if you need a kidney. It has four sections: Questions and Answers about Living Kidney Transplantation Talking about Kidney Disease Sample Conversations of What to Talk About What to Expect After the Talk Questions and Answers about Living Kidney Transplantation This section has answers to questions you might have about living kidney transplantation. What are the steps I would go through if I received a living kidney transplant? You would go through these steps: Informed consent Blood tests Urine tests X-rays Heart tests Mental health assessment Meet your kidney doctor (nephrologist) Meet with transplant coordinator (person who works with doctors and you to organize the transplant process) 4

7 Meet with transplant surgeon Meet with anesthesiologist (doctor who prevents patient from feeling pain during surgery) Surgery Recovery time at hospital Recovery time at home Continued follow up with transplant team Take medicine to avoid rejection of a kidney Would I have to take time off from work if I need a transplant? Yes. It is important to talk with your doctor and employer about your options. Recovery time can vary and could possibly last from months to years. How would a transplant impact my financial situation? Private insurance and Medicare will cover the cost of the surgery, clinic check-ups, labs and most of the medicine. However, if you are under 65, after three years, you will not be eligible for Medicare anymore. You will need to plan for private insurance to pay for these medicines and costs. Costs can range from hundreds to thousands of dollars per month. What you will pay depends on your insurance. In some states, special programs are available for kidney recipients that will help pay for drugs and other costs. Every individual s insurance is different. It is important to speak with your insurance company about what they will and will not cover in terms of a transplant. 5

8 Who can I talk with about finances and living kidney donation? Talking to a social worker, a financial advisor and your insurance provider will help you in this process. How can I get more information about what Medicare will cover? Contact Medicare for details about what it does and does not cover, resources for support and the process of Medicare coverage. You can contact them via or MEDICARE ( ). Would I have to see doctors after the transplant if I receive a kidney? Yes. You will need medical care for the rest of your life. Right after your transplant, you will need to see doctors often. After a few months, you may be seen less often. Would I have to take medication after I receive a kidney? Yes. You will need to take many kinds of medicine. Some of these you will take for the rest of your life. These medicines are crucial for the new kidney to work. Not taking the medicines may cause your transplant to fail. Would I feel any pain after the transplant? This is major surgery that can result in pain and complications. It is important that you talk with your doctor about the risks. After receiving a kidney, would I be able to eat what I want to? You may be able to eat a wider range of healthy foods. Your doctor will give you advice about what you can eat. 6

9 Talking about Kidney Disease This section explains why talking about kidney disease with your family is important. Talking about this might be hard for some. To make these talks easier, here are tips for what to say and how to talk about kidney disease and treatment. Why is talking about treatment for kidney failure important? Talking about your options may help you feel more in control. Talking with family and friends can help answer your questions about treatment. If you talk about treatment at home, it may make talking with your doctor easier. This can help you get what you want for your treatment. Talking with your family may help you make a good choice. Your family and friends can t read your mind. Talking can help all of you know what s going on. This may be a chance for those close to you to help. Talking about it may help build the support you will need. How do I talk about kidney disease and living kidney donation? Choose a time that is good for you and your family and friends. Decide ahead of time if you want to talk to each person alone or in a group. 7

10 Make notes about what you would like to say ahead of time. It is not wrong to feel angry and upset about kidney disease. Try not to be angry at those close to you about being sick. If you are angry, try to explain why. Be patient. These decisions take a long time to make. What do I talk about? Emotions How does it feel to talk about being sick? How do you feel about talking about living kidney transplantation? How would you feel about having another person s kidney in your body? Are you worried about putting someone at risk if they want to donate? How do you feel about the care you d receive at a hospital? What are your thoughts about how a transplant might change your daily life? How would receiving a kidney from a relative affect you? Your family? How would transplantation match with your values and beliefs? How do you feel about possibly needing months, maybe years to recover? Do you feel pressured to accept a kidney? 8

11 Support (Emotional, Physical, Spiritual, Care-taking) Would you like to talk to someone? Would you have someone who could help you through this process? What kind of support do you have at home, in your neighborhood or in your community? What kind of help do you think you would you need? Can someone go to the doctor with you to help ask questions? Who would help you make this decision? Do you know anyone else who has thought about donating a kidney? About transplantation? Can you talk to someone who has had a living kidney transplant? Planning Who would you like to have help you make this decision? What can you do now to be healthy? What are the pros and cons of having a transplant? Of not having one? How would a transplant and recovery time affect your financial situation? Would you have health insurance after Medicare stops? What will it pay for? Once Medicare stops, would you have enough money to pay for medicines, medical visits or tests that you will need? How might this affect your spouse, partner and/or close family members or friends? 9

12 How would a transplant affect your daily activities? Your family s daily activities? Possible Conversations These examples can give you ideas about what to say to family and friends. How can I tell people that I have kidney disease? I want to talk to you about my health. My kidneys don t work well on their own anymore. I m talking with my doctors about treatments. How can I let people know that I need a kidney without asking? My kidneys are failing and my doctor said I may need a transplant. A living kidney transplant may offer the best outcome. I need your support through this. What do I say to someone who wants to donate a kidney to me? It means a lot that you want to do this for me. I want to make sure this is what you want to do. We both need time to think about this. Are you ready for this? Is your family okay with it? What do I say if I have concerns about someone donating a kidney to me? I want to make sure you don t feel pressured to make this decision. Please take time to think about this. It is okay if you change your mind. 10

13 What do I say if I have changed my mind about getting a transplant? Dialysis has been different than I thought it would be. I want to think about transplantation as an option now. I ve decided that a transplant is not right for me. What if I m concerned about the safety of the donor? My doctor says many tests are required to determine who can donate a kidney to me. Let s talk with a doctor about how risky this might be. I want to make sure you have the right support. What do I say if I want to talk with my doctor about living kidney transplants? I ve been learning more about living kidney transplants. I m wondering if this is an option for me. What do we need to do to see if this might be an option for me? After Your Talk Just getting these thoughts out is a good start. The people you talk with may react in many different ways. Some may not say anything, may not know how they feel and may need more time. Others may have a lot to say or may have strong opinions. All of these are normal ways people can react. You and those close to you may have a hard time talking about this. Ask your doctor how to contact a social worker or transplant coordinator who can help. This may be the time that the talking stops for now. This is something that may take a long time to figure out. People don t have all the answers right away. 11

14 3 If You Know Someone Who May Need a Kidney This part covers issues you may want to learn about most if you know someone who may need a kidney. It has four sections: Questions and Answers about Living Kidney Donation How to Help Someone Talk about Kidney Disease Sample Conversations of What to Talk About What to Expect After a Talk Questions and Answers about Living Kidney Donation This section has answers to questions you might have if you know someone who may need a kidney. If I were to donate, what would I go through? You would go through these steps: Informed consent Blood tests X-rays Heart tests Tests for kidney function Mental health assessment Meet with kidney doctor (nephrologist) Meet with transplant surgeon Meet with anesthesiologist (doctor who prevents patient from feeling pain during surgery) 12

15 Surgery Follow up with transplant team Recovery time at hospital Recovery time at home Is donating a kidney major surgery? Yes. Donating a kidney is major, voluntary surgery. A person thinking about donating should talk to a doctor to find out about risks. Would I have to take time off from work to donate? Yes. Donors go through many tests. These tests may take a long time. You would need time off from work before and after surgery. How long would it take for me to recover after a kidney donation? Recovery involves a few days in the hospital, some pain after surgery and several weeks for you to get back to normal. It is important to talk about recovery time and its impact on daily life with your doctor. If I donated, what support would there be for me? Medical support for donors after donation varies by transplant center. Family and friends also provide very important support. Here are some ways they can help: Driving to and from appointments Cooking Child care Help around the house during recovery Talking with donor s family Assisting in finding support groups 13

16 If I donated, does health insurance pay for my medical costs? There are two insurance providers to think about: your insurance and the recipient s insurance. The recipient s medical insurance will cover the majority of medical costs related to donation. These include hospitalization, medicine for pain, follow-up visits, etc. It is important to discuss all insurance issues with a social worker or the transplant center. Does health insurance pay for my travel and other non-medical costs related to donation? Medicare only covers medical expenses associated with donation. It does not cover travel and other nonmedical costs. You will need other means to pay for travel and other costs. In some cases if you donate, your private insurance may help pay for travel expenses. The recipient should also check with their private insurance company to see what other costs they might cover such as housing and child care. Who can I talk with about finances and living kidney donation? Talking to a social worker, a financial advisor or your insurance provider will help you in this process. What can I expect after donation? After donation, you would experience some pain. This can be controlled with medicine in most cases. After the surgery, you may spend a few days in the hospital followed by recovery at home. Medical follow-ups will occur as needed. 14

17 If I donated a kidney, would I be able to go back to my normal activities afterwards? Usually, you should be able to go back to normal activities after a few weeks. Talking about Kidney Disease This section explains why talking about kidney disease is important. Talking about this might be hard for some. To make these talks easier, here are tips for what to say and how to talk about kidney disease and treatment. Why is talking about their kidney disease important? If you talk about treatment, it can make talking to the doctor easier. Talking can help you know what to expect. It gives you time to ask questions. You can all talk about concerns. You can learn how to help one another. A person with kidney disease may not look sick. Talking will be helpful to learn what is happening inside. How do I talk about kidney disease and treatment? Talk when it is a good time for everyone. Make notes about what you d like to say ahead of time. You might need to wait until everyone is ready to talk. Be patient. These decisions take a long time to make. 15

18 Talking with those close to you might be hard. Ask your kidney doctor how to contact a social worker who can help. Know that kidney donation will not improve/fix a relationship. Know that giving a kidney does not mean that you control that person s life. What do I talk about? Emotions How do you feel about talking about living kidney donation? How would you feel about your loved one receiving a kidney? How would you feel about being a donor? How would you feel about having your kidney in someone else s body? How would you feel about surgery for yourself? For someone close to you? If you were to donate, would you be worried about the care at the hospital? How would a transplant for someone close to you fit in with your values and beliefs? If you or another family member donated a kidney, how would this affect your family? If this person received a kidney, how would it affect your daily life? If you were to donate, would you want the recipient to treat you differently? Would you feel pressured to donate? If a donated kidney fails, how might this affect your relationship? 16

19 Support (Emotional, Physical, Spiritual, Care-taking) What kind of support would someone who may need a kidney want? What kind of support would you be able to give? If you were to donate, what kind of support would you need? What kind of support would someone close to the donor or the recipient need? Would you have the support you need if someone close to you donates or receives a kidney? Do you know people who have thought about being a kidney donor? About having a transplant? Would you be willling to go with this person to talk with the doctors, nurses and social workers? Planning What can your loved one do now to take care of him/herself? What else would you like to know about donation? If you were to donate, would you be able to take enough time off from work? If you were to donate, what do you think about needing weeks to recover? If you were to donate, would you have enough money to pay for any travel to the transplant center? How might transplantation or donation affect money and finances? Daily routines? Do you have health insurance? What would it pay for? What could someone who wants to donate do to prepare? 17

20 Do you want someone to help you make decisions about donation and transplantation? Who could help you make decisions about donation and transplantation? Possible Conversations These examples can give you ideas of things you may want to talk about with a family member or a friend who has kidney disease. How can I get someone to talk about their kidney disease? I d like to hear more about how your kidneys are doing. How are your appointments with Dr. going? What can I say to show support? What can I do to help you through this? Can I find anything out for you? I d like to go with you when you see the doctors so I can learn more. How do I tell someone I want to donate a kidney to them? I ve thought a lot about this. I d like to donate a kidney to you. I ve talked to my family and to the doctor. How do you feel about this? What do I say if I need more time before deciding about donating a kidney? This is a big decision. I need more time. 18

21 I need to talk with my family before I decide. I d like to talk to the doctor and nurses more before I decide. I want to be absolutely sure before I tell you. How do I help someone reconsider a transplant? Transplant might be a good option for you. A transplant might not be good for you. Can we talk about it together? Can we talk to the doctor together? I m here if you ever want to talk? How do I talk about health insurance and finance? Do you have health insurance? Does our health insurance cover a living kidney transplant? How much and what parts? Do we have insurance after Medicare runs out? What are our other options? Can we afford this? I can call to find out what health insurance does and does not pay for. After Your Talk Just getting these thoughts out is a good start. People may react in many different ways. Some may not say anything and may need more time. Others may have a lot to say. All of these are normal ways people can react. You and those close to you may have a hard time talking about this. Ask your doctor how to contact a social worker or transplant coordinator who can help. This may be the time that the talking stops for now. This is something that will take time to figure out. People don t have all the answers right away. 19

22 4 Concerns about Relationships and Living Kidney Donation The decision to receive or donate a kidney is permanent and life altering. Take some time in making your decision. You may feel uncomfortable about receiving or donating a kidney. Here are some things to think about as you talk with your friends and family about your feelings. How do I say I no longer want to donate? It is important to say you will donate only if you plan on doing so. Sometimes, though, people need to change their minds. It is important that you tell the transplant team as soon as you have changed your mind. You can talk with the transplant team about how to best comunicate this decision to the person who needs the kidney. How do I maintain a relationship with someone who no longer wants to donate? Make sure that you and the donor are able to talk openly with one another. Be clear from the start that if they change their mind, to let you know right away. Also, stress that keeping the relationship is important, no matter what their decision about donating is. How do I keep a relationship with someone who won t accept my offer to donate a kidney? You may feel upset or rejected if someone doesn t accept this offer. This is understandable. It is important to remember that your friend or family member needs to make decisions that work best for 20

23 them. Try to be understanding with your loved one, consider their perspective and talk as openly as you can. How do I tell a person I don t want a kidney from him/her? Saying no, thank you may not be enough. A donor may want specific reasons why you are not accepting their offer. Take some time to consider how best to share your concerns with the person who has offered to give you a kidney. What if a kidney fails? Even with all the tests and preparation, living kidney transplants sometimes fail. This can be emotional for the donor and recipient. As a donor, you may feel guilty that the kidney didn t work. You may also feel angry about having gone through so much effort only to have the kidney fail. As a recipient, you might be upset because the treatment isn t working. You might also be angry that your body is rejecting the kidney, or angry at the kidney because it won t function. There is a chance you might also feel guilty for putting the donor through so much. These emotions can put strain on a relationship. Talking about what to do and how you might feel if a living kidney transplant fails is an important step in deciding about what is right for you. 21

24 5 Conclusions and Resources There is no right or wrong decision for living kidney donation. It may take time to arrive at the choice that fits you best. This booklet likely has not answered all your questions maybe it has even raised more questions. It is important to talk with your doctors about all the questions you have. Much more information is available about living kidney donation. You can get more information from your doctor. You can also visit your local library or look online. Here are just a few of the organizations you can contact for additional information: National Kidney Foundation of Maryland 1107 Kenilworth Drive Suite 202 Baltimore, MD Phone: (Maryland only) Web: The National Kidney Foundation of Maryland is dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by these diseases, and increasing the availability of all organs for transplantation. 22

25 The Living Legacy Foundation 1730 Twin Springs Road, Suite 200 Baltimore, MD Phone: HERO Web: The Living Legacy Foundation facilitates the donation and recovery of human organs and tissues for transplantation and research. We provide advocacy, family support and comprehensive public and professional education, and are committed to organizational excellence to enhance the organ and tissue donation and distribution processes. United Network for Organ Sharing (UNOS) 700 North 4th Street Richmond, VA Phone: Headquarters: Patient/Public Info: Web: UNOS brings together medicine, science, public policy and technology to facilitate every organ transplant performed in the United States. Every day, UNOS assists transplant doctors, patients, andmembers of the public by helping to ensure that organs are procured and distributed in a fair and timely manner. Medicare Centers for Medicare & Medicaid Services 7500 Security Boulevard Baltimore, MD Phone: MEDICARE ( ) Web: 23

26 6 Glossary Anesthesiology this is the department in the hospital that gives medicine to block pain during surgery. An anesthesiologist is the doctor who sees a person before surgery to learn a patient s history and collect blood work to know what type of anesthesia will work for that person. Dialysis a treatment in which a machine removes harmful wastes from your blood. Donor a person who gives one of their organs to someone who needs one. This individual can be living or deceased. End Stage Renal Disease a point in kidney disease where your kidneys fail to work. Hepatitis This is a liver disease that comes in three types: A, B or C. If a person has hepatitis, he or she can not donate a kidney. Kidney failure when your kidneys are no longer able to remove harmful wastes from your blood. Kidney transplant when someone else s kidney is placed in you through surgery. Living kidney donation when a friend or relative donates one of his or her kidneys to you. Medicare government health insurance for people who have certain disabilities, who have end stage renal disease or are 65 years and older. 24

27 Nephrologist a doctor who specializes in kidney problems. Recipient a person who receives a kidney from a donor. Rejection your body will not allow the new kidney to work. There is a range of rejection some people can have minor initial problems. Others can have more severe issues that cause the transplant to fail. The term rejection alone does not mean a transplant will not work. Transplant coordinator Clinical transplant coordinators are the patient s link to the transplant hospital. Many have backgrounds in nursing, social work or other health-related fields. They take care of many things: educating patients and families about various treatment options and answering any questions they may have, evaluating living donors and recipients and coordinating medical visits after transplantation and donation. Transplant team a group of doctors, nurses and social workers who will help you through the entire transplant process. 25

28 7 Contacts and Notes Health care provider: Phone: Health care provider: Phone: Health care provider: Phone: Health care provider: Phone: Insurance provider: Contact name: Phone: Policy number: 26

29 Notes: 27

30 Notes: 28

31 Notes: 29

32 A collaboration of the Johns Hopkins University and the National Kidney Foundation of Maryland

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