Transplant Handbook to Finding Your Living Kidney Donor

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1 Download a QR- Code reader on your smartphone and scan the code. Transplant Handbook to Finding Your Living Kidney Donor kidney Phone: Fax: Toll Free: Our Mission: To extend the healing ministry of Jesus Christ. kidney CHRISTUS Santa Rosa Hospital Medical Center 2829 Babcock Road Tower I Suite 300 San Antonio, Texas 78229P Your health care home for life.

2 Kidney transplants are well established miracles. Welcome to the CHRISTUS Transplant Paired With Hope living donor program. Our team works with individuals that have decided on, or are considering having, a kidney transplant from a living donor. Paired With Hope is dedicated to restoring your productive, independent life while making the well-being of the living donor a priority. Use this handbook as a guide during your donor quest. CTI Transplant Surgeon, Dr. Greg Abrahamian, discusses with this donor the details of removing her kidney. Now that you have decided to get a transplant, time matters. Studies indicate the less time a patient is on dialysis, the higher the survival rate of the transplanted kidney. 1

3 People with kidney failure have two options: stay on dialysis or get a transplant. Both dialysis and transplant can save your life, but only a transplant will free you from the dialysis machine and allow you to return to a normal life. For patients who are medically qualified to have transplant surgery, it is the preferred treatment because it extends your lifespan and restores your quality of life. A kidney transplant can come from a living or nonliving person. A living donor can usually complete all testing in a short period of time and surgery can often be scheduled in a matter of weeks to months. In comparison, the wait time for a kidney from a nonliving person can be up to six years. Benefits of living donor transplants No dialysis. Plan your surgery time. Higher success rate. Longer kidney lifespan. The Paired With Hope program knows that your choice to find a living donor is a huge responsibility, and our staff is available to coach and advise you every step of the way. We know you will have many emotions and feelings about making such a profound request. You may think if a family member or friend wanted to give you one of their kidneys, they would have already volunteered. Additionally, you may not want to ask them for fear of overburdening them. We can tell you with confidence, the opposite is often true. Educating everyone, especially family and friends, can make the difference in a donor stepping forward! Finding a living donor is often easier than you think. Spouses, co-workers, friends even strangers have given a kidney. In the past 20 years, donations by non-blood relatives have become increasingly common.

4 To find your living donor, Paired With Hope recommends adopting these four traits: 1. Be Prepared 2. Be Courageous 3. Be Confident 4. Be Persistent It is a common misconception that only close relatives can be a transplant match. Any healthy person can be considered for kidney donation. The advances in kidney transplant have made the matching process of donor and recipient much easier, providing you with greater opportunities to find a donor from someone who is related and unrelated.

5 Be Prepared Telling your story is one of the most proven approaches to successfully finding a person to donate a kidney to you. So prepare your story in advance. Most importantly, your story should be sincere. Some basic recommendations to include are: Facts about your kidney disease. Your two options at this stage: dialysis or transplant. How each option affects your quality of life. Why you have chosen to find a living donor rather than waiting up to five to six years for a non-living organ donor. You may find it helpful to write out your story and practice what you are going to say. Create a list of everyone you can possibly think of to tell. Start with immediate and extended family and build from there. Approach friends, co-workers, and anyone else you know. You may even tell your story to people you don t know. Strangers have become donors to many patients. Request each person that you asked to ask someone else. Remember, the more people you tell, the more you increase your chances of finding the very best match. Don t assume someone is too old or not healthy enough to give a kidney. The transplant team will carefully review the prospective donor profile and let you know the outcome. If your family members are not able to donate, be prepared to explain why.

6 Be Courageous Speak about your battle with kidney disease; speak from your heart and speak often. Explain that you have been approved by the to have transplant surgery and it is your best option for a longer, healthier, happier, and more productive life. Speak about kidney disease and the advances in transplantation and why a kidney from a living donor is better than a kidney from a non-living person. Courageous points to remember Speak to everyone as if they are a possible donor. If you feel comfortable, ask individuals directly if they would go through a few blood tests to see if they are a match with you. Tell potential donors that in almost all cases the medical costs of giving you a kidney will be paid for by your provider. Reassure them that the health and well-being of the living donor are a top priority to your transplant team. Be prepared to provide the contact information for the Paired with Hope Transplant Coordinator. Remember that a no response is okay. If they say no, ask if they will share your story and advocate for you. This is important to your success, as it may require several potential donors to be screened before you find a match. Remember to give the person time to absorb your situation and to begin seeing themselves in the role of a living donor. Let them know they are under no obligation to help, that it is a very personal decision and you respect that. Remember a loved one or close friend s personality when setting a time and place for this serious discussion. Remember to: Share your story frequently. Educate yourself and others about kidney transplant and living kidney donation. Get the word out to as many people as possible through s, blogging, church, Facebook, the media, social and professional groups, and schools. Enlist friends to help you recruit and find potential donors. Keep everyone updated on how you are doing. In doing mass appeals and working strangers, the Paired With Hope team advise as needed. Ask individuals, whether they show interest in donating to you or not, to carry the message of living donation on to their family and friends. with can

7 Common misinformation about donating a kidney It is against my religion. All major religions in the world support organ donation as a charitable act of love and giving. I am too young or too old. A donor must be 18 years of age or older. Donors are usually between the ages of 18 and 65. Does having only one kidney make me a weaker person? Kidney donation does not change the length of one s life or put them at any greater risk for developing kidney or other problems. In fact, people who donate a kidney outlive the average person. Of course, approved donors are healthy individuals, but the act of giving the gift of life and the happiness that comes with it has a positive impact on a healthier lifestyle. The bottom line is people live well with just one kidney; some of us are born with only one kidney and never know it. My insurance won t pay for such an expensive surgery. Medicare and all major insurance providers choose kidney transplant as the preferred treatment for kidney failure. Transplant surgery is NOT experimental. Donating an organ is not a new procedure. The first donor gave one of his kidneys in Since then, many thousands of living people have donated their kidneys. Donor surgery will keep me in the hospital too long. Kidney donor surgery is very safe. Most surgeries are minimally invasive and donors, on average, are able to return home from the hospital in one to three days. A donor can continue working in all types of jobs, even the military. Being a donor will hurt my chances of becoming pregnant. Being a donor does not change a woman s ability to have a child. I don t have the money or insurance coverage to be a donor. There is generally no cost to the donor. In most cases the recipient s insurance pays for the donor expenses. The Paired With Hope program will speak with your donor or interested donor about this or any aspect of donation.

8 Be Confident Someone cannot donate if they don t know your need. This step is to help your donor find you. The more you do this, the greater your comfort level becomes and the less shy you will be about asking people to consider donating. Tell as many people as possible! Someone cannot donate if they don t know your need. The more you share your story, the greater your comfort level becomes. As this happens, you will also become more comfortable asking directly for help. You will also realize that asking for help is not a sign of weakness. You did not choose your medical problem, but you are choosing to be proactive about improving it. In your conversations, you will find that people have concern, interest, and questions. You will also learn that many people have wrong information and this leads to fears. If they are ever going to become a donor or advocate for you, you will need to give them the correct information. Be Persistent You could have several related and non-related individuals who wish to give you one of their kidneys, but until the surgery is complete they are only potential donors. Even committed donors may not work out due to a variety of medical or personal reasons. Continue to spread the word about your need for a kidney donation while your potential donors are being tested for matching. No match? No problem. Don t despair if all your potential donors are not a match for you. They could still be your solution to receive a living donation through a paired donor exchange. In this scenario, your potential donor may be a match for another patient in need of a kidney transplant, and that patient has a live potential donor that is a match for you. Essentially, you swap donors so both patients receive a matching kidney. Paired With Hope will facilitate the exchange so you and the other patient receive the donated kidneys in the same time frame.

9 These paired donor exchanges are highly successful and growing in popularity. Some exchanges have involved 12 and more patients simultaneously receiving kidneys from living donors. The Paired With Hope program will coordinate every step for the paired exchange with you and your potential living donor. Our exchange program will increase your chances to find a matching live donor. Remember why a living donor is important Reduced risk of rejection. The kidney typically begins to function immediately while a kidney from a non-living person may take days or weeks to function normally. There is no wait list. In order to receive a kidney from a non-living person, the average wait list can be up to six years. Surgery can often be scheduled in a matter of weeks. Never stop looking for donors until the transplant surgery is complete.

10 Kidney transplants are one of the most common transplant operations in the United States. You: The donated kidney is put into the lower part of your right abdomen, in front of the hip bone. The surgeon makes an eight inch incision to put the new kidney into place. The surgery lasts three hours and you will be in the hospital between three and five days. Your Donor: Ninety percent of all donors have a laparoscopic surgery (a small incision of minimal entry between three and four inches) to remove the left kidney below the belly button. The surgery lasts between two and three hours and the donor will be in the between one and three days.

11 Frequently Asked Questions What is my surgery like? An incision is made in the lower abdomen. The surgical team will then connect the new kidney s artery and vein to one of your arteries and veins. The surgeon will also connect the new kidney s ureter (the tube that carries urine to the bladder) to your bladder. If you still have one or both of your own kidneys, they will not be removed unless they are causing you problems. You and your donor will be operated on at the same time, usually in side-by-side rooms. As the transplant surgeon is removing the kidney from the donor; a surgeon is preparing you to receive your donor s kidney. The new kidney will take over the work of your two failed kidneys. Often, the new kidney will start making urine as soon as your blood starts flowing through it, but sometimes it starts working in several days. Will I Need Dialysis? You will not need dialysis once your new kidney starts working. What problems will I have after surgery? There is no way to predict for sure which patients will have problems. Your transplant team will do their best to reduce your chance of having complications and to treat them right away if you have any. What is Rejection? Rejection is one of the most important concerns for kidney transplant recipients. Acute rejection most commonly occurs within the first three months after transplantation, but it can also occur many months or years after transplantation. Your body may reject your new kidney due to your body s immune system that protects you from infection by recognizing certain foreign bodies, like bacteria and viruses, and destroying them. Unfortunately, the immune system sees your new kidney as a foreign substance also. In spite of all precautions, rejection can occur. Most rejections can be successfully controlled with changes in immunosuppressive medications and usually does not lead to the loss of the kidney. What are Immunosuppressive Medications? These medications suppress, hold back, your immune system. You will be required to take a combination of drugs to suppress your immune system to prevent rejection of your new kidney. To prevent rejection, you must take anti-rejection medications, as prescribed, for the rest of your kidney s life. Following instructions carefully and keeping your transplant team informed of any problems will help you return quickly to a normal, active life. How am I after surgery? You will probably feel sore and groggy when you wake up. However, many transplant recipients report feeling much better immediately after surgery. Even if you wake up feeling great, you ll need to stay in the hospital for about a week to recover from surgery. You will find that your diet after the transplant will allow you to drink more fluids and eat many of the fruits and vegetables you could not eat while on dialysis. How much is this going to cost me and my donor? Generally speaking, the cost of all you and your donor s testing and surgery is covered by your insurance provider. The financial coordinator will review your benefits and discuss your options with you and your donors.

12 Your Story Donor Leads Outreach Clinics Edinburg 4705 S. Sugar Rd., Suite B Edinburg, Texas Laredo 4151 Jaime Zapata Memorial Hwy. Suite 212 Laredo, Texas El Paso 199 N. Oregon St. Suite 300 El Paso, Texas Corpus Christi 1315 Santa Fe, Suite 102 Corpus Christi, Texas References 1.) Effect of Waiting Time on Renal Transplant Outcome, Kidney International. 58(3): , September ) Fehrman-Ekholm, Ingela 2,3; Transplantation, 64(7): , October 15, 1997.