Johns Hopkins Comprehensive TransplanT CenTer
Johns Hopkins Comprehensive Transplant CenterLIVIN G K i d n e y D o n o r P ro g r a mQuiet heroes
c o n t e n t s3 Advantages to Living-Donor Kidney Transplants3 Choosing to be a Living Donor4 Members of the Donor Evaluation Team5 Donor Testing and Surgery5 Initial Call about Living Donation5 Blood and Tissue Type Matching5 Screening Tests6 One-Day Donor Evaluation6 Scheduling the Donor Surgery6 Donation/Transplant8 Initial Recovery in the Hospital8 Recovery At Home9 Returning to Work9 Follow-up9 Your Future After Donation11 The Incompatible Kidney Transplant Program (InKTP)11 Blood-Type Incompatible Transplant Program11 Paired Kidney Exchange Program12 Highly Sensitized Patient Protocol12 Altruistic Nondirected Donation12 Contact informationDonor: a givera contributora supportera benefactora selfless humanitariana hero
J o h n s H o p k i n s C o m p r e h e n s i v e T r a n s p l a n t C e n t e r L i v IN G K i d n e y D o n o r P ro g r a mQuiet heroesAt The Johns Hopkins Hospital, we’re privilegedto see heroes everyday. Quiet heroes. Thepeople who save others—related, unrelated,even total strangers—with a living-organkidney donation.Living donors have helped meet the desperate needs of many transplantpatients who have endured long waits for deceased kidney donors.Unfortunately, the number of people waiting for a transplant still farexceeds the number of donors. The transplant team at the Johns HopkinsHospital Comprehensive Transplant Center is constantly developing newideas to help transform this deficit. We are persistently working towardadvancements in living donation as well as better educating the public onliving and deceased organ donation.Since 1970, The Johns Hopkins Hospital has performed more than onethousand living-donor kidney transplants. In 1995, specialists at JohnsHopkins developed the living-donor surgical procedure called thelaparoscopic nephrectomy. Unlike the older method that removed thekidney through a large incision, the laparoscopic nephrectomy uses onlyfour small incisions. This procedure has allowed for shorter hospital staysfor living donors and decreased the risk of postoperative infection. Todaythis technique has become the standard of care not only at Hopkins but athospitals worldwide.Our innovation does not stop there. Recognizing the problem ofincompatible blood-type donor and recipient matches and sensitizedrecipients to donor organs, the Johns Hopkins program established theIncompatible Kidney Transplant Program (InKTP). Now, more than ever,almost anyone who is medically eligible can be a living kidney donor. Moreinformation about the InKTP program can be found later in this booklet.1
“I was happy to donatea kidney so my wifecould get the one sheneeded, and I’d readilydo it again if I could.I encourage everyoneto consider organdonation, particularlypeople in the AfricanAmerican communitywhere the needis so great.”—Joseph Davidson,Journalist
J o h n s H o p k i n s C o m p r e h e n s i v e T r a n s p l a n t C e n t e r LIVIN G K i d n e y D o n o r P ro g r a mAdvantages to Living-DonorKidney TransplantsThere are many advantages to transplant recipientsreceiving a living-donor kidney transplant. Foremost,is the ability to receive a transplant sooner than theywould while awaiting a deceased donor organ.When people have kidney failure, they don’t havemany options. They can rely on a dialysis machineto remove waste products from their blood, andthey can have their name placed on the transplantwaiting list that is maintained by the UnitedNetwork of Organ Sharing (UNOS) for a deceaseddonor kidney transplant.Dialysis can result in long-term health issues. It istime-consuming and limits a person’s family andwork life. Consequently, kidney transplantation,with its well-documented, high rate of success, isthe preferred option for most patients. Long-termsurvival and quality of life is markedly improvedamong patients who receive a donor kidneycompared with patients who remain on dialysis.Receiving a living donor transplant may also allow apatient to avoid dialysis altogether if the transplantis done when the kidney failure is first found.Thanks to the many options available to peopleconsidering kidney donation, the number of peopleinterested in becoming a living kidney donor has beenincreasing. That’s very good news.Unlike a deceased donor transplant, the living-donortransplant can be planned ahead of time when therecipient is in better health. Most important of all, thelong-term survival rates of living-donor transplants areoften higher.There is one more, very important advantage to livingdonation—using a living-donor organ frees up aprecious deceased donor kidney for someone else whodoesn’t have a living donor.At the Johns Hopkins Hospital, we are prepared tohelp anyone understand how living donation works.We recognize that donating a kidney is a decisionthat should not be lightly undertaken. We ensure thateach donor has a specialized team of doctors, nurses,a special donor advocate, a psychologist and a socialworker who support the donor’s needs. Their sole focusis that of the donor’s health and safety.There are heroes out there. Quiet ones willing toperform a selfless act of courage, to save a life. At JohnsHopkins, we are dedicated to fulfilling the wish ofdonors to give the gift of life.Choosing to be a Living DonorWho can donate?Living donors can be siblings, parents, relatives,friends, in-laws, neighbors, co-workers, religiousservice members, even altruistic strangers. Livingkidney donors give another person a second chanceat life.A donor must be medically and psychologicallyhealthy, willing to donate and at least 18 years of age.There are certain medical problems that would makeyou ineligible, such as a cancer, diabetes, kidney orheart disease.3
J o h n s H o p k i n s C o m p r e h e n s i v e T r a n s p l a n t C e n t e r LIVIN G K i d n e y D o n o r P ro g r a mWhat are some concerns donors have beforedeciding to donate a kidney?Many donors are so comfortable with their decision,they have no concerns, but almost everyone hasquestions about the donation process. How muchdiscomfort is associated with the surgery? How longwill it take to get better? How much time will it takeaway from work? Will the donor incur any cost?Some donors express fear. Some even feel guilt aboutbeing afraid. Whatever concerns you have, thetransplant team is available to help you get the answersyou need. Your team can even connect you to a “donormentor”—someone who has done what you are aboutto do and who can share their personal experiencewith you. The team encourages you to learn all youcan about donation. Your decision must be the rightdecision for you.How safe is the donor surgery?While the laparoscopic technique has made theoperation easier for the donor, it is still majorsurgery. As with any operation, you will have painand discomfort. There is also a risk of bleeding andinfection. Although extremely rare, donor deaths haveoccurred post-donation for a variety of factors. Factorshave included infection, blood clots and bleeding.More common, yet still infrequent, other risks includefever, pneumonia, nausea and urinary tract infections.The risks of living-donor surgery will be discussedthroughout your donor evaluation.Are there any benefits toliving donation for the donor?There is no medical benefit to a donation. A possiblemedical benefit of the evaluation is finding out abouta health problem you were not aware of and seekingearly treatment. However, giving someone else asecond chance at life can be a rewarding experience.4Members of theDonor Evaluation TeamAn Evaluation Transplant Nurse Coordinator isassigned to every donor. This nurse will guide youthrough the evaluation process. There are many teststo complete, which he or she will help arrange andcoordinate. The nurse coordinator also works closelywith transplant surgeons and nephrologists to provideconsistent quality care and education as a donorprogresses though the evaluation process.The Johns Hopkins Comprehensive Transplant Centeralso has an Independent Living Donor Advocate socialworker. This role is to help ensure a safe evaluation andcare of living donors. The donor advocate provides anadditional resource for the donor and the transplantteam members. The donor advocate promotes thedonor’s best interest and assists the donor in obtaininginformation and understanding the donation process.You will be able to discuss any questions or concernsabout living donation that you may have.After passing the initial screening, you will be seenin the kidney donor evaluation clinic. There you willmeet a transplant surgeon and nephrologist (medicalkidney doctor). The transplant surgeon will explainthe donor operation and answer any questions youmay have regarding the operation. The nephrologistmedically evaluates potential donors and will counseleach donor individually regarding the risk fordonating a kidney. Together, this team of doctorsworks to make sure it is safe for you to proceed withkidney donation.The psychologist and social worker will also providepsychological and psychosocial evaluations to ensurethat all potential living donors are suitable from apsychosocial perspective. The psychologist and donoradvocate social worker help you and your supportnetwork gather information, weigh options and makean informed choice.
“ Friends don’t let friends stayon dialysis. I didn’t, and I’vebeen a proud kidney donorsince July 20, 2010.”—MistI Myers,Professor and personal TrainerDifferent from other transplanting centers, ourteam has a dedicated kidney donor follow-up nursecoordinator. This nurse will become your coordinatoronce you are discharged from the hospital and whospecializes in post-donation care.Donor Testing and SurgeryOne golden rule exists with living donation: Nothingis more important than your health.Living donation is a process and is done at a pace thatis most comfortable to the donor. During all steps ofthe process, living donors have a nurse coordinatorwho will be their guide. The living donation process isdivided into five phases: Initial Call about Living DonationBlood and Tissue-Type MatchingScreening TestsDonor EvaluationScheduling the Donor SurgeryInitial Call about Living DonationIf you are considering living donation, we areprepared to answer any question you may have.We want to make sure that you have all of theinformation you need as you think about whetherdonation is right for you. One of the first steps is foryou to call the Living Donor Office at 410-614-9345.At this point, you may request more information orget the information you need to schedule the bloodtest to see if you match the recipient.Blood and Tissue-Type MatchingYou will have blood drawn to see if you and therecipient have compatible blood types and to checkthe degree of your genetic matching in what is called aHuman Leucocyte Antigens (HLA) test. If your bloodtype is not compatible with the recipient, it is stillpossible for you to donate your kidney. Informationabout Blood Type Incompatible (ABOI) Transplants iscovered later in this booklet.We use the HLA test to predict the likelihood of yourkidney being accepted by the recipient. We mix, orcrossmatch, both of your blood cells. If the recipient’scells “kill” your donor cells, the crossmatch is positive.If not, it’s negative. A negative crossmatch means it’sunlikely that your kidney will be rejected. A positivecrossmatch means that your recipient will most likelyhave problems receiving your donated kidney and, inmost cases, donation will not be possible.Screening TestsDuring screening, we will ask you to have bloodwork and urine tests done. You’ll collect a 24-hoururine specimen that will show how well your kidneysare working. Your blood will be checked to see whatviruses you may have been exposed to in the past.You will be asked to provide blood pressure readings.Women must also provide the results of a current papsmear and mammogram. All donors 50 years and older5
J o h n s H o p k i n s C o m p r e h e n s i v e T r a n s p l a n t C e n t e r LIVIN G K i d n e y D o n o r P ro g r a mare required to have a colonoscopy. More tests may beadded based on the results of this initial screening. Ifyou don’t live close to Johns Hopkins Hospital, thesetests can be done in your local area.One-Day Donor EvaluationIf problems are not discovered during screening,a One-Day Donor Evaluation is set up at JohnsHopkins Hospital. You’ll meet with your living donorteam: your Nephrologist, Surgeon, Coordinator,Psychologist and the Living Donor Social Worker/Donor Advocate. We encourage you to bring a familymember to meet with your living-donor team too—this should be your significant other or the personwho will most likely be helping you during yoursurgical recovery.During the evaluation, we will perform a chest X-ray,an EKG and a 3-D CT scan of your kidneys. Thisevaluation takes the entire day, so if your travelingdistance is more than 3 hours, we suggest you cometo Baltimore the night before. Ask your transplantcoordinator for a housing and hotel list.Sometimes additional testing is requested at yourdonor evaluation appointment. This informationwill be communicated to you and assistance will beprovided in scheduling. Once all of the testing iscompleted and reviewed, your case will be presentedto our Transplant Committee. It is the committee’sresponsibility to review a donor’s evaluation anddetermine whether that person is a candidate who isable to donate a kidney.Scheduling the Donor SurgeryThe Transplant Committee will review the results ofyour tests. If your evaluation shows you would be agood donor and you wish to proceed, a surgical datewill be set in preparation for the transplant.In most circumstances, the transplant is scheduledfour to six weeks in advance. This allows you toarrange time away from work, child care, schoolschedules and other daily responsibilities.Donors are usually in the hospital for two days aftertheir surgery. Donors should plan to stay in town forone week after discharge.Two weeks before your surgery, a visit is scheduledfor both the donor and recipient at our PreoperativeEvaluation Center. A final crossmatch will be doneone week prior to surgery to make sure the recipienthas not developed antibodies that could affect theacceptance of the transplant.Donation/TransplantOn the day of surgery, you and the recipient will beasked to come to the preoperative surgical area toprepare for surgery. The surgical team will take yourblood pressure, heart rate and temperature. Your pastmedical history will be reviewed and an IV started.You’ll meet your surgeon and the anesthesiologistwho will care for you during your operation. You’llhave plenty of time to ask any last-minute questions.Finally, you’ll be asked to review and sign the surgicalconsent form.Your surgery is called a Donor Nephrectomy and takesapproximately four hours.6
“My Mom gave life tome; I’m just gratefulthat I was given theopportunity to do thesame for her.In the end, the mostgratifying aspect ofbeing a donor has beento witness the way mydad has so lovingly andpainstakingly cared forher since the transplantoperation.”—carmen blake,nurse
“I love my daughter and am soproud of how she has borneup under her kidney disease allthese years. All this cost me wasa couple weeks of time, sucha small price to pay for her tohave a better life.”—Dr. KENNETH Park,physicianYou will be under general anesthesia and asleep duringthe entire surgery. Once you are asleep, a tube will beplaced into your mouth to help you breathe, and a urinarycatheter will be placed into your bladder to collect urine.Most often, your left kidney is removed. Your surgeonmakes three small incisions about one-half inch long inyour abdominal area (see diagram below). Through oneincision, your abdomen is puffed up to make it easier to seethe kidney. Through the other incision, a tiny camera andsmall surgical tools are placed. The kidney will be removedthrough the fourth incision at the bikini line.While all this is happening, the recipientis being prepared in another operatingroom. When the recipient’s surgeonreports that everything is ready, yourkidney will be removed.Initial Recovery in the HospitalYou will awake in the recovery room feeling very sleepy.You might also feel a little nauseated. That’s normal anddue to the anesthesia. Once you are stable, you will betaken to your hospital room.Your breathing tube will be removed while you are still inthe operating room, but the urinary catheter and IV willremain in place for one day after surgery. You can expect tofeel puffy from all the fluid you were given during surgery.You will have gained a little weight, because each liter offluid is equal to 2.2 pounds, but this will drop 1-2 weeksafter surgery.Pain medication is available through an IV or an injection.On the second day after surgery, or once you can toleratefood, you will be given pills to control your pain. You mayalso have some pain in your shoulders from the gas used toinflate your abdomen.Soon after surgery, you’ll receive a regular diet. You’ll alsobe encouraged to get out of bed. Walking leads to fasterrecovery and helps prevent infections and blood clots inyour legs. By the second postoperative day, if there are noproblems, you will be discharged from the hospital.Three small incisionseach less than ½ inch2–3-inch incision8Recovery At HomeYou will experience some abdominal pain. This painshould be easily relieved with either a prescribedmedication or over-the-counter pain relievers. In fact, mostdonors report they no longer need any medication twoweeks or even sooner after surgery.
J o h n s H o p k i n s C o m p r e h e n s i v e T r a n s p l a n t C e n t e r LIVIN G K i d n e y D o n o r P ro g r a mWe recommend that you don’t drive for two weeksand don’t lift anything heavier than 10 pounds for sixweeks. You are encouraged to walk several times a day,both for exercise and to hasten recovery. If you havechild care responsibilities, you’ll need some assistanceduring the first week.You can also expect to feel a variety of emotionsfrom elation to a slight “let down.” This is completelynormal. You have just experienced an intenseemotional and physical event. Be patient with yourselfand your progress. Recovery and healing take time.Returning to WorkThe timing of the donor’s return to work is dependentupon the type of work. The return for an office or deskworker may be as soon as 2 to 3 weeks, while a morestrenuous worker may need as long as 6 to 8 weeks.Follow-upWe ask that our living donors come to a medicalappointment after their surgery so we can make surethey are recovering well. Then, we ask them to sendmedical information to us at regular intervals so thatour transplant experts may follow their health. Thisbenefits living donors by providing an enhanced levelof safety and attention from living-donor specialists,in addition to the ongoing care they receive from theircommunity-based primary care physician.Your Future After DonationMake no mistake, donating a kidney is no small step.You have to wonder how this is going to affect yourhealth, your future, your life. Here are the answers tothe questions we hear the most.Will I be able to live a normal, healthy lifeafter donating a kidney?Absolutely. Years of research and follow-up studieswith living kidney donors confirm that donating akidney does not have an adverse effect on future healthin any way. It won’t shorten your life, or change it,for that matter. Donors lead active lives with only onekidney. They drive, work, exercise, serve in the militaryand do just about everything they did before. Afteryour initial recovery, we recommend a yearly routinephysical by your family physician.Will I be able to get insurance afterwards?A national study of insurance carriers found donorshad very few problems getting insurance. Only4 percent had difficulty getting
advancements in living donation as well as better educating the public on living and deceased organ donation. Since 1970, The Johns Hopkins Hospital has performed more than one thousand living-donor kidney transplants. In 1995, specialists at Johns Hopkins developed the living-dono
PATIENT EDUCATION Before Your Transplant Page 6 of 24 Transplant Coordinator Your main contact with the transplant team is the transplant coordinator. Transplant coordinators are also nurses. The transplant coordinators follow you through the evaluation phase, the transplant operation/surgical recovery phase, and after transplant.
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