Donating a Kidney for Transplantation. Living Kidney Donation Patient Education

Transcription

1 Dnating a Kidney fr Transplantatin Living Kidney Dnatin Patient Educatin

2 Dnating a Kidney fr Transplantatin Indiana University Health has a lng histry in the field f transplantatin, and cnsistently ranks as ne f the largest transplant prgrams in the natin by vlume. IU Health Transplant perfrmed Indiana s first kidney transplant in Since then, mre than 7,000 kidney transplants have been perfrmed at IU Health, and ver 2,000 f these have been living dnr kidney transplants. The purpse f kidney transplantatin is t give a healthy kidney t a persn wh has kidney disease. A successful kidney transplant may prevent the need fr dialysis and the cmplicatins assciated with kidney failure. The kidney that is transplanted can cme frm a persn wh has died (a deceased dnr), r it can cme frm a persn wh wishes t dnate while alive (a living dnr). There are nt enugh deceased dnr kidneys fr the number f peple wh need a kidney transplant. Yu are cnsidering having majr surgery t give ne f yur kidneys t anther persn. We ask that yu read the fllwing infrmatin and ask any questins yu may have befre agreeing t underg this prcedure. The IU Health Transplant team is available t assist yu thrughut the entire dnatin prcess, frm evaluatin thrugh fllw-up care. The living dnr crdinatrs are available Mnday-Friday, 8 am - 4 pm, and can be reached at r Wh Can Dnate? In general yu must be healthy, in gd physical and mental health, and at least 18 years ld t be a living dnr. Yu will cmplete a thrugh medical and psychscial evaluatin and yu will be fully infrmed f the knwn risks invlved with dnatin. Yur decisin t dnate shuld be cmpletely vluntary and free f pressure r guilt. Types f Living Dnatin Related Bld relatives f transplant candidates, including parents, children (ver 18 years ld), brthers, sisters, half brthers and sisters, aunts, uncles, cusins, nieces and nephews. Nn-Related Dnrs emtinally clse t transplant candidates, but nt related by bld, including spuses, in-law relatives, clse friends, cwrkers, neighbrs r ther acquaintances. Nn-Directed Dnrs nt related t r knwn by the recipient, but wh make a decisin t dnate purely ut f unselfish mtives. This type f dnr is cmmnly referred t as an annymus r altruistic dnr. Paired Dnatin An ptin fr kidney recipients and their dnrs wh are nt cmpatible r are prly matched t be matched with ther recipients and dnrs. The recipients trade dnrs t allw the transplants t ccur. Evaluatin Prcess Living dnrs must be chsen carefully in rder t avid utcmes that are medically and psychlgically undesirable. Yu will be evaluated with cnsultatins, lab tests and varius prcedures t determine the medical apprpriateness f kidney dnatin. IU Health takes all reasnable precautins t prvide cnfidentiality fr bth the dnr and the recipient. 1

3 Yu will interact with many members f the transplant team wh may include: A Financial Crdinatr is a nurse case manager wh will wrk with yur recipient s insurance s the dnatin prcess will be at n cst t yu, the dnr. The Transplant Crdinatr is a registered nurse wh specializes in the transplant and dnatin prcess. Yur crdinatr will prvide yu with educatin regarding the dnatin and transplant prcess. Yu are encuraged t ask questins and t becme fully infrmed abut the kidney dnatin and transplant prcess. A Living Dnr Advcate (LDA) is independent f the recipient transplant team and acts slely n yur behalf t ensure that yur rights are prtected and that yur decisin t dnate is infrmed and vluntary. The LDA is available t yu thrughut the dnatin prcess. A Nephrlgist is a physician wh specializes in kidney disease. The nephrlgist will assess the functin f yur kidneys and the safety f yur dnatin. Yur Surgen will meet with yu and discuss the apprpriateness f dnating ne f yur kidneys. The surgen will als discuss the significance f dnating ne f yur kidneys, the risks f the surgery and the pssible cmplicatins after yur dnatin. An Anesthesilgist will meet with yu the day f surgery, review yur medical histry and discuss yur risk(s) frm anesthesia. A Psychiatrist r Psychlgist will cnduct an in-depth evaluatin and assessment f yur psychscial histry, the relatinship between yu and the intended recipient and yur ability t cpe with the dnatin prcess. A Scial Wrker is available t prvide supprt and identify resurces that may be beneficial when needed. Yu will meet with a Scial Wrker during yur evaluatin. A Registered Dietitian is available t perfrm a nutritinal assessment and prvide nutritin educatin and supprt. Sme ptential dnrs may be referred t anther service fr cnsultatin. Fr example, sme patients need t be seen by a pulmnlgist (lung dctr) r a cardilgist (heart dctr) t assess fr ther medical cnditins. Many different tests are dne t determine if yu are a suitable dnr. Sme f the fllwing tests may be included in yur evaluatin prcess. Remember, ther tests may need t be dne based n the results f these tests. Bld tests are dne t determine yur bld type and identify any pssible reasn that yu might nt be able t dnate ne f yur kidneys. These tests will screen fr yur immunity t r the presence f specific viruses, including human immundeficiency virus (HIV). Additinal bld tests may be used t determine hw well ther rgans are functining. A chest X-ray helps yur physician identify any prblems with yur lungs. A urine test is used t screen fr the presence f urinary tract infectins and kidney disease. An EKG, echcardigram and/r stress test will shw hw well yur heart is functining. This will help yur physician decide if yur heart is strng enugh fr surgery. A CT scan will be dne t identify anatmy, bld flw t and frm yur kidneys and the presence f tumrs r kidney stnes. 2

4 Testing will be dne t make sure that yu have adequate kidney functin. Pulmnary functin tests may be required, especially if yu have a histry f smking r a histry f lung disease. This is a breathing test t analyze yur lung capacity and functin. Ptential Risks f the Living Dnr Evaluatin Prcess Health infrmatin btained during the evaluatin culd reveal cnditins that must be reprted t lcal, state, r federal public health authrities. During the evaluatin prcess, risks that a dnr may encunter include: Allergic reactins t cntrast (dye used in sme testing) Discvery f reprtable infectins Discvery f serius medical cnditins Discvery f adverse genetic findings that may be unknwn t yu Rutine dnr evaluatin tests are paid fr by IU Health Transplant. PLEASE NOTE: If yu seek evaluatin testing utside f the IU Health system, we cannt guarantee that the utside hspital will accept r fllw the billing prcess required fr IU Health Transplant t pay the claims. If this ccurs, yu may be financially respnsible fr thse bills. In additin, if medical issues are identified during the evaluatin prcess that are unrelated t dnatin, yu will be referred t yur primary physician fr further fllw-up. Financial respnsibility fr any testing r care yu receive that is nt related t the kidney dnatin will be yurs and/r yur insurance prvider. The IU Health Transplant team may determine that yu are nt a candidate fr living dnatin at this center. If this ccurs, yu may chse t pursue evaluatin by anther transplant hspital that might evaluate yu using different selectin criteria. Infrmatin Regarding Transplant Candidates/Recipients Each transplant hspital determines candidacy fr transplantatin based n existing hspital specific guidelines r practices and clinical judgment It is pssible that a deceased dnr kidney culd becme available fr a recipient wh is listed n the United Netwrk fr Organ Sharing (UNOS) waiting list befre the living dnr evaluatin is cmpleted r the living dnatin/transplant ccurs The recipient has the ptin f being listed fr transplant at multiple transplant centers and has the ability t transfer waiting time t a different transplant center withut lss f the accrued waiting time Any transplant candidate may have an increased likelihd f adverse utcmes (including but nt limited t graft failure, cmplicatins, and mrtality) that: Exceed lcal r natinal averages D nt necessarily prhibit transplantatin Are nt disclsed t the living dnr 3

5 IU Health Transplant can disclse t the living dnr certain infrmatin abut transplant candidates nly with the permissin f the candidate, including: The reasns fr a candidate s increased likelihd f adverse utcmes Persnal health infrmatin cllected during the candidate s evaluatin, which is cnfidential and prtected under privacy law Alternative treatments r therapies may be available fr the recipient s medical cnditin such as dialysis r deceased dnr kidney transplant. Please feel free t discuss kidney disease and/r any pssible alternative therapies with the healthcare team. Surgical Prcedure The surgery will be cnducted under general anesthesia. The surgen will place three small hles in yur abdmen fr a camera and surgical instruments, and ne incisin will be made t remve yur kidney. Yur abdmen will then be clsed. Yu will have a small IV tube and a urinary tube (catheter) in place fr 1-2 days after surgery. Mst dnrs remain in the hspital fr 2-3 days. Yu will prbably feel mre tired than usual fr 1-3 mnths after the surgery. Depending n yur jb s physical requirements, yu shuld be able t return t wrk in 2-6 weeks. Ptential Surgical and Medical Risks A living dnr undertakes risk and receives n medical benefit frm the perative prcedure f dnatin. There are inherent risks in all surgeries, especially surgeries cnducted under general anesthesia. Many cmplicatins are minr and get better n their wn. In sme cases, the cmplicatins are serius enugh t require anther surgery r medical prcedure, and althugh rare, there is the risk f death. Ptential cmplicatins and risks will be discussed with yu further during the evaluatin prcess. T reduce sme f these risks, it is required that IU Health living dnrs discntinue use f all nictine, including nictine replacement prducts. Dnr-specific pre-existing cnditins including, but nt limited t, age, besity r hypertensin may impact the mrbidity and mrtality f the dnr. Bleeding during r after surgery may require bld transfusins r bld prducts that can cntain bacteria and viruses that can cause infectin. Althugh very rare, these infectins include, but are nt limited t, human immundeficiency virus (HIV), hepatitis B virus (HBV), and hepatitis C virus (HCV). Despite effrts t prevent them, bld clts may ccasinally develp in the legs and can break free and ccasinally mve thrugh the heart t the lungs. In the lungs, they can cause serius interference with breathing, which can lead t death. The abdminal incisin is a ptential site fr infectin. Infectins at the sites where tubes are placed in yur bdy (tubes t help yu breathe and tubes in yur veins t prvide fluids, nutritin and t mnitr imprtant bdy functins) can cause pneumnia, bld infectins and lcal infectins. Damage t nerves may ccur. This can happen frm direct cntact within the abdmen r frm pressure r psitining f the arms, legs r back during the surgery. Nerve damage 4

6 can cause numbness, weakness, paralysis, and/r pain. In mst cases these symptms are temprary, but in rare cases they can last fr extended perids f time r even becme permanent. Other pssible cmplicatins include: injury t structures in the abdmen, burns caused by the use f electrical equipment during surgery, damage t arteries and veins, pneumnia, heart attack, strke, permanent scarring at the site f abdminal incisin, pain, fatigue, scrtal swelling, hernia, bwel bstructin, and abdminal r bwel symptms (such as blating and nausea). Surgical risks may be temprary r permanent and include but are nt limited t: Decreased kidney functin Acute kidney failure and the need fr dialysis r kidney transplant fr the living dnr in the immediate pst-perative perid. After kidney dnatin: On average, living dnrs will have a 25-35% permanent lss f kidney functin. The baseline risk f end-stage renal disease (ESRD) fr living kidney dnrs des nt exceed that f the general ppulatin with the same demgraphic prfile. Living kidney dnrs may have a higher risk f develping ESRD than healthy nndnrs with similar medical characteristics Living dnr risks must be interpreted in light f the knwn epidemilgy f bth chrnic kidney disease (CKD) and ESRD. When CKD r ESRD ccurs, CKD generally develps in mid-life (40-50 years ld) and ESRD generally develps after age 60. The medical evaluatin f a yung living dnr cannt predict the lifetime risk f CKD r ESRD. Living dnrs may be at higher risk fr CKD if they sustain damage t the remaining kidney. The develpment f CKD and subsequent prgressin t ESRD may be faster with nly ne kidney. Dialysis is required if the living dnr develps ESRD. The current practice is t priritize prir living kidney dnrs wh becme kidney transplant candidates. Female living dnrs have increased risks f preeclampsia r gestatinal hypertensin in pregnancies after dnatin Dnatin-related cmplicatins that ccur, even after discharge: May require the dnr t return t IU Health t receive treatment Will be billed t the recipient s insurance If the recipient fails t keep insurance, the recipient will be financially respnsible fr the dnr s medical bills fr any dnatin-related cmplicatins 5

7 Ptential Psychscial and Financial Risks Chsing t dnate a kidney can give yu the pprtunity t enrich the life f smene in need. There are, hwever, pssible persnal risks t yu as a result f dnatin which include but may nt be limited t: Prblems with bdy image Pst-surgery depressin r anxiety Feelings f emtinal distress r grief if the recipient rejects the transplanted rgan, has recurrence f disease r dies. Changes t yur lifestyle Persnal expenses f travel, husing, fd, child care and lst wages related t live dnatin (sme assistance may be available fr qualifying individuals) Future health prblems f a living dnr fllwing dnatin may nt be cvered by the recipient s insurance r yur insurance Lss f emplyment r incme Negative impact n yur ability t btain future emplyment After yu dnate ne f yur kidneys, health insurance cmpanies may cnsider yu t have a pre-existing cnditin and refuse payment fr certain medical care, treatments r prcedures After the surgery, yur health insurance and life insurance premiums may increase and remain higher In the future, yur ability t btain, maintain r affrd health, disability and life insurance culd be negatively affected; this risk can be minimized by aviding any gaps in yur insurance cverage r maintaining cntinuus cverage Reprting Requirements and Dnr Cmmitment t Medical Fllw-Up We are required t prvide infrmatin abut all rgan transplantatin t United Netwrk fr Organ Sharing (UNOS). This includes infrmatin abut the living dnr, including name, birth date, sex, scial security number, bld type, the dnr s relatinship t the recipient and sme bld test results. UNOS then assigns a case number t the transplant recipient and the dnr. The identifying infrmatin is nt accessible t the public r t ther researchers. This infrmatin is cllected in rder t determine hw many live dnr kidney transplants are dne, hw many are successful and if there are any cmplicatins. We are required t btain and reprt infrmatin n all living dnrs at the time f dnatin, and at six mnths, ne year and tw years after dnatin. We will send yu a kit t have bld and urine samples cllected and returned t IU Health fr prcessing, as well as a brief health questinnaire fr yu t cmplete. IU Health Transplant will cver the csts related t these tests. It is imprtant fr yu t be aware that any infectius disease r malignancy discvered during the first tw years f fllw-up that is relevant t the care f the recipient f yur kidney will be shared 6

8 with yu, the recipient s transplant hspital, and thrugh the Organ Prcurement and Transplantatin Netwrk (OPTN) Imprving Patient Safety Prtal. Additinally, sme infectins may need t be reprted t lcal, state, r federal public health authrities. Yu will need life-lng fllw-up after kidney dnatin. We strngly recmmend regular fllw-up with yur primary care physician at least yearly. The financial respnsibility f the fllw-up is yurs, the dnr. Natinal and Transplant Center-Specific Outcmes We will prvide yu with the current natinal and IU Health Kidney Transplant survival statistics frm the Scientific Registry f Transplant Recipients (SRTR). These can als be fund at srtr.rg. Specific survival utcme requirements must be met t be an apprved transplant center by the Centers fr Medicare and Medicaid Service. IU Health Transplant meets these requirements and is a Medicare-apprved transplant center. If yu dnate yur kidney t a recipient having a transplant at a facility that is nt apprved by Medicare fr kidney transplantatin, the recipient s ability t have immunsuppressive drugs paid fr under Medicare Part B culd be affected. Right t Withdraw Yu have the right t withdraw yur participatin as a dnr at any time during the prcess, and we will assist yu in ding s in a manner that is prtected and cnfidential. Infrmatin abut yur medical evaluatin, diagnstic test results, etc., will nt be discussed with the ptential kidney transplant recipient. It is up t yu what infrmatin yu discuss with the ptential recipient. Sale r Purchase f Human Organs The sale r purchase f human rgans is a federal crime and it is unlawful fr any persn t knwingly acquire, receive, r therwise transfer any human rgan fr valuable cnsideratin (i.e. anything f value such as cash, prperty, vacatins) fr use in human transplantatin. Additinal Infrmatin Yu may want t visit the websites listed belw fr additinal infrmatin regarding living kidney dnatin and kidney transplantatin. IU Health Transplant: Dnate Life America: United Netwrk fr Organ Sharing (UNOS): Natinal Kidney Fundatin: Transplant Experience Astellas: Rev