Living Liver Donation Patient Education Handbook. Charles O. Strickler Transplant Center

Transcription

1 Livig Liver Doatio Patiet Educatio Hadbook Charles O. Strickler Trasplat Ceter

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3 Livig Liver Doatio Patiet Educatio Hadbook Charles O. Strickler Trasplat Ceter UVA Liver Trasplat Program PO Box Charlottesville, VA Fax: Emergecy Phoe Number: (ask operator to page the Liver Trasplat Nurse Coordiator o call)

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5 The Normal Liver The liver is the largest orga i the body ad plays a importat role i regulatig may life processes. The liver weighs approximately 3-4 pouds ad is roughly the size of a football. It is made up of a spoge-like mass of wedge-shaped sectios called lobes. The liver is located i the right side of the abdome ad is protected by the ribcage. The liver is a very complex orga that performs may fuctios that are essetial for life. These fuctios iclude: Storig eergy i the form of sugar Storig vitamis, iro ad other mierals Makig proteis, icludig blood-clottig factors, to keep the body healthy ad growig Processig wor out blood cells Makig bile, which is eeded for food digestio Helpig clea the blood by breakig dow ad removig may medicies ad toxis, such as alcohol Regeeratig its ow damaged tissue Maitaiig hormoal balace Aidig i digestio by helpig i the absorptio of fat ad certai vitamis, icludig vitamis A, D, E ad K Helpig the body resist ifectio by producig immue factors ad by removig bacteria from the bloodstream Liver Failure ad Trasplatatio Liver failure occurs whe the liver is uable to perform its ormal fuctios. A diseased liver ca result from a acute failure as a result of a ifectio or drug reactio. Liver disease may also result from chroic failure due to a ogoig viral ifectio, alcoholism, ijury due to elevatio i bilirubi, or a autoimmue disease. Liver failure ca also result from havig a primary liver cacer. A liver ormally has a great ability to heal itself ad ca overcome most ijuries it experieces o a short-term basis. Occasioally the liver is so ijured, however, that there are ot eough cells left to regeerate ad scar tissue forms i the liver. Whe all ormal liver tissue is replaced by scar tissue, the liver is said to be cirrhotic ad a liver trasplat may be the oly available optio. A healthy liver ca regeerate (grow back), which o other orga i the body is able to do. There are illesses, however, that ca cause severe ad irreversible damage to the liver. Livig Liver Doatio Patiet Educatio Hadbook 3

6 Why Livig Doatio? Each year, thousads of people die from complicatios of chroic liver disease ad cirrhosis. There are curretly over 17,000 persos awaitig a liver trasplat from a deceased door i the Uited States. Oly slightly over 4,500 liver trasplats from a deceased door are performed i the Uited States each year. Because of the severe atioal orga shortage, alterative solutios to usig deceased doors have bee sought. Livig liver doatio is oe of those solutios that has prove to be successful for some patiets. The first livig door liver trasplat i the Uited States was performed i Sice that time, early 3000 livig door liver trasplats have bee performed i this coutry. The majority of these procedures have bee doe i childre, usig a smaller portio (usually the left lateral segmet) of the liver. Because of the growig eed for adult livers, much larger portios have bee removed (total right ad left lobes) for trasplatatio. There are several advatages for a trasplat cadidate to receive a livig liver trasplat as opposed to receivig a liver from a deceased door. The livig door trasplat surgery ca be scheduled ahead of time, for example. More importatly, it ca give patiets a opportuity to be trasplated before the oset of life-threateig complicatios of their liver disease, thus leadig to better outcomes. Aother importat advatage to livig liver trasplatatio is the emotioal satisfactio that doors share with recipiets whe a life is saved. Who Ca Be A Livig Door? I additio to parets, childre, sibligs, ad other relatives, livig doors ca also iclude i-laws, frieds, co-workers, etc. The potetial door ad recipiet must have compatible blood types ad the door must volutarily offer to doate. *The sale or purchase of huma orgas is a federal crime ad it is ulawful for ay perso to kowigly acquire, receive, or otherwise trasfer ay huma orga for valuable cosideratio for use i huma trasplatatio. Selectio Criteria A potetial livig door must be i excellet physical ad psychological health. Idividuals with a history of high blood pressure, diabetes, heart disease, cacer or liver disease will ot be cosidered as doors because of the potetial health risks. Obesity (a body mass idex of greater tha 30) ad prior abdomial surgeries may also exclude a door because of the icreased surgical risk. Doors must also be betwee 18 ad 55 years of age. I additio, all doors must complete ad pass a thorough medical ad psychosocial evaluatio that is described further i this hadbook. It is importat to remember that livig door trasplat is oe optio for someoe with liver failure. A possible alterative to livig door liver trasplat is for the potetial recipiet to be placed o a waitig list for a deceased door liver trasplat. You have the optio to opt out of the doatio process at ay time. 4 Livig Liver Doatio Patiet Educatio Hadbook

7 The Decisio to Doate Beig a livig door ca be a very rewardig experiece. Livig doatio is a sharig of life, a givig of oeself to someoe that you care about. Doatig a portio of your liver, however, is also a choice that oly the door ca make. It is very ormal to have secod thoughts regardig the decisio to doate ad to experiece feeligs of guilt about ot watig to doate. The Trasplat Team is always available to esure all of your questios are aswered thoroughly. Our resposibility is to protect the privacy ad rights of each potetial door. At ay time i the process, it is acceptable to say No, regardless of the circumstace. Remember that the oly right decisio is the oe that makes the potetial door the most comfortable. Hospital persoel who are ivolved i the course of your care may review your medical record. They are required to maitai cofidetiality as per law (HIPAA) ad policy of this hospital. If you do become a door, data about your case, which will iclude your idetity, will be set to a Federally-desigated orgaizatio called UNOS (Uited Network of Orga Sharig) ad may be set to other places ivolved i the trasplat process as permitted by law. Commuicatio betwee the trasplat ceter ad yourself will remai cofidetial, but will be subject to authorized release of iformatio. Your evaluatio results ad records will be kept cofidetial from the iteded recipiet. Should you decide ot to doate, your reasos for ot goig forward will be kept cofidetial ad ot shared with the potetial recipiet The Liver Door Evaluatio If someoe is iterested i learig more about beig a liver door to a patiet at the Uiversity of Virgiia, he/she should cotact the Trasplat Office to speak with oe of the urse coordiators. The urse will ask a series of health history questios over the phoe. Blood Typig The first step i the process is determiig if your blood type ad the recipiet s blood type are compatible. The chart below illustrates blood type compatibilities. Door Recipiet O O A, O A B, O B O, A, B, AB AB Medical ad Psychological Evaluatio Oce it is determied that the potetial door ad the iteded recipiet have compatible blood types, the potetial door will be further evaluated by the Door Evaluatio Team. This team is a group of UVA family medicie physicias, psychologists, ad a social worker that meets ad evaluates each potetial door. A review of past ad preset medical problems ad surgeries is doe to be sure that there are o cocers idetified that would place the potetial door at ay risk. This team is ot ivolved i the care of the potetial recipiet ad will oly look after the potetial door s health, safety ad iterests throughout the liver doatio process. This team will decide if there are ay medical or psychosocial problems that would prevet someoe from beig a livig door. Oe member of this team is the Idepedet Door Advocate. This perso advocates for potetial doors eeds, rights, ad iterests ad will help potetial doors to uderstad the iformed coset, evaluatio, surgery, ad follow-up processes. Livig Liver Doatio Patiet Educatio Hadbook 5

8 Please ote: Oly oe potetial door will be evaluated for a give recipiet at a time. At ay poit i the evaluatio process, if a potetial door is deemed iappropriate for doatio, aother potetial door may begi the evaluatio. The other evaluatio tests ad studies icluded i this evaluatio are listed below: 1. Blood studies- will iclude blood chemistries, blood couts, immue system fuctio, ad tests for certai ifectious diseases 2. Chest x-ray- to determie the health of the lugs ad respiratory tract 3. EKG of the heart- to determie how well the heart is workig ad it may reveal damage that was previously ususpected 4. MRI of the liver- to determie the size ad shape of the liver ad major blood vessels Additioal tests maybe ecessary depedig o a door s age ad idividual medical history. Oce the Door Team evaluatio is complete, the Liver Trasplat Team will review the recommedatios ad test results. Abormal test results may warrat further testig or may prevet you from doatig altogether. If the test results are cosidered ormal, our office cotacts the potetial door to set up a appoitmet to meet with a liver trasplat surgeo to specifically discuss risks of surgery ad to aswer ay further questios. After this visit with the surgeo, each door is give a two-week coolig off period/or time-out. This twoweek time is required for the potetial door to thik about all of the iformatio that has bee shared ad re-cosider his/her decisio to doate. After the two-weeks have passed, the door the cotacts the trasplat office to let the coordiator kow of his/her decisio. The trasplat surgery ca the be scheduled if it has ot already bee doe. At this poit i the evaluatio process, wome who are o the birth cotrol pill may be asked to stop takig this medicatio prior to the surgery due to the icreased risk of developig blood clots. Oe beefit of the door evaluatio is the potetial for fidig out about health problems that you did ot kow you had but may eed treatmet for. Your ability to get health ad life isurace i the future may be affected by fidig out about these health problems. Future liver disease or abdomial problems may ot be covered by your isurace. If these problems are ot related to the surgery ad are ot covered by your health isurace, you will be resposible for all costs. Your future health, disability, ad life isurace premiums may be altered due to beig a door. You also may ot be able to get health, disability ad life isurace i the future if you lose my curret isurace or if you are ot ow isured. Although the Uiversity of Virgiia is a Medicareapproved provider, if the iteded recipiet s trasplat is ot provided i a Medicare-approved trasplat ceter this could affect his/her ability to have his/her immuosuppressive medicatios paid for uder Medicare Part B. 6 Livig Liver Doatio Patiet Educatio Hadbook

9 Risks of the Door Operatio Although livig liver doatio surgery is relatively safe, the operatio does ivolve certai risks. Ulike livig kidey doatio, i which death related to the operatio is rare, there have bee at least three deaths reported after livig liver doatio as of December Curretly, the chace of death from this surgery is about 1 out of every 500 liver doors. This is a major operatio ad it should be discussed thoroughly with your family ad family physicia as well as with the Trasplat Team. Below is a list of possible problems ad risks associated with liver doatio surgery. Mior problems: Nausea ad vomitig for several days after the surgery Pai at the icisio site Allergic reactios Mior bleedig at the icisio Abormal scar formatio Other risks related to havig ay major operatio: Ifectio at the surgical site Heria at the surgical icisio Fluid buildup i the chest Bowel obstructio Blood clot Possible psycho-social risks iclude: Depressio Post Traumatic Stress Disorder (PTSD) Geeralized axiety Axiety regardig depedece o others while recoverig from the doatio Possible feeligs of guilt All of the risks will be explaied to you i greater detail at the time of your visit with the liver trasplat surgeo so that you ca make a iformed decisio regardig doatio. Temporary jaudice, which is a yellow color to the eyes ad ski Delay i retur of itestial fuctio (about 1 out of 10 cases) Major problems: Bile duct problems Leakig bile (about 1 out of 10 cases) usually stops by itself, but sometimes additioal medical attetio or eve surgery is eeded to cotrol the bile leak Bile stricture (arrowed bile duct, about 1 out of 100 cases), ca occur quite some time after the operatio; may eed a tube placed i the duct to keep it ope or aother surgery to correct the problem Serious bleedig requirig blood trasfusio Liver failure (about 1 out of 1000 cases), if your remaiig liver does ot grow eough after surgery Livig Liver Doatio Patiet Educatio Hadbook 7

10 Preparig for Surgery Psychosocial Support The Trasplat Team has a dedicated social worker available to aswer questios or assist you ad/ or your family throughout the door process. May potetial doors have questios ad cocers that come up as they begi the evaluatio process. Commo issues iclude worries about fiacial resposibilities whe work is missed, childcare, housig for family durig your hospitalizatio, ad support after surgery durig the recovery phase. It is commo for potetial doors to have some stress associated with cosiderig doatio. Whether oe is a family member or fried, the decisio to cosider doatio ca raise may coflictig emotios. The Trasplat Team is very committed to addressig these cocers i a completely private ad cofidetial maer. The social worker is available to meet with you ad your family to talk about ay questios or cocers both i the cliic ad at ay time throughout your hospitalizatio. It is very importat to remember that a door ca chage his/her mid about goig through with surgery at ay poit before the surgery, eve the day of surgery. The trasplat team will support whatever decisio a door makes at whatever poit i this process. Your decisio will be kept cofidetial ad will ot be shared with the iteded recipiet, or ay oe else. Before the surgery About a week or two before the scheduled surgery, both the door ad the recipiet will come to the trasplat cliic for a pre-operative visit. Durig this visit the door will have a history ad physical exam performed by a surgeo, receive pre-operative istructios, ad have pre-operative blood draw. Coset for the doatio surgery will also be obtaied at this cliic visit. You will also be evaluated i the Pre-Aesthesia Evaluatio ad Testig Ceter where a aesthesia screeig will occur. A urse from the pre-operative area will cotact you the eveig before surgery to tell you what time to report to the hospital for your operatio. You will ot actually be admitted to the hospital util the morig of the surgery. If you live far away ad wat to stay i Charlottesville prior to surgery let us kow ad we ca help you fid accommodatios. It is importat ot to eat or drik after midight the ight before your surgery. If there are medicies that you take each day, you will be istructed of which oe(s) to take ad ot to take o the day of surgery. You should avoid takig aspiri or medicies that cotai aspiri for 10 days prior to your surgery, uless directed to do so by your physicia. The Surgical Experiece The day of surgery you ad the recipiet will be istructed to preset to the Surgical Family Waitig Room o the first floor of the mai hospital. Ay family members ad frieds who accompay you to the hospital ca wait i this waitig room where the doctors will speak to them after your surgery is complete. The door ad recipiet will the go to the Surgical Admissio Suite to prepare for surgery. The staff i the surgical admissio suite will start a itraveous (IV) lie through which medicatios will be give to you durig surgery. You will the be take to the operatig room where the aesthesiologist will give you a medicatio through your IV lie to put you to sleep. You will be uder geeral aesthesia throughout the etire operatio ad a member of the surgical team will be at your side at all times. A livig door liver trasplat actually ivolves two overlappig surgeries betwee the healthy door ad the recipiet. The operatig rooms are sideby-side. A portio of the door liver, usually the right lobe, is removed with its blood supply itact i oe operatig room while the recipiet s diseased liver is removed i its etirety i aother operatig room. The healthy portio of the door liver is the sew ito place i the recipiet. Durig the door s surgery, the gallbladder is also typically removed as part of this procedure. 8 Livig Liver Doatio Patiet Educatio Hadbook

11 The door operatio usually takes betwee 6 ad 8 hours. You will wake up i the Recovery Room where your blood pressure ad other vital sigs will be closely moitored by the ursig staff. You will feel very groggy ad may have some discomfort. A catheter will be draiig urie from your bladder ad frequet uriary output measuremets will be take. Oce you are sufficietly awake ad your vital sigs are stable, you will be trasferred to 5-West, the i-patiet Trasplat Uit. Your family members may visit with you. The IV will remai i place util you are able to take i fluids ad food by mouth. Medicie for pai will be available whe you eed it. You will have sequetial compressio devices o your legs to prevet blood clots i your legs. Also upo awakeig you will be asked to take deep breaths, ad to cough ad tur to help keep your lugs free from ifectios. Oce able, you will be ecouraged to get out of bed, usually o the eveig of surgery or the followig morig. Durig your hospital stay, you will be ecouraged to move aroud as much as possible. You are likely to have some pai for the first several days, which is completely ormal. You will remai i the hospital for five to seve days ad at the time of discharge, you will be give arcotic pai medicatio to be take by mouth oce you are at home. You will eed to come back to the Trasplat Cliic approximately 2-3 weeks after your discharge for a physical exam ad blood work to moitor how your body is adjustig after the surgery. You will be asked to come back to be see at least oe more time ad the released from our care if you are appropriately recovered. Because of its amazig capacity to regeerate, the liver is restored to its origial size i the door, ad grows to a comparable size i the recipiet, i approximately 12 weeks. You should otify each of your local health care providers of ay problems that develop oce you are discharged home, ad they should be give the umber to the Trasplat Office i the evet they eed to cotact us to discuss a problem related to your surgery. Please ote that UNOS, the Uited Network for Orga Sharig requires that Trasplat Ceters submit iformatio pertaiig to livig doors addressig the health iformatio of each livig door at 6 moths, oe-year, ad two-years followig the doatio. Doors may be cotacted by phoe ad/or mail askig for a update o your health. The Recovery Process ad Follow Up After Discharge You should aticipate beig out of work for 6 to 8 weeks after your surgery to allow your body time to cotiue healig itself properly. This will deped o your idividual recovery as well as the type of work you do. Liftig will be restricted to o more that 10 pouds for the first three weeks followig surgery, ad the ca gradually be icreased as you heal. Walkig will be advised ad you will be ecouraged to slowly icrease the amout of walkig each week. Livig Liver Doatio Patiet Educatio Hadbook 9

12 Frequetly Asked Questios Is every patiet i eed of a liver trasplat a cadidate for receivig a liver from a livig door? Not every patiet o the liver trasplat waitig list is a cadidate to receive a liver from a livig door. As liver disease progresses, ad the recipiet becomes more ill, it becomes more likely that he/she will require a whole liver for trasplat. A whole liver ca oly come from a deceased door. If a recipiet qualifies for a livig door liver trasplat, the trasplat team will ecourage that as a optio ad provide the ecessary iformatio. Who pays for the evaluatio ad surgery? The costs of the evaluatio ad surgery for doors are covered by the recipiet s isurace compay. Costs that are ot covered iclude, but are ot limited to, loss of salary due to time off from work, hotel ad trasportatio costs, ad persoal expeses. Doors should explore their employer s sick leave policy, sice they will ot be able to retur to work for approximately six to eight weeks. If you have fiacial cocers you should discuss these issues with the Door Evaluatio Team ad/ or the Trasplat Team prior to doatio. It is the resposibility of the potetial door to make the Trasplat Program aware of ay fiacial cocers prior to the surgery date. Will I have much pai after this surgery? It is commo ad expected for doors to experiece some mild pai ad discomfort after the surgery, which may persist for several weeks. Pai medicatios will be made available to you durig your hospitalizatio to keep you as comfortable as possible. Pai medicatio does ot always take away all of the pai, but you should feel comfortable. It is importat to let your doctors ad urses kow if your pai is ot well-cotrolled or is worseig over time. You will be give a prescriptio for pai medicatio to take by mouth oce you are discharged from the hospital as well. How will this surgery affect my lifestyle? Because of the uique ability for the liver to regeerate (grow back), it will retur to its origial size i approximately 12 weeks. The trasplat team will recommed to you that you avoid alcoholic beverages for the first several moths up to a year, followig liver doatio surgery. After recovery, which is typically 6 to 8 weeks, you ca work, drive, exercise ad participate i sports as usual. You ca cotiue all types of occupatios, icludig military duty. There is also o evidece to suggest that female doors suffer ay effect o their ability to become pregat or bear childre. What if I chage my mid about havig this surgery? A potetial door should ever feel pressure to doate. At ay poit i the evaluatio process, you have the optio to chage your mid. Eve if you get through the etire door evaluatio, you still have the opportuity to chage your mid. You ca put a stop to the surgery up util the poit you are put to sleep i the operatig room! The trasplat team will support whatever decisio you make, at whatever time you make it. Your decisio will be kept cofidetial ad will ot be shared with your iteded recipiet, or ay oe else. Wat more iformatio? We have available to you, a DVD titled Livig Liver Doatio: What are the Risks ad Beefits? that you ca check out from our office if you wish. This video was created by The America Society of Trasplat Surgeos through a educatioal grat by Astellas Pharma US, Ic. Please let us kow if you are iterested i viewig this optioal educatioal video. You might fid the followig web-sites helpful regardig livig doatio ad liver trasplatatio, i geeral: Livig Liver Doatio Patiet Educatio Hadbook

13 If at ay time durig the process of evaluatio, doatio or eve post doatio, you have cocers or complaits you may report these to the Uited Network for Orga Sharig (UNOS). Uited Network for Orga Sharig (UNOS) is the private, o-profit orgaizatio that maages the atio s orga trasplat system. Cotact UNOS at: Thak you for takig the time to carefully read the iformatio i this hadbook. Please cotact our office with ay questios you might have about livig liver doatio ad/or if you wish to be evaluated as a door.*. Livig Liver Doatio Patiet Educatio Hadbook 11

14 Patiet Rights ad Resposibilities UVA Health System provides quality health care while respectig the rights of our patiets ad their families. Durig your visit you ca expect: : What You Ca Expect Iformatio you ca uderstad about your illess ad plaed treatmets. To take part i makig care decisios icludig why you eed a treatmet ad what will happe if you do ot have it. To kow the ame of the doctors ad all staff takig care of you. To have your family or doctor to be told whe you are admitted to the hospital, if you wish. To receive care i a safe eviromet ad to be free from ay form of abuse or harassmet To have persoal privacy ad to have your health care iformatio treated cofidetially. To access iformatio i your medical record. The chace to write dow your wishes for future medical care (usig a Advace Directives form). We will follow your expressed wishes. To have your pai assessed ad maaged. To be free from restraits uless eeded to keep you or others safe. The optio to agree to or refuse ay research study or experimet. The chace to review your bills ad have ay questios aswered. A timely reply to ay cocers or complaits. To provide the best possible care, we ask that you ad your family: Patiet Resposibilities Tell us correct ad complete iformatio about your health, wishes for your care, chages i your coditio, ad your cocers. Ask questios whe aythig is uclear. Follow your care pla or accept the risks if you make aother choice. Show respect for all patiets, visitors, staff as well as the hospital rules. Pay your bills promptly. If you are uable to pay for your care you may receive help. Ask us for iformatio about our fiacial assistace program. Please feel free to ask ay questios or talk about ay cocers with your health care team. If you are ot satisfied, please call our Patiet Represetative Departmet at You have the right to cotact a agecy listed below: Office of Licesure ad Certificatio Virgiia Departmet of Health Office of Quality Moitorig Phoe: or Fax: The Joit Commissio Office of Quality Moitorig Phoe: Fax: Livig Liver Doatio Patiet Educatio Hadbook

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16 Charles Lug Trasplat O. Strickler Program Trasplat Charles Ceter O. Strickler Trasplat Ceter UVA Liver Health Trasplat System PO Program Box PO Charlottesville, Box VA Charlottesville, VA Fax: Emergecy Phoe Fax: Number: (ask Emergecy operator Phoe to page Number: the Heart/Lug Trasplat Coordiator o call) (ask operator to page the Liver Trasplat Nurse Coordiator o call) , 6/14