All You Need to Know About Becoming a Donor
Usually, organs for transplantation are obtained from deceased donors, after their families give permission. But there are not enough deceased donor organs available for everyone who needs one. As a result, increasing numbers of patients are being added to the transplant waiting list, where many become too sick to undergo the procedure, or die before a liver can be found.
More than a decade ago, surgeons began seeking ways to combat the organ shortage and save more patients. One approach, called living donor liver transplantation, involves surgically removing a portion of the healthy donor’s liver and using it to replace the recipient’s diseased organ, which is first entirely removed. These procedures were first performed using adult donors for children who needed transplants. In addition, surgeons developed methods of splitting a single cadaver liver in two so it could serve two recipients. Yale-New Haven Transplantation Center surgeons were at the forefront of both these surgical advances, and also pioneered living donor liver transplants in adult recipients.
Living donor transplantation is possible because the liver, unlike any other organ in the body, has the ability to grow back or regenerate. It regenerates over a very short period, ranging from several days to six to eight weeks. So when the surgeons remove a piece of the donor’s liver, the part that remains in the donor grows back to its original size.
Q. What are the advantages to living donor liver transplant?
A. The main advantage is that the patient does not have to wait for a liver to become available from the United Network of Organ Sharing (UNOS) waiting list and risk dying before one can be found, or face going into surgery in a much sicker, weakened state. The sicker a patient gets, the greater the chances that there will be complications during the early post-transplant period and the higher the risk of not doing well after transplant.
There may be some additional benefits. The transplant can be scheduled for a time that is medically best for the patient. Since living donors are usually young, healthy adults who have undergone a thorough medical evaluation, the quality of the liver itself may be better. Finally, preservation time (when the liver is without blood) is minimal; minutes, not hours.
Q. What are the possible complications of the donor’s operation?
A. As with any surgery involving general anesthesia, there are possible complications from the anesthesia itself, including heart problems, stroke and blood clot formation in the legs or lungs. There are also risks of bleeding or of bile leaks after surgery. There exists the possibility that the remaining portion of your liver will fail and you will need an urgent liver transplant yourself. There is even a risk that you might die.
While such complications are rare, they do happen, and we will discuss them with you in more detail during the evaluation. The most common complications of this surgery are small bile leaks from the remaining portion of your liver, minor wound infections and gastrointestinal upsets (such as constipation, indigestion, occasional nausea or diarrhea). These usually resolve after a couple of weeks, but may take several months.
Q. How much of the donor’s liver is removed?
A. The liver is divided into a right lobe and a left lobe. The division between the lobes permits surgeons to divide the liver into two distinct parts, which can function independently of each other. When the recipient is an adult, about 40-60 percent of the donor’s liver is usually removed, depending on which lobe is used. Because of its position on the underside of the liver, the donor’s gall bladder is also removed.
When the recipient is a small child, only a piece of the donor’s left lobe (called the left lateral segment) is removed. This segment is approximately 25 percent of the liver. The gall bladder remains intact.
Q. How much time has to pass between removing the piece of liver from the donor and transplanting it in the recipient?
A. Usually, the operations on the donor and the recipient take place at the same time. If the recipient has a liver tumor, he or she will be brought to the operating room first to determine if the cancer has spread outside the liver. If it has, the transplant procedure is cancelled.
Q. Can I be a living donor?
A. Generally, you should be between the ages of 18 and 55. If a donor is between the ages of 18 and 21, parental consent will be required. We prefer donors to be the same size or bigger than the recipient, but sometimes they can be smaller. You must not be pregnant. You should not be overweight, although if you are, you may still be considered a potential donor if you lose weight. You should not have any major medical or psychiatric illnesses. You must also be able to understand the risks of this surgery and be able to comply with our instructions for short- and long-term medical care follow-up.
Q. Do I need to be related to the recipient?
A. No, you do not need to be a blood relation, but because there are risks involved, it is recommended that you have a vital emotional relationship with the recipient. At the current time, “Good Samaritan” (i.e., anonymous) donations are not allowed.
Q. If I am related to the recipient, will he or she have less rejection?
A. In reported studies, there does not appear to be a lower risk of rejection if the donor is a blood relative. The relationship between donor and recipient also does not appear to affect the amount of immunosuppressive medication the recipient will need. You would probably need to be identical twins for the relationship between the donor and recipient to make a big difference.
Q. What is involved in the evaluation process?
A. The purpose of the evaluation is to make sure that your liver is normal and of adequate size, and that you do not have any medical or psychosocial issues that would make this procedure more risky or difficult for you. We also want to make sure you do not have a medical condition that could be transmitted to the recipient. Finally, we want to make sure that you are becoming a donor voluntarily, and that no one is pressuring you or paying you to do this.
Q. Will my recipient be removed from the UNOS transplant waiting list if I am evaluated?
A. No changes will be made to the recipient’s status on the UNOS waiting list until the time of transplant. If a recipient needs to be re-listed for a transplant within one year, previous waiting time can be credited.
Q. Will my evaluation be covered by medical insurance?
A. You should not incur any expenses related to the evaluation, surgery, hospitalization or immediate post-operative care. The majority of insurance carriers will approve a Living Donor Evaluation once the recipient has been accepted as a candidate for liver transplantation. Since most recipient insurance carriers will cover the donor’s medical expenses only for a short period of time, we strongly encourage you to have your own medical insurance coverage before becoming a living donor.
You may, however, incur some expenses for travel and for pain medication after the surgery. If you receive any medical bills related to the evaluation, surgery, hospitalization or immediate follow-up, you should forward them to the Living Donor Coordinator.
Q. May I get my evaluation done by my own doctor?
A. Given the extent of the surgery, it is better that our team perform all the tests and examinations. If you live far from our hospital, we can have some portions of the evaluation done locally, but you will still need to be examined by our physicians. For insurance and billing reasons, it is also easier if the evaluation is done at Yale-New Haven Transplantation Center.
Q. What is the first step in the evaluation process?
A. The first step is to know your blood type. This is a simple test that your doctor can do, or you can go to any blood donation center and they will check it for free. You must be either the same blood type as your recipient, or blood type “O”. Your Rh factor, positive or negative, does not affect your suitability to donate.
Q. What do I do once I know my blood type?
A. Call our Transplantation office at 203-785-2565 and advise the receptionist that you wish to discuss living donor liver transplantation. You will be put in touch with the Transplant Coordinator for the Living Donor Liver Transplant Program. We will do a brief health screening over the phone, and you will have a chance to ask questions. We will also request detailed demographic data (date of birth, address, etc.) and insurance information from you, and schedule an appointment for you with our Living Donor surgeon.
The surgeon will discuss living donor liver transplantation with you, including the potential risks and the statistics on the procedure at our hospital, elsewhere in the United States, and worldwide. After your meeting with the surgeon, you will be asked to sign a consent form to proceed with the evaluation. If you agree to proceed, we will schedule the living donor evaluation for you.
Q. What is the second step of the evaluation?
A. The living donor evaluation involves both medical and psychosocial assessments. The medical assessment will be done by the Living Donor hepatologist (liver specialist) and a cardiologist. The hepatologist will discuss living donor liver transplantation, take a full medical history and do a physical exam. The cardiologist will take a medical history and do an EKG, echocardiogram and sometimes a stress test. The psychosocial assessment will be done by the Living Donor social worker and a psychiatrist.
A routine evaluation also includes extensive blood work, a chest Xray, and an abdominal MRI to measure the volume of your liver and to look at the liver’s blood supply and its bile ducts. Other tests or consultations may also be necessary. A liver biopsy is required in some cases.
Q. Do I need to fast before my appointments?
A. In general, it is not necessary to fast before an appointment, unless we specifically tell you to do so.
Q. Should my family come with me to the appointments?
A. It is important to have your immediate family or next of kin come with you to visit the surgeon, hepatologist and social worker, so they can participate in the process and understand what is involved before you decide to proceed. All these appointments offer the opportunity for you and your family members to ask questions and learn more about the procedure, so you can make an informed decision. Your designated next-of-kin or your designated health care proxy (the person you have chosen to make treatment decisions for you if for any reason you are unable to make them yourself) must participate in the evaluation process and attend the final appointment before the scheduled surgery.
Q. How quickly will I know if I can be a donor?
A. Generally, within two weeks after you complete every component of the evaluation, the Living Donor Team will contact you about the decision. If you meet all the criteria to become a donor, you will need to allow at least two weeks’ reflection time before we will proceed with surgery. This is to give you time to think through your decision to donate part of your liver. It is not a decision you should make lightly. You should consider it very carefully and discuss it with your family.
Q. Who makes the final decision as to whether I can be a donor?
A. Once you have completed the evaluation, the Living Donor Team reviews all your information and makes a recommendation to the Transplant Team at the Donor Review Meeting, which brings together physicians, surgeons, transplant coordinators, radiologists and social workers. The Transplant Team as a whole makes the final decision to proceed. In our decision-making, we put the well-being of the donor ahead of anything else. Your safety is paramount.
Q. If I am cleared to be a donor, who decides when to do the transplant?
A. This decision is made jointly by the Transplant Team, by you and by the recipient. The Transplant Team, particularly the physicians involved directly in your recipient’s care, will determine as accurately as possible the best time to do the transplant, based on the recipient’s medical condition. Once we know this, we ask for your input as to what suits you best, within clinical limits. Usually, Tuesdays are reserved for living donor surgery, since we need to coordinate two operating rooms and two teams of surgeons, nurses and anesthesiologists.
Q. Will the recipient be involved in the donor evaluation process?
A. No. The donor evaluation is kept confidential. As a potential donor, you will have your own team of healthcare professionals, known as the “Donor Advocate Team.” The Donor Advocate Team will be separate from the recipient’s team and will not provide any information to the recipient or any of the recipient’s family members. As a potential donor, it is your decision how much information you wish to share. It is important that you have a support person, other than the recipient, to help you through the evaluation process.
Q. Should the cause of the recipient’s disease affect my decision to donate?
A. You are volunteering, with extraordinary generosity, to donate part of your liver in an attempt to save another person’s life. Before you make this decision, it is important that you understand how likely it is that your sacrifice will actually have that result. Some diseases (such as hepatitis C and cancer of the liver) can recur after transplant.
We will be discussing the recipient’s medical condition with you, what outcome we can expect from the transplant, and what possible additional complications, if any, may be associated with the recipient’s particular disease. Once we discuss all this information with you, only you can make the final decision. We expect that you will understand and respect the confidential nature of these discussions and will be sensitive to maintaining the recipient’s privacy in these circumstances. Your recipient will be aware that we need to have these discussions with you.
Q. Will I require a blood transfusion during my surgery?
A. Blood transfusion during this surgery is very unusual, although it may be necessary. As a precaution, we will ask you to “donate” one unit of your own blood 7-42 days before the surgery. If you do need a transfusion, we can then use your own blood, so you will not be exposed to the risks of a transfusion from someone else.
Q. Should I stop smoking before my surgery?
A. We strongly advise you to stop smoking, even if you are a light smoker. Heavy smokers will be ineligible to donate because of their increased risks.
Q. Should I not drink alcohol?
A. If you are going to be a liver donor, it is best that you stop drinking. If you have a history of alcohol use, it is very important that you tell our physicians. Alcohol use may not preclude you from being a donor, but you may need to undergo a liver biopsy to be sure your liver has not sustained any damage. You should refrain from alcohol use for eight weeks after donation, until your liver is presumed regenerated.
Q. Should I stop taking my medication before the evaluation or the surgery?
A. You should not stop any prescription medication unless advised to do so by a physician. You should avoid aspirin or non-steroidal medications such as Advil or Motrin for seven days before a liver biopsy or surgery. These medications affect the ability of the blood to clot and put you at higher risk for bleeding complications. Instead, you may take Tylenol if needed. Women who take birth control pills or pills for hormone replacement therapy will be advised to stop taking them because of the increased risk of blood clots during recovery from surgery.
Q. How long will I be off work?
A. The minimum amount of time you need to allow yourself to recover is 4-6 weeks. Because people recover differently, with varying degrees of fatigue and pain, you may need as long as 8-12 weeks. We prefer that you be in a position, both financially and from a job security perspective, to be able to take 12 weeks if you need that much time.
Q. Will I be entitled to disability pay?
A. If your job provides disability coverage, then you will most likely be covered. However, because living donor liver transplantation is still relatively new, it is best that you discuss this with your benefits department before you decide to proceed.
Q. How big is the incision?
A. The incision is a large one and is the same for the donor and recipient. It is called the chevron incision.
Q. Will I have a scar after the incision heals?
A. In most cases, the incision heals quickly, leaving a scar that fades over time but will most likely always be visible. If a wound infection develops, you may be left with a wider scar that will be more obvious. Occasionally, people develop what is called granulation tissue. This is over-growing or over-healing of the skin, and it results in a raised, wide scar. This can be corrected by plastic surgery if it bothers you, but it is unlikely that your recipient’s insurance would cover cosmetic surgery.
Q. Will I have much pain after the surgery?
A. Unfortunately, you will have significant pain after this surgery. We will give you pain medication, but you will still be very uncomfortable for at least the first week or so. You will have less pain as each day goes by, but most donors tell us that they still have a significant amount of discomfort for 2-4 weeks after the surgery. Most pain medication is broken down (metabolized) by the liver. Because you have a significantly smaller amount of liver volume right after your surgery, we will monitor you very carefully to make sure we are not giving you too much medication, because doing so could have serious side-effects.
Most pain medicines make you drowsy and can affect your breathing and bowel function. We will try to get the right balance of pain medication to make you comfortable but not drowsy, so you can do your deep breathing exercises, coughing and walking. We may use an epidural catheter inserted before surgery to administer pain medication after the surgery. The anesthesiologist will discuss this with you the morning of the surgery. You will get a prescription for pain medication to take at home before you leave the hospital.
Q. Will I need to take any medications after I donate a part of my liver?
A. You will not need any medications except for pain. If you develop a wound infection, you might need to take antibiotics.
Q. Will I have a normal life after surgery?
A. We expect that you will return to your normal activities within three months after your surgery, provided you do not experience any complications. We do not expect you to have long-term complications, but as this procedure is still relatively new, we cannot yet give you any statistics on the long-term follow-up of donors who have undergone this surgery.
Q. How soon can I have sex?
A. You will probably want to refrain from sexual intercourse for a couple of weeks until you have less discomfort and are feeling stronger. For the most part, this decision will be based on how you are feeling.
Q. If I want to start a family, how long should I wait after surgery to get pregnant?
A. There is no definite answer to this, but we recommend that you do not become pregnant for at least three to six months after surgery.
Q. When can I restart my birth control pills or hormone replacement therapy?
A. We advise you to wait for a minimum of three months after surgery.
Q. How long before my liver grows back to normal size?
A. The liver begins to regenerate almost immediately, with most of the regeneration occurring in the first two weeks after surgery. The expectation is that by eight weeks, your liver will be back to normal or near normal size.
Q. Would I be able to donate part of my liver again in the future to someone else?
A. No. Once you donate a portion of your liver, you cannot do so again.
Q. When will I be able to drive after my surgery?
A. We advise you not to drive for at least the first two to three weeks after the surgery. Before you decide to drive, you must be physically and mentally strong, with normal reflexes and not experiencing any abdominal pain or discomfort. Also, you should not be taking any narcotic medication such as Percocet or Tylenol with codeine, as these can affect your mental alertness.
Q. When can I begin to exercise?
A. As soon as you wake up from the anesthesia, you will begin “exercising.” You will need to take deep breaths and cough to make sure you are getting enough air into all the areas of your lungs. This will help prevent pneumonia. You will also begin to exercise the muscles of your legs by flexing and relaxing them periodically. You will be helped out of bed within 24 to 48 hours of your surgery and will begin walking.
We cannot stress enough how important walking is to your recovery. Each day, you should be pushing yourself a little bit more. By walking as soon as possible after your surgery, you will help to prevent such complications as blood clots, pneumonia and muscle wasting. You are encouraged to continue a program of daily walking when you go home. Remember, the goal is to be back to normal health and activity within two to three months.
Q. When can I lift weights, jog, swim, etc.?
A. You will need to avoid any heavy lifting for the first four weeks, until your abdomen has completely healed. You should not lift any weights greater than 10-15 lbs. After four weeks, if you are feeling well and are not having any complications, you may begin to return to your normal activities, such as swimming, jogging, aerobics, cycling, etc. Begin slowly and build up gradually. Be very cautious with abdominal exercises.
Q. When can I go on vacation or fly?
A. You should not plan any vacations or trips outside the U.S. for at least four weeks and preferably 8 to 12 weeks after your surgery. If you wish to return to your home state, you may be able to do so two to four weeks after the surgery, depending on how you feel and how you are recovering. Remember that if we have any concerns about possible complications, we will want you to return to Yale-New Haven Hospital for evaluation and treatment. It should not be a problem for you take trips or vacations after 8 to 12 weeks. 13.
Q. Once the transplant is scheduled, will it definitely happen?
A. A number of things might happen to delay or cancel the procedure. For example, a recipient’s condition might deteriorate to the point where his or her MELD score becomes too high for living donor transplant (MELD is the scoring system used to establish the patient’s position on the transplant waiting list). Or, the recipient may become too sick for a transplant. The recipient may develop an infection or some other condition that would need to be treated before the transplant could be performed. Finally, the recipient may be transplanted with a liver from a deceased donor, and not need a living donor.
Though it happens rarely, we may even need to postpone the transplant at very short notice (sometimes hours before). For instance, if we have a number of deceased donor transplants that same day, those transplants would take precedence over a living donor transplant. It is impossible to know when deceased donor organs will become available and when they do, they must be used within a short time. Or, if a recipient has liver cancer and we discover during the exploratory laparotomy that the cancer has spread, then we will not proceed with the transplant.
Q. Do I need to do any special preparation prior to surgery?
A. Once you have completed your evaluation and you decide to proceed, you will need to donate a unit of your blood within 7 to 42 days before your surgery. This blood will be stored in case you need a transfusion during surgery. We may also need to repeat some of your blood tests, if they were done more than 30 days before your surgery date. Do not take any aspirin, Advil or Motrin (non-steroidal) medication within seven days of your surgery. There will be a “final review” for you and your recipient and your immediate family two or three days before surgery. This will give you an opportunity to ask any remaining questions you may have.
Q. Do I need any special diet before surgery?
A. Yes. The day before the scheduled surgery, you will be on a clear liquid diet. You must stop drinking at midnight. If you regularly take any medications, we will instruct you about these when you come in for the final appointment before surgery.
Q. Will I need a bowel prep before surgery?
A. Yes. The evening before surgery you will need to give yourself an enema. This can be purchased at your local pharmacy in advance. A bowel prep is necessary to help decrease pain and constipation after surgery.
Q. Will I be admitted the night before surgery?
A. No. You and your recipient will be admitted to the hospital on the morning of the surgery. You will probably need to arrive at 6 a.m.
Q. What should I bring with me on the morning of the surgery?
A. Bring only minimal belongings, which can be given to your family when you go into the operating room. Because we already have your insurance information, there is no need to bring any documentation with you unless we specifically ask for it.
Q. How long will I be in the hospital?
A. The average hospital stay for donors is five to seven days after surgery.
Q. Will I be in the Intensive Care Unit after my surgery?
A. After your surgery, you will be taken to the Intensive Care Unit or the Recovery Room for close observation by the nursing and medical staff. You will remain in this area for two nights. Once we see that everything is stable and that you do not have any bleeding or other complications, you will be transferred to our transplant floor.
Q. Will I be in the same room as my recipient after the surgery?
A. No. You are intentionally separated from your recipient. We want you to focus on getting better and being comfortable. After you are transferred to the Transplant Unit, you may visit the recipient.
Q. How soon will I be able to eat and drink after my surgery?
A. As soon as your intestines start to work again after the surgery, you will be able to begin to drink and eat again. We will know it is safe you to begin taking sips of water when you are passing gas. If you do not have nausea or vomiting with the sips of water, you will be able to progress to clear fluids, a soft diet, and then a regular diet within a few days. Occasionally, some individuals do not return to normal eating habits this quickly. The less pain medication used and the sooner you begin walking, the faster the bowels return to normal and diet resumes.
Q. Will I have any tubes or drains in me after the surgery?
A. You will have intravenous (IV) lines in you during and after the surgery so we can give you fluids to keep you hydrated and also give you medicine. One of these lines may be used to administer your pain medication after the surgery. You will also have a catheter (drainage tube) in your bladder so we can monitor how your kidneys are working during and after the surgery. Having the catheter in your bladder also means that you will not need to get up to go to the bathroom immediately after your surgery. You may also have one or two small drainage tubes in your abdomen to drain any blood or bile that might ooze after the surgery. When you wake up from surgery you will have a nasogastric (NG) tube in your nose to your stomach. This tube will remain in until we hear bowel sounds, usually the next day. The other tubes and intravenous lines will be removed within two to four days.
Q. Will I get injections of pain medication after the surgery?
A. We use a variety of methods to give pain medication. Sometimes, the anesthesiologist inserts an epidural catheter, which permits numbing medication to be administered directly into the spinal cord to prevent pain. Or you may also have what is called PCA (Patient-Controlled Analgesia). With PCA, you have an intravenous line attached to a computer-controlled pump. You press a button whenever you need pain medication, and the medicine is immediately administered directly into your vein. It is important to realize that you cannot overdose with this system, as the computer controls the amount of medicine you can give yourself. Once you are eating normally, we will switch you to a pill for pain medication. You should always let your nurse know if you are not getting enough pain relief.
Q. When will my sutures or staples be removed?
A. You will be given an appointment to return to the outpatient office approximately 10 days after your surgery to have your incision checked and have any sutures or staples removed. Sometimes, however, the surgeons will instead use strips of special tape called “steri-strips,” which will fall off when the incision is healed.
Q. Will I need to come back to the hospital for check-ups?
A. This procedure is major surgery, and we need to monitor you very closely at first to make sure everything is okay. You must come back for a wound check 10 days after your surgery. You will need another checkup at three to four weeks to evaluate how you are feeling. We would also like to you return to the Transplant office at three months, six months and 12 months after surgery. We will draw blood at each of those visits and at 12 months you will have a CT scan or MRI to check your liver. You may need other appointments as well, depending on how you are feeling. You should continue to have an annual physical exam with blood work with your primary care physician after being a living liver donor.
Q. Must I remain close to the hospital after my surgery?
A. You should remain close to YNHH for at least two to three weeks after your surgery. You also need to be able to return here if you experience any problems during your recovery. If you are from out of town or out of state, you may stay at our nearby Transplant Living Center (866-YALE-TXP). We recommend that you have a relative or friend stay with you, especially immediately after you leave the hospital.
Q. Will I need a nurse to take care of me when I leave the hospital?
A. Although this is a very big operation and you will be extremely tired and weak, you most likely will not need any professional nursing care at home. You will need a friend or family member to do your food shopping, perhaps cook your meals for you, and be available should you run into any difficulties. It is also nice to have some company when you first come home from the hospital. You should have someone available to take you to and from the hospital for your check-up.
Q. Who can I call if I have any additional questions?
A. Call the Transplantation Center at 866-YALE-TXP, and ask for the Liver Transplant Coordinator for the Living Donor program.
To be Evaluated as a Potential Living Donor
Here is the sequence of steps to follow if you wish to explore the possibility of donating part of your liver to a patient close to you who needs a transplant.
Please Note: Your recipient MUST have completed an evaluation as a candidate for a liver transplant and must be placed on the liver transplant waiting list before a donor evaluation can begin.
- Confirm your blood type.
- Study carefully the materials explaining living donor liver transplantation.
- Contact the Living Donor Liver Transplant Coordinator directly at 866.YALE.TXP, and complete a brief health questionnaire. If multiple donors are available, the Transplant Team can help in selecting the most likely candidate. A recipient or family member cannot contact the Living Donor office on your behalf.
- The potential donor will be contacted by the Living Donor Coordinator and scheduled for an initial appointment with our Living Donor surgeon. After your meeting with the surgeon, we want you to think about everything that was said and decide if you want to proceed with donation.
- If you decide to proceed, the second phase of the evaluation includes appointments with your Donor Advocate hepatologist, social worker, psychiatrist and cardiologist. Evaluation tests include extensive blood tests, MRI, chest Xray, EKG, echocardiogram and possibly a stress test. We may at this time decide that additional tests or a liver biopsy are necessary.
- Within one to two weeks after you complete the second part of your evaluation, we will make a decision on your candidacy as a living donor.
- Once you have been cleared as a donor, you will need to allow at least two weeks to think through your decision before we proceed with surgery.
- If you decide to proceed after your “reflective time,” we will discuss the timing of the transplant with you and the recipient.
- In most cases, we expect eight weeks to elapse between the beginning of a living donor evaluation and establishment of a date for surgery. In rare circumstances, a much faster evaluation can be done, but the longer time frame is deliberately used to allow you, the donor, ample time to consider and reconsider your decision.
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