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What You Need To Know About Your Liver and The Transplant Process


By Bob Aronson

cartoonThe liver is an incredibly important organ and the only one in the human body that can regenerate itself.  It is second only in size to the skin (yes the skin is an organ) and has been described as boomerang shaped.  Virtually every nutrient we consume passes through the liver so it can be processed and turned into a different biochemical form for use by other organs.

Located just below the rib cage in the upper right side of your abdomen the liver has three main functions.  It helps in digestion makes proteins and helps eliminate toxic substances.the liver

The liver is the only organ in the body that can easily replace damaged cells, but if enough cells are lost, the liver may not be able to meet the needs of the body.

The liver is like a very complex factory.  Included in its many functions are:          http://www.medicinenet.com/liver_anatomy_and_function/images-quizzes/index.htm

  • Production of bile that is required in the digestion of food, in particular fats;
  • Storing of the extra glucose or sugar as glycogen, and then converting it back into glucose when the body needs it for energy;
  • Production of blood clotting factors;
  • Production of amino acids (the building blocks for making proteins), including those used to help fight infection;
  • The processing and storage of iron necessary for red blood cell production;
  • Manufacture of cholesterol and other chemicals required for fat transport;
  • Conversion of waste products of body metabolism into urea that is excreted in the urine; and
  • Metabolizing medications into their active ingredient in the body.
  • Cirrhosis is a term that describes permanent scarring of the liver. In cirrhosis, the normal liver cells are replaced by scar tissue that cannot perform any liver function.
  • Acute liver failure may or may not be reversible, meaning that on occasion, there is a treatable cause and the liver may be able to recover and resume its normal functions.

The Liver can be affected by any one of a number of diseases.  Click on the item of interest in the list below for a complete explanation.

The Liver Disease Information Center provides information on a variety of topics related to liver health and liver diseases

liver disease. http://www.liverfoundation.org/abouttheliver/info/

How does alcohol affect the liver? (From the American Liver Foundation)  http://www.liverfoundation.org/abouttheliver/info/alcohol/

Alcohol can damage or destroy liver cells.

liver disease stagesThe liver breaks down alcohol so it can be removed from your body. Your liver can become injured or seriously damaged if you drink more alcohol than it can process.

What are the different types of alcohol-related liver disease?

There are three main types of alcohol-related liver disease: alcoholic fatty liver disease, alcoholic hepatitis, and alcoholic cirrhosis.

Alcoholic fatty liver disease
Alcoholic fatty liver disease results from the deposition of fat in liver cells. It is the earliest stage of alcohol-related liver disease. There are usually no symptoms. If symptoms do occur, they may include fatigue, weakness, and discomfort localized to the right upper abdomen. Liver enzymes may be elevated, however tests of liver function are often normal. Many heavy drinkers have fatty liver disease. Alcoholic fatty liver disease may be reversible with abstinence of alcohol.

Alcoholic hepatitis
Alcoholic hepatitis is characterized by fat deposition in liver cells, inflammation and mild scarring of the liver. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain, fever and jaundice. Liver enzymes are elevated and tests of liver function may be abnormal. Up to 35 percent of heavy drinkers develop alcoholic hepatitis and of these 55% already have cirrhosis.

Alcoholic hepatitis can be mild or severe. Mild alcoholic hepatitis may be reversed with abstinence. Severe alcoholic hepatitis may occur suddenly and lead to serious complications including liver failure and death.

Alcoholic cirrhosis
Alcoholic cirrhosis, the most advanced type of alcohol induced liver injury is characterized by severe scarring and disruption of the normal structure of the liver — hard scar tissue replaces soft healthy tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis. Symptoms of cirrhosis may be similar to those of severe alcoholic hepatitis. Cirrhosis is the most advanced type of alcohol-related liver disease and is not reversed with abstinence. However, abstinence may improve the symptoms and signs of liver disease and prevent further damage

The Liver Transplant

Liver transplants are performed only for patients with end-stage liver disease for whom standard medical and surgical therapies have failed. Conditions that can lead to liver transplantation include: transplant(http://www.barnesjewish.org/conditions-leading-to-liver-transplant)

Liver transplants are the second most common transplants after kidneys.  They require that the blood type and body size of the donor match the person receiving the new organ. There are more  6,000 liver transplants are performed each year in the United States. The surgery usually takes between four and twelve hours and most patients can expect a hospital stay of up to three weeks following surgery. . .

Essential Information For The Transplant Patient

Most transplant centers function in pretty much the same manner, but Johns Hopkins Medical Center in Baltimore, Maryland offers one of the best summaries of what the transplant patient can expect.  http://www.hopkinsmedicine.org/healthlibrary/test_procedures/gastroenterology/liver_transplantation_procedure_92,P07698/

Risks of the procedure

As with any surgery, complications can occur. Some complications from liver transplantation may include, but are not limited to, the following:

  • Bleeding
  • Infection
  • Blockage of the blood vessels to the new liver
  • Leakage of bile or blockage of bile ducts
  • Initial lack of function of new liver

The new liver may not function for a brief time after the transplant. The new liver may also be rejected. Rejection is a normal reaction of the body to a foreign object or tissue. When a new liver is transplanted into a recipient’s body, the immune system reacts to what it perceives as a threat and attacks the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to survive in a new body, medications must be taken to trick the immune system into accepting the transplant and not attacking it as a foreign object.

Contraindications for liver transplantation include, but are not limited to, the following:

  • Current or recurring infection that cannot be treated effectively
  • Metastatic cancer. This is cancer that has spread from its primary location to one or more additional locations in the body.
  • Severe cardiac or other medical problems preventing the ability to tolerate the surgical procedure
  • Serious conditions other than liver disease that would not improve after transplantation
  • Noncompliance with treatment regimen
  • Alcohol consumption

There may be other risks depending on your specific medical condition. Be sure to discuss any concerns with your doctor prior to the procedure.

Before the procedure

In order to receive a liver from an organ donor who has died (cadaver), a recipient must be placed on a waiting list of the United Network for Organ Sharing (UNOS). Extensive testing must be done before an individual can be placed on the transplant list.

Because of the wide range of information necessary to determine eligibility for transplant, the evaluation process is carried out by a transplant team. The team includes a transplant surgeon, a transplant hepatologist (doctor specializing in the treatment of the liver), one or more transplant nurses, a social worker, and a psychiatrist or psychologist. Additional team members may include a dietitian, a chaplain, and/or an anesthesiologist.

Components of the transplant evaluation process include, but are not limited to, the following:

  • Psychological and social evaluation. Psychological and social issues involved in organ transplantation, such as stress, financial issues, and support by family and/or significant others are assessed. These issues can significantly impact the outcome of a transplant.
  • Blood tests. Blood tests are performed to help determine a good donor match, to assess your priority on the donor list, and to help improve the chances that the donor organ will not be rejected.
  • Diagnostic tests. Diagnostic tests may be performed to assess your liver as well as your overall health status. These tests may include X-rays, ultrasound procedures, liver biopsy, and dental examinations. Women may receive a Pap test, gynecology evaluation, and a mammogram.

The transplant team will consider all information from interviews, your medical history, physical examination, and diagnostic tests in determining your eligibility for liver transplantation.

Once you have been accepted as a transplant candidate, you will be placed on the UNOS list. Candidates in most urgent need of a transplant are given highest priority when a donor liver becomes available based on UNOS guidelines. When a donor organ becomes available, you will be notified and told to come to the hospital immediately.

If you are to receive a section of liver from a living family member (living-related transplant), the transplant may be performed at a planned time. The potential donor must have a compatible blood type and be in good health. A psychological test will be conducted to ensure the donor is comfortable with the decision.

The following steps will precede the transplant:

  • Your doctor will explain the procedure to you and offer you the opportunity to ask any questions about the procedure.
  • You will be asked to sign a consent form that gives your permission to do the surgery. Read the form carefully and ask questions if something is not clear.
  • For a planned living transplant, you should fast for eight hours before the operation, generally after midnight. In the case of a cadaver organ transplant, you should begin to fast once you are notified that a liver has become available.
  • You may receive a sedative prior to the procedure to help you relax.
  • Based on your medical condition, your doctor may request other specific preparation.

During the procedure

Liver transplantation requires a stay in a hospital. Procedures may vary depending on your condition and your doctor’s practices.

Generally, a liver transplant follows this process:

  • You will be asked to remove your clothing and given a gown to wear.
  • An intravenous (IV) line will be started in your arm or hand. Additional catheters will be inserted in your neck and wrist to monitor the status of your heart and blood pressure, as well as for obtaining blood samples. Alternate sites for the additional catheters include the subclavian (under the collarbone) area and the groin.
  • You will be positioned on the operating table, lying on your back.
  • If there is excessive hair at the surgical site, it may be clipped off.
  • A catheter will be inserted into your bladder to drain urine.
  • After you are sedated, the anesthesiologist will insert a tube into your lungs so that your breathing can be controlled with a ventilator. The anesthesiologist will continuously monitor your heart rate, blood pressure, breathing, and blood oxygen level during the surgery.
  • The skin over the surgical site will be cleansed with an antiseptic solution.
  • The doctor will make a slanting incision just under the ribs on both sides of the abdomen. The incision will extend straight up for a short distance over the breast bone.
  • The doctor will carefully separate the diseased liver from the surrounding organs and structures.
  • The attached arteries and veins will be clamped to stop blood flow into the diseased liver.
  • Depending on several factors, including the type of transplant being performed (whole liver versus a portion of liver), different surgical techniques may be used to remove the diseased liver and implant the donor liver or portion of the liver.
  • The diseased liver will be removed after it has been cut off from the blood vessels.
  • The doctor will visually inspect the donor liver or portion of liver prior to implanting it.
  • The donor liver will be attached to the blood vessels. Blood flow to the new liver will be established and then checked for bleeding at the suture lines.
  • The new liver will be connected to the bile ducts.
  • The incision will be closed with stitches or surgical staples.
  • A drain may be placed in the incision site to reduce swelling.
  • A sterile bandage or dressing will be applied.

After the procedure In the hospital

After the surgery you may be taken to the recovery room before being taken to the intensive care unit (ICU) to be closely monitored for several days. Alternately, you may be taken directly to the ICU from the operating room. You will be connected to monitors that will constantly display your EKG tracing, blood pressure, other pressure readings, breathing rate, and your oxygen level. Liver transplant surgery requires an in-hospital stay of seven to 14 days, or longer.recovery

You will most likely have a tube in your throat so that your breathing can be assisted with a ventilator until you are stable enough to breathe on your own. The breathing tube may remain in place for a few hours up to several days, depending on your situation.

You may have a thin plastic tube inserted through your nose into your stomach to remove air that you swallow. The tube will be removed when your bowels resume normal function. You will not be able to eat or drink until the tube is removed.

Blood samples will be taken frequently to monitor the status of the new liver, as well as other body functions, such as the kidneys, lungs, and blood system.

You may be on special IV drips to help your blood pressure and your heart and to control any problems with bleeding. As your condition stabilizes, these drips will be gradually weaned down and turned off as tolerated.

Once the breathing and stomach tubes have been removed and your condition has stabilized, you may start liquids to drink. Your diet may be gradually advanced to more solid foods as tolerated.

Your immunosuppression (antirejection) medications will be closely monitored to make sure you are receiving the optimum dose and the best combination of medications.

When your doctor feels you are ready, you will be moved from the ICU to a room on a regular nursing unit or transplant unit. Your recovery will continue to progress here. Your activity will be gradually increased as you get out of bed and walk around for longer periods of time. Your diet will be advanced to solid foods as tolerated.

Nurses, pharmacists, dietitians, physical therapists, and other members of the transplant team will teach you how to take care of yourself once you are discharged from the hospital.

At home

Once you are home, it will be important to keep the surgical area clean and dry. Your doctor will give you specific bathing instructions. The stitches or surgical staples will be removed during a follow-up office visit, if they were not removed before leaving the hospital.

You should not drive until your doctor tells you to. Other activity restrictions may apply.

Notify your doctor to report any of the following:

  • This may be a sign of rejection or infection.
  • Redness, swelling, or bleeding or other drainage from the incision site
  • Increase in pain around the incision site. This may be a sign of infection or rejection.
  • Vomiting and/or diarrhea

Your doctor may give you additional or alternate instructions after the procedure, depending on your particular situation.

What is done to prevent rejection?

To allow the transplanted liver to survive in a new body, you will be given medications for the rest of your rejectionlife to fight rejection. Each person may react differently to medications, and each transplant team has preferences for different medications.

New antirejection medications are continually being developed and approved. Doctors tailor medication regimes to meet the needs of each individual patient.

Usually several antirejection medications are given initially. The doses of these medications may change frequently, depending on your response. Because antirejection medications affect the immune system, people who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making you very susceptible to infection.

Some of the infections you will be especially susceptible to include oral yeast infection (thrush), herpes, and respiratory viruses. You should avoid contact with crowds and anyone who has an infection for the first few months after your surgery.

The following are the most common symptoms of rejection. However, each individual may experience symptoms differently. Symptoms may include, but are not limited to, the following:

  • Fever
  • A yellowing of the skin and eyes due to bile pigments in the blood.
  • Dark urine
  • Itching
  • Abdominal swelling or tenderness
  • Fatigue or irritability
  • Headache
  • Nausea

The symptoms of rejection may resemble other medical conditions or problems. Consult your transplant teaoncerns you have. Frequent visits to and contact with the transplant team are essential.

Organ transplants are expensive and the cost goes well beyond the surgery itself.  If you are told you need a transplant and are sent to a transplant center for evaluation you can bet one of the first questions you will be asked is, “Do you have the financial resources to pay for your transplant?”

According to the National Foundation for Transplants http://www.transplants.org/faq/how-much-does-transplant-cost the average cost of a liver transplant and first year expenses in the United States is $575,000.

The Mayo Clinic developed this helpful list of questions that will help you develop the answer to that question. http://www.mayoclinic.org/departments-centers/transplant-center/liver-transplant/choosing-mayo-clinic/costs-insurance-information

Insurance information

Before your transplant, it’s important that you work closely with your insurance company to understand your benefit plan. You’ll be responsible for any of your transplant and medical care costs not covered by your insurance company.costs

You may want to ask your insurance company several questions regarding your transplant expenses, including:

  • What is the specific coverage of my plan? What are my deductibles, coinsurance, copayments, lifetime maximum amount and annual maximum amounts for both medical care and transplant services?
  • Does my plan have a pre-existing or waiting period clause? If so, what is the time frame? Can this be waived?
  • Does my plan include pharmacy coverage? If so, will my plan cover my current medications and immunosuppressant medications?
  • Does my plan require any special approvals for evaluation or transplant? How long does the approval process take once submitted to insurance?
  • Does my plan cover my transportation and lodging expenses during my transplant care?
  • Does my current insurance require enrollment in Medicare when eligible?
  • Does my insurance follow Medicare Coordination of Benefits guidelines?
  • How will my current coverage change after enrolling in Medicare? Will my plan become a supplemental or secondary plan?

If your plan is a Medicare supplement, ask questions including:

  • Does my plan follow Medicare guidelines?
  • Does my plan cover Medicare Part A and B deductible and coinsurance?
  • Does my plan have a pre-existing or waiting period? If so, what is the time frame?
  • Does my plan offer an option for Medicare Part D coverage?

Other expenses

Please plan for other expenses that may occur related to your transplant, which may include follow-up medical appointments, long-term medications, caregiver expenses, travel, parking, lodging and other expenses.

Financial Aid

If you need an organ transplant, but don’t have the financial resources to pay for it you should first work with the transplant center social worker to see what is available. There are a number of resources for which you may qualify.  Just click on this link for the complete list and explanation of services.  http://www.transplantliving.org/before-the-transplant/financing-a-transplant/directory/

bob 2Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

Everything You Need to Know About Getting an Organ Transplant


One of the wonders of the information age is the amount of information that is available on almost any subject.  I am constantly on the alert for new, helpful information about organ donation and transplantation and usually expect to find what I need from sources like the Mayo Clinic, Johns Hopkins, Cleveland Clinic and a score of other highly credible medical organizations.  Sometimes, though, ones gets surprised as I was when I found this information on About dot com.  http://surgery.about.com/od/beforesurgery/a/ListedForTx.htm

How to Get on the Waiting List For an Organ Transplant

Evaluation For a New Organ

By Jennifer Heisler, RN, About.com Guide

Starting the Transplant Process

Your road to an organ transplant starts with the physician or specialist who is providing your care. If he or she determines that you are in organ failure or may soon be in organ failure, you will be referred to a transplant center. The transplant center may not be the closest center to you, as the organs transplanted at each center vary.

Once you have a referral, you will need to make an appointment for an evaluation. The initial appointment will probably include a physical examination and blood draws for a wide variety of lab studies. These blood tests will help determine how well your organs are functioning and your general state of health.

Once your organ function is determined, your transplant surgeon will be able to determine if testing to determine your suitability for an organ transplant should continue. At this point you may be told that you are currently too well for consideration, not a candidate or that testing will continue.

Additional Medical Testing Required for Transplant

If you are a candidate for an organ transplant, you will undergo further testing. If your organ failure happened quickly, is progressing quickly or is considered an emergency, the testing may occur in a matter of days rather than weeks.

Your testing will also evaluate your ability to tolerate surgery. For example, if you are seeking a liver transplant, you may still be tested for heart, kidney and lung function to make sure you are able to tolerate surgery and anesthesia.

You will be evaluated for the presence of cancer, as an active case is cause for exclusion from transplantation. There are exceptions, such as skin cancer, which would not prevent you from receiving a new organ.

If you are in need of a kidney transplant, your testing will include blood tests that look at your genetic makeup since it is a component of matching organs with recipients.

Psychological Evaluation Before Transplantation

Your evaluation as a potential transplant patient will include appointments with social workers, psychologists and financial counselors. You will also be evaluated for your ability to understand instructions and your treatment.

Patients who have untreated psychiatric or mental disorders may be disqualified for treatment if the disorder prevents the patient from caring for themselves. For example, a schizophrenic patient who is not taking medication and is having delusions would not be considered a good candidate for an organ transplant. Mental retardation is not an automatic exclusion from receiving a transplant.

The stress of waiting for a transplant can be difficult for families, and the social workers and psychologists will work to evaluate how well you and your loved ones will cope with the wait. It is essential that you are candid as part of the evaluation includes determining how best to provide you with the support you need.

Financial Counseling for Transplantation

The financial counselor will help determine if you can afford to pay for a transplant, as well as your ability to pay for the numerous and expensive medications that help keep your body from rejecting the organ after surgery.

Not being able to afford a transplant does not mean that you will not be considered for surgery. The social workers and financial specialists will help determine if you are eligible for Medicare, Medicaid or other assistance.

Evaluation of Addictive and Harmful Behaviors

If your disease is the result of addictive or abusive behaviors, such as cirrhosis caused by alcoholism, you will be expected to be free of such behaviors. Transplant centers vary on their policies regarding the length of time a patient must be drug-free to qualify for a transplant, but most will test for drugs regularly.

Social workers will help you seek counseling and support groups for your addictions, if needed. An inability to control addictive behaviors will exclude patients from being listed for a transplant.

Your Ability to Manage Your Health Before Transplant

The transplant center will be looking for indications that you are able to manage your health and that you care about maintaining your health whenever possible. For example, if you are waiting for a kidney transplant but you are not following your doctor’s instructions, you may not be considered a candidate. The post-transplant regime is rigorous and requires diligence; your ability to follow your current regimen will be considered an indication of your willingness to take care of yourself after surgery.

The Decision — National Waiting List or Not?

You will be notified if you have been approved for transplantation once the evaluation has been completed and the different members of the team have made a determination of your suitability. The decision is not made by any one person; the team as a whole decides if you will make a good candidate for a successful transplant.

If you are approved, you will be expected to maintain an ongoing schedule of appointments designed to keep you in the best possible health during your wait, and to monitor your organ function. For some organs, the level of organ function (or the extent of your organ failure) helps determine your place on the wait list, so recent lab results are essential.

Being listed for a transplant is a very exciting time, but it is essential to remember that most transplant recipients have an extended wait before their surgery. It is not uncommon to wait several years for a kidney transplant, for example.

If the transplant center declines to add you to the list of patients waiting for transplant, you have some options. At some centers, you can appeal the decision and attempt to have the team reconsider its decision. You can also be evaluated at a different transplant center that may have different criteria for selecting patients.

After Organ Transplant Surgery

The average recipient spends months or even years anticipating organ transplant surgery, waiting and hoping for the day that will provide a second chance at a healthy life.

Out of necessity patients must focus on dealing with their life-threatening illness and hoping for surgery rather than learning skills to help them cope after a transplant that may not happen. With the emphasis on maintaining heath and hope preoperatively, many patients are unprepared for the changes in their lives and health after the transplant surgery.

Coping with these changes requires support, diligence and a willingness to prioritize a healthy lifestyle and maintain a healthy organ.

Emotional Issues After An Organ Transplant

There are issues that are unique to organ transplantation that the average surgery patient does not experience. In the majority of cases, a patient who is waiting for an organ knows that for an organ to become available an appropriate donor must die.

There is an emotional struggle between maintaining hope for a transplant and dread, knowing that a stranger will die before that becomes possible. Transplant recipients often acknowledge that they feel survivor’s guilt, having benefitted from the death of another.

It is important for recipients to remember that family members of donors report feeling that being able to donate organs was the only positive thing to happen during a heartbreaking time. The correspondence they receive from organ recipients can help the feeling of total loss after a loved one dies.

Being able to establish a relationship with a donor family, even if by mail only, can bring a sense of peace. For the donor family, a part of their loved one lives on. Some families and recipients choose to meet after corresponding, forging a bond over their shared experience.

Addiction & Depression After A Transplant

The weeks and months immediately following surgery can be very stressful for an organ recipient, making it an especially difficult time to maintain sobriety for those who are battling addiction.

Alcohol, tobacco and drugs are routinely tested for when patients are waiting for transplant, as abstinence is a condition of being on the waiting list at most transplant centers, but once surgery takes place the temptation to return to old behaviors can be overwhelming.

It is essential for recipients to maintain their healthy habits, as these drugs can be toxic to the new organs. There are many 12 step programs available for patients battling addictions and their families, inpatient and outpatient treatment programs and support groups.

Smokers can discuss anti-smoking prescriptions with their surgeon and many other types of therapies for smoking cessation are available over the counter.

Depression after surgery is not isolated to people with unrealistic expectations, it is common with chronic illnesses and major surgeries. While many have a tendency to deny there is a problem, confronting depression and seeking treatment is essential to maintaining good health.

Patients who are depressed are more likely to return to addictive behaviors and less likely to take an active role in their recovery and long term health.

Living Related Donor Organ Transplant Issues

A minority of organ recipients have a liver segment or kidney donated by a living family member or friend, which presents entirely different issues than those of an anonymous donor. A living donor may have a significant period of recovery after surgery, with additional time spent recuperating at home.

While surgery bills are paid for by the recipient’s insurance, lost wages and pain and suffering are not, and may cause hard feelings among family members. Disability insurance may provide financial relief, but there may be issues after a donor is discharged regarding whose insurance pays for medications that are part of aftercare.

A feeling of “owing” the friend or relative who is a donor is not uncommon. There are also donors who have complications after surgery. There are instances of the “sick” family member having a transplant and being discharged from the hospital before the “well’ donor.

Some people also experience depression after donation, a serious low after the euphoria of being instrumental in saving a life. Surgical complications or psychological issues after donation may cause the recipient to feel guilty for having “caused” these problems.

Ideally, a conversation regarding all the issues of donation should happen prior to surgery, and should include the financial and emotional aspects of donation, in addition to the physical issues. The discussion should also include the expectations of everyone involved, and whether or not these expectations are realistic.

When this conversation is taking place after surgery, a frank discussion may be necessary to determine what is a realistic expectation and what is not. An organ donor may have expectations of the recipient that are beyond financial issues, but are equally important, regarding the recipient’s health and wellbeing.

A donor that gives a section of their liver to a relative who needed it after abusing alcohol may be very sensitive to seeing that person drinking eggnog at Christmas when it has never been an issue previously.

The donor has an emotional investment in the health of the recipient that has been changed, and abusing the organ may feel like a slap in the face. These issues must be discussed in an honest and open way, without judgment, to have a healthy ongoing relationship.

Concerns About Illness Returning After An Organ Transplant

Concerns about organ rejection or the need for another transplant are also common with those who have had transplant surgeries. After the long wait for surgery, the fear of a return to the waiting list and poor health is a natural concern.

Taking an active role in maintaining good health, following the instructions of physicians and being proactive about exercise and diet, helps recipients feel that they are in control of their health instead of being at the mercy of their bodies.

Returning to Work After an Organ Transplant

There are issues that are not unique to transplant recipients yet still must be dealt with after surgery. Health insurance and the ability to pay for anti-rejection medications is an issue, especially when the patient was too sick to work prior to surgery. Financial difficulties are common in people with chronic illnesses, and transplant recipients are no exception.

If returning to work is feasible, it may be essential to the financial survival of the entire family, especially if the patient was the primary source of income. Obtaining, or even retaining, health insurance is a priority with the high cost of prescription medications and doctor visits.

For patients who are not well enough to return to work, it is essential that resources be found to assist with the costs of care. The transplant center should be able to refer any patient in need to sources of assistance, whether it be from the social services, low cost drug programs or sliding scale fees.

Pregnancy after Organ Transplantation

Younger female patients who are able to return to a full and active life may have concerns about pregnancy, their ability to become pregnant and the effect anti-rejection may have on the unborn child.

In some cases, the surgeon may recommend against conceiving as the body may not tolerate the extra stress caused by pregnancy and childbirth. In these cases, patients may benefit from a support group dedicated to infertility or a transplant support group.

For women who have a physician’s approval to conceive, discussions with both the patient’s transplant surgeon and potential obstetrician may answer questions and alleviate any concerns.

Transplant surgeons are an excellent source of referrals to an obstetrician with experience caring for pregnant organ recipients.

Pediatric Organ Transplant Recipients

Pediatric transplant recipients, or patients under the age of 18, often present a unique set of problems that adult recipients do not. Parents indicate that after coming close to losing a child to illness, it is difficult to set limits and establish boundaries with their behaviors.

Siblings may feel neglected and begin to act out when an ill child requires more time and care, demanding the attention of their parents.

After a successful transplant a child may require more limits than before and become difficult to manage when they do not understand these new rules. Friends and relatives who do not understand the rules may not enforce them when babysitting, causing difficulties and friction between the adults.

Establishing a routine and rules that are adhered to regardless of the caregiver can alleviate the conflict between the adults and help to set a consistent pattern for the child.

There are books and support groups available for the parents of sick, or formerly sick children, to help with the issues that come with parenting a chronically or critically ill child. Most emphasize that parents need to send the same message by acting as a team and enforcing the rules equally. Parents cannot undermine each other’s authority by failing to discipline bad behavior or disagreeing about punishment and failing to act.

Reestablishing Relationships After an Organ Transplant

Relationships can be strained by long term illnesses, but over time families learn to cope with a loved one who is desperately ill. Family members and friends become accustomed to stepping in and providing care and support to the patient, but often struggle when the situation is rapidly reversed.

A wife who has become accustomed to helping her husband take baths and providing meals can feel completely elated, but helpless, when her spouse is suddenly doing yard work.

The patient can be frustrated when they are feeling like their old self yet their family continues to try to do everything for them. Children who are accustomed to going to their father for help with homework or permission may inadvertently neglect to give mom the same courtesy when she is ready to take a more active role in parenting.

The amount of assistance needed should be determined by the way the recipient is feeling, not on established routines from before the transplant surgery. Too much too soon is not a good thing and can lengthen recovery, but independence should be encouraged whenever possible.

The situation is not unlike a teenager who wants independence and a parent who wants their child to be safe, struggling to find a happy medium that they can both live with.

Expectations After Organ Transplantation

While good health can seem like a miracle after years of illness, transplant surgery is not a cure for everything. Financial problems do not disappear after surgery, nor do addictions or marital problems.

Transplant surgery is a cure for some patients, but unrealistic expectations can leave a recipient feeling depressed and overwhelmed. A healthy organ does not cause immunity to the normal problems that people face every day; it provides a chance to face the challenges of life as a healthy person.

Physical Changes After an Organ Transplant

There are physical changes that transplant patients face after surgery that go beyond the immediate recovery period. Many patients find themselves dealing with weight gain and fluid retention, a normal reaction to the anti-rejection medications necessary after transplant.

Along with a rounder face, these meds can cause mood swings and emotional changes that are difficult to predict and harder to deal with. The symptoms typically diminish once the proper dosage is determined, but being aware that this is a normal part of therapy helps patients tolerate the effects in the short term.

Support Groups & Volunteerism After Organ Transplantation

Because of the unique nature of transplantation, many patients are drawn to others in the same circumstances. Support groups are an excellent way to find others who have had the same experiences and challenges that are unique to organ recipients. Groups are available nationally, with online meetings and groups local to transplant centers for adults and pediatric patients.

There are also websites devoted to the transplant community, allowing patients and families to discuss all aspects of donation and transplantation.

Many families of recipients and donors find volunteering for organ procurement organizations and transplant services to be rewarding and an excellent way to stay involved in the transplant community.

The added benefit of volunteering is that most volunteers have a personal connection to transplantation and are happy to share their experiences. There are volunteer groups for mothers of donors, for families of recipients and a variety of other people affected by donation.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,600 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our newest video, “Dawn Anita, The Gift of LIfe” on YouTube either under that title or this link https://www.youtube.com/watch?v=eYFFJoHJwHsvideo.  This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 Espanol

Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook cerca de 2.600 miembros de la Iniciativa de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.Por favor ver nuestro nuevo video, “Dawn Anita, El don de la vida” en YouTube ya sea en virtud de dicho título o https://www.youtube.com/watch?v=eYFFJoHJwHsvideo este enlace. Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Yes, Brain Death Means You Are Really Dead!


Are brain dead patients really dead?  That’s the question many people are asking because of stories circulated by irresponsible journalists, TV shows and movies who seek sensational plots and people who just refuse to acknowledge the facts.

The simple answer to this question is, “Absolutely.  If you’ve been declared brain dead by a qualified team of experts in a hospital setting then you are dead.  The New York Organ Donor Network put it best, “There are more tests to establish death done on potential organ donors than there are on people who are not donors.”

There have been several stories circulated about how “Brain Dead” people have recovered and gone on to live normal lives. I have spent the last month looking into these stories and have determined that while one or two are unexplainable primarily because families won’t release medical information all the rest were simply not true.

I have interviewed two world famous neurologists who have written extensively about brain death and who were part of the process that developed the rules for making that determination. The protocols for determining brain death are more rigorous than for proclaiming death under normal circumstances. Every single neurologist, physician or other medical expert I’ve talked with has said the same thing, “No one recovers from brain death!” New protocols were established in 2010 to make the testing even more rigorous and they require the physician who is declaring brain death to fill out a check list to be sure every step has been completed. Again, this process is more rigorous than what is used to declare death under normal conditions.

Here’s the checklist that must be followed in order to declare brain death:
Cause of Brain Death:
________________________________________________________________
Date of Exam: ____________________________
Time of Exam: ____________________________
A. Absence of Confounding Factors: RESULTS
1. Systolic blood pressure > 90 mmHg ______________________
2. Core temperature > 36˚C ______________________
3. Negative for drug intoxication or poisoning _______________________
4. Toxicology results ______________________
5. Negative for neuromuscular blocking agents ______________________
B. Cranial Nerve Reflexes and Responses:
1. No spontaneous muscular movements ______________________
2. Pupils lightfixed
_______________________
3. Absent corneal reflexes ______________________
4. Unresponsiveness to intensely painful ______________________
stimuli, e.g. supraorbital pressure
5. Absent response to upper and lower ______________________
airway stimulations, e.g. pharyngeal and
endotracheal suctioning
6. Absent ocular response to head turning ______________________
(no eye movement)
7. Absent ocular response to irrigation of the ears ______________________
with 100 mls. of ice water (no eye movement)
8. Apnea PaCo2>60 mmHg ______________________
a. PaCo2 at end of apnea test
b. PaO2 at end of apnea test
C. Medical Record Documentation of the above Examination
D. Comments
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
________________________________
Certification of Death
Having considered the above findings, we hereby certify the death of:
_____________________________________________________________________________
Physician Signature Printed Name Date/Time


There will always be naysayers and people who “know of people who recovered” but I am satisfied after considerable research that when brain death is declared it is final.

Brain death is never declared by anyone with any connection to organ recovery and transplantation. The transplant team is not even aware of the patient until after brain death has been declared. The physician who declares brain death is independent of the recovery and transplantation team. Physicians who attend to patients on a regular basis are sworn to and legally committed to do everything possible to save your life. They are not part of the transplant team either and in many cases the hospitals where people are declared brain dead don’t even have transplant teams because they are not transplant centers.

To add to theevidence I have offered is this information from Stacey Gelowitz  Renal Transplant Coordinator at Alberta Health Services Edmonton, Canada Area Hospital & Health Care.  While she is in Canada the American and Canadian processes for declaring brain death are virtually identical.  Here’s what she wrote:

“At our center, we define neurological death by two criteria: irreversible loss of the capability for consciousness AND irreversible loss of all brainstem functions (including breathing). The protocol we follow for adult NDD is as follows:
Done twice by 2 physicians independently, who are not associated with transplantation
(1) Deep unresponsive coma with known cause
(2) Absence of confounding factors (eg. alcohol, tricyclic antidepressants)
(3) Temp > 34 degrees C
(4) No brainstem reflexes
a. No motor responses except spinal reflexes
b. No cough
c. No gag
d. No corneal responses bilaterally
e. No vestibulo-ocular responses bilaterally
f. No oculocephalic reflex (Doll’s eyes test; contraindicated in spinal injury)
g. No pupillary response to light bilaterally (pupils 6mm)
h. Apnea test, pH < 7.28 and PaCO2 > 20mmHg above pre-apnea test level
(5) If pt doesn’t meet all above criteria, do ancillary tests to show absence of intracranial blood flow:
a. Radionuclide cerebral blood flow study
b. Cerebral angiography
It can be hard for families to comprehend that their loved one is dead because the heart continues to beat spontaneously and the person is supported by machines so they look asleep. Important to note is that…
* No brain function remains (in contrast to coma/vegetative state).

* Heart continues to beat because of mechanical support stabilizing body, e.g. ventilators. Remember: Sinus rhythm is controlled by cells within the heart (SA/AV nodes), so as long as the heart is being perfused adequately (getting O2 via blood), it is happy to continue beating. Medulla oblongata in brain controls rate and strength of beat, but not basic rhythm).

* Blood still flowing to body organs (heart, lungs, liver, kidneys, pancreas) allowing transplantation if donor family consents, the organs are functioning adequately, and the potential donor has no serious health concerns

It is VERY IMPORTANT that the donor does not have any factors that confound the diagnosis of brain death. I think it is in these circumstances that brain death is (very rarely) wrongly diagnosed. A great website that you can refer to that touches on these ideas: http://www.braindeath.org/clinical.htm. It goes through different confounding factors and why physiologically in their presence brain death cannot be declared.

I have not seen any reports where pts recover from ‘brain death’ and it was not due to one of these confounding factors. We have gotten much better as a medical community at recognizing the suppressive effects of this list and know now not to declare brain death in the their presence. I think where patients extremely rarely slip through that can lead to wrong diagnosis of brain death is in the following two circumstances: (1) pts are on an unknown substance that is not tested for on toxicology panels and suppresses brain stem reflexes. Or, (2) a pt receives a drug in hospital (eg sedative to stop seizures or allow intubation) and the pt metabolizes the drug extremely slowly. The latter example (slow drug metabolism) is more applicable to children/babies rather than adults, but can happen in both (here is a case study from our center describing just that: http://www.ncbi.nlm.nih.gov/pubmed/19818943). As a result, the time in which brain death is declared was extended.

People need to understand that these instances are incredibly rare. If there is any doubt that one of these confounding factors is contributing to a wrong diagnosis of brain death, another tox screen or temp etc can be done to rule out such factors. Take a look at the cases people are presenting on reversible brain death. I would bet that all fall under what is discussed above. That said, some people will still stick to their guns and not believe you no matter how much info is provided, and that’s okay too”

If anyone needs more information that I have provided here I suggest you contact a neurologist at your nearest transplant center and ask him or her.  If you still doubt the process then perhaps you should not be a donor.

 Bob Aronson is a 2007 heart transplant recipient, the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of most of these donation/transplantation blogs on Bob’s Newheart.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

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