Category Archives: The Donation/transplantation process

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.

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Transplants — With An Emphasis on Recovery (by organ)


The organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  The entire process of organ transplantation is traumatic, from the time you are diagnosed  through the evaluation process, your time on the waiting list and finally recovery from the surgery.   If you are told you are going to need an organ transplant you are also being told that your life is about to change dramatically.

THE DIAGNOSIS

When you are diagnosed as needing a transplant you are being told that there are no good recovery alternatives for your disease.  It is likely that most of them have been tried.  While the physician is unlikely to tell you that your days are numbered you will probably hear that you that you have an end-stage disease.  That’s Dr. talk for, “You are dying.”  Getting that news is a traumatic event and you may need to discuss it with someone or even get professional help.

In order for your medical team to determine if you need a transplant you will have to undergo a thorough physical and mental evaluation.  Before they do that, though, there is a critical questions that must be answered,  “Do you have the financial resources to pay for a transplant should they find that you need one?”  If you cannot answer that question affirmatively a hospital social worker might be able to help but your chances of getting a transplant will be delayed until that single question gets a positive answer.  Once answered, though, the evaluation process begins and you will embark on an unprecedented medical voyage.   Among other things they have to determine  that you are a good surgical risk.

In addition to assessing  your physical condition, the team will consider  your attitude and psychological state among other factors. Donated organs are a rare commodity, so doctors don’t want to proceed unless they are sure that a patient is physically and mentally prepared for both the procedure and for life following it.  Your transplant team will also want to ensure that you have a competent caregiver,  someone you can depend on to watch over your recovery.  This is a key element of the process, you simply must be able to show that you have a caregiver who will make a significant investment of time as you regain your strength so you can return to a “normal” life. 

And…a caution if you smoke or are addicted to either drugs or alcohol chances are you will be told you must quit or there will be no transplant.  Generally you have to show that you have abstained from the two for at least six months.   Again, organs are precious and there aren’t very many available so medical facilities want transplant candidates that can prove they will take good care of them.

When the tests are complete and show clear medical evidence that you need an organ transplant, your physician will present your case to the medical center transplant committee.  If they approve, you will be added to the national transplant list at the United Network for Organ sharing (UNOS).  Then the wait begins and that, too, is traumatic.  Some people never get an organ, others wait a long time and some, like me are luckier and have a short wait.  Mine was only thirteen days but it took twelve years after my diagnosis before I was sick enough to get on the list.

THE SURGERY

Once the transplant committee approves you for the procedure you will be placed on the national transplant list and then you wait…you wait for “THE CALL.”    When it comes  you will be asked to get to your medical center rather quickly where they likely will perform additional tests in preparation for the surgery.  Prep includes giving you something that will “relax” you.  In reality it will knock you out.

You will awaken in intensive care, surrounded by beeping, chirping monitors, IV bags hanging from chrome stands, electrodes attached to your body and perhaps a ventilator.  Awakening from the surgery can be scary, because you may not be fully aware of what happened or where you are, and because of the ventilator you will be unable to talk. Most often they remove the “vent” as soon as possible.  In my case it was gone when I awakened.

Usually the medical staff will try to get you on your feet and moving around as soon as possible but depending on the transplant and your condition hospital stays can range from a week or so to a much longer period of time.  Then there is the recovery process and having gone through it this blogger strongly advises you to do everything your physicians suggest because that’s what will keep you alive.  

As I mentioned earlier, the organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  Recovery from these surgeries is sometimes difficult and for a while following surgery you will make many return trips to see your coordinator and physician.

THE RECOVERY

Critical Information You Need To know

Below I have listed the recovery process for all six of the organ transplants I listed earlier.  I chose to use a different transplant center for each organ to show that while centers may differ a little in the recovery process the bottom line is always the same and that is to ensure that the patient has a sound recovery and can then lead a healthy and satisfying life.  

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better — and you might even feel good enough to add some new activities. A daily exercise program will continue to improve your health and help you maintain a positive attitude.

You will not injure yourself or your new kidney if you follow some of these general guidelines:

  • Avoid lifting heavy objects and strenuous physical work for at least six to eight weeks following surgery. It is important that you also do not lift anything heavier than 20 pounds for two to three months, and nothing heavier than 40 pounds for four to six months from the date of your surgery.
  • Avoid driving for at least six weeks following surgery. Plan ahead so a friend or family member can help out during this time. When you are in a moving vehicle, always use your seat belt.
  • Exercise is encouraged, and we recommend beginning with stretching exercises and walking. Other excellent exercises include jogging, hiking, bicycling, tennis, golf, swimming, and aerobics. All of these can help you regain your strength and may be started gradually after your incision has healed.
  • As a general rule, rough contact sports should be avoided since they might cause injury to your transplanted kidney. If you have doubts about any activity, please ask the Transplant Team.

When will I be able to return to work?

Many kidney transplant patients are able to return to work within a few months following a successful surgery. However, various aspects of the recovery process can effect the timing of your return.

You will need to discuss returning to your job with the Transplant Team. When the time approaches, a “return to work” letter will provided. This will let your employer know when you may begin working and what limitations, if any, you have.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let the Transplant Team know when you plan to go and provide a phone number where you can be reached. By remembering these traveling tips, your vacation will be worry free:

  • Always take all of your medicine with you and make sure you have enough medicine to last throughout your trip.
  • If you are traveling by plane, carry your medicine with you. Never check them with your luggage.
  • Make sure you have your Transplant Center’s phone number.
  • Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to your Transplant office.

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

Because I got a heart transplant at the Mayo Clinic in Jacksonville Florida in 2007 it is the one with which I am most familiar.  I was in the hospital for 9 days and experienced little discomfort other than feeling weak.

What you can expect

During the procedure
Heart transplant surgery usually takes about four hours — longer if you’ve had previous heart surgeries or if there are complications during the procedure. The surgeon will open your chest and connect you to a heart-lung machine to keep oxygen-rich blood flowing throughout your body. The diseased heart is removed, and the donor heart is sewn into place. The new heart often starts beating when blood flow is restored. Sometimes an electric shock is needed to make the donor heart beat properly.

You’ll be in pain after the surgery, which will be treated with medications. You’ll also have a ventilator to help you breathe and tubes in your chest to drain fluids from around your lungs and heart.

After the procedure
After you’ve had surgery to place your donor heart, you’ll likely remain in the hospital for a week or two, and then you’ll be closely monitored at your outpatient transplant center for about three months. While at the transplant center, you’ll have regular tests on your donor heart, including blood work, echocardiograms, electrocardiograms and heart biopsies.

There are also several long-term adjustments you’ll need to make after you’ve had your heart transplant. These include:

  • Taking immunosuppressants. These medications decrease the activity of your immune system to prevent it from attacking your donated heart. Because your immune system will most likely never get used to the new organ, you’ll take some of these medications for the rest of your life.

These medications may cause noticeable side effects. With taking some post-transplant drugs, such as corticosteroids, your face may become round and full, and you may gain weight, develop acne or facial hair, or experience stomach problems. Some of the effects are more noticeable when you first start the drug regimen, but decrease in severity later on.

Because immunosuppressants make your body more vulnerable to infection, your doctor may also prescribe antibacterial, antiviral and antifungal medications. Some drugs could worsen — or raise your risk of developing — conditions such as high blood pressure, high cholesterol, cancer or diabetes. Over time as the risk of rejection is reduced, the doses and number of anti-rejection drugs can be reduced, but you will need some immunosuppressant medications indefinitely.

  • Managing medications and therapies. After a heart transplant, taking all your medications as your doctor instructs is important. It’s a good idea to set up a daily routine for taking your medications so that you won’t forget. Keep a list of all your medications with you at all times in case you need emergency medical attention, and tell all your doctors each time you’re prescribed a new medicine.
  • Cardiac rehabilitation. After your transplant, you may find it difficult to adjust to new lifestyle changes, such as diet and exercise. Cardiac rehabilitation programs can help you adjust to these changes so that you can regain your strength and improve your quality of life.
  • Emotional support. Your new medical therapies and the stress of having a heart transplant may make you feel overwhelmed. Many people who have had a heart transplant feel this way. Talk to your doctor if you’re feeling stressed or overwhelmed. Transplant centers often have support groups and other resources to help you manage your condition.

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

Use these patient resources to understand steps you need to take after your lung transplant procedure at Duke.  Click on the links for full details.

Infections in a transplant patient can be quite serious, even life-threatening. Good hand washing, along with a few other practices will help prevent infection.

After lung transplant, your health will be constantly monitored to ensure that your lungs are healthy and not being rejected .

Learn what symptoms may signal infection and find out what steps to take to maintain your health and prevent infection.

After transplant, your body is more susceptible to infection. Learn how to avoid and manage common infections.

Rejection of your transplanted lung(s) can occur at any time following your surgery. Discover steps to take to avoid rejection or ways to manage your health if you do experience rejection of your new lungs.

Learn what to expect in regards to pulmonary preparation and rehabilitation before and after lung transplant.

Diet and nutrition are very important aspects of everyday care after a lung transplant. Find guidelines to keep you healthy after transplant.

Sexual activity doesn’t have to be avoided after lung transplant. Following a few simple guidelines will ensure that you stay healthy while enjoying sex.

When patients show signs that their new lungs are being rejected, we have a number of ways to combat that rejection including steroids, RATG, and Campath.

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

You will be encouraged to get out of bed as soon as possible– usually the first or second day after surgery. This is an important way to prevent pneumonia. We will encourage you to walk around your room and down the hall at least three times a day. Walking increases your blood circulation, helps relieve gas pains, and helps maintain your muscle tone.

Each morning, we will draw blood to follow your progress and adjust your daily medicines. The most important blood tests to measure your kidney function are B.U.N. and CREATININE.

Another way to watch your new kidney’s progress is to accurately measure how much fluid you drink each day and how much urine you put out. At first the nurses will measure this for you. Eventually you will be taught to do this for yourself.

You will be weighed daily before breakfast. It is important to weigh at the same time each day on the same scales with the same clothes on. This is a habit you’ll need to continue after you’re sent home. Weight gain can be a sign of rejection of your new kidney.

Once you and your nurse feel you are able to care for yourself outside the hospital you will be sent home. If you live out of town you may want to stay at the Guest House Inn near Vanderbilt for a short period of time after discharge. During this time you will be coming back to Vanderbilt for outpatient evaluation two to three times per week.

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

After surgery, you will go directly to the intensive care unit (ICU), usually for one or two days. Immediately after surgery, a breathing tube will be inserted to help you breathe. In most cases the tube can be removed within 24 hours after surgery. Many monitoring lines also will be attached; these, too, will be removed as you become more stable. When you are ready to leave the ICU, you will be cared for on the 14th floor of the hospital if you’re an adult. Children are cared for on the sixth or seventh floor. Everyone recuperates from liver transplantation differently. Depending on your condition, you will be hospitalized for two to eight weeks following the transplant.

After the Hospital

After you are discharged from the hospital, you will be seen in the liver transplant clinic at least once a week for the first month. As you improve, you will be seen less often; eventually, you will be seen once a year.

If you are not from the San Francisco area, you probably will need to stay close by for the first month after discharge. After that, your doctor or a specialist near your home will provide follow-up care. Laboratory blood tests are obtained twice a week following transplantation. Gradually, the frequency of blood tests will be reduced.

You will be notified about any adjustments in your medications. Complications can occur with any surgery. Patients undergoing organ transplantation may face additional complications. The life-threatening disease that created the need for your transplant may affect the functioning of other body systems. Other risks, such as rejection, also may occur.

Some possible transplant complications and medication side effects include:

  • Hemorrhage — One function of the liver is to manufacture clotting factors. When a liver fails, the ability to produce clotting factors is impaired. To correct this problem, you will receive blood products before and after surgery. It is expected that your new liver will start working very quickly to help prevent any excessive bleeding, but it is possible that you may be returned to surgery to control the bleeding, particularly if it occurs within the first 48 hours after transplant.
  • Thrombosis — This is a serious complication that may require a second transplant. If a blood clot forms in a vessel leading to or from your liver, this may injure your new liver. You will receive special anticoagulation medication to prevent thrombosis.
  • Rejection — Your body’s defense system, the immune system, protects you from invading organisms. Unfortunately, it also views your new liver as foreign and will try to destroy it in an attempt to protect you. This is known as rejection. To prevent this from occurring, you will be given special immunosuppressive medication that must be taken for the rest of your life. Rejection can be diagnosed early by performing weekly liver biopsies during the first few weeks after liver transplant. Although rejection is common, with early diagnosis and treatment the situation can be controlled in more than 95 percent of cases.
  • Recurrent disease — Many liver diseases may come back after your transplant. Hepatitis C is the most common disease that can reoccur following a liver transplant. Your doctors will discuss this further with you.

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

After your small bowel transplantation, there are two challenges. First, you must manage the pain and recover. Second, you must learn to manage living and eating with a transplanted small bowel.

Will I be in pain?

Immediately following surgery, you will experience pain. We will do everything we can to make you as comfortable as possible. Most transplant patients have a significant reduction in pain several weeks after surgery. Some people continue to have some discomfort for a longer time.

Where will I spend my time in the hospital?

Immediately after surgery, you will be transferred to the intensive care unit. You will spend several days there as the Transplant Team monitors you very carefully.

After your stay in the intensive care unit, you will be transferred to the General Transplant Unit, where you will be instructed on how to assume responsibility for your everyday care. You will be encouraged to get out of bed at least three times a day and walk around your room and the halls. This increases your circulation and aids in healing.

What are the possible risks and complications?

You team is watching for the following possible complications:

  • Increased ostomy output
  • Fever
  • Nausea and/or vomiting
  • Blood in stools/ostomy output
  • Change in appetite

Please do not be scared or anxious about possible complications. Our team has many solutions for possible complications. All transplants carry risk and we will do everything we can to minimize those risks.

How long will it take to know if the new small bowel is working?

There may be a delay in the function of your transplanted small bowel. This may increase the length of your stay in the hospital as well as the risk of complications. There is also the possibility your transplanted small bowel will not function. You would be relisted in the highest priority category allowed.

What about the possible risk of infection?

Infection is always a concern following any major surgery. The Transplant Team will monitor you for signs and symptoms of an infection.

How long before I can leave the hospital?

You must remain in the local area (within two to three hours of Washington, DC) for four to six weeks post discharge for monitoring

While the information you just consumed is general in nature you will likely find that with a few modifications it is the process most transplant centers will follow.  If you have more specific information needs you should call your transplant coordinator, social worker or physician.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 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 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 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.

Donation to Transplantation — How it Works


It is only fitting that on the eve of the fourth anniversary of my heart transplant that blog 100 on this site addresses  the donation/transplantation process.   My undying thanks to my donor, his family and my caregiver wife for giving me these extra years.  Bob Aronson

Joel Newman is the Assistant Director of Communications for the United Network for Organ Sharing (UNOS).  UNOS coordinates all organ transplants in the United states and is located in Richmond, Virginia.  In response to my request for a guest blog on how the donation/transplantation system works, Joel wrote the following.  Our sincere thanks to him and all the dedicated people at UNOS for their life saving work and for allowing us to use them as a resource.

How It Works

By Joel Newman, UNOS

Since the first successful organ transplant in 1954, more than 500,000 transplants have been performed in the United States.  About 250,000 transplant recipients are alive today, and most enjoy a greatly enhanced quality of life as a result of this life-giving therapy.

Under federal contract, UNOS (United Network for Organ Sharing) maintains an extensive national transplant network to assist medical professionals in the recovery and allocation of donated organs.  This network is called the Organ Procurement and Transplantation Network (OPTN).

This is a brief overview of the processes involved in listing transplant candidates, organ donation and organ allocation.  We at UNOS are glad to address more specific questions.

 

Transplant Evaluation and Listing

To be considered for a transplant, a person approaching end-stage organ failure must be evaluated at one of roughly 250 transplant hospitals nationwide.  A transplant program’s medical team will address issues such as:

  • Will a transplant effectively treat his or her disease?
  • Does this person have other medical conditions that would complicate his or her care?
  • Can this person participate in his or her own care by taking medications on time, following medical advice, keeping appointments, etc.?  Does he or she have family or caregiver support to assist if needed?
  • Does this person qualify for insurance for transplant costs?  If not, can he or she raise funds to defray expenses?

The transplant team makes individual decisions according to its medical judgment.  If the program agrees to accept the person as a transplant candidate, it will submit a set of basic data to the OPTN.  The OPTN maintains a highly secure, continuously operated computer database to compare medical and logistical information about transplant candidates at hospitals with that of available organs from deceased donors.

An issue sometimes raised is whether a person’s past history of substance abuse, non-compliance with medical care or other self-destructive behavior may count against the possibility of listing.  While this remains a medical judgment of the transplant team, their emphasis is not on past behavior but current and likely future status.  If the team is reasonably assured that the person has ended harmful behavior and is not likely to resume that behavior once transplanted, they would be more likely to list the person as a transplant candidate.  UNOS is not involved in any program’s decision to list a transplant candidate or remove a candidate once listed.

Organ Donation and Recovery

Organ transplantation depends entirely upon the generosity of one human being to help others through the gift of organ donation.  While this gift may involve a living donor, we will focus here on donation from those who have recently died in a hospital and who meet criteria for donation.

An organ procurement organization (often called an OPO) is responsible for several key functions in the donation process, including:

  • identifying potential donors
  • documenting donation consent
  • collecting key medical history and lab test results to assess organ function and risk of any diseases that might be transmitted to recipients
  • entering donor information and organs available for matching into the OPTN database
  • assuming a transplant center accepts the organ offer, arranging for logistics of organ recovery, preservation and transportation

Most deceased organ donors in the U.S. encounter brain death (a complete and irreversible loss of brain function, determined by physicians not involved in the donation process).  For such potential donors, respiration and circulation can be maintained artificially for some time (commonly 24 to 48 hours) after brain death has been pronounced.

In other instances, donation may be possible for some people who die in a hospital setting from cardiorespiratory failure.  The person’s treating medical team (in no way involved with organ donation) must conclude that he or she cannot survive but will die of cardiac failure instead of brain death.  The next of kin must agree that death is imminent and that they will agree to end supportive care.  Only then, if the individual meets other criteria for donation, would donation be considered.

Surgeons with specific training and experience remove the organs to be transplanted.  Each organ is packaged in sterile conditions and carefully labeled with a unique identification number to be matched with the recipient when it arrives at the transplant hospital.  The organ cannot be frozen, as this would cause permanent damage to the blood vessels supplying it.  It is preserved in a series of sterile containers that are then surrounded by a solution of wet ice.

Transportation arrangements for deceased donor organs will differ according to the type of organ, the circumstances of the donation, and the distance between donor and recipient hospital.  If they are to be used within a local area, ground transportation (ambulance or chartered vehicle) may be used.  Hearts, lungs and livers, commonly used within a few hundred miles of the donor location, often travel by charter air flight along with a team from the receiving transplant center.  Kidneys have the longest preservation time (commonly up to 36 hours from recovery).  If they are being transported over long distances, they may travel on commercial flights and be delivered to and from the airport by a courier service.

Organ Allocation

Federal law and regulation charge the OPTN to maintain an allocation system that promotes equity and efficiency, minimizes wastage of transplantable organs, and allows individual medical judgment in evaluating and accepting organ offers.

Candidates do not have a designated “ranking” on a waiting list until the OPO enters data for a given organ offer.  The characteristics of each offer may be different in terms of donor size, blood type and location, thus the rank-order of potential recipients will be unique to each offer.

The OPTN computer system generates a “match run” list.  This displays which potential recipient is to be offered each organ in sequence.  Using the match run results, a specialist at either the OPO or UNOS notifies the medical teams for the highest-ranked candidates and provides additional detail to help the team evaluate the organ offer.  This initial notification is usually sent electronically via computer or text message, but the transplant program may request additional information by phone.

Once the transplant team for the highest-ranked patient is notified, they have one hour to review detailed information about the donor and the organ and either accept or refuse the offer.  If the organ is accepted, arrangements are made for recovery and transportation.  If the transplant program declines the offer, it will note a refusal reason back to UNOS.  The offer process will continue either until the organ is accepted or until no one can accept it in time to arrange a successful transplant.

The OPTN matching system is programmed to reflect many factors.  These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system.  Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles.  One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need.  The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward.  The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

  • how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
  • (for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
  • the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
  • if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation.  We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

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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 lovePlease view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

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.

So You Need A New Heart, Lung, Kidney –The Process


The tissue and organ donation/transplantation process in the United States is highly structured, regulated and complex.  It isn’t as simple or corruptible as the entertainment industry would like to make it.  It is unfortunate that Television shows distort the process in order to be more dramatic and get better ratings.  Too often popular TV shows like Grey’s Anatomy depict manipulation of the process where a seriously ill person is placed at the top of the national transplant list by the attending surgeon or worse yet, a medical student.  This is folly, no one person has that much influence over where an individual patient might be placed on the list.  I’m sure you have also seen TV shows where there are two unrelated patients in a room, one is in a coma and the other needs a new heart.  The TV doctors then, declare the coma patient brain dead and give the heart to the person in the next bed, more folly.  

For accurate information on how organ donation/transplantation is regulated and how hospitals address the issue in your area it would be best to contact your local Organ Procurement Organization (OPO).  Barring that you might visit Answers.com.  http://www.answers.com/topic/organ-transplant.  This site provides easy to understand information about donation/transplantation issues. 

Answers.com notes that donors can range in age form newborn on up. People who are 65 years of age or older may be acceptable donors, particularly of corneas, skin, bone and for total body donation.   Age should not be a barrier to becoming an organ donor.  Interestingly, an estimated 10,000 to 14,000 people who die each year meet the criteria for an organ donation, but less than half of that number becomes actual organ donors.

Generally, here’s how it works.

To get on the list, you need to visit a transplant hospital.  Every transplant hospital in the United States is a member of the United Network for Organ Sharing (UNOS). You can use the UNOS directory at www.unos.org/members/search.asp to find a transplant hospital, or just visit www.unos.org for additional information. 

A doctor or doctors will examine you and order a variety of tests to determine if you meet the criteria to be listed.  His/her findings may then be brought to the hospital transplantation committee to determine if your name should be submitted to UNOS to be placed on the national list. You can get on the waiting list at more than one transplant hospital. Each hospital has its own criteria for listing patients. If you meet their criteria, they will add you to the list but that doesn’t mean they can dictate where you will be on the list.

Once listed your name will be added to the national pool of names. When an organ donor becomes available, all the patients in the pool are compared to that donor. Factors such as blood and tissue type, size of the organ, medical urgency of the patient’s illness, time already spent on the waiting list, and distance between donor and recipient are considered.

The organ is offered first to the candidate who is the best match locally.  If no local match is found the organ will be offered regionally and then nationally until a recipient is found.

 

All hospitals are required by law to have a “Required Referral” system in place. Under this system, the hospital must notify the local Organ Procurement Organization (OPO) of all patient deaths. If the OPO determines that organ and/or tissue donation is appropriate in a particular case, they will have a representative contact the deceased patient’s family to offer them the option of donating their loved one’s organs and tissues. By signing a Uniform Donor Card, an individual indicates his or her wish to be a donor. However, at the time of death, the person’s next-of-kin may still be asked to sign a consent form for donation. It is important for people who wish to be organ and tissue donors to tell their family about this decision so that their wishes will be honored at the time of death. It is estimated that about 35 percent of potential donors never become donors because family members refuse to give consent.  Refusal is usually attributed to the fact that the deceased person never told family members of the desire to be a donor.

 

I recognize that the above explanation is simple and incomplete but I hope it answers some of the questions you have about the process.   Your comments/corrections/additions are encouraged.

 

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