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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