42 Solid Organ Transplant
Every obstacle I have overcome
Has made me stronger in some way
And to get the best out of life
So this bump I’ve now stumbled upon
The frequency of organ transplantation has increased dramatically over the past 30 years and has increasingly become a part of patient care. In 2008, there were 27,961 solid organ transplants in the United States, with 1,964 of these procedures occurring in patients less than 18 years old (Table 42-1). Greater experience with the surgical techniques involved with organ transplantation and improved understanding of the etiology of organ rejection will likely lead to increases in the number of patients involved with transplant medicine.
TABLE 42-1 Distribution of Pediatric Solid Organ Transplants in 2008
Organ | Number of pediatric transplants | 3-Year survival rates |
---|---|---|
Kidney | 773 (39%) | 97% |
Liver | 613 (31%) | 88% |
Heart | 365 (19%) | 81% |
Intestine | 93 (5%) | 64% |
Lung | 45 (2%) | 60% |
Data compiled from United Network for Organ Sharing 2008 and www.ustransplant.org
In the United States, transplant centers are not ranked, but there are national survival rates published on www.ustransplant.org. Patients and families are able to access this data to compare the outcomes of various transplant centers.
Transplant Evaluation
Ethical issues arise when transplant teams are faced with a family with financial and psychosocial limitations. The team must ensure that resources are available to allow the family to overcome these obstacles so that they do not compromise the child’s care. It is well documented that proper post-transplant care is essential to allow for a good outcome. Therefore, in some instances, patients are declined for transplant due to insurmountable psychosocial limitations. On rare occasions, issues of medical foster care are raised to provide a safe environment for the child post-transplant (Table 42-2).
Transplant team member | Role |
---|---|
Surgeon | Performs transplant surgery |
Physician | Provides medical care both pre- and post-transplant |
Coordinator | Responsible for pre- and post-transplant care from a nursing perspective, coordination of care, evaluations and patient and/or family education |
Social worker | Provides assessment and care around psychosocial needs of family during all phases of transplant process |
Psychologist | Performs pre-transplant evaluation to identify any contraindications to transplant. Identifies need for continued therapy pre- and post-transplant |
Transplant Preparations
It is important to acknowledge that some patients become too ill and no longer remain viable transplant candidates. Furthermore, there are also numbers of waitlist deaths each year, where the appropriate organ is not found in time to save the child. Transplant caregivers then can find themselves in the situation of concurrently managing and maintaining end-stage diseases while simultaneously navigating the dying process. This can feel contradictory to the needs of staying active on a transplant list. It is not uncommon for members of the medical teams to have differing opinions on how to handle these situations. Families are also conflicted with the need to not give up, and yet spare their child any unnecessary pain or discomfort. Discussions about whether a patient can have a DNR order in place and still be active on the transplant list are not infrequent. An example might be a patient with cystic fibrosis who faces potential intubation for progressive end-stage lung disease yet still desires to reach transplantation. In this situation, some patients and/or families elect to proceed with intubation in the hope that an organ will be located in time. Others will choose to pursue more comfort care measures at this time. The palliative care team can be instrumental in guiding the patient, family, and caregivers through these difficult decisions (Fig. 42-1).
Transplant
In general, after a transplant, patients will receive immunosuppressive therapy to minimize the chances of rejection. While the degree of immunosuppression differs with each organ, the result is that each patient is at greater risk for infectious complications. For some organs, this risk diminishes over time as immunosuppression is lowered. For others, this risk is significant and lifelong. In general, most solid organ transplant patients are at risk for both acute and chronic rejection. While acute rejection most often occurs in the first few years post transplant and chronic rejection most often after 1 year, these distinctions are not absolute. Therefore, each transplant team will have individualized plans on how to monitor patients for each of these entities. Secondary to these immunosuppressive medications, transplant patients are at risk for long-term complications, including an increased risk of infection, hypertension, renal insufficiency, fluid retention, diabetes, dyslipidemias, seizures, and malignancy. While each patient will have a variable medication regimen, common symptoms experienced by this patient population include gastrointestinal upset, thrush, tremors and headaches, hirsutism, and mood changes (Table 42-3).
TABLE 42-3 Transplant Immunosuppressive Therapies Induction Agents
Medication | Mechanism | Adverse effects |
---|---|---|
Induction medications | ||
Rabbit anti-thymocyte globulin (Thymoglobulin) | Polyclonal antibody decreases CD4 lymphocytes | Persistent lymphopenia |
Horse anti-thymocyte globulin (Atgam) | Polyclonal antibody against T lymphocytes |
Post-Transplant Period
Although patients may think about their donors and feel grateful for the gift, one study1 showed that none of the study participants “acknowledged any sign of guilt (for surviving the cadaveric donor or for putting a parent/relative/friend through the physical pain of living related donation). Few had considered that they received any of the donor’s traits. All believed that their sense of self was stronger after transplant with many respondents emphasizing a new, inner strength during the post-transplant period.”1
Adolescent patients pose a different set of concerns to the transplant professionals. During this stage of development, children feel invincible and are struggling to assert themselves as autonomous individuals. “Risk-taking behaviors function to fulfill developmental needs for independence, autonomy and self-competence.”2 This is the most difficult developmental period for parents and for medical professionals. A healthy teen would be given increasing autonomy and responsibility. For the teen with a transplant, however, parents need to walk a fine line between helping their child learn to manage their own care while they remain involved to ensure that their child is adhering to the medical regime. Their goal is to prepare their child to become an independent adult able to manage his or her own medical care. The foremost concern certainly is that the adolescent will not adhere to the medication regime. In a transplant patient, this can have life-threatening consequences. Teens often want to test the limits of their bodies and don’t fully believe that they need the medications. They may purposefully or subconsciously forget to take their medication for a day or longer. When they realize their error, they may not bring this to the attention of their parents. Additionally, teenagers generally have a strong desire to be like their peers and to feel normal. “During adolescence, a sense of identity and self-understanding is created through social relationships with peers.”3 They may want to feel that they can have days without medications and days just like their healthy friends. Patients whose friends do not know about their transplant may prefer the risk of missing a dose of medication rather than the risk of having a peer ask them about their treatments. There are transplant centers that resist transplanting teens because of these significant concerns about non-adherence.
An additional stressor for the adolescent transplant patient is the eventual transfer of care to an adult center. This is a difficult transition period both medically and psychosocially for the transplant patient. Patients feel abandoned by having to leave a pediatric center, where they may have received care their entire life. Furthermore, adjusting to a new mode of care delivery in an adult center can be challenging to pediatric patients. From a medical standpoint, studies have shown an increased incidence of organ rejection during adolescence.4
In adolescence and adulthood, questions regarding pregnancy post-transplant are often asked. Depending on the health of the transplant patient and the particular organ that they received, the risk of pregnancy is variable. For some organs, such as a lung transplant patient, the risk of experiencing significant and potentially life-threatening rejection is quite high.5 For other patients such as kidney transplant recipients, the risk is likely far less.6 For all transplant patients, they must be aware of the potential risks to a fetus of all medications they are taking.
For the child undergoing a transplant there are many social stressors. There may be extended periods when they miss school and other activities, as well as the continued restrictions of exposure to ill contacts. There are physical changes due to medications such as hair growth or loss, Cushingoid features, and weight gain. In addition, there is the constant feeling of being different from others. “The threat of rejection or infections is a reminder to the patients of the uncertainly of the transplant course. This uncertainty could be viewed as a threat to the adolescent’s sense of self. While some of the patients experienced serious post transplant medical problems, many generally express a determination to focus on the present.”1
Children do not perceive death as permanent. This understanding of death gradually develops for children after the age of 5. Children living with life-threatening illness are coping with concerns that are beyond their developmental stage. They must live with the inherent knowledge that death is a reality. “The reality is that children often know much about what is happening to them, regardless of what they have been shielded from or formally told.”7,8 Many of these children and young adults know of other patients who have died and may have experienced a life-threatening event in their own lives.
Patients and their families may be faced with transitioning from end of life disease to post-transplant recovery and, in some instances, to morbidity from post-transplant complications. Patients can feel well and be more active and then experience complications that quickly reverse these gains. In other instances, there may be gradual post-transplant complications such as living with chronic rejection. Patients and their families may need to shift their mindsets to one of recovery to, once again, facing loss and possibly death.9
End of Life
When a transplanted organ begins to fail, many of the issues surrounding end-stage disease and end of life care are again a reality for a patient and their family. This will certainly vary by organ with various salvage therapies available to each. For example, renal transplant recipients may be faced with considering restarting dialysis. When a transplant organ has failed, an organ recipient and his or her caregivers must consider whether re-transplantation is an option. This decision is generally quite difficult for patients and the transplant team for a variety of reasons. One main consideration would be outcomes following a re-transplant. In some cases, outcomes are worse than with the primary transplant, although this varies significantly with the organ involved.10-12 Additionally, the transplant medications and therapies may have caused problems with other organ systems, such as the kidneys or liver. In some cases, these consequences have resulted in a patient who is not a good re-transplant candidate. Furthermore, it is essential to continue to assess psychological and social factors that could make retransplantation more difficult. Examples would include issues with non-adherence, drug use or poor medical follow up. As each individual transplant center will have its own criteria for primary and for re-transplant patients, it is not uncommon for a patient to be referred to a new program for consideration of re-transplantation. In some cases, this program may be quite a distance from the patient’s home.
1 Durst C.L., Horn M.V., Maclaughlin E.F., Bowman C.M., Starnes V.A., Woo M.S. Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation. Pediatr Transplant. 2001;5:27-31.
2 Millstein S.G., Ingra V. Theoretical models of adolescent risk-taking behavior. In: Wallander J.L., Siegel I.J., editors. Adolescent health problems. New York: Guilford; 1995:52-71.
3 Sroufe L.A., Cooper R.G., Dehart G. Child Development: its nature and course, ed 3. New York: McGraw Hill, 1996.
4 Bell L.E., Bartosh S.M., Davis C.L., Dobbels F., Al-Uzri A., Lotstein D., Reiss J., Dharnidharka V.R. Adolescent transition to adult care in solid organ transplantation: a consensus conference report. Am J Transplant. 2008;8:2230-2242.
5 Armenti V.T., Radomski J.S., Moritz M.J., Gaughan W.J., McGrory C.H., Coscia L.A. Report from the National Transplantation Pregnancy Registry (NTPR): outcomes of pregnancy after transplantation. Cecka, Terasaki. Clinical transplants. 2003. Los Angeles
6 Zachariah M.S., Tornatore K.M., Venuto R.C. Kidney transplantation and pregnancy. Curr Opin Organ Transplant. 2009;14:386-391.
7 Sourkes B.M. Armfuls of time: the psychological experience of the child with a life-threatening illness. Pittsburgh: University of Pittsburgh Press, 1995.
8 Bluebond Langer M. Private worlds of dying children, Princeton, NJ. Princeton University Press, 1978.
9 Berzoff J., Silverman P.R., editors. Living with dying. a handbook for end-of-life healthcare practitioners. New York: Columbia University Press, 2004.
10 Aurora P., Edwards L.B., Christie J.D., Dobbels F., Kirk R., Rahmel A.O., Stehlik J., Taylor D.O., Kucheryavaya A.Y., Hertz M.I. Registry of the International Society for Heart and Lung Transplantation: Twelfth Official Pediatric Lung and Heart/Lung Transplantation Report-2009. J Heart Lung Transplant. 2009;28:1023-1030.
11 Kanter K.R., Vincent R.N., Berg A.M., Mahle W.TM., Forbess J.M., Kirshbom P.M. Cardiac retransplantation in children. Ann Thoracic Surg. 2004;78:644-649.
12 Shen Z.Y., Zhu Z.J., Deng Y.L., Zheng H., Pan C., Zhang Y.M., Shi R., Jiang W.T., Zhang J.J. Liver retransplantation: report of 80 cases and review of the literature. Hepatobiliary Pancreat Dis Int. 2006;5(2):180-184.