Striving for normalcy: symptoms and the threat of rejection after lung transplantation☆
Section snippets
Background and significance
Over 8000 Americans have undergone lung transplantation for the primary purpose of prolonging survival and improving their health-related quality of life (UNOS, 2002). Tremendous resources, both financial and personal, have been expended to improve surgical techniques and immunosuppression regimens, thereby increasing the likelihood of success after lung transplantation. Survival rates currently reach up to 75% for year one, but gradually decline to 55% by year three (Arcasoy & Kotloff, 1999).
Sample and setting
The study was conducted at a university-based pulmonary transplant center. All recipients returned to the center routinely for follow-up evaluation under a surveillance protocol (every 3 months during the first year, every 4 months during the second year, at 6-month intervals thereafter) and whenever a change in their condition warranted medical evaluation. Between routine follow-up visits, recipients are expected to take medications, perform self-monitoring activities, and report changes in
Findings
Prior to transplant, lung candidates were informed that rejection of the donor lung is virtually inevitable. All recipients reported being told, “Expect some rejection some day, it comes with the territory. Rejection can happen anytime in your life.” (Mrs. Cloke) Without exception, participants in this study verbalized: “Having a transplant is like trading one set of problems for another…always facing the threat of rejection… it's a trade-off.” (Mrs. Stiber) However, when questioned directly
Discussion
Individuals awaiting lung transplantation live a life that is limited and governed by their lung disease. The anticipated course of their illness is commonly one of gradual deterioration, punctuated by intermittent flare-ups in their underlying condition. Having an end-stage pulmonary illness means that as their condition worsens, they are forced to give up many activities because of debilitating symptoms, need for oxygen, and activity intolerance. Disability is accompanied by an awareness that
Limitations
The recipients in this study were participants of only one transplant program that employs an aggressive surveillance protocol involving transbronchial biopsy and bronchoalveolar lavage to detect rejection and other post-transplant complications. It is unknown if the process of developing insight over time is expedited by providing objective evidence of rejection and may limit the extent to which findings may be generalized to other centers without such protocols.
Additionally, although attempts
Implications
Knowledge of the process of how recipients evaluate and attribute symptoms to the threat of rejection has implications for promoting more effective patterns of symptom recognition and reporting. Because recipients’ expectation of normalcy is seeded before transplant, it directs us to intervene early to assist lung candidates to comprehend the real threat that untreated rejection poses to the achievement of normalcy within illness. Clinicians also need to remind recipients that it is common to
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Funded by NINR, NIH, US Public Health Service (F31 NR07425), Pennsylvania Nurse Foundation, Pauline Thompson Research Award, Enid Goldberg Research Award, Sigma Theta Tau, Eta Chapter.