<p>本文探討一位初診斷毛毛樣腦血管症併發冠狀動脈疾病之護理經驗,於 2019 年2 月 28 日至 3 月 11 日運用 Gordon 十一項健康功能型態評估,經由觀察、會談、身 體評估及病歷查閱等方式蒐集資料,確立護理問題有健康維護能力改變、心輸出量減少、焦慮。藉由共同討論自我照顧學習計畫,重建健康生活型態;教導罹患冠狀 動脈疾病後正確的照護及心肺復健運動計畫介入,維護現存的心肺功能;以傾聽、鼓勵使個案宣洩負向情緒,主動召開跨專業領域會議,規劃出院返家後的各項事 宜,及引導重要家人照護,緩解焦慮的情緒。毛毛樣腦血管症屬罕見疾病,醫療團隊在鮮少有例可循,又無實際照護經驗之下,能有足夠的訊息討論如何提供最適切 的照護,是一大困難;而後續返家照護僅只能由電訪了解及關心,這是在照顧個案時,所感到的限制,因此建議,醫院可成立罕見疾病的個案管理師及資料庫,協助 居家訪視且定期召開團隊的討論會,將獨特疾病案例完整建構,以提供往後臨床護理同仁,照護此類個案有足夠的訊息,提供最適當的照顧。盼藉此經驗可作為未來 照護此類病人之參考。</p> <p>&nbsp;</p><p>This paper explores a nursing experience with a patient diagnosed with Moyamoya disease associated with coronary artery disease for the first time. The patient&rsquo;s medical state was measured using Gordon&lsquo;s Functional Health Patterns Assessment between Feb. 28 and Mar. 11, 2019. This assessment, coupled with data collection using observation, conversation, physical examination, and medical history, helped to identify the patient&rsquo;s health issues that required the nursing staff&rsquo;s special attention: a compromised self-care ability, decreased cardiac output, and symptoms of anxiety. By discussing the self-care learning plan with the patient, the nursing team helped the patient to re-create a healthy lifestyle. The patient was also taught about a good self-care routine to manage his coronary artery disease, and was urged to engage in a cardiac rehabilitation program, so as to prevent her heart and lungs from deterioration. The nursing staff listened closely to the patient&rsquo;s complaints, so she could let her negative emotions out. A cross-field meeting was convened, so as to pre-arrange everything that should be prepared for the patient after she was discharged from hospital, help her immediate family members to take better care of her, and assuage her anxiety. Moyamoya disease is a rare disorder, so there were very few examples to be followed. Hence it was a big challenge to decide how to provide the most appropriate care to the patient as the nursing team did not have actual care expe- rience and lacked sufficient information regarding this area. Another limitation arose when nurses could only check her conditions via phone calls after she was discharged from hospital. For that reason, it is advisable to recruit rare disease case managers and create a database, in order to help with paying home visits and convening discussion meetings on a regular basis. In so doing, cases of rare diseases can be more completely compiled, so clinical nursing staff will have sufficient information in this regard, and will be able to offer the best possible care to their patients. This nursing experience is hereby shared and serves as a reference for clinical practices.</p> <p>&nbsp;</p>