对任何人来说,最大的疾病之一就是无足轻重

P. Podolec
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引用次数: 0

摘要

亲爱的读者,在我们继续之前,试着思考一下加尔各答的圣特蕾莎修女曾经说过的话。到目前为止,她是世界上最有资格说出这样令人不快的事实的人之一。当然,她一生都在印度农村和不发达地区的极端条件下工作。在那些土地上,一碗热汤、一片全麦面包和干净的床单是难以获得的无价商品。但这就是全部吗?不,她完全知道,最重要的是,认识每一个人是至关重要的。那些被她和她的传统所照顾的穷人,很容易理解他们不是被当作申请者,而是被当作臣民。这种差异是至关重要的,尤其适用于当代医学。在财富、保险、手续、报销等的时代,我们不再花一分钟的时间来整体地看我们面前的病人。有些人会立即开始思考什么是最好的动脉通道(无论是股动脉还是桡动脉),有些人会争辩说磁共振比超声心动图好,其他人会说什么指南推荐……这确实有点可悲!在大多数情况下,我们真的不知道病人真正的需求是什么。作为一个可怜的借口,我们把注意力集中在病人身体的微小碎片上,大胆地声称我们治愈了他。我们经常试图修复身体的一个小部位(有时对患者和医疗服务机构来说风险和成本都太高)。这是多么天真啊!然后我们让病人尽快回家,并惊讶地发现病人在随访中感觉不太好。为什么呢?有人可能会说,他需要再做一次手术,这可能是真的,但在大多数情况下,病人需要我们的认可,他希望我们把他看作一个人,而不是一个患病的瓣膜,动脉粥样硬化的血管或梗塞的心肌。有时候,最真诚的谈话比重复(痛苦的)检查或程序要好得多。显然,我们不可能在一天内改变我们的习惯,但也许是时候把病人作为一个主体而不是申请者来考虑了。在2016年的最后一期杂志中,大部分文章都是关于遗传性心脏病的。我们首先回顾一下卡恩斯-塞尔斯综合征的眼部表现。此外,还有一篇关于Ross手术后长期观察的原始论文。按照我们的政策,中间部分由四个罕见心血管疾病的临床病例组成,由管理团队详细介绍并评论。与前言一致,本问题以肺动脉高压患者及其家属与管理医生联席会议的报告结束。(…)
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One of the greatest disease is to be nobody to anybody
Saint Mother Teresa of Calcutta Dear Readers, Before we go any further, try to ponder the quote once said by the Saint Teresa of Calcutta. She was by far one of the most entitled person in the world to say such an unpleasant truth. Certainly, for her entire life she had been working in extreme conditions in rural and underdeveloped areas in India. In the lands where bowl of hot soup, slice of whole‑meal bread and clean bed sheets were unobtainable and priceless commodities. But is that all? No, she perfectly knew that above all, recognition of every human‑being is the crucial thing. Those poor who were cared by her and her convention, could easily understand they are not treated as applicants but as subjects. This difference is of paramount importance and especially applies to the contemporary medicine. In the era of wealth, insurance, procedures, reimbursements, etc., we no longer spend a minute to see the patient in front us as a whole. Some would immediately start to think what is the best arterial access (either femoral or radial), some would argue that magnetic resonance is superior to echocardiography, others would say what guidelines recommend… It is a bit sad, indeed! In most cases, we really do not know what the true patient’s needs are. As a poor excuse, we focus our attention on tiny fragments of patient’s body and boldly claim that we cured him. Too often we try to fix one small body part (sometimes with too much risks and costs both from the patients and health ser‑ vice). How naive it is! Then we send the patient home, as quickly as possible, and are surprised to learn that the patient is not feeling so great in the follow‑up visits. Why is that? One might say, he needs one more procedure and it may be true but in the majority of cases, the patient needs our recognition, he wants us to see him as a human not as a diseased valve, atherosclerotic vessel or infarcted myocardium. Sometimes the hon‑ est conversation is much better that repeated (painful) examinations or procedures. Obviously, we cannot change our habits in a day but maybe it is a time think once more about the patient as a subject not an applicant.In this last issue of the Journal in 2016, majority of articles is dedicated to inherited cardiac disease. We start with an interesting Review on ophthalmic manifestations in Kearns‑Sayres syndrome. Further, there is the Original paper on long‑term observation following Ross operation. Obeying our policy, the middle part is composed of four clinical cases of rare cardiovascular diseases that are presented in details and commented by the managing teams. In line with the foreword, this issue ends with the report from the joint meeting of patients with pulmonary hypertension and their families with managing physicians. (...)
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来源期刊
Journal of Rare Cardiovascular Diseases
Journal of Rare Cardiovascular Diseases Medicine-Cardiology and Cardiovascular Medicine
自引率
0.00%
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0
审稿时长
23 weeks
期刊介绍: Journal of Rare Cardiovascular Diseases (JRCD) is an international, quarterly issued, peer-reviewed, open access, online journal that keeps cardiologists and non-cardiologists up-to-date with rare disorders of the heart and vessels. The Journal publishes fine quality review articles, original, basic and clinical sciences research papers, either positive or negative, case reports and articles on public health issues in the field of rare cardiovascular diseases and orphan cardiovascular drugs. Topics of interest include, but are not limited to the following areas: (1) rare diseases of systemic circulation (2) rare diseases of pulmonary circulation (3) rare diseases of the heart (cardiomyopathies) (4) rare congenital cardiovascular diseases (5) rare arrhythmogenic disorders (6) cardiac tumors and cardiovascular diseases in malignancy (7) cardiovascular diseases in pregnancy (8) basic science (9) quality of life
期刊最新文献
Association of fibrinogen and D‑dimer levels with severity of acute coronary syndromes Journal of Rare Cardiovascular Diseases in EuroPub database An Extremely Rare Congenital Association: Uni- cuspid Aortic Valve with Left Ventricular Noncom- paction (RCD code: III-5A.1.o) Survival analysis of time to develop cardiovascular complications and its predictors among hypertensive patients treated in the Ayder Comprehensive Specialized Hospital, Ethiopia: a retrospective cohort study (RCD code: VIII) Autoimmune hepatitis induced by bosentan in a patient with pulmonary arterial hypertension (RCD code: II‐1A.1; VIII)
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