Investigation of Sleep Disorders and Lung Injury in Marfan Syndrome
48:04-49:05
Q:
For someone with a history of bronchiectasis and history of pneumothoraces as well if you're experiencing a lot of shortness of breath you use an inhaler what are the things that this people like this should be talking about with their physicians if they're not experiencing the relief that they need?
気管支炎や気胸の既往があり、吸入器を使っていてもひどい息切れがあるとのことです。期待する効果がみられない場合、医師にはどのように伝えたらいいですか？
A:
They should talk about that. They should say, “I'm not getting the kind of relief that I need in order to do the activities that I want,” I mean, I, it’s, the lung, I mean the lung is a complex organ but the lung is understandable. When someone has shortness of breath it's because of a reason, there, it's rare that someone has shortness of breath of unknown cause and what that means is that your pulmonologist needs to do a deep dive and there are very advanced studies that we can conduct in order to figure out what is the basis of the shortness of breath. We can do advanced exercise studies. We can measure oxygen levels with different activities. We can use advanced forms of imaging. We have an incredibly varied tool box that is getting kind of larger and larger by the year and so you just need to tell your physicians and your team that you want an answer and my feeling is that no one should have kind of the symptom of shortness of breath without a very, very aggressive diagnostic study because I think that shortness of breath may be the worst pain that someone can experience.
「息切れが楽にならないので、やりたいことができない」と、そのまま伝えればいいと思います。肺という臓器は複雑ではあるのですが、理解はしやすい臓器です。息切れに関しては、原因がわからないということは稀で、呼吸器専門医による詳しい検査が必要です。原因を調べるにあたっては、最先端の検査が複数あります。運動をしながら調べる先進的な検査もありますし、様々な活動を行った際の酸素レベルを測定することもできます。高度な画像検査もあります。このように、検査は驚くほど多彩であり、その数は年々増え続けています。回答としては、主治医の先生やチームに息切れの原因を見つけてもらえるようにお願いする、ということです。個人的には、息切れは放置せず、徹底的に検査を行うべきだと考えます。なぜなら息切れは、経験する中で最も苦しい症状だと思われるからです。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
