What are the most important questions that I should ask the physicians?

Forewarned is forearmed as the old saying goes.  At the same time, too much too soon can be significantly overwhelming.  In this section, we provide general responses from some of our medical and professional advisors as a guide to assist you in navigating the rough waters of battling ARDS.

1.)     Which body systems are/will be affected?  Do any other organs demonstrate  abnormal function?

The reason for this is that ARDS in most cases is really a systemic injury involving multiple organs.  The lungs are among the most sensitive to the inflammation from ARDS, and hence they may be the first or the most prominent organ involved.  Loss of pulmonary funtion, the inability to adequately oxygenate the blood and remove CO2, however, may result in the involvement of other (organs).  If involvement of other orgams is substantial, then the prognosis is not as good, and therapy will be more involved.

2.)     What mode of mechanical ventilation is being used, and what pressure control and volume-cycle are being used for inflation?

To some medical professionals, from a medical standpoint it would be desirable to hear terms such as 'pressure-controlled ventilation', 'inverse ratio ventilation', or 'permissive 'hypercapnia'.  However, those terms are not self-defining and medical personnel need to explain them to patients and their families in more simple layman terms, and be able to show why a recommended course is better than some other available course.  Patients and their families, quite naturally, want the best and fastest course to get well. With ARDS, there is no "best and fastest". This needs to be stressed.  Importantly, also just knowing some buzz words does no one any good.  Medical personnel should be up-to-date on current research and the body of medical knowledge available to them to determine the best way to address the particular patient's ARDS, including being prepared to transfer the patient to a medical facility experienced in dealing with ARDS if this is medically appropriate considering the patient's condition.  There is a growing evidence that less traditional modes of ventilator support may be associated with less additional lung injury and improved lung physiology during mechanical ventilation.  There is also a consensus that limiting inflation pressures should be a goal, and that volume-cycle is very important as well in ventilator support.  The leading European and US centers treating ARDS generally agree on these principles.  In fact, limiting ventilator pressure has been shown to be an important factor in limiting lung damage from ARDS.

3.)     Does the health care team have experience in taking care of patients with severe ARDS?  Do you know about recent research and at what point would you transfer to a different facility with an ICU having a medical staff experienced in handling ARDS patients and multidisciplinary approach to the patient's needs?

There is some evidence that outcome may be better in ICU's who have experience in treating ARDS.  This appears not only from the physician standpoint, but also from that of nursing, respiratory therapy, nutritional support, etc.  Since ARDS is a multisystem condition, an experienced multidisciplinary team approach is highly desirable.  If the answer is "no" consider early transfer to a facility that has experience with managing ARDS.  Importantly, if transfer is not possible or undesired, you should make the physicians aware of the wide range of resources such as the ARDS Clinical Network (ARDSNet) which they may use for consultation and information gathering, including this website.

4.)     What are the current chances for "survival". How often do people return to their previous lifestyle, and if limited, to what extent?

This is difficult for any of our medical consultants to expand upon as each patient is unique and the circumstances leading up to the ARDS and its course may vary greatly.  It is important to recognize that some people, for emotional and psychological reasons, do not want to know the current chances of survival.  Mark Lowery, our webmaster and survivor of ARDS, recalls how his mother told him that during his battle with ARDS she did not want to know and was glad that the doctors did not tell her the usual mortality rate.  She told him that the doctors stressed the seriousness of his condition and she was able to understand and deal with that in making decisions with the doctors of what medical care to provide to him, but she would not have been able to deal with the knowledge of the usual mortality rate.

The second aspect is very difficult to answer.  Some people recovery quickly and very well, returning to their pre-ARDS normal lifestyle.  Other survivors have varying level of disabilities and continuing problems associated with the ARDS encounter.  There may be physical as well as emotional and mental health issues which survivors, their families, and loved ones will encounter and have to deal with on a day to day basis.  In this vein, ARDS is no different that any other serious medical condition.  The true strength-sapping power of ARDS is the quickness with which it may strike, the rapid onset and progression of the medical condition to a very serious level, and the unpredictability of its course.


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