Surviving ARDS and Dealing with Post-ARDS Medical Issues. What may be encountered or expected?

LUNG (PULMONARY) FUNCTION: Most patients who survive ARDS have a remarkable degree of recovery of lung function, given the severity of the initial injury. Recovery time for each patient is variable. Patients recover at different rates and have different end points. Complications from tracheal injury and tracheal stenosis may be present which affect the rate and degree of recovery. However, most patients recover the great majority of lung function in the first three to six months. The recovery period may extend up to a year and beyond. A few patients experience a permanent decrease in lung function.

Lung function recovery is determined in part by how well the patient is able to take a deep breath and how well oxygen is able to go from the lungs into the bloodstream. This is measured by pulmonary function tests and by pulse oximetry or arterial blood gas testing. Patients may receive these tests at discharge from the hospital and at three to six months after discharge.

During the first three months after discharge from the hospital, some patients may feel short of breath, have a cough, produce phlegm, and feel fatigued. Some may be required to use supplemental oxygen for a period of time. Many patients experience hoarseness, which is due to irritation from the endotracheal tube used while they were on a ventilator. As the months go by, however, patients may feel like they can take a deep breath more easily, walk farther distances, or get tired less easily.

Some patients do not recover as well and may continue to experience abnormal lung function for the rest of their life. Also, some patients have underlying medical conditions which either prevent full recovery or are the predominate cause of the ongoing abnormal lung problems. Individuals might have COPD (Chronic Obstructive Pulmonary Disease), emphysema, lung cancer, or a wide range of pulmonary disorders and diseases.

STRENGTH and STAMINA: In addition to lung injury, other residual effects of a critical illness can reduce strength and stamina after hospital discharge. Depending in part on the length of deep sedation and intentional paralysis, the body's muscles may undergo significant atrophy and the individual may lose considerable weight. To overcome these effects, many patients need extended rehabilitation. Ideally, physical rehabilitation begins after initial stabilization during mechanical ventilation with periodic movement of legs, arms, neck, joints, and massaging muscles, to help minimize atrophying and to help prevent joint "lock-up". This depends on the medical status of the individual and the doctors are in the best position to judge whether such intervention is appropriate. Family members and friends might be able to assist with this task under the guidance of the physicians and nurses and considering the status of the patient. Never undertake doing this without the guidance and instruction of medical personnel and the approval of the doctors.

Physical rehabilitation should begin in earnest as soon as possible after the end of mechanical ventilation and continue after hospital discharge until full strength and stamina are restored. A combination of aerobic exercise and weight training can be tailored to the individual by a qualified physical therapist.

Not every patient is the same, and the extent to which an individual may recover will be a function of many factors, including the length of the coma/deep sedation, amount of muscle atrophy, whether there was or was not joint "lock-up", amount of weight loss, and the extent of damage to lungs, vital organs, and body processes.

MEMORY and COGNITIVE AREAS: Research efforts are now being extended to include the areas of emotional, cognitive and memory loss. It is known that these conditions persist during the post-ARDS period and research is being focused on the nature and impact of these problems. Side-effects of many drugs used to treat the underlying conditions and also to put a patient into a coma/deep sedation might be to cause memory loss and perhaps later cognitive problems. Also, depending on the extent of damage from low O2 Sat levels, memory loss and later cognitive problems may also be a function of physical impairment (e.g., brain damage). In many cases, the memory loss and/or later cognitive problems may be significant, but in time as recovery proceeds the memory loss and/or cognitive problems usually begin to lessen. Many ARDS survivors report ongoing memory loss and cognitive problems stretching sometimes six months to a year or more after coming out of the coma/deep sedation.

EMOTIONAL ISSUES: This is another area that received little attention for many years. Medical and professional advisors are looking into these areas. The anecdotal information coming from ARDS survivors is that there are a range of emotional and mental health issues which they confront.

FEAR: Many ARDS survivors have a very deep fear of getting ARDS again. There are currently no known studies or statistical data on getting ARDS more than once. It is known that there are individuals who have been diagnosed as having ARDS more than once. There does not appear to be any medical reason why, given the right set of circumstances, an individual's body would not react in a similar manner more than once. Recovery from ARDS does not show any creating of an immunity against getting ARDS again.

A second important element of fear is that of not being able to breathe. This is one of the most powerful fears known. Individuals who survive ARDS and then come down with various medical problems such as colds, bronchitis, and other pulmonary conditions which affect breathing, often report an intensification of the fear of not being able to breathe.

GUILT and FEELING SORRY: Another fairly common emotion experienced by ARDS survivors. Why did this happen? What did I do wrong? Being sorry for putting family and friends through this terrible experience. Usually this will, in time, slowly fade as the recovery process proceeds. However, depending on the depth of the guilt and feeling sorry, medical intervention might be warranted especially when accompanied by depression.

DEPRESSION: Virtually all ARDS survivors report going some period of depression. Sometimes, the depression is short-lived and fades as recovery proceeds. Other times, the depression may be deep and severe. The survivor, friends and family need to be aware of the manifesting signs of depression in order that this may be confronted and treated by medical intervention early if warranted. Some of the indications of depression are not eating or exhibiting signs of eating disorder, uncleanliness, sleeping a lot, no interest in doing things the individual has always enjoyed, anger, short temper, wanting to be left alone, not wanting to leave the house or bedroom, work-related problems. Do not be afraid to speak with the doctors, and to seek professional help from counselors, psychologists, and psychiatrists. The earlier the intervention, the greater the chance of combating the depression.

POST TRAUMATIC STRESS DISORDER (PTSD): This condition embraces a wide range of emotional and mental health problems. This area is being examined more closely. For more information on this topic please see the Post ARDS section of the Learn About ARDS page on this website.

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