“Not being able to breathe is a very scary experience. Caregivers can help by providing emotional support for patients,” Dr. MeiLan Han, Chief of Pulmonary & Critical Care at the University of Michigan and volunteer spokesperson for the American Lung Association said. “Another thing you can do to support your loved one is to learn more about how ARDS is diagnosed and treated.”

Acute respiratory distress syndrome, or ARDS, is a serious lung condition caused by an abnormal buildup of fluid inside the lungs. It has been getting some attention in relation to COVID-19, but there are a wide range of causes including illness or infections, trauma or even as a result of having a medical procedure. In the United States, about 190,000 Americans are diagnosed with ARDS each year.

“ARDS is a serious illness that impacts both the patient and their families,” Dr. Han said. “It is important to understand that recovery can take a long time, even after the initial hospitalization. Ongoing support from friends, families and caregivers is an important part of that recovery process.”

What symptoms signify ARDS?

Patients with ARDS often develop symptoms within a few days of an inciting event and the condition can get worse very quickly. Typically, the first sign that something is wrong is extreme difficulty breathing and shortness of breath. But low oxygen levels in the blood can eventually result in several other symptoms, including confusion, dizziness, low blood pressure and a rapid heart rate.

People of all ages can get ARDS, but certain factors can put someone at higher risk. These include advanced age, chronic lung disease and tobacco use.

How is ARDS diagnosed?

The majority of patients who develop ARDS are already in the hospital. However, if your loved one begins experiencing severe difficulty breathing while at home, it is important that you get them to the nearest ER immediately.

To diagnose ARDS, doctors will do a chest X-ray to look for fluid in the lungs and a blood test to find out the severity of oxygen starvation.

How is ARDS treated?

In the initial treatment phase, most patients will be moved to the intensive care unit. Treatment aims to increase blood oxygen levels and provide breathing support, so all patients will require supplemental oxygen. “Patients may be treated with high amounts of supplemental oxygen. If this can’t be delivered through a mask, sometimes patients will need to be sedated and mechanically ventilated through a tube that goes down the throat and into the lungs,” Dr. Han explained.

In the most extreme situations, ECMO may be required as well. This high-risk procedure pulls the patient’s blood outside of their body and pumps it through a membrane that adds oxygen and then the blood is returned to the body. The ECMO machine performs the function of the lungs successfully so the lungs can rest and breathing machines can be set to low.

How can caregivers help with recovery?

“As patients recover and are ultimately discharged from the hospital, many will still have an impaired ability to breathe for quite some time,” Dr. Han explained. It is important to create a treatment plan with your doctor and stick to it. For some, the path to recovery may require a stay at a rehabilitation facility before returning home. Others may require some form of respiratory support for a prolonged period after the acute illness.

In addition to treating breathing problems, ARDS patients may have cognitive dysfunction, anxiety, depression and physical disabilities, depending on the severity of their illness. “This can result in reduced quality of life and impaired ability to return to work for anywhere between two to five years, which is why caregivers support, both emotionally and physically is so important.”

Even with the best outcome of your loved one recovering from ARDS, there may be a long road to recovery. Caring for a loved one who is or has experienced severe disease can feel overwhelming at times. It helps you to better understand what is happening to your loved one, anticipate possible outcomes and connect with others who can provide support to you as you care for your loved one. You can also read stories of other caregivers to learn their tips and tricks.

Find Support

The Lung Association recommends patients and caregivers join our Living with Lung Disease Support Community or attend Better Breathers Club meetings to connect with others faced with this condition.

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