Category Page: Patient and Family Resources

1001 Loving Ways to Help a Patient, Family, or Caregiver

Here are some helpful suggestions for if you would like to help someone afflicted with ARDS or their families.

Patients in a coma:

  • Hold patient’s hand
  • Massage patient’s hands, feet, arms legs with unscented lotion; it will soothe the patient’s anxiety and also prevent some of the dryness that some medications can cause
  • Talk to patient, even telling stories or keeping patient informed: keep all conversations positive; any negative conversations should be discussed outside of the patient’s room
  • Do not discuss stressful events that may be occurring at the time your loved one is in the hospital; the patient is taking in more than you know and will cause undo stress
  • Read to the patient, from a book, magazine, or newspaper; even though your loved one is in a coma, many survivors note that they remembered things that were said or read to them
  • Brush or stroke patient’s hair
  • Place a cool/cold cloth on the patient’s forehead, when he/she is running a fever
  • Create journal; most patients will want to know what was happening during their time in the coma and many will not recall the some of the time prior to being intubated.
  • Bring in music that can be played on a CD cassette player; bring all different kinds of music that the patient enjoys in order to get a feel for which music will create a positive reaction
  • Bring photos of family/friends/pets If the patient opens their eyes unexpectedly, they will see the faces of families, friends and pets
  • Posting photos of your loved one when he/she was healthy will enable the staff to see the patient as they really are and thus, relate to him/her on a more personal level
  • Play tapes of family sending messages, especially family members who can not be there
  • Play tapes of children from the loved one’s family talking or singing

Patients out of a coma:

  • Bring photographs of family/friends/pets
  • Bring calendar and mark off days as they pass; when in the hospital for that length of time, days seem like nights and Mondays seem like Fridays
  • Bring in music that the patient enjoys; select a variety of music and tempo; music may help in the reduction of anxiety and stress associated and agitation that the patient is experiencing
  • Bring a clip board and pens that are easy to hold and easy to write with, either medium point ink or felt tip markers
  • Bring paper or Dry-ease marker and memo board that can be erased (no fume pens)
  • Read to the patient
  • Create a phrase sheet for communication
  • Bring a relaxation (stress reduction) tape or CD
  • Bring a favorite blanket or stuffed animal
  • Bring the patient’s own pillow and a soft, fresh pillowcase (flannel or cotton are soft and nice)
  • Bring comfortable clothes for patient to rest in or sleep in once the staff allows the patient to wear their own clothes
  • If flowers bother your loved one, you might want to consider bringing stained glass flowers, window cling flowers, plastic flowers, or drawings of flowers
  • Create a vocabulary list of medical terms: PICC line, PEEP, o2 sat, pulse/ox, A line, vent, trach, etc…
  • Create or maintain a journal for the patient as many would like to know what happened during their time in the coma and after, especially if sedation is heavy at times
  • Keep the patients writings while in the hospital and on the vent; they will be interested in looking at these writings along with the journals
  • Bring an answering machine to hook up to the telephone in the patient’s room. Leave a message explaining that the patient cannot talk but can hear your voice, so please leave a message. When there is no one in the room to answer the phone, the patient can hear the voices of loved ones and that will be uplifting and beneficial to the patient. This also allows those who cannot visit to feel that they are doing something for the patient.
  • Bring a cordless phone to the hospital room if your loved one is in the hospital but not on the vent as the patient can keep the cordless phone nearby on the bed
  • If the patient has difficulty using the call button for the nurses, ask the staff if they have something to make it easier; nothing causes more stress than not being able to get the nurses attention when you need them and no one is there to help
  • Bring e-mail correspondence from survivors to give your loved one hope; read them to the patient and ask him/her if they have any questions that they would like to ask
  • Ask the hospital if they have a VCR; many do for patient use. If they do and your loved one is up to it, rent some videos and watch them with your loved one.
  • Make sure that there are not too many people in the patient’s room at one time; it is very stressful for the patient
  • Be positive and uplifting; do not discuss such things as the mortality rate of ARDS or the fact that Jim Hensen allegedly had ARDS since the patient probably knows what happened to him
  • Don’t wear perfume or cologne

What the family/friends can do for themselves:

  • Be on good terms with intensive care nurses or nurses in the step down unit as they are usually the ones who keep you informed
  • When questions arise, write them down so that when the physicians arrive, you will not forget to ask; do not be embarrassed to ask a lot of questions. The more educated you become, the easier it will be to understand what the doctors are saying and decisions that you may have to make relating to patient care
  • When getting a decent cup of coffee for yourself on the way to the hospital, bring one for the nurse; bring sweet rolls or donuts on occasion. These hard working individuals will appreciate it more than you know; and they are the ones who are caring for your loved one, day and night.
  • On occassion, l leave leave something for the nurse on midnight’s; nights are long and lonely for the nurses, too
  • Create a list of doctors, nurses, receptionists with office address, phone number, e-mail address, pager numbers, fax numbers
  • Gather literature about ARDS for yourself and for those who visit
  • Take turns with the patient; usually, there is one person (spouse, parent, child) who spends the majority of time with the patient. Try to give THAT person a break every day.
  • Compile phone and/or e-mail list and assign a particular person to notify family/friends of the patient’s progress

What to do for the caregiver:

  • Bring lunch, dinner, snacks
  • Bring change for phone calls; most hospitals ban cell phones inside
  • Bring phone cards for pay phones.
  • Drop by as often as you can just to see if there is something that you can do, even if it is just keeping the family/friends company
  • Offer to make phone calls or pick up groceries; be specific. An offer of “please call me if I can do anything” is not the same thing as “what can I get you from the store?” suggestions include: shoveling the driveway or mowing the lawn, letting the dog out, watering the lawn and garden, watering plants, coming over for a cup of coffee and allowing the caregiver to just “talk”
  • Offer to send e-mail update so the immediate family does not have to be calling several people everyday.
  • Bring current newspapers, magazines, reading material as waiting room reading material is usually outdated
  • Bring hand cream or lotion; those who have loved one’s in crisis rarely think of the small things
  • Bring playing cards or hand held board games for the family to pass the time; these can be used by the patient later as he/she gets better
  • If you can and the patient has pets and no one to care for them, offer to take the pets in while the patient is in the hospital. It will offer peace of mind to the patient, who won’t have to worry that their pets are not being properly cared for.
  • If the patient lives alone, offer to pick up mail, notify newspapers to stop delivery, keep financial matters under control, water plants, tend to the house once in a while.
  • Remember that the nature of ARDS is that the patient may be in the hospital, in critical condition for only a few weeks or as long as two, three, four or more months.
  • Please do not forget that for the family, the first day is as difficult as the 50th day, as is the 100th day. The nature of ARDS is that of a roller coaster, with drastic ups and downs. Just as the family is feeling confident that their loved one has made improvement, the next day may bring a new crisis. And as everyone’s lives must go on, the life of the family member is in limbo; therefore, if the illness is extended, try to remember to make contact on a regular basis so that they will know that there are people to lean on while they remain strong for the patient.

POST-ARDS TIPS

This list was compiled by a group of ARDS survivors and family members who thought about things that were done for them, or they wished would have been done for them, when they finally got out of the hospital. Not everything will be right for you or your loved one; they are just suggestions of things that might make the transition from the hospital or rehabilitation facility back home, an easier journey. Congratulations for becoming another ARDS miracle.

Transition (Going Home)

1. Ask the Occupational and Physical therapist what types of therapy devices might need to be in the home.

2. Before you go home, measure the height of the toilet seat. Most are a standard 15 inches; some are 19 inches, and this difference will matter to a patient who is deconditioned.

3. Check the bathroom to see if there are any support bars for the patient to hold on to when using the toilet.

4. Make appointments with physicians prior to going home that you know you will need to make for follow up, such as with the pulmonologist, the ENT to check the trach incision, your internist, your thoracic surgeon. Try to set up out patient Physical Therapy and, if you get it, Occupational Therapy, so that you can begin as soon as possible.

5. Try to have any prescriptions that the patient will need filled for the patient prior to or when they arrive home.

Patient concerns

1. After spending such a lengthy time in the hospital, patient’s hair is dull, skin is dry. Help your loved one with a manicure, pedicure, general body pamper. Buy your loved one’s favorite shampoos, conditioners, body lotions, hand cream.

2. Loose clothing that is easy to put on and take off.

3. Shoes that would be comfortable for person who is newly homebound, be they gym shoes or flat, sturdy shoes to allow solid footing.

4. A Night Light-adjusting to being home after being in the hospital for such a lengthy duration of time takes time, and sometimes people will be staying in rooms other than their bedrooms, due to stairs.

Information Exchange

1. Every patient is different. Even if you think your loved one is one of those people who will want to know everything that has happened the second they come out of their coma, this might not be the case this time. Consider the fact that your loved on may be disoriented, confused, overwhelmed, and afraid. Too much information at one time is not always a good thing.

2. Some patients have memory and/or comprehension problems, making it difficult to take in too much at a time. Remember this and have patience.

3. Some patients have had very vivid dreams, feeling that they were so close to death and are not ready to “talk” about this experience, especially when they are still on a vent, and communication is so difficult.

4. Some patients find the communication issue so frustrating, they find that the recovery process is going very slowly, and to discuss what has happened to them is too much for them right now.

5. There will be some patients who, after recovering from ARDS, will never want to know too much about the syndrome, only the minimum. This sort of life threatening experience effects people in different ways, at different times in their lives. Some people will find, one or two years after coming home from the hospital, that this is the time they would like to learn more about the syndrome. If they need time to digest what has happened to them, give it to them. Everyone’s lives have changed as a result of the ARDS, but no one’s more than the survivor.

Friends & Family

1. When your loved one is coming home, make sure that the first couple of days are subject to restricted visits and restricted numbers of visitors.

2. Family and friends are understandably most eager to visit, but it can be very overwhelming and extremely taxing to deal with all the questions and hugs and kisses, although understood and greatly appreciated, the close proximity of many people can be exhausting at first. A bit of space and time is needed to readjust. Rest is badly needed at this time.

3. Provide a map of the neighborhood (Yahoo maps or Mapquest.com) with names of friends and phone numbers and addresses. It would be helpful to notify the neighbors about the person coming home, especially if the patient lives alone.

4. Coordinate efforts for people to cook and/or send food to the patient to minimize the amount of cooking that the patient has to, especially in those early days.

Personal Care

1. Extra Pillows are also a must, again from a breathing point of view. Propped up in bed a little is better than flat on your back. They also help when propped up on the sofa.

2. A doughnut cushion can be beneficial. For patients who have been in bed for weeks or months, it makes it easier, more comfortable, for sitting, and getting up.

3. Extra books and magazines. For some people who are finding it initially difficult to read, books on tape will be a nice change from the television.

4. A good supply of soothing Cough lozenges, or Chloreseptic spray, (Vicks, Bradasol etc). Most patients who have been intubated or had a trach, come out of the hospital with their throat raw, with nasty coughs, or both.

Special Support devices

1. A stool with wheels, to move from place to place around the house.

2. A portable commode, to keep near the patient’s bed at night.

3. Relaxation tapes to help patient relax and sleep; many ARDS survivors have a difficult time falling asleep or staying asleep.

4. Acquire a raised toilet seat.

5. Acquire a reacher. (Those things you use in OT to help you reach things and pick things up)

6. Acquire a tape recorder and portable CD player.

7. Get a book bag to carry stuff around. It helps if you walk with a cane for a long time. Also if you are hauling around oxygen.

8. Get a big calendar for the kitchen so all information regarding medications, doctor and therapy appointments can be posted. Being extremely efficient with schedule keeping is most important. Keep in mind, some post ARDS patients may have memory problems and will need help with keeping their schedules; this may become an issue regarding medication, especially if someone lives alone.

9. Find out which local stores have wheel chairs or Amigos and electric doors. This makes shopping easier for those who are not yet steady on their feet.

10. Contact a support group in your area for pulmonary concerns. Contact the local American Lung Association who should have that information. There are groups called “Better Breathers” where you can meet other people who are on oxygen. There are pulmonary rehab programs where there will be others on oxygen. Though most areas do not have an ARDS organization, there will be other lung related groups that can offer support.

Going out

1. A Cushion in a shopping bag. Some people lose so much weight that they find the seats in public places are so uncomfortable. Placing a cushion in a shopping bag was unobtrusive and helps to maintain some sense of normality and comfort until one can gain a sufficient amount of weight.

2. Many post ARDS patients do not look sick, even though they are seriously deconditioned, fatigued, weak, and disabled. It is difficult for those, especially the post ARDS patients who are in their twenties, thirties, forties, even fifties, where the only real sign of their ARDS might be a tracheotomy scar. Some don’t even have the scar. But they are still feeling the effects of this serious syndrome and when they go out and have to face remarks from strangers who wonder why they are in a wheelchair, why they have a handicapped placard, it can be very frustrating. Especially when no one in the general public understands ARDS.

Home Maintenance

1. Many people find being short of breath to be most distressing. Often, an inexpensive fan, with cool air blowing will helped people feel they are receiving more oxygen, but many find the psychological benefits to be tremendous.

2. Some people find that having the furniture raised up on to wooden platforms was helpful so that they could get up out of them. The platforms were probably about eight inches tall, and placed underneath the bed, a couple of the chairs, and the couch.

3. Replace the standard shower head with a handheld shower head. Since many people will be taking a shower sitting down, this will be easier.

4. Install shower bench or chair. Some are adjustable and can be easily set up or moved. Or get a step stool that can be placed in the shower to sit on while showering.

5. Move appliances that are used all the time down to the counter so they are easy to reach.

6. Take advantage of online grocery shopping and home delivery during your recovery time, especially if you live alone or live with one person who has to go back to work relatively quickly. Many grocery stores and general merchandise stores have motorized shopping carts as well.

7. Have phone jacks installed into different rooms in the house or invest in inexpensive cordless phones, at least one for each floor that you can keep with you at all times. They have them for about $19.99.

8. Have cable TV put in room where recovering person will be spending most of time. Unfortunately, in the weeks and months immediately following hospitalization, many post ARDS survivors find reading for long periods of time too taxing; they can only be physically active for so long, although, with work, each day, they will hopefully be able to extend that time period. Therefore, having a variety of television choices will make the person feel as though they are not just wasting their time in front of the TV. }

Click here: Multi-position Therapeutic Apparatus

Facts about ARDS

Below are some commonly asked questions about ARDS. 

  • What is ARDS?
  • What do we mean by lung function?
  • Then, what happens in ARDS?
  • Are there other lung conditions that can mimic ARDS?
  • Is ARDS common?
  • What causes ARDS?
  • What is my relative/friend feeling?
  • Is there any pain?
  • What can be done to treat the problem?
  • What are the most important complications?
  • What can we expect during the course of the syndrome?
  • What is the survival rate from ARDS?
  • What is the lung function of somebody who recovered from ARDS?
  • Is there a way for the family or friends to give
  • support during this illness?
  • What is ARDS?

What is ARDS?

Acute respiratory distress syndrome (ARDS) is defined as an acute process, which results in moderate to severe loss of lung function.

What do we mean by lung function?

The cells in the body need to have oxygen to perform all their normal functions. The respiratory system includes the trachea (windpipe), bronchi, and alveoli (air sacs). The alveoli in the lungs are responsible for supplying oxygen to the blood, which will deliver it to the cells of the body. The oxygenation of the blood is accomplished by a transport of oxygen from the inhaled air in the alveoli to the surrounding blood vessels. During this exchange of gases in the alveoli, carbon dioxide is brought to the lung from the blood to be exhaled as body waste.

Then, what happens in ARDS?

In ARDS there is intense inflammation of the lung tissue, which can be caused by a variety of factors. This inflammation in the lung results in a loss of function. The alveoli lose their ability to exchange oxygen and carbon dioxide with the blood. This loss of function of the alveoli is due to collapse of the air sacs and leakage of fluid (which is called edema) into the air sacs. This sequence of events can happen rapidly. It can start in one lung and advance to the other. If the inflammation persists over time, the lungs will eventually attempt to heal the damage, which results in the formation of scar tissue. The formation of scar tissue will continue to create a problem with gas (oxygen and carbon dioxide) exchange.

Are there other lung conditions that
can mimic ARDS?

Yes and this often is a challenge for the physician. Pneumonia (infection of the lung), when severe, can have a similar presentation to this syndrome. Congestive heart failure (caused by a decrease in the pumping strength of the heart) can be confused with ARDS due to a collection of fluid in the air sacs but without the alveolar damage caused by ARDS. These disorders require different treatments and therefore often further tests and diagnostic procedures are often needed to help the physician identify the condition causing the problem.

Is ARDS common?

There are about 150,000 cases reported per year in the US.

What causes ARDS?

New causes of ARDS are continually being reported with more than 60 different causes having been indentified already. This means that there is still a lot of information that we don’t know and there is a continuing need for further research.

The most common causes of ARDS are pneumonia, sepsis (an overwhelming infection in the body), aspiration of fumes, food or stomach contents into the lung, and trauma. These conditions cause the body to manufacture substances that may cause inflammation in the lungs. Once inflamed, the alveoli (air sacs) are then unable to perform the normal oxygenation of the blood.

What is my relative/friend feeling?
Is there any pain?

Because ARDS results from many different causes, the symptoms can be variable. Some of the most commonly expressed are shortness of breath, cough with white/pink expectoration, and fatigue. Also important are the symptoms associated with the possible triggering cause of the disease. Examples of these include:abdominal pain in pancreatitis; fever, cough, and breathlessness in pneumonia; chills and lightheadedness in initial severe infections. After the patient is diagnosed, supportive treatment will be started or continued. Proper treatment includes pain control and sedatives to keep the patient calm and comfortable.

What can be done to treat the problem?

At the present time, no specific therapy exists to treat this disorder. The treatment is mainly supportive care in the intensive care unit. Many of the patients will require mechanical ventilation and oxygen therapy. The ventilator is a machine which assists the patient’s own breathing and helps support the delivery of oxygen to the cells. The patient is connected to the ventilator by a tube, which goes through their mouth or nose to the windpipe (trachea). This tube (referred to as an endotracheal tube) passes through the vocal cords and thereby makes it impossible for the patient to speak. The patient is closely monitored in the ICU and frequent adjustments are often made to the ventilator to make sure that adequate oxygenation is occurring.

With mechanical ventilation, the patient must be kept in a comfortable, relaxed state. This is often achieved with the use of sedatives and pain medication. In severe cases of ARDS, it is often necessary to paralyze the patient for a short period of time to achieve adequate oxygenation. If the underlying cause of the syndrome can be identified, treatment is instituted to correct this problem. Treatment may include antibiotics, immunosuppressants, blood pressure supporting medications, tube feedings, and diuretics, which are used to reduce the fluid in the lungs.

What are the most important complications?

A number of different complications can occur with ARDS. Secondary bacterial infections are a common complication and contribute to continued lung injury. It is often difficult to diagnose a secondary bacterial infection in the lungs since the underlying chest x-ray is already abnormal due to ARDS. Often secretions from the lung are sent to the laboratory for bacterial analysis. These secretions can be obtained either by the nurse or respiratory therapist suctioning the patient or by a special procedure called a bronchoscopy. In a bronchoscopy a physician inserts a thin tube in the lung. This procedure is often done to obtain secretions from deeper in the lung and to allow for direct visualization of the airways.

Infections may also occur in other parts of the body such as the bloodstream, urinary tract, sinuses, skin, or gastrointestinal tract. These infections are usually discovered due to symptoms such as pain or increased temperature, which would then lead the physician to perform additional testing. Appropriate treatment, such as antibiotic therapy or drainage of the infection would routinely be instituted when infections are diagnosed.

Trauma to the lungs due to mechanical ventilation can also occur. The lungs are already weakened due to their diseased state and the additional stress caused by the ventilator to maintain adequate gas exchange may result in rupture of one of the alveoli. This results in a condition called pneumothorax, which will require the insertion of a tube into the chest to prevent or reverse lung collapse.

As discussed earlier, there are often multiple causes which lead to the development of ARDS. These underlying problems may also result in a lack of sufficient oxygen to the other organs of the body. Over time these organs may suffer damage due to the lack of adequate oxygen. The organs most frequently affected include the kidney (acute renal insufficiency), the heart, the liver (liver failure or shock liver), the brain, and the blood. Damage to these organs may complicate the care of the patient and require additional treatments.

What can we expect during the course
of the syndrome?

This is difficult to predict. Most of the patients need ventilatory assistance for a minimum of several days, and often weeks. The severity and progression of the injury determine the degree of support. Other factors that may influence the course of the syndrome include age or the presence of underlying health problems. Young, previously healthy patients often recover well and the lung injury heals rapidly. However, patients with older age or underlying health problems may have a more severe course of illness. Further deterioration of their vital organ function and an inability to tolerate the organ damage may result in death.

Some patients are able to survive from the serious complications, but continue to have slow healing of the lungs requiring prolonged mechanical ventilation. These patients usually need to have a different type of tube placed to facilitate prolonged mechanical ventilation. This type of tube is called a tracheostomy and requires a surgical hole to be placed in the patient’s neck. This tube is more comfortable and allows for a more stable airway as the healthcare team works to free the patient from the ventilator. The recovery of these patients is much slower and requires careful, vigilant care to prevent any further complications during the recovery phase.

What is the Survival Rate from ARDS?

Recent data show that about 40% of patients die from ARDS. These statistics have vastly improved from a 70% mortality reported in the past. Increased awareness, better understanding of the disease process, better control of the ventilator, and improved diagnosing and therapy have been responsible for the improvement in survival.

What is the lung function of somebody who recovered from ARDS?

Recovery can be complete in ARDS survivors. The majority of patients have full recovery of lung function. The rate of recovery often depends on the individual patient. For some patients, there continues to be feeling of shortness of breath, fatigue, continued cough, or a continued need for oxygen therapy, which usually abates within the first year. Further follow-up after discharge is required so the physician can perform specialized tests to monitor for improvement or worsening of lung function.

Is there a way for the family or friends to give support during this illness?

Family and friends are critical in order to maintain the well being of the person suffering from ARDS. It is important for the family to act on behalf of the patient to work with the healthcare team in making decisions regarding treatment. To facilitate decision-making, the family members or friends need to interact with the healthcare team, ask questions, and read about the disease.

Most importantly, the family and friends should be present for the patient and attempt to impose a positive feeling. Try to assure the patient that you are there for them and are acting to provide the best possible care for them. Even patients who are sedated or paralyzed can often understand what is being said to them and these assurances by loved ones can help decrease their anxiety. You may want to record what happens on a daily basis so that you can answer questions that the person may have after recovery.

It is also important that you remember that this is a serious condition and that many people die from ARDS and it complications. Therefore, make sure you understand what is happening. Don’t be afraid to ask questions and seek clarification. This helps to create an environment of trust and support between the patient’s family and the health care team. Having everyone working together towards the patient’s recovery makes the process proceed smoothly.

Acute Respiratory Distress Syndrome Information

Acute Respiratory Distress Syndrome (ARDS) is an acute process, which results in moderate to severe loss of lung function.

In ARDS there is intense inflammation of the lung tissue, which can be caused by a variety of factors. This inflammation in the lung results in a loss of function. The alveoli lose their ability to exchange oxygen and carbon dioxide with the blood. This loss of function of the alveoli is due to collapse of the air sacs and leakage of fluid (which is called edema) into the air sacs.

This sequence of events can happen rapidly. It can start in one lung and advance to the other. If the inflammation persists over time, the lungs will eventually attempt to heal the damage, which results in the formation of scar tissue. The formation of scar tissue will continue to create a problem with gas (oxygen and carbon dioxide) exchange.

  • ARDS presents within 12-24 hours of antecedent event
  • ARDS patients intubated within 72 hours in 90% cases
  • High mortality rate (ICU: 37%, overall: 42%)
    • Predictors of better prognosis
    • Those who survive acute respiratory distress syndrome in the first 2 weeks have better prognosis
    • Age under 55 years
    • Trauma related to acute respiratory distress syndrome
  • Predictors of poor prognosis
    • Elderly (especially over age 70 years)
    • Immunocompromised patients
    • Chronic Liver Disease
    • Increased dead space fraction
  • Only 34% of ards survivors are well enough to be discharged directly home
  • ALI/ARDS leads to approximately 2.2 million days in the ICU

Possible Precipitating Causes

  • Shock
  • Severe blood loss
  • Bone fractures – if they cause shock.
  • Severe infections
  • Bacterial lung infection
  • Viral lung infection
  • Fungal lung infection
  • Lung trauma
  • Drowning
  • Water inhalation
  • Vomit inhalation
  • Pneumonia
  • Sepsis
  • Poliomyelitis
  • Blood transfusion adverse reaction (type of Adverse reaction)
  • Heart bypass surgery adverse reaction (type of Adverse reaction)
  • Smoke inhalation
  • Toxic fume inhalation
  • Circulatory collapse
  • Sepsis
  • Asthma
  • Emphysema
  • Muscular dystrophy
  • Pancreatitis
  • Guillaine-Barre syndrome
  • Uremia
  • Myasthenia gravis

According to the NHLBI:

  • Incidence (annual) of Acute respiratory distress syndrome:

150,000 Americans will be diagnosed with acute respiratory distress syndrome each year

  • Incidence extrapolations for the United States of America for Acute respiratory distress syndrome:

150,000 per year
12,500 per month
2,884 per week
410 per day
17 per hour

Acute respiratory distress syndrome by country (Extrapolated Statistics)

Country/Region                                      Extrapolated Incidence                                            Population Estimated Used
USA                                                                            161,942                                                                                         293,655,405
Canada                                                                      17,927                                                                                           32,507,874
United Kingdom                                                    33,237                                                                                          60,270,708
France                                                                       33,322                                                                                           60,424,213
Greece                                                                       5,871                                                                                             10,647,529
Germany                                                                  45,454                                                                                           82,424,609
Ireland                                                                      2,189                                                                                              3,969,558
Italy                                                                           32,016                                                                                           58,057,477
Netherlands                                                           8,999                                                                                              16,318,199
Poland                                                                      21,301                                                                                            38,626,349
Spain                                                                         22,213                                                                                            40,280,780
China                                                                         716,276                                                                                         1,298,847,624
India                                                                         587,355                                                                                         1,065,070,607
Japan                                                                       70,220                                                                                            127,270,708
Philippines                                                             47,559                                                                                            86,241,697
Bangladesh                                                             77,945                                                                                            141,340,476
Thailand                                                                  35,771                                                                                             64,865,523
Russia                                                                      79,397                                                                                             143,974,059
Australia                                                                10,981                                                                                              19,913,144
New Zealand                                                         2,202                                                                                                3,993,817
Afghanistan                                                           15,725                                                                                              28,513,677
Egypt                                                                       41,976                                                                                              76,117,421
Israel                                                                       3,418                                                                                                  6,199,008
Saudi Arabia                                                         14,225                                                                                              25,795,938
Turkey                                                                     37,992                                                                                             68,893,918
Mexico                                                                    57,882                                                                                              104,959,594
Brazil                                                                       101,526                                                                                             184,101,109
Puerto Rico                                                          3,418                                                                                                   6,199,008
South Africa                                                         24,512                                                                                                44,448,470

Population estimates based upon US Census Bureau, Population Estimates, 2004 and US Census Bureau, International Data Base, 2004

ARDS Support Meetings

We offer support in many ways:
  • in person (meetings, conferences)
  • online (Website)
  • via phone
  • social media (Facebook, Twitter)
When we have a quorum, we offer support meetings. These are held the first Monday of each month at 3330 Dundee Road, Suite C4, Northbrook, IL 60062…  please notify us if you would like to attend.
If you would like to create a support meeting in your region, we will work with you to facilitate the creation and publicity of such a meeting.

 

Frequently Asked Questions ARDS (Acute Respiratory Distress Syndrome)

DID YOU KNOW.

There are more cases of ARDS than breast cancer each year?

More people die from ARDS than breast cancer?

There are more cases of ARDS than AIDS in the US every year?

Far more die from ARDS than AIDS?

You cannot live with ARDS; you either live through it or you die.

Right now, there is no known prevention and no known cure.

Anyone can get it men, women and children.

What is ARDS?

ARDS Acute Respiratory Distress Syndrome is an acute illness that results in moderate to severe loss of lung function.

What causes ARDS?

The most common causes of ARDS are pneumonia, sepsis (an overwhelming infection in the body), aspiration of fumes, food or stomach contents into the lung, and trauma. These conditions cause the body to manufacture substances that may cause inflammation in the lungs. Once inflamed, the alveoli (air sacs) are then unable to perform the normal oxygenation of the blood.

New causes of ARDS are continually being reported with more than 60 different causes having been identified to date. Consequently, there is a dire need for continuing research as the medical community has barely scratched the surface in collecting and analyzing the relevant information.

Is ARDS common?

There are about 150,000 cases reported per year in the US.

WHAT ARE THE SYMPTOMS of ARDS?

Because ARDS can result from so many different causes, the symptoms can vary. Some of the most common are shortness of breath, cough with white/pink expectoration, and fatigue. Also important are the symptoms associated with the possible triggering causes of the disease. Examples of these include abdominal pain in pancreatitis; fever, cough, and breathlessness in pneumonia; and chills and lightheadedness in initial severe infections.

ARDS symptoms are so similar to pneumonia and congestive heart failure that diagnosis poses a great challenge to the physician. It is crucial that ample testing is performed to distinguish between these diagnoses, as each requires very specific treatment.

A number of different complications can occur with ARDS. Secondary bacterial infections are a common complication and contribute to continued lung injury. Infections may also occur in other parts of the body such as the bloodstream, urinary tract, sinuses, skin, or gastrointestinal tract. Trauma to the lungs due to mechanical ventilation can also occur. All of these symptoms must be treated on a case-by-case basis.

HOW DO YOU TREAT ARDS?

At the present time, there is no specific treatment for ARDS. Generally, however, patients require varying lengths of hospitalization, most often in the intensive care unit for help with breathing through a ventilator (oxygen therapy). Additional forms of treatment may include antibiotics, immunosuppressants, blood pressure supporting medications, tube feedings, and diuretics, which are used to reduce the fluid in the lungs.

After the patient is diagnosed, supportive treatment will be started or continued. Proper treatment includes pain control and sedatives to keep the patient calm and comfortable.

WHAT ARE THE POSSIBLE COMPLICATIONS FROM ARDS?

The underlying medical conditions that lead to ARDS often cause major trauma to other organs. The organs most frequently affected include the kidney (acute renal insufficiency), the heart, the liver (liver failure or shock liver), the brain, and the blood. Damage to these organs may complicate the care of the ARDS patient and require additional treatments.

What is the Survival Rate from ARDS?

Recent data show that about 40-50% of patients die from ARDS. These statistics have vastly improved from an 80% mortality reported in the past, when first described in 1967. Increased awareness, better understanding of the disease process, better control of the ventilator, and improved diagnosing and therapy have been responsible for the improvement in survival.

The severity and progression of the injury determine the degree of treatment. Other factors that may influence the course of the syndrome include age or the presence of underlying health problems. Young, previously healthy patients often recover well and the lung injury heals rapidly. However, patients with older age or underlying health problems may have a more severe course of illness. Further deterioration of their vital organ function and an inability to tolerate the organ damage may result in death.

What is life like after ARDS?

Recovery can be complete in ARDS survivors. The majority of patients have full recovery of lung function. The rate of recovery often depends on the individual patient. For some patients, there continues to be feeling of shortness of breath, fatigue, continued cough, or a continued need for oxygen therapy, which usually abates within the first year.