Answers to many of your questions can be found in the "Learn About ARDS" section of our website.  We are currently working on a search engine that will make finding answers to your questions much easier.  Please be patient.  If you are unable to find an answer to your question please do not hesitate to contact members of the support staff listed below,  who will help you in any way they can.  If you would like to discuss what you are going through with someone else who has had a similar experience please select two of the support staff members who will be able to offer support and understanding.

The volunteer staff at the ARDS Support Center listed below have a short biography page along with their email address.  It is always easier to communicate with others if you have a little background about them and what they have been through during their ARDS situations.

ARDS Support Center Co-Founders

John Grim  
1942  Mike Paul  2000
Sue Peterson  

 

 

 

Support Staff

Ken Jonah (Member, Board of Directors, President, Secretary)
Wendy Jonah (Chief Financial Officer)
Linda Root 
Jon Doughtie 
Ted Hoffman 
Connie Davis 

 

 

Below you will find  a letter written by one of our support staff. This is a fine example of the type of correspondence you may receive. Many thanks go out to Don Hartford for sharing this letter with us!

My name is Don Hartford and my precious wife Carlene, is an ARDS survivor. (ARDS 3 times from 14 April 1999 to 10 September 1999 in Maine Medical Center, Portland, Maine) 

You are welcome to read Carlene's story by clicking here. There are also many other wonderful personal stories to read.

The most important thing I can point out to you is that no matter how things look at this moment, they can turn around quickly. ARDS, by its nature, takes the patient for one heck of a "roller coaster" ride. And in doing that, of course, you are along for the ride.

The first thing I would like to mention is that an ARDS patient is usually in ICU or SCU for an extended amount of time and if they are not already on an "Air Mattress", I recommend that you inquire about one. They do a great job in protecting the body from "bed sores" and help to keep the skin in remarkable condition.

Your loved one may be intubated and on a ventilator at this time. If so, an obstruction in the mouth can be bothersome to anyone. After a week or two, the doctors may want to do a tracheotomy. Don't be alarmed, this is very beneficial in many ways. It can prevent injury to the jaw that can occur from biting down on the tube. It will minimize the probability of oral infection and it is much better for the patient overall. The scar usually heals over quite well. I have heard that many consider it a "Badge of courage". Rightfully so.

Being on a "ventilator can be difficult for some one who is awake and wants to breathe at their own pace. If they do, it may often sound the ventilator alarms giving false indications of something being wrong. This takes time away from what the medical staff has to do. In order to prevent them from "fighting" or trying to breathe at their own pace, a patient is often sedated and subdued with paralytics so that they may get the maximum benefit from ventilation.

As your loved one becomes embraced in the "sleep like" state, they may not remember most of what has happened when they come out of this. They may not even remember much of what happened prior to going to the hospital. Understandably, the chances for survival vary with the severity of the illness and the health of the individual. I prefer to keep things positive. There will be good days and bad days, but at all times, you must be positive. If you are or are not religious, don't hesitate to call on the power of prayer. Often, your friends will gather with their friends in a prayer rally. These wonderful people help to perform miracles. And by all means, call upon the Lord. He certainly loves you.

I recommend that all things be positive in your loved ones room. Cleanliness is very important and I recommend that all visitors wash up before going into or touching anything in the room. Doctors acknowledge its importance.

Sometimes patients respond badly to talking or touching and monitors indicate this. But, I believe the best medicine is talking to your loved one to let them know you are with them. Keep the conversation low key and friendly at all times. Tell them what has been going on with you. Give them something pleasant to think about. You know what pleases them. Have a nice and soft conversation with them.

Many patients have said that they remember hearing conversations that were carried on while they were sedated. Don't hesitate to ask the staff, if they wouldn't mind, to discuss procedures outside of your loved one's room. As you talk to your loved one, gently rub their hands and feet and apply therapeutic lotion. I even applied Vaseline and "medicated chapstick" to my wife's lips to keep them from drying. Caress their arms or touch their face and let them know you that you are there for them. Put up pictures where they can see them when they come out of their slumber. If they are not hard of hearing, I would encourage you to play soft music for them. Something that you know they will enjoy. Music that is soothing and pleasant can be very comforting and relieve stress.

If you feel uncomfortable with the doctor's knowledge of ARDS, ask them if they would go to the ARDS website for information. They could even communicate with very specialized physicians. There are many informative articles excerpted from very respected medical journals to which they could refer.

I wrote an 80-page journal for Carlene. I wanted her to know what happened in detail. It tells her everything that went on throughout her ordeal, complete with several pictures of her progress. She has difficulty believing that she went through all of that. It just gives credence to the statement that it is generally more difficult for the family than the patient. I also did it out of necessity so that I could maintain my rationality, (keep my cool). I found it comforting to learn what was going on through my daily procedure of taking notes on everything that was going on, i.e., the nurses on duty that day, the doctors visits, her status, the names of the CRTs, the vent changes and even the drugs that were administered.

Pray and remain positive. Don't give up on your loved one. Don't forget to take good care of yourself. You are very important also. Eat and rest well.

I will close for now, but I want you to know that we all care very much about you and your loved one. I shall pray for God's blessings for all of you and that your loved one shall be spared.

If you have any questions, please call on the ARDS Support Center.

God be with you and yours at this time.

Warmest regards and our love,
Don Hartford
Sanford, Maine