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,
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
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
Warmest regards and our love,