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Children and ARDS
Foundation
Views Past Correspondence
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Message to the ARDS Community July 2008 Eileen Zacharias Where Is The Passion Voice of the People, Chicago Tribune (Letter) Front Page News ARDS Never Stop Talking and do Something Just Get Up and Walk Things That Make You Remember It Might Happen to the Them Those Who Give Support Need Help, Too... "A
Positive View" "ARDS Awareness Month" "The
Dreaded Family Meeting"
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In a Split Second I am a survivor, but of what? HEADS UP ARDS Medical Controversy A Four Letter Word No Child Wants To Hear Thoughts from an ARDS survivor, upon embarking
on a In Memory of.... Seven years later.... "Hope and Despair" "We are sad, not resentful" |
Just this week, it happened again... Another family, with a loved one in ARDS crisis who was told that there was no hope and they needed to make that decision regarding life support termination...
At the ARDS Foundation, we have come to term this very serious topic as the "Dreaded Family Meeting" and there have been many emails and message board discussions by the families of those in ARDS crisis regarding how to handle the issue, when approached by staff at the hospital to discuss this issue. Sometimes families tell me that they feel as though they are "ambushed" and they describe it as such because often the pretense of the meeting is to discuss the current course of treatment, but the meeting quickly disintegrates into a conversation solely discussing termination of life support and quality of life issues. Usually, the family feels broad sided, having no idea that this discussion was coming...or that it was coming so soon. Perhaps there are those who believe that the family is in denial but where half of those who survive ARDS and once were expected to die, too, it is not a wholly unreasonable.
Since volunteers at the ARDS Foundation are not medical professionals, we only approach the issue from one of a personal perspective; we urge families always to gather as much information as possible and we offer our own individual perspective based upon what happened when we were ill with ARDS. Not medical, but personal.And, as I said, it happened again, just last week.... On February 12, 2003, a family who had been corresponding with me wrote me to ask about this issue of removal of life support and these very serious questions. They were told by the doctors that their loved one had stopped responding to the EEG and indicated she was brain dead; the physicians followed up with an MRI and they were already discussing organ transplant options with this woman's family.
After this email, on February 12, 2003, I did not hear from the family for more than two weeks, and assumed that this woman had passed away after being removed from the ventilator; then, in early March, I received an email with shocking news: their loved one was now awake and smiling, nodding, reading lips and beginning weaning from the vent. She would be transferred to a rehab facility soon.
This is not the first time that we at the ARDS Foundation
have heard a story such as this. Nor is this the first time that families
have been told that their loved ones would likely suffer brain damage
if they lived. I am one such patient who had that prediction during my
"dreaded family meeting." It is for this reason that at the
ARDS Foundation, we believe strongly in offering hope.
We feel a bit odd when people write to us on these subjects, knowing that when they return to the hospital, they might be looked at with skepticism, even cynicism. We admit that we are not working off of science or medical expertise; all we have to go on story after story of those who have survived their ARDS, despite daunting odds. And every ARDS survivor will tell a strikingly similar story: that there doctor said that they were extremely close to death, maybe several times, but somehow they survived and now their doctor calls them their miracle patient.
We try to tell families something else: That while every ARDS case is critical, somehow, half of us manage to survive. Is that because of prayer, family dedication, patient will power, hope, support, or just plain miracles...we don't know? It is very important to ask many questions, to get as much information as possible, and to know as much as you possible can about acute respiratory distress syndrome before making any irrevocable medical decisions. Without offering false hope, it is our goal to offer a realistic view of what others who have dealt with ARDS have experienced, be they survivors or those who have lost a loved one to ARDS. To be sure, there are those at our foundation with a perspective on both sides of this important issue and to that end, a dialogue was opened up on our message board so that others, when faced with this issue, could see what others had to say:
http://www.ardsil.com/cgi-bin/ubbcgi/ultimatebb.cgi?ubb=get_topic&f=1&t=000012
While we know that unfortunately half of those who get ARDS will not survive, we also know that the half that do, are not expected to survive either. If they have the support, the hope, the prayers, along with information about ARDS, to give them and their families hope that a miracle might just happen, then maybe, just maybe, they will end up on the right side of the percentages.
Perhaps, this is an issue that should be open to discussion among those in the medical community. I, for one, not being an especially spiritual person prior to my ARDS episode, have to take into account that there must have been something that played a role in my survival, my recovery, perhaps beyond medicine when my own physicians had told my family that they were certain after two weeks, chances were so slim I would survive, that they had my family meeting to discuss removing me from the vent, at thirty-three years old, a quality of life issue, they said. I do not doubt how critically ill I was, as my pulmonologist told me I almost died on five separate occasions, being his sickest ARDS patient, and my neurologist told me that I am the sickest patient who he has had who has lived. But I did live, and I am fine, with very little post ARDS medical concerns.
After hearing from so many who have endured these meetings, perhaps this very difficult issue needs to be discussed. In the end, no one wants their loved one to suffer needlessly if the end result would still be sever brain damage or death, but no one wants to give up hope in light of the many who have lived. What are your thoughts on this weighty issue?
Eileen Rubin Zacharias
President, ARDS Foundation
In a Split Second
February 28, 2003
Eileen Zacharias
On January 31st, I awoke early and the film Regarding Henry was just beginning on HBO. Years ago, I had seen this 1991 Harrison Ford-Annette Benning film. Years ago, before ARDS. For those of you who have never seen the movie, it is about a high powered, arrogant lawyer who is nasty to his only daughter, who hardly knows him, rude to the support staff at work, cannot be bothered with the pleasantries of 'hello' or 'good bye' to the door man at his ritzy New York building. He works hard and he parties harder.
After winning a lucrative litigation case, he drops home briefly to berate his daughter, by punishing her to her room for the night and later, when his wife suggests he apologize, he never quite knows how to find those words: "I'm sorry." He dances around them, and his daughter knows, simply, that he is not.... And off he goes to his event, without another thought. But later that evening, Henry realizes he is without any cigarettes; so he ventures out, late at night, for a pack and interrupts a robbery in progress. Even then, when the crook demands his money, he is inpatient. "Give me your wallet," the robber orders. Henry has gotten in the way of the bad guy's plans for the evening. But Henry, he is still annoyed.
And so, Henry gets shot.
Twice.
And in a split second,
Henry's life is forever changed. In a split second. In a split second, Henry's life is forever changed just like the life of one who has been touched by ARDS. Regardless of the precipitating cause, those who are affected by ARDS, for the most part, one minute are breathing on their own, and then, in a flash, on life support. In a split second.
Lives that are changed forever. Patient's lives, their families, their friends. In a split second....
As the story moves on, much like the story of an ARDS patient, with ups and downs. People are immediately at the hospital, offering their support. But as days turn into weeks, the people stop showing up as they return to their own lives. Those who say they are friends, fail to think about the financial strain of a family with someone who is in the hospital for weeks, months or longer in the hospital. They assume that everything is OK or that the person will not be too proud to say something if it was not. They assume that someone like Henry will have money put aside for such unforeseen difficulties. But how many people do?
And as the story progresses, when Henry awakes from his coma, he awakes as we ARDS patients do... not walking and talking as some of those Hollywood stories might have the public believe, but with many problems, many issues of concern. Henry must painstakingly learn to walk, talk, and even read again. Just like many ARDS survivors must do when they have lost not only their physical ability but also some of their cognitive abilities.
And something else... Henry is a different person... his entire personality has changed. As he begins to get healthier, as he builds trust with his caregivers, Henry is fearful of going home. How many ARDS patients felt safer at certain points at the hospital, than going home?
And where Henry once was arrogant and cruel, he eventually becomes generous, kind, and loving. And there is an entire scene in the film where all of Henry's old friends and coworkers are talking about him at a party, and the whispers begin, "Henry is an imbecile," they say, "how sad for her {Henry's wife}, she has two children now...." "he will never be the same."
When I was watching this movie, what struck me is how it seemed to mirror what I often tell people who get "stuck" after surviving ARDS, because they feel that their life will never be the same. But what they fail to see and I always try to reiterate is that when someone goes through something like ARDS, that life after ARDS may be different, but that different is not always bad, and eventually it will get better. And maybe even be good. ARDS recovery is not easy, it is at times frustrating but then again life is not always easy and many people find that their ARDS experience is often an awakening.
And there are quite a few people who I have spoken to who have told me that the people that they have become, since their ARDS experience, are in the end, better people, more well rounded, better to their families and friends, more complete. Even if they are not as strong, not as smart, not as rich.... They may be kinder, thinner, more generous with their time and compassion. They may try to take better care of themselves and of the ones that they love. And even if they lost some knowledge along the way, they are much more knowledgeable about their health and health in general.
Some people will find that they did not necessarily like the person that they were, before a life-changing event as major as ARDS. They may find that, in time, they like the person that they will become, better. And because every day, post ARDS, may have become a struggle, it just might take some people longer to realize that they really like the person they have evolved into. Thus, their epiphany certainly will not happen immediately, but will take time and patience; something many of us will have had to learn.
Likewise, in the end of the movie, Henry does become a better person...He does the moral and ethical thing. And he ends up poorer, is not quite so sharp, but he finds his family and he finds himself. Remember, it is a Hollywood story. Or is it?
I am a survivor, but of what?
January 20, 2003
Eileen Zacharias
n 1995, I was diagnosed with Adult, now called Acute Respiratory Distress Syndrome, after experiencing excruciating lower back pain that then moved five days later into my lungs created difficulty breathing. I spent eight weeks on a ventilator, four in a coma, and certainly beat the odds, as at least half of the estimated 150,000 US citizens who get ARDS yearly, do not survive
I am a survivor, but of what? I say this because when people ask me what caused me to be so ill, and I begin to explain, their eyes glaze over. They had seen me in the hospital for weeks, even months, in a coma, hooked up to countless machines and heard the explanations by my doctors, nurses, family and friends, hell, sometimes they are even my family and friends, and I can still see it in their eyes.... the blank stare and the thought behind their eyes: this is not something that will ever happen to me.
Sometimes when I tell people about ARDS, their eyes brighten and they begin to perk up: "I had an uncle, he went into the hospital for a hernia operation...had some problems with his lungs and then, he was suddenly on life support and never got out alive. I bet he had what you had." Other people might say, "Is that what Jim Hensen had? That was so sad." I will follow up with that fact that Dick Schaap, the sport's personality, died from ARDS after fighting for nine weeks with acute respiratory distress syndrome following his hip replacement surgery, and I find that almost no one will have heard about that fact.
In a day and age where our media is almost everywhere, network television news, cable news, online news, radio, newspapers, cable health shows, it seems almost impossible to believe that a syndrome that affects over 150,000 people a year in our country, killing half of them, would still be virtually unheard of;
The million dollar question is why would a syndrome that kills more people each year than breast cancer and AIDS, in the United States, still be unknown?
Why would those in the media be responding similarly as my family and friends. Those dumbfounded looks. Perhaps, it's not their fault. Maybe they don't get it either. One reporter told me that it was difficult to explain ARDS to the masses. I was doubtful, but if patients, families who have lost loved ones, medical professional do not explain it better to those in the media and those on Capitol Hill so that other people can comprehend our immeasurable battle, and our immeasurable loss!
So, what is the definition of Acute Respiratory Distress Syndrome? It is a sudden, life threatening, lung failure, often called shock lung, white lung, or wet lung. Mechanical ventilation, or some other form of assisted breathing devise is required, because without it, the patient would not be able to live. ARDS occurs after a precipitating cause, sixty have been identified, and anything from infection to trauma, and it comes on within 24-48 hours of the initial insult. ARDS can strike men, women, and children without warning. There is not prevention and no cure. A person cannot live with ARDS. One must live through ARDS, or die.
The number of people who are diagnosed with ARDS each year in the United States is staggering. So, is ARDS too frightening to report to the masses? Is it the fact that currently it appears there is little hope? What could be the reason that no one is letting the public know about this syndrome that affects so many Americans every year?
There was a time when people lacked comprehension of other diseases or syndromes, but now, when people hear the names of those ailments, they innately understand the treatments involved. No one has to explain. But ARDS...ARDS is more illusive; still, it is not impossible and those who have endured ARDS should not feel resigned to those faces devoid of comprehension.
As a large population devastated by this syndrome, survivors and families who have lost a loved one, we are equally deserving of the attention by those in Washington and those in the media. Without the publicity and media attention that these other illnesses, syndromes, and diseases obtain, ARDS will never be able to get the funding needed to sufficiently research the essential questions that all survivors are asking: "Why did this happen to me?" Worse yet, the families of those who lost a parent, sibling or child, are left with that burning question, "Why?"
The more attention that ARDS can garnish, then the more funding this syndrome might be able to raise for research, and then, perhaps, these deaths, which total about 75,000 a year in the United States will not have been for naught. For each patient that the medical professionals send off to rehab, they send another one to the morgue.
And that is our challenge. I am a survivor. I wear that label proudly.
But I would be happier if others knew of what I had survived. Eileen Rubin Zacharias
President, ARDS Foundation
HEADS UP
by Dee Storey
January 15, 2003
It's been three weeks since my operation for tracheal resectioning. I received wonderful care at the U of Michigan Hospital.
I read up about tracheal resectioning. The night before my surgery I spoke with someone who had had the same surgery at Mayo Clinic. This person told me that the post-surgery week was the worst in her life, but that her life after surgery was so wonderfully improved, that one week of supreme misery was well worth the pain and suffering. I was glad that I had a chance to talk to her before I went off for my surgery. Yes, knowledge is power.
I remember waking up in the surgery room. I recall the surgeon telling me that he had stitched my chin down to my chest so that I would not yank my head around, possibly disconnecting my resectioned trachea. I remember telling him that he had said he was not going to stitch down my chin. Promises, promises...
I also remember my surgeon telling me that it was so good to hear my voice. My voice indicted that my vocal cords were intact and working. Hmmmmm. That made the situation sort of like a good new/bad news situation. So, I learned how to cope with having my chin stitched down to my chest.
I have a lot of memories about being in the hospital. I had a lot of fears about having surgery and being in a hospital after my lengthy hospital stay when I was in ARDS crisis. This time around, doctors and nurses knew about my ARDS background. It was not unusual for me to hear "Ahhhh...you survived ARDS. That's really something!" I began to feel that if I could survive ARDS, I could survive this first week after surgery! My health team did a great job with my pain management so that also helped me think I would survive my current problems.
I will never forget my first walk down the hall! I was so amazed at how easy it was to breathe! Scar tissue had formed in my trachea after I was intubated during my ARDS crisis. My breathing was really hindered due to this scar tissue. I sounded much like Darth Vader when I inhaled and exhaled. However, during my first walk, I did not have to struggle to breathe! I somehow forgot about my chin. I somehow forgot about only being able to look at the floor when I walked. I somehow forgot about how afraid I was to be in the hospital again. I could breathe without the struggle.
Recovery after the hospital is being made very possible due to my friends and neighbors! I was very intimidated about going home alone after surgery in that I did not have family who could stay with me after the surgery. I stayed with a friend and her family for the first three days. When I went home, friends and neighbors called me and visited me several times a day. Food appeared. Snow magically got shoveled. Grocery shopping got done. My friends and neighbors made a difficult situation very possible. I have certainly learned that there are many wonderful people out there! My friends and neighbors have taken extra steps to make my recovery successful. I've laughed. I've complained. I've struggled. Throughout it all, I did come to find out that I am surrounded by some really thoughtful, caring, and helpful people.
I am constantly reminded about my post ARDS journey. It's an ongoing journey fueled by support. The support has been what has helped me continue to look forward to the future.
And today, I learned that I could now lift my chin. WOW! I will be able to carry my chin at a 90-degree angle to my neck. This is cause for celebration. I have been warned that this will be painful because I have been looking down for three weeks. So my recovery will be entering a new phase; a phase that I will learn to handle with the help of my friends and neighbors.
As a Pastor Ian Robb says:" The Task ahead of us is never as great as the Power behind us!"
ARDS Medical Controversy
by Eileen Rubin Zacharias
December 21, 2002
Dear Friends,
I am writing this letter due to the recent controversy in the ARDS community that threatens to endanger much of the major advances that have occurred with the limited research into acute respiratory distress syndrome.
There are several reasons that I have taken it upon myself to write this letter. One on those reasons is because on a daily basis, I receive emails and phone calls from families who are desperate for information regarding what research is going on that might save their loved one, who is in ARDS crisis, what drug trials are being done, and at what hospitals are they being done. I have been asked to find specialists in many states, and I have been asked to help patients get transferred to other medical facilities if a transfer is medically possible.
Another reason that I am writing this is because as an ARDS survivor who was ill over seven years ago, the only treatment available to me that was considered experimental at that time, was steroids. There were no medical trials; there were no experimental drugs that I would be given. There was no ARDS Network.
Now there seems to be this focus, not on ARDS, which has affected so many of us in many horrendous ways, but on halting the clinical trials that are being done for ARDS patients by a small group of people (including a self appointed public watchdog group) who claim that they are acting in the best interests of people like us, ARDS patients and their families. But what is occurring is that these misguided people are taking the focus away from ARDS, taking away a cooperative clinical research project, taking the focus away from the education and public awareness, taking the focus away from the support, and what I would maintain to you, is that they have no idea what it is like to as many of us do....
To be on a ventilator for weeks or months;
To be in a drug induced coma for days, weeks or months;
To have the hope that there is a medical research project or a new drug out there that might possibly save your life or the life of your loved one;
To be an ARDS survivor and have to learn to sit up, stand, walk and write again;
To lose a loved one to ARDS and think that there might be something out there that could have saved your loved one, but to learn that the research has been halted;
In the past two years, I have written to the members of the media probably over five hundred letters and emails asking for some attention to our cause, but almost every letter or email is ignored. And I know that every time we get something in the paper or on the radio, the press has an amazing impact. People are so hungry for information about ARDS, are thankful to hear that there is an ARDS Foundation and that someone is doing something out there for this cause.
And so I find it especially disturbing, even shameful, that all of this focus by the media is going to this sort of controversy rather than to the people who are affected by ARDS, their family and those medical professionals who put in the extra hours to go above and beyond what is called upon. How many of you recalled a physician, like I do, who stayed until eleven PM, waiting for the results of my spinal tap, to make certain that I did not have brain damage after suffering a hospital (ICU) psychosis? How many remember, as I do, the nurses who stay with you even though they had a floor full of patients, perhaps as long as a half hour, holding your hand because your were alone and scared out of your mind, and wrote on a piece of paper, "I"m anxious," in the middle of the night? How many family members remember, as my family members do, the one doctor who gave them hope, and his pager number? Or perhaps a doctor who was kind enough to sit and pray with them? This is what ARDS crisis is about.
But the focus has disappeared. That focus should be, always has been the same....at least 150,000 people in the United States each year will get ARDS, and at least half of those people will probably perish. And we need those in the medical community to support ARDS research.
The reality is that in the time that the ARDS Foundation has been in existence, raising funds for our foundation has proven to be a very difficult task. Part of the reason for this is because people do not know what ARDS is, nor do they understand it. Due to this lack of knowledge, it is very difficult for our foundation to raise the significant funds necessary to begin the medical research that the ARDS Foundation is dedicated towards raising and intends to fund in the future. So, though we do have a medical research fund at the foundation, we have yet to be able to fund a project as it takes substantial sums of money for these medical research projects.
However ARDS research is being done and it is being done by the ARDS Network. For those of you who are not familiar with the ARDS Network, if is a consortium of clinical investigators funded by the National Institute of Health (NIH) and the National Heart, Lung, and Blood Institute (NHLBI) and dedicated to clinical trials of intervention. (ARDS Network) The ARDS Network was established in 1994 and began its first clinical trial in 1995, as I stated, too late for someone like myself who had ARDS in the summer of 1995. The Network has made vast progress in their short existence. Since this time, they have conducted six clinical trials, with the most widely discussed clinical trial being the one regarding the tidal volume strategy that found ventilator smaller breaths were better than larger ones. One important aspect about the ARDS Network, with regard to this, and for that matter, all of their trials: their investigators have no personal interest, academic gain, or financial interest in proving one ventilator strategy superior. Therefore, there was no conflict of interest. The ARDS Network has made vast progress in the short time that they have been in existence.
Although there is other medical research that is being done in the world with regard to ARDS, the unique aspect about the ARDS Network is that the various institutions work on the same studies and then will pool their data, which is a more efficient way to gather information.
The ARDS Foundation works with many physicians both in and out of the ARDS Network. All research that is being done to further ARDS in accordance with the laws is beneficial. After this issue was initially raised, I did the research to learn that the studies under question were carefully reviewed and approved by two independent committees of experts and the Independent Review Boards for 40 hospitals before the studies started. A blue ribbon panel of experts reviewed the concerns that had been raised and this panel rejected all of the concerns regarding safety and strongly recommended that the Fluid and Catheter Treatment Trial (FACTT) study should resume. The panelists' findings indicate that the complaints were speculative and totally lacking in fact. However, to date, the study is still stalled and as I have said, with all of the negative media attention focused on this, rather than on ARDS, it is really an injustice. Currently, there is minimal medical research going on regarding ARDS, especially compared to other syndromes or diseases such as cancer and AIDS, and there is certainly nothing of this magnitude, that spans many states to compile data to get the best and fastest results, something that is necessary to fight this insidious syndrome.
And what about the human faces of ARDS? Once again, we have been lost and the reality is that the next time someone hears those four little letters, they will probably look at you with a blank stare and not comprehend what ARDS means.
Thank you for taking the time to listen.
Eileen Rubin Zacharias
President, ARDS Foundation
A Four Letter Word No Child Wants To Hear
by Gene Bass
December 15, 2002
In January of 2000, I heard a new four-letter word… ARDS. Little did I know that this term would be a part of my life three years later.
My Mom, in her mid 50's at the time, had what her physicians thought was the flu. As I took her to the hospital on Sunday, I was relieved to hear that she would be fine; she just needed some rest, lots of fluids and antibiotics. As Sunday turned into Wednesday, I went by my parents house to check on her. As I walked in, it quickly became apparent that nobody was home. I knew something was wrong. Something told me to check the hospital, which was only a three-minute drive away.
As I pulled into the emergency room parking lot, I noticed my parents car parked in the lower lot. As I entered the ER, a receptionist, whom I knew personally, greeted me. I could tell by her look that something was wrong. She told me that my Mom was sent to Intensive Care and that I should go directly there. Having no real idea of what was going on, I proceeded to the ICU waiting room. As I walked into the waiting room, I saw my Dad talking with another family. My Dad is the type of person who tends to deny real issues and show little emotion. I asked him for details and he said they put her in ICU to keep an eye on her and give her some oxygen. I would soon find out that she had been diagnosed with pneumococcal pneumonia and was having difficulty breathing.
At this point, I was rather relieved that it was just pneumonia. Since she had a prior heart history, the first thing I thought was that she had a heart attack. As I entered her room, I immediately noticed she was getting a high percentage of oxygen via mask and having severe difficulty talking. She basically had no clue about what was going on and said she fell at home and thought she saw me there. Although I knew her condition was serious, I went home later that night feeling relatively good about things.
As I returned to the ICU the next morning, I was shocked at her condition, her deterioration. Her color was almost blue, she could barely get three words out of her mouth and her mental state was way off. I remember her asking me whose bowling balls were on the floor? I thought maybe it was the medication.
A short time later, her pulmonary doctor entered the room. He checked her out and asked her if she would give permission to intubate her? Intubate she asked? He explained it in these terms; "a tube down your throat to help you breath better". She agreed.
The doctor left the room to make the preparations. I phoned my brother, who lives several hours away and told him that he needed to come right away. In hindsight, I had no idea of what was about to take place, nor did she. We talked for a short time until doctors and nurses entered the room to do the procedure. She said "I love you" and I kissed her good-bye. Little did I know that this would be the last time I would see her move or hear her voice for over two months.
Several hours later, I went back into her room. I was completely caught off guard by what I saw. She was totally sedated, her chest was moving up and down at an excessive rate and she looked like something one might see on the television. I literally felt as if I had stepped into someone else's body and into the "Twilight Zone."
I think to some extent I was still in denial about what was going on. It wasn't until later that day that my father and I met with her pulmonary doctor in the ICU waiting room. He told us straight out; "your Mom is very sick, she only has a ten percent chance of making it". At this point, reality checked in…
As if the situation were not bad enough, over the next few days, more bad news would follow. Her primary doctor told us she now had been diagnosed with Acute Respiratory Distress Syndrome… ARDS. Of course, like most ARDS families, I had no idea what he was talking about. I think the only thing I picked up was those four letters ARDS.
Armed with that, I went to my computer and did a search under the term ARDS. I will never forget the feeling of helplessness upon reading the newly found information. The statistics alone were enough to make my head spin, but I kept on reading for hours. I remember coming across the ARDS Support group and making my first contact with someone… I now had 'Hope.'
Over the next two months, I would establish a network of several people who would guild me through each step of this terrible illness. I would be the sole decision maker in several family meetings regarding the removal of my moms life support. Decisions I was not prepared to make this early in my own life regarding another person's life, especially my mother's life.
I would basically shut down a portion of my life and devote my time to my family. I would sit next to her bed for hours on end getting to know the ICU staff that worked in my home away from home. I would set up my laptop computer in her room, read everything I could find regarding ARDS, medications and treatment protocols. I would become familiar with every aspect of her treatment, learning all the numbers, charts and x-rays. I was obsessed with finding solutions to what seemed to be a hopeless illness.
Without the support network online, there is absolutely no way I would have made it through those 99 days. Emotionally I felt like a yo-yo; physically I was running on pure adrenaline for two months straight. I remember leaving the hospital so many times thinking it would be that last time I said good-bye to my Mom. I would actually tell her that it was OK if she needed to go; I told her I understood.
As hours turned into days and days into weeks, I begin to wonder if I was holding on to hope for personal reasons. I had earlier gone against my older brothers decision to remove life support. Was I holding out hope for selfish reasons? I know now that I was better equipped to deal with the daily drama of ARDS. I had read literally every ARDS story posted on the Internet and always told doctors, "I have read about worse cases that survived…"
Each time doctors called for a family meeting, I would use examples of those who I had met on the Internet to fill the conversation with hope rather than despair. I often felt as if they just wanted to "clear an ICU bed" instead of doing everything they could to help her.
n hindsight, I think that one reason doctors give up hope is because they feel as if they have no medical options left. While some will mention it, most often doctors forget about the power of something far greater than medicine.
As January of 2003 approaches, it hardly seems like it has been three years since this whole ordeal. Not one day has gone by without the terms ARDS being used in my life. I have corresponded with literally hundreds of people via the Internet. I have made friends with people whom I have never met face to face. My world has changed in many ways since January of 2000. I am Thankful for each day I have with my Mom and family. I am Thankful that my Mom is here with us today and able to enjoy life.
I will continue to reach out to those who find themselves in the same situation as I did three years ago. Not because I feel I need to, but because I want to. I pray that someday the community will be as aware of ARDS as they are of Cancer or AIDS.
To everyone who gives their time to help others, I Thank You. Without the help of people just like you, my mother would not be here today
By Gene Bass
Go
to Gene Bass's Story on Survivor's Story Page
Thoughts from an ARDS survivor, upon embarking on a surgery that is directly the result of having ARDS...
By Dee Storey
December 15, 2002
I am going for surgery at the University of Michigan and I still do not have everything ready. Laundry is in the washer, dishes are in the sink, the trash needs to be emptied, and I need to make a run to the post office with last minute packages...the holidays are around the corner, as everyone knows. Every now and then I pause to think about how I got to this point where I would be going to the University of Michigan for surgery. Hmmmmm... a lot of decisions. A lot of information. A lot of support.
I was in ARDS crisis in April/May 2000. I had never heard of ARDS, my family had never heard of ARDS, and my friends had never heard of ARDS. I met the ARDS community on the Internet and I learned so much about what to expect during my first year of recovery. All those e-mails in the first year, especially those from Eileen, were so reassuring that, YES, there was a life after ARDS. Okay, a different life, but I have learned that different is not always bad.
I first met an ARDS family in December 2000 in the same waiting area at the University of Michigan where I have waited as a patient in 2002. Gina was a patient in ARDS crisis at the U of M. Her husband and parents were in the same waiting area that I have walked through 5 times on the way to surgery. Gina did not survive ARDS and her death was so very, very sad. Every time I sit in that area, I always remember how kind Marshall and Gina's parents were to me.
After ARDS, I ended up with tracheal stenosis, a closing of the air passage due to scar tissue. The scar tissue formed in the area of my windpipe where the cuff of vent tubing had been. In this day and age, after a person has been intubated as I had been due to the ARDS, this complication occurs in only a very small number of individuals. I just happen to be one of those individuals. But come to think of it, I was among the small number of people who came down with ARDS and survived. The scar tissue refuses to be manipulated by bronchial (sp) dilation. The more the tissue develops and bounces back, like a tight rubber band, the more difficult it is to breathe. The surgery on Monday will be what is called a trachea resectioning. In this surgery, the doctor removes the part of the trachea that is scarred and reconnects the windpipe. YIKES!
It took a lot of decision making for me to come to this point. I did not make this decision hastily. I have learned a lot about making medical decisions after ARDS. I have often said that it was "easier" when my brother made all of the decisions for me while I was in a coma. But, now it's my turn to make the decisions. I had help. Help from friends, medical personalities, people I don't know, and family.
I know that I have been able to make informed decisions based upon information and support from those in the ARDS community. I first learned that there was such a thing as tracheal resectioning from Sue in Chicago. Her husband, an ARDS survivor, had been examined for tracheal stenosis. She passed on the information to me and I looked it up on the Internet. I found the most interesting descriptions, illustrations, diagrams, and even short videos at the University of Iowa Medical School. WOW! It is really amazing to take a tour of a trachea while sitting at home!
I had been told that there was NOTHING that could be done about my tracheal stenosis. I did not know any better so I believed that NOTHING was what would happen.
So from 2000 until June 2002, I thought there was nothing that could be done to fix the stenosis. However, one day in June 2002, I was in a doctor's office (not my physician during my ARDS crisis) when the doctor and her resident said they thought that NOTHING seemed like a really impossible word. The Resident, who seemed only a few days older that Doogie Howser, said, "that if I were his mother, he would search the earth to find a way to have the tracheal stenosis fixed." The doctor referred me to another physician who referred me to a surgeon at the University of Michigan. Once I learned that I was going to be evaluated at the university, I started to do my research: reading and asking questions and searching for information.
I think we have all learned that nothing in the medical world moves quickly...but in my case, it seemed that once a decision was made, everything moved like lightening speed! I saw a new ENT in June and a surgeon in July! WOW! It seemed, in a very short span of time, that there WAS something that could possibly be done. I had a lot of questions to ask. I knew I was able to ask good questions over the last 6 months because I was armed with information and armed with advice from people in the ARDS community. Many in the ARDS community have been there and have gone forth and sought out second and third opinions. I know that information and the support have made it possible for me to try to maintain a positive attitude about the tests, the procedures, and, now, the upcoming surgery.
A neighbor teenager, Tommy, has often reminded me that I am helping to train all sorts of medical people. I know that he is right. Sometimes his kind words help when I am going from one office to another and from one lab to another and from one nurse to another. I am learning and they are learning. There is some comfort in the sense of a cycle.
I know that the information from the University of Iowa Medical School has helped me to recognize the technical terminology. I know my surgeon at the University of Michigan has helped me by treating me as an informed patient...a patient with knowledge and fears.
My family physician has helped me by providing medical and personal support. The nurses have helped by being the first-line of medical people I talk to on the phone in the office. All of these people have made me laugh. The University of Iowa has helped me study and to see just what is going on. Those in the ARDS community have helped me with the notion that I can get through this because I have the support. I have the support online. I also have support from those who have been in hospitals and in DR offices and in waiting rooms. I am especially lucky because I have many wonderful friends where I live. They have given emotional support, cooked meals, and sat with me during medical procedures. I also know that wonderful people, like Irene in Saginaw, have put me on their prayer chains I understand that there is frequently a window of opportunity for most things. With ARDS, there is one for 24-48 hours when our bodies had some insult and went into ARDS. With surgery, there is also one. I decided to go with my window of opportunity because I have a real sense of what the possibilities are given the surgery. I understand the dangers and the problems, and I do have fears. However, I also know that I have people all over the United States cheering me on. I cannot wait to tell you about the process and the recovery and the results.
Hmmmm... Think of Bob The Builder. His slogan: Can We Fix This? YES WE CAN!!
By Eileen Rubin Zacharias
December 1, 2002
In this newsletter, we wanted to profile Shelia Haefling, who passed away November 16, 2002, from pulmonary fibrosis while waiting for a lung transplant. Shelia's death is not the first post ARDS passing from pulmonary fibrosis from our community; in fact, it has been less than a year since another member of our community at the ARDS Foundation, a great contributor to our message board, passed away, also while waiting for a lung transplant.
As I began to write this, it was November 23, 2002, the day of Shelia's funeral, or her "celebration of life" as she would rather have it called, and unfortunately, I was unable to attend. Instead, I spent my day, much as I do most of my days, with my daughters, attending to my daily chores and errands and joys that most moms do...but my mind kept drifting back to Shelia, and her family and friends, as I attended to my children...
One of the reasons Shelia's story is so important is because it illustrates an important concern for many patients post ARDS; many are being diagnosed with serious medical conditions such as pulmonary fibrosis, COPD, Asthma, Emphysema, and other conditions. While just last month I wrote a column in the online newsletter proclaiming my post ARDS medical health, with clear lungs while telling people that there is a reason for hope, my joyous story is not always the case. People write to me often, after getting diagnosed with these or other medical conditions post ARDS. There are many patients currently on oxygen for a portion, or all of their day. Several post ARDS patients are in the process of contemplating lung transplants.
Just like with ARDS, knowledge is power and the more knowledge that you have of your post ARDS ailment, the more empowered you are. It is important to take control of your medical condition and your heath to the extent that is possible, especially after surviving ARDS. There are support organizations, just like the ARDS Foundation and many of those organizations we work with. There are other people who are dealing with many of the same issues as you might be dealing with. Just as with ARDS, you are likely not alone.
I hope that you will take the time to read Shelia's amazing story. The volunteers at the ARDS Foundation will miss her very much as I am sure that her husband, Jack, her children, her family and her friends, miss her. She did everything within her power to fight first the ARDS, and then the pulmonary fibrosis. Unfortunately, it was a fight against time. As Pastor Ian always says...'the world is a poorer place' and with that sentiment, I could not agree more.
Eileen Rubin Zacharias, President
ARDS Foundation
Seven years later....
By Eileen Rubin Zacharias
November 1, 2002
Yesterday, I met with my pulmonologist, Dr. Arvey Stone. Dr. Stone is one of my favorite doctors. The first time I clearly saw his face was when I was the morning after emerging from days of a hospital psychosis (psychotic episode) caused in part from a too rapid morphine withdrawal combined with moving me simultaneously to a private room on the respiratory floor almost immediately when they had taken me off the paralytics. All I had heard about him was that he was one of those Dr. Doom and Gloom docs but I knew that he was one of the good guys! You see, us coma patients take so much in, even if it does not seem like it. So, when he told me almost casually, in one of my appointments maybe a year later that I almost died at least five times when he was on call, I must have known that he was in there, fighting for me, tooth and nail. And I always sensed he had that gallows humor, something that I, as a former prosecutor, still retain.
Anyway, Dr. Stone is still my pulmonologist and one of my favorites. And when we viewed my recent x-ray together, I asked him how bad my lung scarring was. As an ARDS/sepsis patient who was on the vent for eight weeks, in the hospital for nine, I assumed that I would still retain much permanent scarring. During my hospitalization, both of my lungs had collapsed on two separate occasions and I required five chest tubes in all.
I was also one of those patients who the doctors initially held out no hope; the hospital had called the family together, with all the required participants from the hospital to have the "meeting" where they could discuss the "options." My family decided to wait it out. And though it seems I suffered almost every complication, all of those same doctors who once held out no hope, were now my biggest cheerleaders. "You are going to walk out of this hospital" they would say, over and over again. At times, I did not believe them, and were it not for the nurses, the therapists, family, friends, and those doctors, I probably would not have. When I finally was able to walk pass the nurses station, albeit being bagged by my PT, walked by my nurse, those at the station cheered. Just the thought still brings a tear to my eye.
So, back to my x-ray, seven years post ARDS. "Clear, to the untrained eye..." Dr. Stone told me. Pretty amazing. Oh, and that PFT of mine. The first time I took it three months post ARDS was low/normal, high/low, but the second time I took it, a year later, it was about 90% of what normal would be for someone my age.
I don't tell you this to gloat. I do huff and puff when I overexert myself...I seem to have exercise induced asthma. The extreme temperatures (hot or cold) will still cause me difficulty breathing. Climbing stairs are still harder.
I tell you this because when I got out of the hospital, in 1995, I was told that the progress that I made in the three to six months post ARDS, would be the progress that I would have for the rest of my life. But just as we offer hope to those with loved ones in crisis, I am saying that there is still hope that in time, things might get better with your breathing and your lungs. And people should keep striving to reach the goals that they have made for themselves in terms of their recovery and not be bound by the limitations set by what others may have told them. When I left the hospital on August 4, 1995, no one was offering me things like pulmonary rehab and other options to increase my lung capacity, too. Take advantage of these options and see just how far you can soar.
Eileen Rubin Zacharias, President
ARDS Foundation
by Eileen Rubin Zacharias
September 15, 2002
As many of you know, the grim statistics for those diagnosed with acute respiratory distress syndrome are around 50% mortality; most of those that do survive ARDS will tell you that, at least one time or another during the course of their hospitalization, they were on the brink of death. Most will tell you that their doctors call them their "miracle patient." But the truth is that though half do survive, half unfortunately do not. And so, though the ARDS Foundation strives to keep the website and the newsletter as positive and as hopeful as we possibly can, we want to also keep it honest. And it is so important for people to hear the stories of those who had ARDS and did not survive. The stories of what their families went through. Through those stories we are able to learn, to grow, to change, and maybe make someone else's entry into the ARDS arena just a little bit easier.
Because I think I said in our last newsletter that went out in the mail...becoming part of the ARDS family is much like becoming a member of any family...you have no real choice. But after enduring the wrath of ARDS on a loved one, many who have been affected by ARDS choose to become part of our organization because they just cannot bear to see any other family suffer what they endured without at least a little more knowledge or guidance. And it does not matter if their loved one was a survivor or not...they just know that no one else who has not had a loved one diagnosed with ARDS will comprehend the meaning of those four letter-ARDS-and they want to be able to make it a little bit easier...be it by an email with encouragement or a prayer, a website with information, or offering an anecdote about what their loved one went through.
On September 12, it was the one-year anniversary of the death of the eleven-year-old ARDS patient whose aunt I had been writing to the entire summer. I had not heard from her aunt for a few days...I was nervous as I wrote. She lived on the East Coast so it was coupled with that fact, the events of 9/11 and that I had not heard in so long, that I wrote with trepidation. But I was compelled to write. And so I, as many of us who write to those in crisis know, when we do not hear from people for a few days, it usually means it is not good news, but still, with ARDS, we always want to hope for the best, because with our own cases, we were once there, too, and somehow, we pulled one last miracle.
But when I opened the email, I was still shocked that she did not make it. I felt the loss as if I were part of that family. I looked at the keys on my computer keyboard, but the words would not flow. It seems there are never sufficient words in situations such as these. I managed a few, but what was conveyed to me by this girl's aunt were the more important words.... she told me that if I ever got an email from someone like her, to let her know, because she would be happy to pass on the gift of support that she had received. Which is, of course, one of the most important ways the ARDS Foundation is able to operate.
And the ARDS Foundations feels that it is important that stories like these, like Courtney's, need to be told, so that maybe other children and their parents might not have to go through everything that these children had to endure. But if they have to go through even some of those things, they know that they have a place to go to, people to turn to, for guidance, information, prayers, and support. And hopefully, things will change, statistics will rise, and we will not lose as many children, or adults, to ARDS.
"In loving memory of Emily, Courtney and all of the children who have died from ARDS"
Eileen Rubin Zacharias, President
ARDS Foundation
"We are sad, not resentful"
by Paula Blonski
June, 2002
The number one comment I hear from ARDS survivors is that they are afraid to reach out to me, to talk to me out of fear. They think I would be resentful that they survived, and that my 36-year-old sister, Marybeth did not. I thought it was important to talk about this subject, to let all the survivors know how I feel. I cannot speak for all those who lost loved ones, but I know how I personally feel.
When I first lost my sister to ARDS, I was lost confused and extremely sad. I did not know and could not comprehend what ARDS was and why it took my sister. I needed to know more, to get information, so I went looking. Eileen Zacharias, the President of the foundation was the first survivor I met. I have to admit, before I met her, I was not sure how I would feel when I met her. Would I be resentful that she survived and Marybeth had not? I honestly was not sure. The answer came quickly when we met. NO, I would not be resentful, but rather hopeful. Sure I will always have the thoughts of why didn't Marybeth survive and others have? Even though I have these feelings, my feelings are of sadness, not resentfulness.
Eileen and all the other survivors I have met bring hope: hope of more survivors, much needed information, and the promise that Marybeth's death was not in vein. Survivors hold answers, answers that need to be heard so that ARDS will someday be something that can be survived by all, which is ultimately all of our hope.
I want survivors to know that it is OK to reach out to those that have lost loved ones. We can offer valuable information as well. We were there when our loved ones were going through the hardest part of ARDS. We can offer insight into what was happening when someone is in the drug induced coma, we can offer insight what it was like to have the various tests run, and in return, you can offer us hope. Hope that maybe with the knowledge you hold as a survivor, someone else will not have to endure the pain of losing a loved one, as we did.
ARDS Foundation
3100 Dundee Road, Suite 402
Northbrook, IL 60062
PH: 312-749-7047
Eileen
Rubin Zacharias, President
Paula Blonski, Vice President
The ARDS Foundation
All donations are tax deductible in the amount allowed by the law. The ARDS Foundation is a federal 501(c)(3) organization.
