MY "ARDS" STORY by Mark A. Lowery

This is a long story, and hope you take time to read it through to the end. I believe you will gain important insight into the wild roller-coaster ride with devastating effects that Acute Respiratory Distress Syndrome (ARDS) causes.

On August 26, 1998, ARDS struck me without warning contemporaneously with emergency gallbladder surgery. I am one of the very fortunate individuals to have made a fairly rapid and somewhat amazing "recovery" from ARDS-previously called Adult Respiratory Distress Syndrome, and also known by various other names such as shock-lung syndrome. There is no conclusive test or predictors available to determine whether someone will or will not get ARDS. Certain medical situations have been identified as underlying predominate precursors such as trauma and sepsis or systemic infection, which are two of three predominant medical situations in which ARDS arises. In my case, my gallbladder had died and become necrotic, and I developed gangrene with severe sepsis. Some reported information shows that perhaps smoking (I was heavy smoker) and alcohol abuse may also play roles. The ARDS medical condition and other similar conditions such as Acute Lung Injury-ALI and infant respiratory distress syndrome strike people from all ages from all walks of life and with a range of medical and health conditions, although infant respiratory distress syndrome naturally presents its own unique difficult aspects.

Now, it is important to realize that I am not saying "recovery" means everything is and returned to being "ok" with me post-ARDS. I have lingering problems, as do a good many people who survive ARDS although others make full recoveries and go on with their lives as if ARDS was a small speed bump on the highway of life. The range of problems, though, varies greatly from individual to individual, and situation to situation. Through efforts on many fronts over the past four years I have seen great strides made in helping to develop medical and social mechanisms to deal with the life-threatening, life-altering, and deadly nature of ARDS. The range of problems runs the range of testing the endurance of those touched by ARDS, aptly described by many as a serious life-threatening wild roller-coaster ride as the person progresses through the battle against ARDS. Perhaps as importantly, if not more so, methods and means of providing necessary support and educational information services have been developed and made available to assist people confronting ARDS as well as post-ARDS survivors, and their family members and friends and to others left behind by those who succumb to the deadly nature of ARDS.

I was a heavy smoker and workaholic attorney, with slowly progressing bad eyesight causing me to have to wear glasses. That may not seem like a big deal, many people wear eyeglasses (and I know of no connection between bad eyesight and ARDS!), but this was to be a source of some hearty humor later on after getting ARDS as noted later. I was at that time a diet-controlled diabetic and on medication for high blood pressure. I was significantly overweight/obese. I used two different inhalers and a CPAP (constant positive air pressure machine) at night because I also have sleep apnea. I did not exercise. I previously had a hiatal hernia, and for many years suffered with significant acid reflux, esophagitis, and related problems associated with over-acid production in the stomach for which I had gone through taking various medications over the years. These aspects of my medical condition, in hindsight, likely played a significant roll in my developing ARDS.

In 1997, I underwent expedited back surgery for a severely herniated disk problem undergoing a laminectomy. I had been scheduled for the surgery on May 20, 1997, but between the evening of April 15, 1997, and the early morning of April 16, 1997, my back problem exponentially increased to the point where I wound up on the floor of my living room in excruciating pain and couldn't move. I was brought by ambulance to the emergency room at a Veteran's Administration Medical Center (VAMC) hospital where I undergo my medical care being a disabled veteran (the stomach problem being one of the conditions that necessitated my medical discharge from the United States Navy). The back surgery was expedited and performed twelve days later on April 28, 1997, after they were able to bring my pain under control and stabilize my condition. Why mentioned this? Because, I came through that surgery with no respiratory problems, so nary a though crossed my mind when confronted with the gallbladder surgery-well actually one though crossed my mind repeatedly-I was in severe pain. Anyway, as you can see nothing prepares you for ARDS if you are not forewarned.

Over the next year or so, I started developing abscesses in various parts of my body. I was hospitalized for a few days for a huge abscess in the inside right portion of my groin area extending up into the abdomen. Another time, I had to have an emergency incision and draining of an abscess from the same area although more focalized directly in the groin. In mid-July 1998, I developed another huge abscess in one of my thighs that required surgical incision and draining (I&D). I had a slight temperature at the time likely due to infection. I also had been having a lot more problems with the acid reflux, heartburn, and bad gas attacks. Little did anyone realize then that these symptoms were probable precursors to a much more severe problem in my body. After the I&D for the abscess in July, I went daily for removal of the packing, cleaning, and repacking of the wound for over two weeks. All during this time, my temperature was taken and remained normal throughout the time after the incision and draining, a couple of times my white blood cell count was checked and was within normal limits. I had a lot of trouble, though, with my stomach and acid reflux at this time. I had pain radiating up under the sternum, around the side and up under the left shoulder blade in my back. This pain would increase, and then would ebb, in an up and down process. I associated it with my long-standing acid reflux and stomach problems, and new medications were tried to get that under control.

During the weekend of August 22-23, 1998, I developed some abdominal pain accompanied by more intense back pain up under the left shoulder blade. I again attributed this to my stomach and somewhat to my back problem feeling that I was aggravating my back because of posture due to trying to deal with the pain. On Monday August 24th, I went to work but left early after a few hours leaving a note for my colleague that I did not feel well. He was away for the day on a family matter. In the early morning hours of August 25th, I told my father who lived with me that I did not feel well and was going to the emergency room at the Veterans Administration Medical Center (VAMC) because the pain had increased exponentially. I drove myself there. On August 26th, I underwent surgery for the bad gall bladder. When the doctors opened me up they found the situation was much more severe. The gall bladder was dead and gangrenous. I had significant gallstones blocking the bile tube. The seriousness of the infection also caused major systemic infection (blood infection). My temperature stayed up, I was told, in the 103-104 degree range for a few days even after the surgery.

My descent into ARDS occurred immediately with that emergency surgery. The first x-rays taken after surgery, along with my symptoms, confirmed the diagnosis of ARDS. According to my pulmonary doctors, I developed significant breathing problems and was maintained on a ventilator. They indicated that even with the ventilator, they had significant problems "breathing for me," a prime hallmark of the insidious nature of ARDS. I was intentionally paralyzed and kept heavily sedated in a drug-induced coma by the doctors, somewhat the typical course used to battle ARDS at that time. I was also treated with steroid medication. These were the current primary tools of choice used to combat ARDS from what I have been able to learn from the doctors and my reading up on ARDS after getting out of the hospital.

The doctors did not know if I would live. The worse day, according to everybody, was the day after the surgery. I was raised as a Baptist (protestant), but I was baptized Catholic after my birth and later raised as a Baptist. I was told a Catholic Chaplain-who was the only clergyman in the hospital when my condition became very critical-gave me last rites. A Protestant Chaplain later stopped by and told me that he had come by and said prayers for my recovery. I was told also that other patients in the Intensive Care Unit, who themselves were very ill, said prayers for me and even asked their family members and friends to say prayers for me! I somewhat "blissfully" slept through all of this.

I suffered from a subsequent complication of bile leakage into the abdomen when a clamp let go, which required the doctors to surgically implant a stent to open the valve to let the bile pour directly into the intestines. This was supposed to be removed later on October 5th in a day-surgery endoscopic procedure, however the GI doctors decided to leave it in for another month. I did undergo that procedure later, not itself without some minor complications.

I honestly do not remember anything basically from a few days before going into the emergency room until I "re-awoke" on something like September 8th or 9th. The only recollection I have is remembering being asked in the emergency room if anyone in my family had ever had pancreatitis or a gall bladder problem. My mother also had a gall bladder go bad, almost died, and similarly had to undergo emergency surgery. No one to my knowledge in my family on either side ever had ARDS.

My law colleague says he was there at the time when I just moved a finger a little bit. He tells me everyone was excited and happy when that occurred. The doctors had told my family, friends, and colleague that I would likely be in the coma, intentionally paralyzed on the ventilator for a long time, as indeed happens with a good many ARDS patients. The doctors also indicated to them that there would likely be a very long recovery period requiring perhaps months of inpatient rehabilitation.

The next night I was thrashing around in the bed, which my colleague said was very scary to watch with all the central IV lines and other IV lines and the ventilator along with an open drain in my stomach to drain bile. I pulled the ventilator/respirator tube out at about 11:30 PM on September 10th, but the doctors were going to removal it the next day...I just saved them the time and effort...although I am not sure they appreciated being called on an emergency basis to the surgical ICU because of my action. Also, there is a "balloon" on the ventilator tube is blowup up down in the throat to keep it in, pulling it out can cause serious damage to the vocal cords. Fortunately, I did not do that. I was kept on supplemental oxygen while in the ICU, but gradually weaned off it and it was discontinued four days after coming off the ventilator.

I do not remember doing that and most of my "conscious" memories really start on September 11th. To put that in historical context, that is the day Kenneth Starr publicly released his investigative report on the President Clinton-Monical Lewinsky scandal. And that was all that was on TV, just what someone in an ICU hooked up to IVs lines and jsut coming out of a coma needed! (I admit it...I secretely thought..."Put me back in the coma.")

My mother and sister visited me during the day on September 10th before the late night crisis created by me pulling the tube out. With the tube in, I could not speak so my sister had brought some stenographer pads and pens for me to use to communicate. Remember my wearing eyeglasses, well sometimes humor arises where we least expect it.

Reading my writings later caused me quite some surprises. The first was that most of the early writings were somewhat legible (a little amazing considering all the drugs I was on), but written backwards! This caused quite some consternation among the doctors and nurses, but not to my mother and sister. They told them that I have a same somewhat rare trait: I can read and write in all four directions (forward, backwards, upside down, and upside down backwards). Without my eyeglasses and with the visual impediment caused by the ventilator tube, everyone theorized that I simply was "coordinating" my split eyesight in the best manner I could under the circumstances. I was to learn that the doctors and nurses were initially concerned I had sustained some sort of brain damage. While something along those lines indeed was to manifest itself shortly thereafter and continues to this day, I got some good humor upon learning of the consternation this caused the doctors and nurses.

The above "history" is, therefore, related to you from what I was able to piece together from the things I was told by my doctors, nurses, colleagues, family, friends, and colleague, all who rallied around and worked with fervent diligence trying to keep me alive while I just "blissfully slept" the time away. I believe that I was very fortunate that I did just sleep it away. I am not sure how I would have reacted if I had been awake (even partially) throughout that time. I just slept through the healing process of the major abdominal surgery I had undergone too.

It is amazing how weak one can get in such a short period of time being bedridden. I knew what could happen from the experience with my back surgery, but was thoroughly surprised at the extent to which I had become very weak during my short stay on the ventilator. I was discharged from the Surgical Intensive Care Unit to the regular surgery floor on September 14th, and then discharged from the hospital on September 17th. However, I was kept in the "Lodge" (sort of like a mini-hotel area in the hospital, comprised of nine rooms and a lounge area) for another four days while various blood tests and cultures were run and completed to ensure the infection was completely gone. I was able to make temporary living arrangements to stay in my office building for a time, which is just across the street from the hospital. I still live there to this day. It provided an easy place (although I did have to climb a flight of stairs) where I could go lay down when I got too tired while I recovered.

Another complication included my diet-controlled diabetes. My blood sugar was difficult to maintain during the battle with ARDS, and I was put on insulin. One of the entries I had wrote down in the stenographer notebooks when I learned this had occurred: "(*****) I am on insulin? No!!!!" Upon discharge from the hospital, I was taken off the insulin and attempt was made to bring my diabetes back under control through diet. Unfortunately, it did not work and I progressed to taking pills and then to taking insulin and the pills upon which I still take every day. I continue to have great difficulties with my diabetes.

Following my release from the hospital, as I mentioned I was very weak and got tired and had trouble breathing somewhat, although my oxygenation in the blood returned to excellent levels between 95%-99%. Each day I continued to build back my strength and stamina. I lost about 30-35 pounds while just sleeping away for just over two weeks in the hospital.

It is my understanding that I was the first case of severe, rapid ARDS to have occurred at that VAMC hospital in a long time. They had dealt with ARDS cases before, but most often with very elderly ill patients. I believe also fortunately that I was treated at a VAMC hospital in Boston, which is a metropolitan mecca for medical care. The doctors at this particular VAMC hospital are jointly affiliated with Harvard Medical School and Brigham and Women's Hospital in Boston, which has a very excellent reputation. More than likely, this helped significantly in combating my ARDS. From what I have read and learned, many people are not as fortunate to have this level of medical care and attention or rapid, correct diagnosis; leading to the very high death rate for people who are hit with ARDS.

Emotionally and mentally, as well as financially, this was a somewhat devastating experience and it took me longer to handle and deal with those aspects than the physical ones. Positive aspects abound though, not the least of which I am alive and "recovered" well ahead of what anyone predicted. I know from everything I have been told and have read that I am somewhat an unusual case. Mostly, everything turned out very well. So I count my blessings from where ever they have come. I had a tremendous amount of support from friends (both personally and those developed over time on-line on the Internet), family, colleagues and my clients. A lot of prayers and good thoughts and wishes for my recovery no doubt lent a significant boost.

Recently, investigation was conducted into the post-ARDS lives of survivors. I participated in being interviewed, and mentioned what to me has been the most difficult problem to deal with post-ARDS. I was blessed with being fairly intelligent, making honors in school and earning accolades and awards mostly due to having an excellent memory. Post-ARDS, though, I developed some significant memory problems. At first, most of this was attributed to the drugs that were used, which have amnesia effects. That explains my not really remembering much of what I went through, which also can be explained perhaps as my brain using the amnesia as a defensive mechanism. An early example was that shortly after awakening I wanted to speak with my primary care doctor, but could not recall her name no matter how hard I tried. I found out later that she had transferred to another hospital a few days after I underwent the surgery so it did not matter anyway, but it was frustrating. Another example was that I could not remember my mother?s telephone number, which before I knew as well as several of her previous telephone numbers from different places she had lived. I kept dialing a previous telephone number for her instead of her current one. Luckily, this has gone away and I now remember her telephone number.

I also began noticing having significant problems with spelling words correctly, grammar problems, and not using the word or words I meant to use. A somewhat disturbing example was when I used the word hippopotamus when I meant to use the word love in a communication to a client. I would forget I had done something for a client, and would forget I was supposed to do something for a client. Proofreading did not really help all that much. I also developed forgetting things I had known throughout my life (some long term memory problem aspects). Even more disturbing was forgetting things in the short term.

I underwent neuropsychological testing that revealed basically I developed a short-term visual memory problem. That is to say, I can read or see something and can almost immediately forget it. It happens without me knowing it. Sometimes even with proofreading I go right over the error and never realize it is there. The weird part of all of this is that the "memory" of some things (but not all) often comes back over time. My long-term memory is able to dredge it back up out of my brain.

Finally, another medical aspect that developed after the ARDS was having significant congestion develop in my throat, this very thick, sticky stuff that is very, very difficult to dislodge. This happens especially at night, although it happens also during the day. I still have this problem and take some nasal and other medications to try to minimize the problem. I can tell you it is scary having gone through ARDS and its life-threatening problems to have a sort of breathing problem develop and have to live with it. The doctors believe it is a combination of two things, post-nasal dripping into the throat and the acid reflux causing development of the thick sticky stuff. That is all fine and good to know, but it does not lessen the fear and scare waking up with it in my throat and having trouble breathing and dislodging it.

I know results of somewhat informal interview processes for post-ARDS situations of patients who survived have been developed. Further exploration and development of medical and social services are working their way through the necessary review processes and routes these things take. I want to say to everyone, no matter whether someone "recovers" quickly or if there is lingering and continuing medical problems (whether minor or severe), keep focused on perseverance and doing the best that you can do under the circumstances. The person, family members, and friends will all confront challenges from the ARDS experience. There will be up and downs, some will experience less problems and go back to virtually the same lifestyle as before they had ARDS, some will be slightly more moderate in problems, and some will be severe in the long term after surviving ARDS.

Developing information, education, and support services are key components along with medical advances through scientific research. Each person must learn to take whatever road or path to living post-ARDS with which they are most comfortable in dealing with the medical, health, financial, social, emotional, psychological effects of battling ARDS, whether your are a survivor, a family member or friend of a survivor or of one who has died, and doctors, nurses, and medical staff. When coming out of the hospital, I had little knowledge of what the range of things people may go through post-ARDS and it is truly amazing to be here to tell you my story. I hope it helps in whatever way such a story may for each of you who take the time to read it.

Mark A. Lowery, April 2002

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