I almost died.
At least, that’s what people keep telling me. “It’s a good thing you were healthy before this happened. You might not have made it otherwise.” I can’t tell you how many times I’ve heard this line or some variation of it in the last couple of months. It never fails to confuse me because I was not healthy before. I was (and still am) overweight, my diet was (and is) crap, and I never exercised. Therefore, it takes me a minute to realize people are just talking about my lungs; they were healthy. This is good because I recently contracted a rare case of lung inflammation called ARDS – Acute Respiratory Distress Syndrome. There is very little they can do to treat ARDS. For the most part, your body either fights it off or it doesn’t and you die. But you do have a better shot of survival if your lungs are normally healthy to begin with. So, I guess I was lucky.
While the comments of my “good health” were confusing, seeing my wife in tears because she was afraid of losing me was disturbing. As was watching my mother try to keep her doctor’s face but failing on a few occasions. Was I really that bad off? Then there was my Aunt who flew in from Switzerland to help out and all the people who came to visit or who wanted to but couldn’t. Many people, most of which I hardly know, sent cards, balloons, flowers, and gift packs. I believe there were at least a dozen different churches that included me in their services, praying for my recovery – churches I’ve never gone to. It was completely overwhelming. How do I deserve the love and kindness shown to me by all these people?
For me, it still hasn’t sunken in. It is very hard for me to internalize the reality that I could have died. Apparently, it is true and I suppose I have to accept it. I’m a 38 years old artist who does more management than art these days. I’ve been married for almost 2 years and we are trying to have a baby. I’d like to be a published writer at some point. And it all could have all ended with some bizarre illness. Is that fair?
On Tuesday, January 12th, 2010, a catastrophic magnitude 7.0 earthquake struck Haiti. Hundreds of thousands are dead and more will continue to die. Hundreds of thousands more were wounded and it is estimated that over 1,000,000 people are now homeless. The Haitians are burying their dead in mass graves – their loved ones, mothers, fathers, and children, in some anonymous hole. They have no choice. Many individuals, organizations, and some governments have responded with aid but it is not enough. The doctors have very little in the way of resources and shelter. Sometimes, all they can do is wrap a victim’s wounds and try to find an open space for them to rest. All the wounded can do is wait to live or die, it’s in the hands of the Fates. Is that fair?
No one is sure how I contracted ARDS, but we think it began with allergies. This year, just like the years before, I got a bad case of Cedar Fever. My mother (who is a doctor) started me on some antibiotics and a steroid called Prednisone but, as my sinuses started to clear up, I developed a bad cough. Mom and her husband, Steve, were visiting at the time and we managed to have a good vacation despite my constant coughing. A couple of days before they flew out, we drove down to San Antonio, saw the Alamo, and had a nice dinner. On the drive back to Austin, I became warm and feverish. The next morning we took my temperature and it was 101 degrees. My mother called in another prescription for me. I wasn’t too worried; I figured the new medication would knock out whatever I had. The last thing I wanted was to go to the doctor or, even worse, the hospital.
The day mom and Steve were to fly out, I awoke buried under the covers and shivering. I could barely move. When my wife, Rebecca, took my temperature, it was a 104.6. Because there was no time to arrange for a taxi, a friend agreed to take mom and Steve to the airport while Rebecca took me to the Emergency room. As I was checking in, the ER receptionist heard me cough and slapped a mask on me immediately. No one said anything about H1N1 but they didn’t have to, obviously, the fear of it was still strong. They took my information and my vitals. By this time my temperature had come down to 102 and I got a dubious look from the nurse as to whether or not it had ever been as high as 104. They put me in a room where Rebecca and I sat and waited for a doctor. As it turned out, my mother rescheduled her flight and soon joined us in the emergency room. Things moved very slowly, they took some blood, they took some chest x-rays, they finally gave me some medicine to bring down the fever, and they started an IV. Mostly, I just laid there waiting. Eventually, the doctor came in and said the flu test was negative (he didn’t say the test was only 75% accurate) and he thought I had pneumonia in both lungs. He admitted me to the hospital for more tests and observation. It took another 3 or 4 hours for them to clear a room upstairs for me.
I was moved to the 3rd floor and put on a Nasal Cannula (the little oxygen tube stuffed up every patient’s nose on any TV medical drama) to help me breathe. The next morning, the chest x-ray was worse. My lungs looked like two giant blotches of solid white. There was only a tiny clear area at the top of one lung. My temperature spiked to 104.5 again. I remember thinking; at least they know I wasn’t lying now. The nurses were able to bring my temperature down some but my primary doctor, Dr. Bashar, was at a loss to explain what was wrong. She asked for a pulmonologist named Dr. Sint to look at my case. His first concern was that there might be fluid forming on the outside of my lungs. This can happen in some cases and cause a very bad infection. If it were there, they would have to operate immediately and drain the fluid. He requested a set of new x-rays to confirm his suspicions.
February 15th came and my temperature was back up to 103. My mother and Steve had to fly home but mom said she was flying back as soon as she took care of some things at work. Steve would stay in Indiana to take care of their house. I didn’t want her to do this, it seemed like such a waste of money and far too much of an imposition. But here’s the thing about having a doctor for a mother, she was already suspecting what was really going on. She knew how serious it was, even if she wasn’t telling me. There was no talking her out of it. Rebecca’s mom drove them to the airport and we waited most of the day for them to take my chest x-rays. My nurses told us the department was backed up but later, when they finally took the x-rays, the tech acted like it was news to him.
I was becoming weaker and it was very difficult to talk. Rebecca took my iPhone and began emailing everybody in my contacts list, my work, my friends, her friends, our family, and telling them what was going on. She would continue to update everybody throughout the ordeal – all while taking care of me, our house and pets, and dealing with our insurance to set up my short-term disability. She was amazing. One of my closest friends, Richard, responded to her email saying he was looking for flights to Austin – he lives in Massachusetts. This really bothered me. I knew how expensive a flight would be and, to be blunt, Rich doesn’t have that kind of money. I didn’t want him overextending himself on my account. I sent him a text message telling him I appreciated his concern but not to come, it wasn’t necessary. He responded with a quote from a movie we both love, “Lonesome Dove.” Yes, it’s geeky to talk in movie quotes but nothing he could have said would have conveyed to me how stubborn he was on the subject. I don’t remember the quote but if you are familiar with “Lonesome Dove,” then you know stubbornness is a recurring theme. I could no longer type back; it had been difficult enough for me to send the first text message. So, I gave the phone back to Rebecca and asked her to talk him out of it. She managed to do so – although it wasn’t easy.
Later that day, when Dr. Bashar came by to check on me, she was surprised they hadn’t taken the x-rays yet. She changed the orders to a CAT scan instead. It made sense, if the x-ray department was too busy, then I could get a CAT scan quicker and it would give them a better overall picture of what was going on in my lungs. It wasn’t until they were rolling me down to do the scan that I realized I wouldn’t be able to lay flat for the extended period of time needed for the scan without coughing. I told this to the tech but we decided to give it a shot anyway. It was no use. I couldn’t lay flat for even a minute without coughed. I felt like I was drowning. Given that my lungs were full of fluid, I suppose I was drowning. We gave up and the tech apologized for attempting it in the first place. I asked if we could try an x-ray as was originally planned; I thought I could keep it under control long enough for that. It took awhile to convince the nurses to call Dr. Bashar and have her change the orders back to x-rays again but they did and I managed to control my coughing long enough to have them taken. The good news was I didn’t have any fluid on the outside of my lung. The bad news was the doctors still had no idea what was going on. Dr. Sint wanted to perform a bronchoscopy, a procedure where they go through my mouth to take a small piece of my lung for analysis. They moved me to the ICU for the operation.
In some ways, it was better in the ICU, the bed was more comfortable, the nurses were more knowledgeable, and they were attentive. Additionally, it felt like we were taking action by coming to the ICU, instead of sitting around and waiting. Yes, in some ways it was better, in other ways it was not. First, the room was very dirty. My mother and Rebecca spent days cleaning the room because it was clear housekeeping wasn’t going to do it. The hospital, overall, wasn’t very clean and some of the nurses and techs did not follow the “Universal Precautions” set up by the medical community to protect against the spread of disease. These precautions are things like washing your hands before and after touching a patient, and wearing sterile gloves, etc. Since no one knew for sure what I had for the majority of my stay, every nurse or tech that didn’t follow these procedures ran the risk of spreading my illness throughout the hospital. This so bothered my mother that she wrote a long letter to the hospital administrator. Of course, I was blissfully unaware of any of this, my problem with the room was there was no bathroom – and I had been having diarrhea since I arrived at the hospital. I had two choices, the bedpan, in which some poor nurse would have to “clean” me afterwards, or there was a potty-chair – basically a bucket with arm rails. I had already lost most of my dignity and I was determined to hold on to what I had left. I would fight the use of the bedpan. I didn’t have to wait long for that to be tested. I had to go almost as soon as they got me situated in the room. The nurse helped me onto the potty-chair and I asked everyone to leave. The nurse was reluctant but I insisted. I’ll spare you the details but by the time it was over, I truly felt like I was going to die. I couldn’t breathe and could barely get myself back into bed. It really freaked me out. They gave me pain meds and anti-anxiety meds to calm me and I requested something to stop my diarrhea. If it constipated me for the rest of my stay I would be perfectly happy.
My memories from this point become very muddled or are gone entirely. I only remember fragments here and there. Luckily, my wife kept a short log of what happened. Much of the following comes from that log.
On February 16th, Dr. Sint performed my bronchoscopy. He didn’t find the usual fluids or mucus associated with pneumonia; instead, he found a lot of blood in my lungs. This made him think I might have something called acute alveolar hemorrhage syndrome and he was afraid to remove too much tissue for fear of causing more bleeding in my lungs. Dr. Sint pumped out as much blood as he could into a container. They placed the container on a shelf behind me where it stayed for most of my stay in ICU. I have no idea why and I never saw it but my wife took a picture. The drugs they gave me before the operation affected my short-term memory, so everything leading up the operation and several hours after were completely wiped from my mind. My mother returned to Austin on this day. She was far more worried about me than I could realize. On the plane back, she prayed to whatever god would listen for the plane to crash so she could trade her life for mine. Fortunately, none of the gods took her up on that prayer and to hell with any god who would.
February 17th: I remember some of this day. The doctors got the pathology back from the bronchoscopy and were surprised to find no infection in my lungs. The little bit of tissue Dr. Sint was able to get did allow them to rule out acute alveolar hemorrhage syndrome – we still have no idea why there was so much blood in my lungs. They began to narrow down their diagnosis. The tissue he removed from my lungs did show indications of Interstitial Pneumonia, making it the leading diagnosis. However, acute respiratory distress syndrome (ARDS) was still a contender and there were a few other diagnoses yet to be ruled out. One was that I might have an immunodeficiency disease or virus (such as Legionnaires disease or HIV). Dr. Sint tested me for those and they were all ruled out but it would take weeks to get the results. When it was all said and done, the sample they took was just too small to zero in on any particular diagnosis. Dr. Sint wanted to do a lung biopsy to get some larger samples for testing but thought it could wait until I was feeling stronger or if I became worse and there was no other choice.
Of the two leading diagnoses, Interstitial Pneumonia or ARDS, ARDS was the better option. If I survived, there would likely be no long-term effects. However, Interstitial Pneumonia would be something that would cause me problems for the rest of my life and would probably cut that life very short – assuming I survived it at all. Dr. Sint started me on high doses of steroids – 250 milligrams a day. The steroids would have no affect on Interstitial Pneumonia but they are the only treatment shown to have a significant effect on ARDS. In the past, doctors were reluctant to prescribe such high doses of steroids because the side effects can be very hard on the patient’s body. But the most recent thinking is that the risks outweigh the benefits. There is a 24 percent mortality rate for ARDS patients treated with steroids. It jumps to a 45 percent mortality rate in patients my age, not treated with high dose steroids. Unfortunately, these were not the anabolic steroids used by weightlifters to bulk up. I was given corticosteroid (like Prednisone) and they certainly don’t “bulk” you up. Just the opposite, they were destroying my muscles. Dr. Sint could have decided not to start me on the steroids since Interstitial Pneumonia was the main diagnosis. I’m very glad he had the foresight to treat for ARDS as a precaution and not wait for a definite diagnosis. If he had, I’d be dead now.
Tammy, from the HR department where I work, was my first visitor. When she saw me, she broke out in tears. This really surprised me because I don’t know Tammy that well. It also made me wonder just how bad I looked. Apparently, Tammy visited a couple of times but this is the only one I remember. She worked with Rebecca to get the short-term disability set up and was a great help throughout the whole mess.
That night, they tried to take some more blood from me. It’s always been hard to find my veins (apparently, I have “deep veins”) but by this point, they had already tapped every vein they could find and it was getting harder for them to get enough blood. I told the poor guy I didn’t think he stood much of a chance – I was bled dry. He didn’t get anything and finally gave up. He asked another nurse to try it. The new nurse was very persistent; he spent hours trying to get three vials of blood. I fell asleep twice while he was sticking me but he finally got his prize and let me be. They also started me on a Bi-Pap breathing mask. It reminded me of Darth Vader’s mask but it did help me breathe a lot better. Unfortunately, it dried out my throat horribly and since it covered my mouth and nose, it made talking all but impossible.
Lastly, at some point during this day, I had my second battle with the potty-chair. It was just as bad as the first skirmish except this time I knocked out the breathing tube that fed the Bi-Pap mask. It became impossible to breath and I was frantically trying to plug the tube back in but I couldn’t manage it. I forced myself to stop and tried to control my breathing and fear. Then I tried again. My wife was spying on me and saw what happened. She came in to help me but I finally got the tube plugged back in so she ran off to find someone who could make sure the setting were still okay. The oxygen was flowing again and I closed my eyes and took deep breaths – as deep as I could. Rebecca returned with a respiratory therapist she snatched from another room. He checked everything and it was fine. I have no memory of them being there at all. I was too exhausted to pay attention. That was my last attempt with the potty-chair for a while. I knew the next time I had to go, the bedpan would win and my last bit of dignity would be lost. And so it was.
February 18th: Joseph Stack woke up this day and made a decision. He posted a long letter on a website attacking the taxation policies of our government and the hypocrisies built into the system. He went on to talk about how these policies caused him to lose his retirement plan and put him deep in debt with the IRS. He ended the letter by saying: “I saw it written once that the definition of insanity is repeating the same process over and over and expecting the outcome to suddenly be different. I am finally ready to stop this insanity. Well, Mr. Big Brother IRS man, let’s try something different; take my pound of flesh and sleep well.” Mr. Stack set his house on fire and drove to a small local airport where he kept a single-engine Piper Cherokee. He took off without filing a flight plan, flew south to downtown Austin, and then north again and straight into an office building housing nearly 200 IRS employees. The crash was like a bomb going off and set the building ablaze. Joseph Stack made a decision. He killed himself and took the life of Vernon Hunter, an IRS employee who ran back into the building to make sure everyone had gotten out and lost his life in the effort. Thirteen others were hurt. Is that fair?
I sat in the ICU trying to breathe. An alarm went off in the hospital, “Attention all hospital personnel, Code White, Code White!” Apparently, one of the surgeons had been driving past the building where Mr. Stack decided to crash his plane and saw it happen. He called ahead to the hospital and warned them to expect causalities. As it turned out, most of the casualties were taken to a different hospital but some were treated at the hospital I was in.
The IV in my arm had begun to leak. Due to the difficulty finding my veins, it was impossible for them to start a new IV and the doctors decided to put in a “PICC line.” A PICC line is a long, thin tube that is inserted into the major vein of the arm and leads up into the chest and almost to the heart. It can stay in for up to six months and allows the nurses to easily give medicines and draw blood at the same time. It is a great alternative to a standard IV but PICC lines are prone to infection and must be thoroughly cleaned for 15 seconds before each use. Since the line runs so close to the heart, an infection can be deadly. This is another reason my mother was upset by the nurses not following the universal precautions. I think only 2 or 3 nurses actually cleaned my PICC line correctly the entire time it was there. Luckily, it did not become infected. A specially trained nurse inserted the PICC line and it was a pretty involved process but I was thankful to get it. My arms were starting to feel like pincushions and this eliminated the need for most of those needle sticks.
I had some more visitors on this day, Arnie – our lead concept artist and a friend I’ve known since college, Jeff – my art director, Andrew – lead environment artist, and Pedro – an amazing artist and a good friend. I wanted to talk to them but I had the Bi-Pap mask on and couldn’t say much. My wife and mother told them all that had happened. Their visit made me feel good but I also felt a little guilty. I’ve clearly been taking my friends for granted far too much lately.
February 19th: Dr. Sint came by and told us the x-rays continued to look worse. I was not getting better. Arnie and Pedro visited again. Later in the day, several of the animators came by for a visit. I was pretty out of it and don’t remember all who showed up. My mother and Rebecca decided to split the time they spent with me. Mom would take the day shift and Rebecca would take the night shift.
February 20th: my condition continued to go downhill. I was taking 45 breaths a second just trying to get enough oxygen, which is more than double the normal breathing rate. The doctors still didn’t know what was wrong with me but Dr. Sint upped my dose of the steroids to 500 milligrams a day. I wanted to be put on a ventilator. It would allow my body to rest and give me the oxygen I needed. Dr. Sint agreed and started setting up for the operation. Earlier in the morning, a friend of Rebecca’s named Pat came to visit, as did Arnie and Pedro. But what surprised me the most was when my close friend Tramell arrived. He lives in Seattle and had hopped the first plane to Austin. If I had known, I would have tried to talk him out of it like I did Rich but Tramell was sneakier. The last thing I remember from this day is Tramell showing up and shaking my hand – then blackness. I would not have any new memories until 3 day later when they took me off the ventilator.
February 21st: midnight, Dr. Sint intubated me and placed me on the ventilator. Arnie and Tramell visited and discussed different and embarrassing ways of cutting my hair while I was unconscious. Tramell and my mother had a serious talk about children and her fears of losing me. The ventilator was helping me breath but I still wasn’t getting any better. Dr. Sint upped my steroids to 1000 milligrams a day and admitted to my mother that he was all out of tricks. If this didn’t help, he didn’t know what else to do. Dr. Baptiste, my surgeon, came in a little while later and talked with my mother about the biopsy surgery. He told her my chances of survival were “grim” and the surgery would be hard on me. Baptiste asked her if she really wanted to put me through that. Mom took his meaning to be, if I’m going to die anyway why bother with the surgery. She told him this was the only way to figure out what was wrong and determine a method of treatment. We didn’t have a choice. She also told him that even if I died, she would still want and autopsy to find out what I had. I guess her answer was enough for Baptiste.
February 22nd: Dr. Sint had good news today, the x-rays showed the first signs of improvement and he lowered some of the settings on my ventilator. I managed to tolerate the lower settings. That afternoon, Dr. Baptiste performed the biopsy surgery and removed pieces from the upper and lower lobes of my left lung. He also inserted a chest tube to keep my lung from collapsing. Dr. Baptiste was surprised to find my lungs looked better than he expected. During the surgery, they had given me drugs to induce paralysis. I was still paralyzed when they returned me to my room so they hadn’t tied down my hands. The paralysis wore off much faster than expected and I managed to pull out my endotracheal tube and my NG tube before they could stop me. They called a code to get the tubes back in quickly. I remember none of this.
My Aunt Betty arrived from Switzerland late in the afternoon and Tramell flew home.
February 23rd: Dr. Sint told us the x-rays were about the same and he turned down the ventilators settings even more. I did okay on the new settings and, at 10:20 am, they took me off the ventilator and put me back on the Bi-Pap mask. The settings were maxed out to keep me oxygenated now that I no longer had the machine breathing for me. I remember waking up later that night and Kurt, one of the animators from work, was in my room. It was during the shift change when they don’t allow visitors so I’m not sure how he got in. He was delivering some balloons. In my mind, it was a very surreal sight. I don’t remember much else from the visit.
February 24th: the nurse woke me and asked what month it was. I told him it was September of 2009. There was some writing on the white board in front of me but my vision was blurry and it was too far away to read. When he told me the real date, I felt a little indignant and embarrassed. I had a lot more tubes and wires hooked up to me than I last remembered. I felt like Pinocchio. There was the chest tube draining fluid from my lungs. I also had a catheter tube and I realized I had to urinate but was holding it. I forced myself to let go and trust the catheter to do its job. Later, Dr. Sint came by to tell us the pathology had come back on the biopsies and they were now leaning towards a diagnosis of ARDS instead of Interstitial Pneumonia. This was good news as it was the lesser of two evils but they still didn’t have a definite answer. I was having a fair amount of pain so he put me on a Dilaudid drip. The drip would give me a constant feed of pain medicine instead of the nurses giving me a pain pill only when I asked for it. I guess the constant flow was too much for my brain in the state I was in because I started to have the most vivid hallucinations and dreams you could imagine. The room would spin or “breath” – contracting and releasing. At one point, as I closed my eyes, the room broke apart and reshape itself into different metallic shards that rotated around one another – like something out of the movies, “Dark Crystal” or “Dark City”. Nebulas would burn their way through the walls and devour the room until I was floating in space. It was fascinating and a little disquieting all at the same time. I knew none of it was real but that didn’t stop me from being shocked awake every time one hit. I also became very paranoid and the balloons Kurt brought disturbed me. I didn’t know how he had gotten in during the shift change or why he came alone – I didn’t even know Kurt that well. Ultimately, Betty had to find a new home for the balloons somewhere else in the hospital.
We also received a call on this day from my friend Arnie. His wife Jessica had given birth to their second son the day before. It made me smile; imagining Arnie with one child was hard enough but two little Arnies was too much. Jessica and the baby were in ICU (at a different hospital) due to some minor complications but all was well and the news was good. Eventually, they decided to name him Liam.
In the afternoon, they tried me on a normal breathing mask and I could handle it. I ate a little but it was hard. My appetite was gone. Betty, mom, and I were watching television when, suddenly, the black flat screen transformed into a dying old man with obsidian skin. He curled his head into his chest and silently cried out in pain. After dealing with the hallucinations all day, I decided I was done. I asked them to take me off the Dilaudid drip. I told the nurses I’d rather they give me the pain meds as I needed them, as before. After they removed the drip, the hallucinations and paranoia calmed down but my spotty and distorted memories lasted for days and weeks afterwards.
The Respiratory Therapist put me back on the Bi-Pap mask at night so I could have a little more oxygen while I slept. It made my throat so dry I couldn’t stand it. Rebecca fed me ice cream because it was the only thing that made my throat feel normal. I wasn’t able to sleep so Rebecca and I talked. She confessed how scared she was I might die. She teared up and I tried to reassure her but it shocked me to hear her talk about me dying. It’s not that I hadn’t considered the possibility but, up until this point, it seemed so unlikely that I could easily dismiss it. Could I have really died? Might I still? Rebecca’s last companion of five years had committed suicide and she had suffered greatly. It couldn’t happen to her again, I couldn’t die on her too. That isn’t fair.
February 25th: the nurse asked me to tell him the date again. I still got it wrong, but I was a month closer. However, I could now read the white board. Written on it, in big letters, was the current date. I felt like an idiot for not just reading the board when he asked me the date. My mother and aunt were there, on the day shift. At one point, Betty stepped out to make a business call and I talked to mom alone. I told her what Rebecca said about my brush with death. Mostly I wanted to see if Rebecca was overreacting. Mom wasn’t much more comforting, she agreed I had come very close and began to tear up herself. Betty returned and we watched television. At one point, we watched a nature documentary about Pandas. The documentary explained that the Panda could only have one cub at a time because there wasn’t enough food for her to support two children. If she does have two, she will have to pick one and let the other die. I thought about how cruel and unfair nature can be. Then something said there is no such thing as fair or unfair, it just is or is not. Life and death are the cycle of life and none of us was above this cycle, neither the Panda nor me. Nature, God, or whatever, doesn’t see me as any different than the rest of nature, certainly not more special, just another animal in the cycle. When my time comes, it comes and there is nothing anyone can do. No one to blame, no fair or unfair. Only human arrogance said otherwise. These thoughts reminded me of a quote, “All of this has happened before, and it will all happen again.” If you recognize that quote, then you are familiar with the theory of Eternal Recurrence, or Indian Philosophy, or you remember it from the opening of Disney’s “Peter Pan,” or you are a fan of the new “Battlestar Galactica” television show. I was remembering it in the context of the television show. If you are not a fan or haven’t seen “Battlestar Galactica,” the quote relates to the mythology of the human characters. The basics of the beliefs are this: all of life is one big story that has already been written. The outcome is predestined and everybody plays a part in the story. Once the story plays out, it repeats. This is a simplistic and metaphysical definition of eternal recurrence. The “Battlestar Galactica” twist (at least I think it is unique to the show) is that when the story repeats, we are reincarnated to play different roles in the tale – the killer may be the victim, the priest might now be the politician. “All of this has happened before, and it will all happen again.” But here is the thing, since the players in the story change and those players make different decisions than the previous players, the story does subtly change. In my state of mind, this seemed liked a profound combination of destiny and free will. It was a belief that combined the two. What will be will be but the decisions we make still count, even in the smallest, most un-recognized ways. The devil is in the details, but so is God. Most of us don’t take the time to appreciate those tiny decisions we make every day but small changes can lead to great revolutions. I liked this a lot and the quote became my mantra for the rest of my stay. It ran through my head almost constantly for days, comforting me, until it gradually subsided – until I didn’t need it anymore, I guess. If you are worried I’m trying to turn a science fiction story into a new religion, don’t. Scientology has the market cornered on that one. I know enough about religion to recognize the different beliefs the writers of “Battlestar Galactica” pulled from in their story. So, if it helps to think the Indian Wheel of Life and eternal recurrence inspired this philosophy instead of a sci-fi show, then go ahead.
In between my philosophical mind-wanderings, there were a few positive signs. The chest x-rays were looking better and my oxygen saturation was holding strong. They eventually put be back on the Nasal Cannula, which was a relief from the oxygen masks I’d had to use before. I was able to eat a little more. The doctors started talking about taking out my chest tube and moving me to the recovery floor (however, the floor was full so they didn’t have any available rooms yet.) I also had a couple of visitors; Pedro and Andrew visited again, along with another one of the environment artists named Robby. Later that night, when Rebecca started her nightshift, her friend Bianca came by and brought several homemade snacks. Again, the genuine concern and kindness of people struck me. I felt very lucky.
I slept using only the Nasal Cannula and got about five or six hours straight. It was the most I’d slept (without drugs) since I’d been in the hospital.
February 26th: mostly uneventful. Wearing the Nasal Cannula made talking possible again so I visited with my mother and Aunt Betty. Dr. Baptiste’s PA (physician’s assistant) came in to check the chest tube and said she thought it was ready to come out but Baptiste decided to wait another day. Having the chest tube removed scared me. I couldn’t imagine how they would get the tube out and it was sure to be painful. The nurses said they would give me pain meds before it was removed – no big deal. Dr. Sint stopped by and told us the pathologist had finally signed off on a diagnosis of ARDS. It was official now. He also lowered the amount of oxygen I was getting and I stayed saturated at those levels. I slept fairly well that night.
February 27th: at 3:34 am local time, a devastating magnitude 8.8 earthquake struck Chile. It was one of the strongest earthquakes ever recorded. The Chilean authorities announced over 800 people were killed but later said they overestimated the number, As of March 20th, they are saying 342 were dead due to the quake. Regardless of the number, over half a million are without homes and aftershocks are still hitting Chili. After the initial earthquake, a tsunami warning was issued for most of the Pacific. The quake was stronger than any nuclear bomb ever tested and moved one whole city 10 feet from its previous location. Is that fair?
That morning, Dr. Baptiste’s PA came back and started talking about removing the chest tube. Everyone was moving fast and not really giving me time to think. There was a high school student with the PA to watch and learn. They said I might feel a little pain, I thought, where’s my pain meds? But clearly, I wasn’t getting any. I jokingly said I would only cry a little. The high school student looked terrified and nurse thought I was serious. She tried to reassure me everything would be okay. The PA rolled me on my right side so she could get to the tube in my back. She grabbed, twisted, and yanked. I could feel it turn in my body, from my mid back to my upper left breast. There was the most intense, searing, and burning pain. I felt something drip in the empty cavity left behind, like lava dripping into a cave. The whole process took seconds. The pain was not little and all I could do was suck in my breath and wait for it to pass. Which it quickly did but the memory of hot lava in my chest and the awful drip stuck with me for days afterwards. Once it was over and everyone had left. I laid back in bed. There was a great sense of relief to have the tube removed, like a discomfort you didn’t realize you had until it’s gone and then you appreciate how uncomfortable it really was.
My mother, aunt, and I watched the news coverage of the earthquake in Chili. They issued a tsunami warning up the west coast of the U.S., Hawaii, and several other Pacific islands. CNN had live coverage from Hawaii. Well, they keep showing the same footage of people fleeing to the high ground and called it “Live” anyway. They also had their cameras fixed on an open slot of beachfront, just waiting for the wall of water to come crashing in, devastating the island. The wave was late. It was supposed to have been there thirty minutes before. So, the newscasters babbled on trying to fill the dead air with any inane thought that ran through their minds. It was like watching a bunch of junkies jonesing for their fix. At this point, I was sure the tsunami warning was more media hype than an actual danger. A couple of hours later, CNN reported they were canceling the warning. The reporters never got their money shot, Hawaii was not destroyed, neither were any of the other islands in the Pacific. Finally, CNN had no other choice but to cover the actual story in Chili.
Around lunchtime, the nurse showed up to tell us they had a room available upstairs and I was getting out of ICU. My mother and aunt packed up our stuff and took it to the new room. A male aid arrived with a wheelchair for me. Once it was just the nurse, the aid, and I, it was time for the catheter to come out. I had been dreading this moment. I guess the nurse took her cue from the PA who removed my chest tube because, before I even knew what she was doing, she grabbed the catheter tube and yanked with all her might. God, it hurt and I let out a scream, however, the male aid bellowed an even louder scream and kept yelling he was sorry. That unnerved me; he was not supposed to be shocked! For a short time, it seemed the catheter didn’t want to let go, and then it was out. I felt like I’d be castrated.
The new room was nice, it had a better television, it was less medical and more homey, and (best of all) it had its own bathroom. The bed wasn’t as comfortable but other than that, it was a welcomed change. When I told my mother about the catheter trauma, she seemed a little perplexed. She said once they deflated the balloon inside that held it in place, it should have slid out relatively easy. I honestly don’t remember the nurse doing anything but tugging on the tube, god I hope she deflated the balloon. After a couple of hours, I decided to see if I could make it to the bathroom on my own. It took a lot out of me but I made it. I didn’t really have to go but it was my first taste of independence in a long time so I just sat on the toilet and reveled in it. No more bedpans, no more potty-chair. It is amazing how such things can become so important.
The remainder of my stay in the hospital was mostly monotonous. It was just a slow march to recovery. My biggest problem was the condition of my body. I was never a weightlifter by any stretch of the imagination but I was of average strength and my legs had always been one of my strongest features. After all the treatments, they now looked like toothpicks, where once there was muscle now hung loose skin off bone. The combination of the steroids and being bedridden for 3 weeks left me with a body I barely recognized. By the time it was over I would be thirty pounds lighter and almost all of it was lost muscle mass. Physical Therapy had visited me twice in ICU and got me out of bed and sitting up in a chair. They had me lift my legs a few times and this was enough to leave me exhausted. Now that I was on the recovery floor, they visited a few more times. They brought me a walker and we walked out into the hall and back about 10 yards, this was considered a major improvement.
In addition to the weakness, my skin had become very dry and sensitive. The body tends to shut down functions that are not necessary when we are sick so it can focus on healing. Apparently, my body didn’t think keeping my skin moist was a high enough priority. I had to use lotions to keep my feet and hands from cracking. But the bigger problem was the hole in my back where the chest tube had been. It was still leaking fluid and the wound had to be bandaged. Being redheaded and whiter than a fish’s belly, my skin is sensitive to begin with but now, with it dried out, the tape they used for the bandage caused large red areas of irritation and tore my skin during one changing.
Steroids are not fun. I don’t know why people would voluntarily take them. They made me irritable and I lost my temper a couple of times – with the nurses, with the doctors, and with my family. Most of the time, I was in the wrong. I would have to remind myself it was the steroids making me feel this way and then apologize profusely. Sometimes I was in the right but my temper got in the way of handling the situation correctly. One tech in particular drove me crazy. She would talk a mile a minute about nothing and ask questions but then not listen to the answers. The first day she was my tech, she came in right after I’d had a session with the Physical Therapist. I was wiped out. She checked my vitals. My oxygen was low and my blood pressure was high. They were still within the acceptable range but she was concerned anyway. I explained that I had just finished with PT so the readings were really no surprise. She acknowledged me and then continued to fuss over the reading as if I had said nothing. She took it upon herself to change my oxygen settings; she was a tech, not a nurse and had no authority to make changes to my oxygen levels. It was completely unnecessary and as soon as the Respiratory Therapist came by, he changed them back. The next day I was stuck with her again. This time she tried to change the bedclothes even though they had been changed less than an hour before. She also wanted to give me a bath. I told her I would take a bath when my wife arrived and could help me. When she ignored this and tried to wipe me down with a wet cloth, I finally lost it. I took the cloth from her and repeated that I didn’t want a bath now, or to be wiped down, or the bedclothes changed. If I needed anything I would ask and she needed to shut up and pay attention – or something to that effect. She looked hurt, but at least I knew she had heard me. She argued that I needed to keep up with my hygiene. Again, I told her I was going to have a bath tonight, I was keeping up with my hygiene, and her actions were unnecessary and unwanted. She scuttled out of the room. I managed to contain my anger until she was gone and then I threw the cloth at the sink as hard as I could – which was comical because I was so weak the cloth only made it about half way and landed on the floor. There were a few more incidents with one or two nurses but the tech was the worst. It wasn’t just that she was annoying, her lack of attention was potentially dangerous for patients, and it offended me.
My mother flew home on Monday, March 1st. I know she wanted to stay. I think she was afraid something would go wrong as soon as she wasn’t there. My family and I tend to have a superstitious side, or at least a strong belief in Murphy’s Law. Part of me didn’t want her to leave either. I wanted mom there to advise me, to be my advocate with the doctors, and to guide me thought the insurance issues. I also wanted her to be my sounding board, to tell me when I was not being practical or if I was getting pissed off at the wrong things. She’s good at that. Instead of telling her all of this, I assured her I would be fine. I’d disrupted her life enough.
My aunt Betty was scheduled to fly back to Switzerland the next day but the airline canceled her flight at the last minute due to snow in Atlanta (of all places.) She spent one more day watching over me. It was nice because I don’t get to see Betty often. When I do, it’s at family gatherings, and we don’t really talk one on one. She flew out on Wednesday, March 3rd and had one hell of a delay in Atlanta before finally making her flight on to Zurich.
On the morning of the 4th, Physical Therapy took me off oxygen, got me into a walker, and we walked around the nurse’s station and back to my room. It took a while but I managed to make it without my oxygen levels falling or my pulse rate sharply increasing. Unbeknownst to me, this had been the “test” to see if I was ready to go home.
As the day passed, I was thinking more about the prospect of going home. I started to realize that my recovery wasn’t going to take a week or two, it was going to take months and staying in the hospital really wasn’t doing me any good at this point. I called my mother to get her opinion and she agreed it would ultimately be better to go home. I was actually on the phone with her when Dr. Bashar, the original doctor assigned to my case, came in. She said they were ready to discharge me that day, in a couple of hours in fact. Since I was thinking the same thing, you’d think I’d be happy but roid rage is a bad thing. Up until now, the talk of sending me home had been couched in “maybes”, “we’ll see how you are doing”, and now the doctor was telling me to get out! It shocked me and I went ballistic. Once I calmed down and realized, while rushed, it was still what I wanted. I apologized. Dr. Bashar said they would provide us with a list of the medicines I would need to take at home. They would be clearly listed with the amounts and what time to take them. We would also be provided with a walker, a potty-chair to sit over our toilets, and they would issue us an at-home nebulizer so I could continue my breathing treatments. They would arrange for a home health nurse and at-home Physical Therapy. All that sounded great. Rebecca started to pack up our stuff and we waited for the process to start. Unfortunately, what should have taken a couple of hours to sort out, took most of the day because these things were not provided or we had to fight to get them. A social worker showed up briefly to get our information so he could connect us with the home health representative that was approved by our insurance, then we he was gone. We waited. Eventually, my nurse came in and asked if we were ready to go. We told her we hadn’t been given any of the things we were promised, we hadn’t been told what the next step was, nothing. She looked perplexed and asked what else we needed. Rebecca reminded her of the list of medicines, the walker, the chair, etc. The nurse said the list was ready. When we asked to see it, she said we’d get it before we left. I told her we wanted to see it now in case we had questions. The nurse seemed very reluctant but agreed. There was also the matter of the PICC line still in my arm. They needed to remove it before I could go home. It had been a long procedure to put it in and I had no idea what would go into removing it. After the painful ordeal with the chest and catheter tubes, I was a little nervous about the PICC. The nurse just said they would remove it before I left. Rebecca and I were starting to get annoyed but when my nurse returned with our “list” of medications, things got worse. It was a print out of every drug I’d ever taken while in the hospital, many of which I was no longer on. Most of the drugs were abbreviated in a way only a doctor or nurse would recognize, some were crossed out, others circled, and there was nothing saying when to take the drugs or if we should taper them down. We told my nurse that the printout was not what Dr. Bashar promised us. She argued with us, saying this was all they give to patients. It went round and round until we finally demanded she get Dr. Bashar back to sort it out. She returned, not with Dr. Bashar but with the head nurse. Once we explained the problem, the head nurse agreed with us and promised a clearly hand-written list of what we needed. A simple solution really but it took an hour of argument to get there. In the meantime, the home health representative showed up to deliver my walker, however our insurance would not cover the cost of a potty-chair because it was a “luxury item.” This infuriated both Rebecca and I. A potty-chair isn’t that expensive but it was the principal – the ridiculous notion that a 38-year-old man would actually consider getting a potty-chair a luxury. It wasn’t a luxury. It was a necessity. I could not get on or off the toilet by myself without some kind of support. This turned into another row but the insurance company wouldn’t make an exception. I guess they’d rather pay for another hospital visit when I cracked my head open falling off the toilet, than to cough up 34 bucks for a potty-chair. The next argument came when the social worker told Rebecca he couldn’t give us a nebulizer like he said they would. Instead, the doctor would write a prescription for one. Since most pharmacies don’t keep things like nebulizers in stock, they would have to order it and that would mean I would go 24 to 48 hours without the breathing treatments I needed. In addition, they said they couldn’t show us how to use the nebulizer because there were none in the hospital to use as an example. After arguing about this and getting nowhere, it turned out that the home health rep could, and did, provide us with a nebulizer – no prescription needed. The only things that were setup as promised, without argument, was the walker, the home nurse, and the home Physical Therapy. Why everything else was made so difficult, I have no idea.
With all these issues resolved, they removed the PICC line. It was surprisingly easy – they just pulled it out, no pain, no fuss. Rebecca packed up all our stuff, the nurses helped us get it loaded into the car, and we were headed home. As we left, I asked Rebecca who was happier we were out of there, the nurses or us?
The home nurse did come out for the first couple of weeks I was home to check on me. The chest tube hole in my back finally stopped leaking and healed up. Once that was under control, the nurse stopped visiting. I also had a Physical Therapist visiting me a couple times a week. With each visit, she would add some more exercises until finally she had covered everything. Then her visits stopped and it was up to me to continue the exercises on my own.
I had a follow up appointment with Dr. Sint in his office. He said my chest x-ray was looking good but there was still a little bit of something left in one of my lungs. He seemed happy with my progress but felt I would need at least another month before I’d be ready to return to work. It can be very depressing to see how long it takes the body to heal. It often seems like there is no progress at all. I feel like I’ll never be back to where I was. Yes, I have gotten a lot stronger but now I’m only strong enough to overestimate what I am capable of. I get worn out quickly and I still have pain occasionally on the left side of my chest where the tube was. That area, from my breast to my stomach is also numb. It’s been numb since they put the tube in. When I asked, in the hospital, if the feeling would come back, the doctors said it would. However, it’s as numb now as it was then. When I didn’t see any improvement, I asked the doctors again; will this go away? Now they are saying it could take six months to a year for the feeling to get better but it will probably never be one hundred percent. And it may never get better – I’ll just have to wait and see. I have also realized, while writing this, that my mind took quite a beating during this whole thing as well. In trying to piece together the events and talking with the people who were there, I’ve realized how much I don’t remember or have remembered incorrectly. Losing my body was depressing but losing my mind enraged me. It’s all very distressing.
About a week after I was home I got an instant message from an old friend I haven’t spoken to in over a year, named Frank. He’s an unusual guy and said something about not wanting to contact me until I was healthy enough to talk. He was afraid if he talked to Rebecca or my mother while I was sick, he would say something inappropriate, so he didn’t call. I doubt he would have but, with Frank, you never know. He called me the next day and the first words out of his mouth were “Hey Lazarus man!!” it made me laugh. We had a good talk and traded war stories. I told him mine and he told me about his impacted wisdom teeth that were infected and caused his whole head to swell up. It was nice to talk with Frank again. He always has a somewhat skewed view of reality and that makes for interesting conversations.
As of this writing, I am preparing to return to work, finally. I’ve been out since February 8th when my mother arrived in town. My office did set me up with a laptop at home so I could access my work email and try to keep up with what’s going on. This turned out to be a little depressing because it seems my illness couldn’t have happened at a worse time. Everything is in flux, many things are changing (probably for the better), and my team has had to figure out a lot things without me. I’m planning to go back tomorrow, April 19th. When I do, I’ll be the one who has to learn how things are done instead of teaching others. But there is nothing I can do about that. I have an amazingly talented team working with me and I know they are on top of things.
So, now for the really bizarre part of the story. It began as I laid in the ICU listening to the PA and my mother talking about removing my chest tube. As I listen to the exchange, I realized I’d heard all of this before. It was the strongest sense of déjà vu I’d ever experienced. I could almost guess the next word in the conversation. It’s not the first time I’d ever had déjà vu but never to this intensity and never for this long. The sensation lasted for the rest of my stay in the hospital and my first week back home. Almost everything that happened felt like it had happened before. Of course, there were some exceptions. I didn’t see the removal of the chest tube coming, but the feeling of the drip in my chest after it was removed, I did “remember.” This lasted so long and was so strong I actually began to wonder if I had been through something similar in the past and had somehow blocked it out. I called my mother and asked her if she had ever heard of anything like this from other patients who had been on a ventilator or gone through some of the stuff I had. She hadn’t and couldn’t imagine why I was having these feelings. I can’t explain it and don’t know what to make of it – if anything. But, once again, the quote ran through my mind: “All of this has happened before, and it will all happen again.”
March 25th: I had a follow up appointment with the surgeon, Dr. Baptiste. They wanted to see how things were healing, making sure there were no problems. I drove to the appointment. I was still new to driving and it was nice – another landmark of independence since leaving the hospital. We were expecting to talk to Dr. Baptiste but instead one of his PA’s came in. That seems to be how he works. She was the only one of his PA’s we liked so it was okay. She checked out my wounds and said everything looked good. There was still something showing up in my lungs on the x-ray but she didn’t know if it was scar tissue or remains of my illness. Once she finished the exam, she told us a story about another patient they were currently taking care of. She said his case reminded her of me.
The patient is a year older than me and has exactly the same problems I did. When he started to get sick, he tried to treat it with over the counter drugs for a couple of weeks. Just like me, he became too sick and his family took him to the hospital. He was diagnosed with ARDS. He too was placed on the ventilator except he has now been on the ventilator for 3 weeks – I was only on one for 3 days. They still can’t get his blood to oxygenate and they’ve put him in a special bed that constantly rotates him into odd positions trying to get his body to oxygenate. I know he’s 39 years old and has a 9-month-old baby. I assume he has a wife, family, and friends that are all worried about him. I assume some of them are praying and others are keeping him in their thoughts. I’m sure he has received cards, flowers, and gift baskets from those concerned.
He is not expected to live. He may already be dead, I don’t know. The doctors have done everything they can. He and I shared the same illness, we are almost the same age, he was healthy before all this happened too, and has a new child. I lived, he probably will not.
Is that fair?