The Worst Month of My Life

Note: This article chronicles the near death of my beloved wife Claudia Maria Arevalo-Lowe in February and March of 2003. She survived this illness for another two years, finally passing away from Septic Shock due to diabetes due to the asthma medications required to keep her breathing.

I miss Claudia terribly every single day. She is my best friend and soul-mate. I am surviving and moving on with my life, but there is an emptiness which I pretend isn’t there.

In my experience there are some good doctors, nurses and other medical practitioners (pharmacists, technicians and so on). My own personal physician and his staff are some of the best there are. Unfortunately, the occasional glimmer of competence is so vastly outweighed by the massive incompetence (and, in the case of psychiatrists and their ilk, malevolence) of the field as a whole that it’s amazing we allow the current state of affairs to continue. Are people so afraid of disease and death that they will grasp at any solution offered by anyone – even the babbling idiots that currently call themselves doctors? Do we, as a group, simply refuse to see not just downright incompetence but the actual maliciousness that exists in one of our most lofty professions? Why do we put medical doctors on such pedestals in light of their constant failures?

Okay, perhaps I was naive and maybe even a bit stupid. No really. I have an IQ of around 150, yet now I feel just plain idiotic. All of us have a day of reckoning. A day when we learn that something we understood to be true, something obviously real and factual is actually false. The day like the scene in the movie “The Matrix”, when Neo is pulled from the simulated world into the real world. Imagine the shock of understanding that comes when one learns that something basic is a lie.

During these past few weeks, I learned how Neo felt when he heard the words “Welcome to the real world”.

My world started to change on February 24th, 2003. It was a Monday after a very long weekend, which followed a long and hard week. My wife was having difficulty breathing, her asthma was complicated by what appeared to be an infection in her lungs, and her foot was giving her extreme problems. She had filled with water (a side effect of the drugs used to handle asthma), and this resulted in two huge blisters on her feet.

The weekend was rough but Claudia refused to go to the hospital. By Monday, however, it was obvious that there was not a choice: her breathing problems had gotten to the point where it could not be handled at home by me anymore. Even though the doctor had supplied me with many different options, I had run out of things to do to keep her breathing and functional.

I had a plan: get Claudia down the stairs, into the car, and over to Downey Community Hospital. Our doctor (Alan Frischer), an extraordinarily competent person, would preside over her handling. Since she and I had been going to him for almost a decade, this seemed to be the ideal solution.

Unfortunately, events did not support this plan. At 7:00 am on Monday morning (February 24th), I told Claudia I felt she should go to the hospital. Much to my surprise, she agreed without an argument. Now, Claudia hates hospitals and I suddenly felt a small chill go down my spine. If she was agreeing to go, she felt bad indeed.

I asked her to get ready to go and she started the routine. Normally this requires about fifteen minutes, and she was still not finished over 2 hours later. Her breathing was so bad it was impossible for her to do anything quickly. I finally interrupted Claudia doing her routine and told her we were going now. She agreed and started towards the stairs leading down to the car.

She got to the top of the stairs, looked down then back at me, and said she was not going to make it down. I pointed out that she was going to the hospital and if she couldn’t get down under her own power I would have to call 911.

When Claudia, the woman who has told me on more than one occasion that she would divorce me if I called the paramedics for her, said that would be fine, I felt a chill go up and down my spine. Now I knew without a shadow of a doubt that she was very sick. Very sick indeed.

I rushed to the phone and called 911. I had this idea that I could ask the paramedics to come over and ask them to carry her down the stairs to our car. I then thought I could drive my lovely wife down to our hospital so she could be attended by our doctor.

The paramedics arrived in less an three minutes (here in Los Angeles we have an excellent emergency system). I went outside to guide them to our house. I still had this idea that they would simply help me get Claudia down the stairs. Sigh.

Seven men jammed into our apartment and looked my wife over. She was barely conscious, and was having extreme difficulty breathing. I was quickly informed by one of the emergency team members that my plan was unworkable – they had to get Claudia to the closest hospital immediately. If they didn’t, then they were afraid that if something happened to Claudia I could sue them (my, how that short, three character word forces so many things to happen). They were going to drive her to the nearest hospital, which was Queen of Angels.

Angels my foot. More like Angels of Lucifer. But I’m getting ahead of myself.

I watched as they put a mask on Claudia’s face to give her some oxygen. I noticed that her cheeks were a beautiful shade of blue and although conscious she didn’t seem very aware of what was going on. The paramedics spent a couple of minutes tying her to a gurney, then carted her out the door, down the stairs and into the ambulance. I jumped in with them, as the hospital is within walking distance and I didn’t feel like driving.

I had been with Claudia to the hospital a few times in the past and I knew the drill. Sometimes the hospital will allow the spouse into the emergency and sometimes it won’t. This time, the hospital would not allow me to go in with her. I had some things I needed to tell the doctor, but they simply were not interested. I felt I had important information to relay – such as how she got this way, what drugs I had administered and her past medical history, but my attempts to pass this information on were ignored for quite some time. I wondered how the doctors could be making intelligent decisions about what treatments to give her without any information, but there was nothing that I could do.

For example, I thought it might be important for them to know that I had administered, at my doctors orders, an Epipen (this drug, essentially adrenalin, will get an asthmatic breathing again very fast). This would make Claudia’s heart race and might make her pulse higher than normal. I also had information about her long medical history that was vital.

After a couple of hours, I was finally allowed to get into the emergency room with my wife. She was unconscious and had a large number of bottles and tubes hanging off her arm (she had a PIK line in her arm already due to taking intravenous antibiotics for an infection). As I gazed down upon her I realized how vulnerable she was and understood how much danger the woman was in at this time.

As far as I could tell, the emergency room doctor was not of much value. He would not talk to me for more than a few minutes, simply telling me she was being moved to ICU in a few hours (as soon as they could get a room). Her condition was very serious. He did tell me that if we had waited a few hours more to get her to the hospital Claudia would not have survived. That was a sobering thought.

I decided it would be a good time to go home for a while. Claudia was going to be moved upstairs to a room, and there was not much that I could do in the meantime. The nurse told me she would be moved within a few hours. Time enough for some badly needed sleep, some food, and some time to recover my composure.

What I hate about the medical profession, especially doctors, is they believe they are gods. That is not what they say, of course, but it is true that they understand they have the power of life and death in their hands. A brain surgeon can make a cut one way and the patient lives, a tenth of an inch to the left and the patient is a vegetable, and another tenth of an inch and the patient dies.

Not only do most doctors seem to believe they are absolutely gods, but they also simply do not care about their patients. Recently I watched a roundtable discussion on television which involved a number of people in or related to the medical profession. On this show, these people debated the ethics of telling the patient this or that, the moral issues they faced and the agony they went through with each illness.

It was absolute bull. In the years that I’ve been married, my wife has seem perhaps forty doctors and hundreds of nurses and medical technicians. I can honestly say that only two of those doctors really cared about ethics, how my wife felt or had any concern about her once she left their examination room. Only two of those doctors have ever treated her like a human being – to the remainder she was an object, something causing them distress. In fact, I’ve seen more ethics in the corner butcher than in 95% of the doctors and other medical “professionals” that I’ve come in contact with.

Part Two

I sometimes wonder who was responsible for setting up the way medicine works in the western world today. It’s pretty screwy, when you think about it. The entire focus on fixing broken bodies, instead of keeping people healthy, is, well, just weird and is largely responsible for the medical mess our world has found itself in lately. All of the doctors that I have known have been completely clueless on the subject of alternative techniques – even such simple concepts as vitamins were beyond the majority of them. When Claudia was in the hospital recently, her doctor (Dr. Stern) was not aware of the value of St. John’s Wort in helping with depression and mood changes. Several years ago, my wife was on major pain killers for severe chronic pain in her back – and this was completely resolved with a few visits to a chiropractor. It never even occurred to her many doctors that her pain could be the result of a nerve being pinched by her rib, yet the chiropractor was able to completely handle it so she no longer needed pain medication at all, and avoided the risky and obviously unnecessary surgery recommended by the medical experts.

I returned to the hospital a few hours later to find out what was happening with my wife. She was still in the emergency room and, to tell you the truth, she looked pretty bad. She had tubes going into her arm and a more or less permanent nurse watching over her.

This nurse was a big man who could have easily passed for a wrestler. He had huge arms with tattoos everywhere. However, I quickly realized he was the first competent person I had seen since Claudia arrived at Queen of Angels. He knew what he was doing and he explained it all to me in terms that I could understand. He also listened (the first person to do so that day) and actually seemed to care about my wife.

He asked me to help him take her temperature and insert some tubes here and there, which I was happy to do. I also helped him turn her over, and he allowed me to stay in the room for as long as I wanted. I stuck around for about an hour, then had to leave because the hospital finally was moving Claudia to intensive care.

I met the orderly upstairs and watched as they moved my wife from one bed to another. The nurses chased me out of the room and told me to come back in a few hours. I went home and caught a little sleep.

The next day I decided to work from home – I have a very good internet set up and thus could actually get some real work done from my little office in our place. I wanted to be near my wife in case I was needed.

I went over to the hospital in the morning and ran into Dr. Sterz. I had some difficulty with this man from the beginning as he tended to talk to the floor instead of me – and for some reason I find it annoying. I kept wanting to shake the man, telling him “hey, I’m up here!”.

Dr. Sterz didn’t waste any words, and he certainly didn’t spare any human feelings. I ran into Dr. Sterz half a dozen times during Claudia’s stay in the hospital, and as far as I can tell the man had no feelings at all for the human beings under his care, and even less for their relatives and friends. He simply didn’t care one way or another about my wife or me or what we were going through. It was plainly obvious that to him she was a broken body and his job was to get her patched up enough so she would become someone else’s problem. It really was that simple to him.

He did, however, strike me as competent. Uncaring, yes. No feelings of any kind for my wife, yes. But competent. So I decided to allow him to remain on as my wife’s primary doctor during her stay in the hospital.

As soon as Dr. Sterz and I exchanged introductions, I asked him how my wife was doing. His answer was shocking, “Terrible”, he said, “absolutely terrible.” He explained, briefly, that she had a lung disease and he was not sure at this point whether or not she could be saved. He said this with about as much emotion as if he was discussing what have for dinner. It was obvious that he didn’t care that he was talking about someone who was loved, who was a human being. To him, my wife was just a set of data on a series of reports.

I went away from that meeting a little disturbed. I couldn’t quite put my finger on what was bothering me, but something didn’t feel right.

While I was there, I did tell Dr Sterz that my wife was under no conditions to receive any psychiatric treatments of any kind. No psychiatric drugs and no visits from psychiatrists. Period. I made sure this was written into her chart and was clear to everyone there was to be no discussion. This is one area where my wife and I will not compromise – we don’t like psychiatrists and don’t want anything to do with them and their ilk.

The next day I met her other doctor, a man named Dr. Rothfeld. He was her pulmonary specialist. Dr. Rothfeld also had the annoying habit of talking to things other than me. While the words came out of his mouth he pointed his eyes at the floor, the ceiling, the bed, the wall, the chart (mostly the chart), anything but me. It’s a very strange feeling to be in a conversation with someone who won’t look you in the eye. Creepy.

Dr. Rothfeld was even more uncaring and abrupt than Dr. Sterz. When I asked how my wife was doing, this man said, “she’s doing horrible”. He then turned back to his chart. I wanted a little more data than that, so I pressed for details. This seemed to really annoy him, not that I cared about annoying him, but he continued after a long pause, “she’s the worst patient I’ve ever seen. She won’t stop moving. She keeps trying to take out the breathing tube, she moves her legs, she pulls out her tubes.”

The man actually threw his hands in the air at this point, “I don’t know what to do. I need to get a psychiatrist in here so she can be placed on better drugs so she’s stop moving around…”

I interrupted Dr. Rothfeld at this point and told him, in a tone of voice that allowed for no argument, that if a psychiatrist stepped foot into my wife’s room he and the hospital would get a lawsuit like none they had ever seen before. He glared at me and mumbled something to himself that I chose not to hear, then spent a few minutes attempting to change my mind. I cut him off, “the subject is closed.”

One thing impressed me about Dr. Rothfeld during the next few days – he was competent. He, even more so than Dr. Sterz, was an uncaring, almost inhuman person, but he did know his subject. His job was to help the body repair lungs, and that’s what he did with my wife.

It was clear from the beginning, though, that Dr. Rothfeld shared the exact same goal as Dr. Sterz – to get this patient to the point where she became someone else’s problem.

Dr. Rothfeld would have been happy to leave the discussion at that point, but I needed more information. I wanted to know what he was going to do and what was going to happen.

He explained, very briefly, that her chances for survival were very poor. Her lungs were full of fluid and were very diseased. She was being kept alive with a breathing machine and was being held unconscious with extreme doses of sedatives. Huge doses, in fact, well beyond what is normal and accepted.

I pressed as this did not really answer my question, and Dr. Rothfeld angrily (and I didn’t ever find him in a mood other than anger or outright hostility) told me that “she’s a smoker, what do you want me to do?” He added her lungs were seriously damaged, perhaps permanently, and even if she did survive she might never leave the hospital again and she might need a tube inserted into her throat – especially if she kept trying to pull out the breathing tube.

I spent a few more minutes with my wife then left. I walked home, barely keeping myself together, until I just started to cry uncontrollably. It was a rough trip home.

Part Three

While Claudia was in the hospital I had plenty of time to observe people as they performed their duties. It was interesting to watch the staff at work; their routine was different than I would have expected. In fact, it clear that I was watching a finely tuned machine at work, one that had been crafted by many people for decades or longer. After over three weeks of visiting, here is what I determined:

1. Doctors read reports
2. Nurses create reports, which are summaries of the data recorded by machines, technicians and nurses aides.
3. Nurses aides do most of the work
4. Technicians operate the machines and fill in detailed logs, which are summarized by the nurses reports

You will notice that the patient and the loved ones are missing entirely from this picture. I determined that the job of the patient is to lay in their beds, be quiet and do what they are told. They are merely the subject of the reports. Any patient that does anything out of the ordinary is medicated or “treated” by a psychiatrist. Patients that actually want to move or act alive are bothersome so they must be made calm and relaxed, so they can be tested, so the nurses can fill out their reports.

And the loved ones? They are simply annoyances.

A few days into Claudia’s stay, Ivisited her in her room in CICU. She was heavily sedated with so many drugs that it was amazing, and still the nurses had to keep her in restraints in order to keep her from pulling out her breathing tube.

The doctors (Sterz and Rothfeld) were very upset with Claudia. They both told me if she continued to attempt to pull out her breathing tube they would be forced to cut a hole in her throat. I was not sure why, but this made me very uneasy. I couldn’t put my finger on it, but something with their attitude seemed to be wrong.

I decided it was time to see if I could see what was going on. It was time to look at Claudia. You see, I felt that Claudia might be trying to communicate something. There was a reason why she was moving around restlessly (she didn’t normally act that way), and she had some goal in mind regarding the breathing tube.

I began by questioning the nurses (I tried to talk to the doctors, but they could not be troubled to have a real conversation with a live human being). What was Claudia doing? How was she moving? What movements had she made over the late few days?

At first I thought the breathing tube must be extremely painful, so perhaps Claudia was trying to rip out the source of the pain. Dr. Rothfeld just snorted and said unconscious people don’t feel pain. Sigh, such arrogance. It must be so lonely to believe that human beings are simply bodies.

The nurses were more helpful. One nurse, in particular, told me that other patients told her the tube was uncomfortable but not really all that painful. I asked if the disease could be making it more painful – and the nurse said she didn’t believe so.

A picture began to emerge. I became more and more convinced that my wife was trying to accomplish something from the depths of her drugged sleep.

It was time to see for myself. I stood there with Dominic for a while, just watching Claudia move. Something became apparent – her movements, as I suspected, were not random. No, actually, far from it.

Claudia was moving her legs. She was actually trying to get her legs up in the air, as if to say “look at these!”

Well, I thought, if she wants me to look, perhaps I should look. I looked at her legs and her feet, and immediately something became clear.

You see, Claudia’s asthma has been treated for years with steroids. These steroids have a very unpleasant side effect – they fill the body with water. Lots and lots of water. Before she went to the hospital, Claudia’s legs and feet had so much water that the skin bulged out and fluid actually leaked out from the pores. In fact, one of her feet had leaked so much water that a huge water-blister had formed and turned purple with a mixture of blood and water.

Claudia had been having trouble with her legs for some time (over a year) beginning with a bruise (a very large one) that she got when a bottle dropped on her leg. A doctor cut off the bruise, and the resulting wound was exceptionally painful. The pain had been masked for the better part of a year with a twice-daily application of EMLA, a cream prescribed to numb pain.

As I examined Claudia’s legs I noticed a bandage over one foot. I assumed they were just covering up the bruise – then realized Claudia might be in some pain from the bruise. I asked the nurse what was being done for her leg pain. After the usual dumb look (unconscious people don’t feel pain, after all) I got the answer that nothing was being done.

I was very thoughtful for the rest of the day, and returned that evening with another friend (Jim Frankel). Jim is a wonderful friend who helped Claudia and I more than can be communicated.

A new nurse was on duty, a woman by the name of Anne. After seeing Claudia, I asked Anne if I could put some EMLA on Claudia’s leg. Anne angrily answered that no EMLA was needed. After all, if it was needed the doctor would have prescribed it! Besides, who was I to say what was needed. I said some angry words to Anne and stomped back into Claudia’s room.

Jim pointed out that Anne was actually a good person and suggested that I apologize. I decided he was correct and spent a few minutes conversing with the lady. I told her I really cared about Claudia and apologized for my outburst. I explained that I had been caring for her for years, and thus had gained some knowledge of how this woman worked and how to help her.

Anne understood and from that moment on we were best friends. It was an astounding change, from the “you don’t know anything, how dare you question me” attitude to the “we’re practically best friends” Anne that I came to know.

I asked Anne if I could apply some EMLA to Claudia’s wounds on her legs. Anne said the hospital didn’t have any EMLA, to which I replied that I had some. Anne said if I got my own it would be fine for me to apply it.

I practically ran home to get the EMLA, then ran back (stopping to gather up Dominic). We went back to the hospital room, closed the curtains and removed Claudia’s dressing from her leg.

I was shocked. Someone had obviously concluded that something had to be done about her foot. Someone had operated and removed the entire top, a strip of skin going from one ankle to the other, a full quarter inch deep.

There are very few places on the human body with more nerves than the feet. And I understood immediately what Claudia was trying to communicate.

Her foot hurt like hell. It hurt so bad that she felt it under incredible sedation. It was such a terrible pain that she was attempting to tell someone, anyone, please do something!

Someone held her foot while I applied the EMLA. Claudia spasmed in pain (EMLA burns for a few seconds when you apply it), then immediately calmed down. Her body relaxed for the first time since I saw in in CICU, and she went to sleep. She immediately went to sleep.

I asked Anne to ensure that EMLA was added to the dressing change order. Anne said she would inform the wound nurse. I actually was not aware that Claudia had a wound nurse until that minute, so I decided it was time to have a conversation with the woman.

In the meantime, I had to visit Claudia twice a day to apply the EMLA myself. I was a little surprised that the nurses allowed me to do this, until I realized that they understood that it really worked – Claudia was much calmer.

The doctors continued to insist that Claudia would need to have this tube inserted into her throat. At first I thought this might be a reasonable solution, until I questioned another nurse to find out what it really meant.

If they performed a tracheotomy, then Claudia might very well spend the next six months (if not the rest of her life) in a hospital or convalescent home. You see, the nurse explained, this is not something that can be supported in a home environment.

The doctors had tried to “wean” Claudia off the breathing tube twice, and each attempt was a failure. Claudia could not breath on her own, or so the doctors believed. I was told they would only try three times, then do the tracheotomy.

I talked with both doctors. I made it very clear that no more operations would be performed on my wife without my express, written permission. Period. Her foot was operated on without permission, and perhaps that was necessary, but those times were at an end. They would do nothing, I explained, without discussing it thoroughly with me first.

Oh my, the doctors did not like this at all. The administrator in charge of Claudia’s case (another woman named Anne) was very opposed to my “new attitude”. She didn’t understand why I was acting this way.

Sigh. How do you explain to someone who is apparently incapable of caring about another human being care what caring means? These doctors didn’t care, they just wanted to get Claudia to someone else. That was plainly obvious.

Now, I was not just operating on my own here. I was making regular calls to my our real doctor for advice and information (since Queen’s doctors were not communicating very well). My doctor said that putting Claudia through a tracheotomy after three tries seemed a bit hasty. He felt that the forth or fifth try would be very acceptable, especially considering her personality (she would not like a long hospital stay) and how sick she had been. My doctor advised me to ensure they those additional attempts before doing something more dramatic.

In addition, I had numerous conversations with her respiratory therapists. In their opinion, Claudia was doing extremely well. The disease was more or less handled and the fluid was quickly emptying from her lungs. They were unanimously of the opinion that a tracheotomy was premature at this point. Their opinion matched our doctor’s – a tracheotomy would be justified on the forth or fifth attempt.

I made sure I was there on the third attempt to remove the breathing tube. Oh, I remember the tension. I was fully prepared for a showdown with the doctors. I was completely willing to do whatever was necessary to prevent a tracheotomy. My wife would not want to be locked in a convalescent home for months. In fact, I was not sure that she would survive it at all.

The tube came out and my wife breathed on her own. She had been in the hospital for two weeks.

Part Four

I thought Claudia would leave CICU shortly after she started breathing on her own, but the doctors had other ideas. You see, now the problem was with her heart, or, rather, with her blood pressure.

It was way too high. The doctors were pumping bottle after bottle of nitroglycerine into her body (through the IV) to keep her blood pressure down. And even with that, it was way too high.

The doctors were completely freaking out. They talked gloom and doom – it was a major problem according to them. Of course, this made me extremely upset, as it appeared that her life was still in immediate and extreme danger.

I had gotten into the habit of walking over to the hospital each day to check up on Claudia and to find out if the doctors were doing anything stupid. One morning I walked in and found a respiratory therapist about to work on Claudia. I asked if I could watch, and the lady said it was fine with her.

I watched as she performed various tests and changed tubing. It was very interesting and I pestered the poor therapist with questions and comments. Fortunately, she was very willing to talk and I learned a lot about what was going on with my wife. In fact, during the entire stay in the hospital, I learned far more from the therapists and was far more impressed with them as professionals than I was by any doctor. It was interesting that this hospital had such babbling idiots for doctors, yet somehow they had managed to find competent people to fill the ranks (at least at CICU – I later found out it was very different elsewhere in this hell hole).

Anyway, as the lady worked I mentioned Claudia’s high blood pressure and fast pulse rate. The therapist listened politely as I spoke, then sighed and said the doctors never explain anything. What was going on, she explained, was very simple. Claudia’s lungs were damaged and they were not bringing in enough oxygen. The body had some automatic systems and these systems understood this fact. In order to keep the brain alive, the body was simply trying to pump more oxygen faster to compensate for the lung problem. In other words, what was going on was completely understandable. Dangerous perhaps, and definitely the blood pressure had to be controlled. But the phenomenon was understood and relatively routine – at least for the therapist.

It took a few more days, but her blood pressure finally returned to more-or-less normal range. Claudia began looking better and appeared more alive than before. At some point, they worked her off the medications and she woke up – well, as much as she could wake up given the amount of drugs they had fed her.

Within a few more days it was time to move Claudia out of CICU. This meant she was doing much better, and was expected to survive. I thought, at first, that moving to another floor would be a step up, but I was very mistaken.

Claudia was moved to the forth floor and the situation was dismal. She was put into a room with another person who was obviously dying. In fact, it was pretty plan that the old lady was being allowed to die, and she did expire within a day. Claudia was forced to listen to this person as she went through the motions of dying, and it was extremely traumatic for her.

Her roommate expired and Claudia was left alone. I visited often, and each time the situation was slightly worse.

Claudia was throwing temper-tantrums. She didn’t want the breathing machine hooked to her, so she would throw it to the floor. She didn’t want breathing treatments, she didn’t want food, she didn’t want anything – except to leave this hell-hole of a hospital.

You have to remember that the doctors had injected Claudia with a tremendous amount of drugs to keep her sedated. The effects of those drugs lasted for months and months, and during the few remaining days in the hospital, Claudia felt like she was a small child. She really felt like she was five years old, and she acted like a five year old. It was simply the effects of the sedatives, as proven by the fact that as the drugs wore off, she became much more rational and “there”.

The nurses were very unhappy with Claudia, and they used restraints to keep her from moving around. The doctors asked them to remove the restraints and told Claudia she needed to practice walking. When she did so and fell, the nurses freaked out and kept her restrained and under close supervision.

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