Thursday, May 30, 2013

x1960-1990: The asthma institution

By the 1960s the two asthma institutions in Denver that were opened to take care of tuberculosis patients were now mainly taking care of asthma patients, according to NationalJewishHealth.org.  And "by this time TB patients comprised only half of the patient population and asthma patients a third." (5)

It was in this decade that National Jewish Hospital opened a facility specifically for the increasing population of asthmatics with high risk asthma that was non responding to conventional therapy.  It was in 1969 that a fee for service based on a patients ability to pay was begun.

By 1976 Asthma was recognized as the most prominent chronic disease among children, affecting 1.5 million children in the United States, and this included myself.  It produced a lot of suffering for those afflicted, and it also accounted for about one-forth of all school days lost. (4, page 164)

It is a debilitating disease not only for the child who is suffering, but for parents who don't understand the disease, and fear their child might die.  Yet perhaps even worse than that for the parent is the helpless feeling that there's nothing you can do, and what you do do doesn't help. Probably because most of what they did back to was based on fallacies of the past, such as putting asthmatics in a steam filled bathroom hoping that would relieve an attack.

Yet for the child the suffering is even worse yet, and here I can allude to my own experience.  Many nights I would stay up late, many times all night long, my wrists firmly pressed on the window sill, by face up against the cold screen with the intend on sucking in cool air and oxygen.  Many nights I suffered in this way from an asthma attack.

When I was little I sat up on the bed, all frogged up, gasping for air.  I did this probably because I didn't know there was anything not normal about it.  When I was older I'd push open the window in secrecy in the middle of the night because I didn't want to bother my busy parents.  Another reason I suffered in secrecy like this was because I didn't want my parents to worry about me.

Another reason may have been because of a poor self esteem exacerbated by parents who disciplined me because I underachieved, even when I was probably underachieving because of my asthma.  Another reason for my low self esteem was because kids picked on me at school because I acted different from the "normal" kids.  I had a runny nose and they didn't.  I wasn't able to play baseball on teh dusty baseball diamond.  So they picked on me.  The same way my brothers sometimes picked on me when I didn't play baseball with them.  I was basically fodder for the other kids. 

Now as I look back on all this I think I'm sometimes just saying this kind of stuff to justify why I was picked on as a kid, but based on my own medical records my counselors, my psychologist, and my medical physicians all believed this.  Asthma had taken a physical and psychological toll on me.  And to make matters worse my teachers and parents had no clue this was going on, and the end result was a shot self esteem and shot level of self confidence.

And then I had mood changes. And many children have mood changes, so my parents and physicians probably figured I was just one of those intractable children. I became stubborn sometimes at home, and I was emotionally distraught.  I remember being extremely depressed to the point my parents once grounded me from watching the news.  I remember pacing the living room for hours worrying about the death of a relative, or that I was going to get old and die.  Of course my parents and doctors had no clue I was depressed, or at least at the time they didn't associate it with the fact my asthma was poorly controlled. More recently my mom acknowledged to me she was aware of it, but I don't remember her ever doing anything to help me.

So, again, I can understand the theory that asthma was believed to be psychological.  Plus when a child is admitted to one of these hospitals the environment is controlled.  By the 1970s and 1980s air conditioning was added to both the children's ward and the gymnasiums where children exercised.  There was a focus on a good diet, and we were exercising all the time. Stuffed animals and items that collected dust were not allowed.  Clothing was washed regularly so it was allergen free, and furniture was made of leather or other solid material that was easy to wash and didn't harbor allergens. 

By the 1970s there were two prominent asthma hospitals in Denver, one was National Asthma Center and the other was National Jewish Hospital at Denver.  By 1978 National Asthma Center admitted financial trouble, these two great hospitals merged to create National Jewish Hospital/ National Asthma Center.  The main campus was on Colfax Avenue, or the National Jewish Hospital campus.  The merger resulted in the "largest treatment center for pediatric and adult asthma," according to NationalJewishHealth.org.(5)

Once admitted the children would under go an examination by a physician, and then spend the next several days undergoing a variety of tests.  I remember doing many pulmonary function tests, x-rays, electrocardiograms, sweat test (to rule out cystic fibrosis), and so many other tests I can't even recall all of them.  I just remember being exhausted by the end of it.

I met with a counselor on day one, and I think the main reason for my counselor was to help me deal with the day to day life at my new home, and also to help me learn to cope with life once I return home.  I saw my counselor once or twice a week, and once every two weeks I saw a psychologist.  I only saw a psychiatrist once that I remember, and he prescribed Xanax to help me relax. He actually prescribed an antidepressent before that, but I had an allergic reaction that gave me hives all over my body, so he must have decicded just to stick with xanax.  It seemed to work pretty well (I'll tell you the story about that later). 

So I was admitted to the hospital in 1985, this was long after the psychosomatic theory of asthma had been proven to not be true.  But I'm certain the doctors trained to work there, and the psychologist, were still privy to these old theories.  I'm certain, especially after reading my medical records, that they believed much of my asthma was in my head.  They noted the anxiety.  They noted trouble when my mom visited, and how my asthma was exacerbated during these times.
Travis quotes one physician as saying that "once asthma has been established, acute attacks may be triggered by emotions.  There is a psychological basis for some emotionally precipitated attacks, particularly when the emotional upset is accompanied by shouting, crying and rapid breathing... it becomes impossible after a time to separate problems which are precipitating asthmatic attacks from those that are secondary to the asthma.  The secondary gain can be a significant problem."  (4, page 169)

This appears to be my proof that asthma was no longer believed to be psychological by the time I was admitted in 1985, although psychological factors can still trigger asthma. Most of the asthmatics admitted by this time were on systemic corticosteroids, and the fear of side effects was paramount.  Although, through the efforts of physicians at the hospital, I believe most patients went home on preventative asthma medicines, with controlled asthma, and off systemic steroids.  At least that was the case with me and the children I was admitted with.

It also must be noted that, even back in the 1940s I'm sure, occupational therapy was a major therapy given to asthmatic children admitted to the hospital.  Children with intractible asthma, and I can attest to this, do not develop many of the skills other kids do to cope with life.  This is the same for kids with other intractible diseases too.  They don't develop skills that most people take for granted, such as balancing a check book or searching for an apartment.  These types of basic skills that are worked on at the hospital, if the need is there.

And, again, there was a major focus on education and exercise.  These two were almost ingrained together at the asthma hospital.  You need to understand your disease and every part of it, and you needed to exercise.  Many times exercise was education, and education was exercise.  You need to know your medicine, and you need to be compliant with your medicine. And you need to now why you are exercising, and how it will make you better.

You need to know what aerobic exercise is, and if your legs weren't being kicked high enough in the air, you will be told this.  And unless you have a good excuse, like  your asthma was really acting up, you did as you were told.  And for the most part you did it because you wanted to, because you were just happy you were able to exercise at all, because most of use weren't able to prior to being admitted.

You will leave National Jewish educated, and if your physicians don't think you have a good grasp on your education, you will probably not be cleared for discharge.You need to take complete responsibility for your medicine, so that even if your parents back home aren't involved in your care, you know exactly what to do at all times.  You need to know why you are taking your medicines and why it's so important to take them every day. And you need to exercise. 

You need to plan ahead on the first day of the week, and plan out what pills you will be taking and on what day and on what times during what day.  You need to plan before every trip out of your house to make sure you take your medicine before hand, and that you have all the medicine you will need on the trip, such as your rescue inhaler.  You cannot just take for granted someone else, even your parents, will remember your medicine when you leave the house.  It is solely your responsiblity. 

You will have to also know when to take your rescue medicine, and when to wait.  You will also have to know your asthma triggers and how to avoid them.  You will also have to know what your symptoms of asthma are and what to do about them.  You have to know it all, and you have to be completely responsible for your own health.  That is essential, and it is engrained in your head over and over and over and over and over again until you are discharged.

And also you had to exercise every day.  The school I attended, the Kunsburg School, had a pool, and we swam two days a week during school.  And when we weren't swimming we had gym class.  Every evening after dinner we went to the gym in the school to do some form of aerobic activity.  We stretched, and then we moved for 20 minutes.  That was mandatory.  We did kickball.  We did basketball.  We did baseball.  We did dodge ball.  And if you weren't moving, you were pestered by the PE instructor until you did just that.

When you were first admitted you had a complete physical, followed by a series of tests.  Your asthma was stabilited one way or another, and then you were cleared within  You were then required to exercise, and you were required to attend school.

And then, during the evenings, and on the weekends, you had fun just like normal kids do. You go on field trips. You go to the mall shopping and you go to movie theaters to watch the best movies.  And you go to amusement parks, camping, and all sorts of fun things.  Sometimes you go to video stores and rend movies to watch at home.  You have parties with the other kids.  You have dances.  You have icecream socials.  You have dance and singing competitions.  You played games with the nurses and other kids. 

In the winter there was a basketball team, and either you joined the team or you traveled with the team and you watched the team.  And in the spring there was a baseball team, and either you played or you watched.  And it was much more enjoyable to play than watch.  And you traveled to other institutions in the area, including those housing other sick kids, or otherwise sheltered kids.  The goal is to make the hospital as much like home as possible.  And, for the most part, they succeeded at this.  It was a really fun experience.  And all along you learned. Everything was a learning experience.

At one point during my stay I wrote in my journal:  "The only thing that makes this place seem like a hospital is the nurses wear stethoscopes over their shoulders."  For the most part that was true.  Although you were still thousands of miles away from your home, away from your parens, and you were chronically sick.  So most of the kids got homesick, and that was another issues the staff there had to deal with.  And, I'd assume, another reason for all the activities. 

In 1985, while I was a patient at NJH/NAC, the name was changed to National Jewish Center for Immunology & Respiratory Medicine.  In 1995 the inpatient floors at the hospital were closed and a new pediatric outpatient program was added, and in 1997 the name was chanced again to

References:
  1. Minton, Gregg, "Breathing Space,"
  2. Wamboldt, Fredrick S. "Asthma Theory and Practice: It's Not Too Simple," April 2, 2008,
  3. Jackson, Mark, "Asthma: A Biography,"
  4. Travis, George, "Chronic Illness in Children," 1976, California, Ford University Press
  5. "Clinical History," NationalJewishHealth.org, http://www.nationaljewish.org/about/whynjh/history/clinical/clinical-history3/, accessed 11/7/12

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