My good-bye party

You can't go off to spend 6-8 weeks at an asthma hospital without a send-off party. And that's exactly what my family threw for me on the evening of Saturday, January 6, 1985.

Nearly every member of my family, including all my friends and the friends of my parents, showed up at our house for my good-bye party. My cousin Scott and his band played music in our living room. My Uncle Torrin mocked Willie Nelson in a version of "On the Road Again" by plugging his nose while singing. I knew there was going to be a good-bye party, but I had no idea it was going to be this BIG!

At the time, I really didn't understand why they were throwing me such a large party. I was only going to be going away for 6-8 weeks. Surely this seemed like a long time to me, but it wasn't going to be forever.

Yet, in retrospect, I know now that my parents, doctors, nurses, and respiratory therapists taking care of me during all these years were worried that asthma was going to kill me. I did not think of asthma that way. To me it was like an annoying cold that wouldn't go away. Like any person with a chronic disease, one you are born with, I just learned to deal with it.

The party really didn't stop when the party ended. Almost as soon as i was admitted to the hospital the letters started to coming, and they came from nearly every person at the good-bye party. I think, over the first six weeks, I received over a hundred letters. Probably half of them were from my grandma Bottrell, my Aunt Dolly, and my aunt's Virgie, Mary and Tossi. Oh, I should also add into this letters from my parents and brothers.

It was great back then because it was nice to receive a letter or package every day. It was also nice now as I'm trying to tell my story, because these letters helps me remember what I was doing back then, and what was happening outside the hospital too. It was nice. I don't know if I ever did enough to thank all who wrote me letters.

Anyway, the day after the party I boarded a United Airlines flight to Denver with mom. I don't know if I can ever truly tell this story. I have tried to sit down and write it down, starting with when I was there. I will make a gallant effort here, albeit 30 years after these events occurred.

Still, I have learned that, as you start thinking of things, the memories do seem to roll back into your mind. Some events, or most of them, were almost blacked out. This includes the horrible moments (and there were a few), but it also included some very good memories.

1984: Struck down the asthma beast

The whole year of 1984 was a downward spiral for me. I was going through Alupent inhalers so fast that I ended up going to Florida with barely any medicine. I was actually fine while we were there. I remember mini golfing with dad and my brothers. I remember spending time with grandma and grandpa. We didn't go to Disney, but we had a good time in Florida anyway.

Before we left dad bought some coconuts. He put them under the back seat of the van. Dad owned a car lot, so the van was one of those souped up vans with a refrigerator and even a TV. We could sometimes pick up channels, but mostly it was mostly static. The van was a Dodge comfort suite. It was awesome.

On the way back dad put the back seats down so we basically played on a bed. Keep in mind this was a day and time when kids did not die in accidents. We did not need to wear seat belts. My kids always seem amazed when I tell them this kind of stuff, but it was true. I mean, the thought of crashing -- well, it wasn't a thought. It was just not even considered. You got in a vehicle, you got to where you were going, and that was that.

It was probably that kind of thinking that my mom put my in charge of my own asthma medicine. I actually hated being in charge of it. I wanted my mom to monitor me more closely. I wanted this, because I would use my inhaler too much. I would also be afraid to tell mom it was empty, or neat empty Partly because I was a boy and it was work to pay attention to this kind of detail But also because i was a reserved boy and I didn't like to bother people. I was a please. I didn't want to get into trouble. All sorts of reasons.

I just thought it would have been so much easier if mom was in charge of my inhaler. Then she would know when I was using it too much. She would take me to the doctor. I would get the treatment I needed, rather than over relying on my inhaler. Okay, that's what I think. And I was afraid my doctors would know I was abusing it. So, when I went to the ER I would always downplay my inhaler use -- if it was even brought up.

On January 4, 1984, I celebrated my 14th birthday playing football under the warm Florida sun. The next day, on the way back to Michigan, the beast that is asthma grabbed my lungs, gripping them hard. Dad blamed it on the nuts. He might have been right. But there was something else in play entirely. You see, I knew my inhaler was almost empty. And, kind of like not having the guts to tell mom I had to pee when I really had to go real bad, I didn't have the guts to tell mom I couldn't take in a half a breath. And, ditto for telling them my inhaler was near empty, and then empty. I was self conscious about this. In retrospect, I should have sought help, and it was good I did.

I wrote about what happened next in a letter to my grandma Bottrell dated March 1984:

On the way back from Florida I felt bad. I was wheezing and I simply couldn't breathe anymore. Dad stopped in Jacksonville, Indiana, for the night and decided I must have been allergic to the coconuts he stashed under the seats. I was also low on Alupent.

I got so bad that at 8:00 p.m. dad took me to the hospital. I got an IV for an hour, Susphrin shot, oxygen, and other medications I cannot name. I was there for four hours. I was well the next day, but after we got home and I was getting ready for bed. I gradually got worse. Again we went to the hospital at 8 p.m.

Then I suffered for a few days. I didn't want to go back to the hospital. I was afraid if I did they would keep me. Finally I got so bad I had to tell mom, and she took me to see doctor Olivier. He gave me some meds, and sent me back home.

"I went to the hospital Sunday, Feb. 5, and I was treated by a nurse (I bet I was treated by an RT too). I got worse in the hospital. Dr. Oliver came in and said he figured I had pure asthma because I had no signs of a cold or anything like that. He put me on some new meds and almost kept me. I ended up going home that night.

"Well, that lasted until Feb. 8. I could breathe fine I thought -- just coughing. Mom called
Dr. Oliver. He told mom to take me to the hospital for a breathing treatments twice daily. Mom decided it would be easier if I just stayed over night.

"On the way to the hospital we ate lunch at a local restaurant (I think it was House of Flavors), and I could hardly breathe when I was there. It got worse that day, and I ended up staying seven nights in the hospital. I got better every day I was there.

"The first night, though, I had a bad night. I was up over 20 times with asthma."
I was re-admitted later that month, this time my stay was five days.

Somehow I managed to stay out of trouble as the pollen season arrived. Then, on August
18, my good fortune ran out: the beast returned. It stood over me like an invisible elephant crushing my chest. I cried to dad, and he took me back to the ER for another Susphrin.

Two days later the beast was standing over me again, but this time my doctor was afraid to let me go home. He kept me locked up in a hospital room where the beast couldn't find me.

On October 2 I was looking forward to watching the Tigers play the Kansas City Royals. Before the game I decided to rummage through a trunk in the basement for a Halloween mask. There, amid the dust mites, was the beast.

Dad rushed me to the ER. "Doc," I grunted, "I either... need to be... sent home… or admitted... by seven, because.. I'm not missing the game."

I watched the game from my hospital room with dad. While my chest was tight, the Tigers walloped KC and just the thought of that kept my mind off the beast, and my spirits high.

The next day I felt fine. I couldn't wait for doctor Oliver to come in and tell me I could go home. My roommate was a cool kid named Mike. He was also 14. I figured he was worse off than me because he couldn't get out of bed. His leg was broken and it was up in a sling.

We made a deal that I would control the TV clicker until noon, and then it was his turn. A grumpy old lady nurse came in to check on us, and as soon as she was gone I whipped the remote to him. We laughed.

We continued laughing as he flipped through the channels, finally landing on what was a cool movie called "Porkies." Not a kid movie, but there's "naked girls in it," Mike said.

Grumpy nurse poked her head in, and Mickey quickly turned the channel. Two boys snickered.

"What's going on in here?" she grunted.

"Nothing," we said in unison, snickering.

Grumpy nurse left to irritate some other patient, and Porkies made its way back to the screen. In the meantime, I had no idea mom was on the phone with Dr. Oliver discussing what should be done with me. While I was coping, they were worried.

On Oct.26 and Nov. 8 dad drove me back to the ER for quick visits. But the next day I was admitted yet again for two nights. "Oh, well," I wrote in my diary, "I can handle it. At least I have a good excuse not to do homework."

On November 25 dad was driving us back from a Thanksgiving vacation. We were visiting Uncle Torrin. On the way home, once again (and probably because I overused my inhaler and it was empty) I lost my breath in the van. In my diary I wrote:

This was a frustrating visit for me. The stupid doctor wouldn't give me the Susphrin shot until dad finally convinced him that's the only thing that ever worked for me. After several hours of bonding with dad, I was released. We arrived home late.

Then, a few days later after school, I sat at the kitchen bar with mom and my brother David. Mom said, "What do you think about going to a hospital just for asthmatic kids like you?"

"Um, I don't know," I said.

David said, "Wow, that would be really cool. It would be like going to camp."

"Exactly," mom said.

"How long would I have to be there?" I looked at mom, hoping she'd say a week or less.

"Well," she said, "the doctors say it would ONLY be 6-8 weeks."

"That long? Why would it be that long?"

"Dad and I heard a lot of good things about this place," mom said, "This is the number one hospital for asthma in the world, and you should be honored that they want you as a patient."

"Okay, let me think about it." I hopped off my chair and started for the living room.
"Rick, you have to do this," David said. "It's a once in a lifetime opportunity."

I paced around a few minutes, pondering hard. I had this eerie feeling whatever decision I made would be final. Then a thought occurred to me: What if I say no and the opportunity is lost forever?

"Mom," I said, walking into the kitchen. "I've decided I'll do it."

Gulp.

Mom wasted no time reaching for the phone.

I wrote in my diary once that I was having second thoughts -- just once. But that was before I was rushed to the ER three times the first week of January, 1985. During my third visit, I remember the ER doctor saying:
"Well, I would normally admit him.  But since he's going to Denver in a few days, I guess I'll let you take him home."

This would be my final visit to the West Shore Hospital emergency room for the next six years.

1983: The mist tent and the nice respiratory therapist

It was 1983. I went to the emergency room for bad asthma. I was given the Sus-Phrine shot and rolled up to a room behind the nurses station. My asthma episode was really bad. So, doctor Oliver wanted me right by the nursing station. So, they put me in a room literally right behind the station.

There was a window where I could watch the nurses. I hated it. There was no privacy. I was actually stressed that I wouldn't be able to change without a bunch of female nurses watching me. But, after the first night, after I was feeling better, the doctor said I could have the curtain pulled. This was nice.

I was kind of a claustrophobic kid. When I was in Kintergarden and first grade, I remember we had to wear hats and snow suits. I hated this. I felt like I couldn't breathe when I was all bundled up like that. The teachers hated it that I was not compliant. But, ultimately, what choice did they have but to let me go out without them on.

Okay, the same thing with nasal cannulas. Here I was struggling to breathe for hours before I went to the emergency room, and that last thing I wanted was something over my face. I would get a breathing treatment, I would get the shot, and at some point someone would say, "We better put oxygen on him."

I would pull it off. They would put it on. I would take it off. They would put it on. I would take it back off. I remember this happening often. And, I don't ever remember anyone ever giving me a hard time about it. It probably bothered them, as I imagine I appeared cyanotic at times, but it never bothered me. All I wanted was the shot. I knew the shot would make me feel better. I didn't need something on my face.

So here I am, sitting in this room behind the nurses station. Mom is reading to me. I'm feeling soothed. And the doctor comes in. He says something about a mist tent. I wasn't thrilled about it. And I wasn't upset when it was several hours before a respiratory therapist came in and said, "It will be like being in a tent."

I wasn't thrilled, but I didn't feel like fighting. I knew that reason was because I refused to wear a cannula. And, I suppose, I must have been cyanotic. However, based on the fact the therapist appeared to be dragging his feet with setting it up, I highly doubt I was cyanotic. It was probably just some stupid idea my doctor got. I know how doctors are now that I have been working with them 20 years. Sometimes they just feel as if they have to do something, even if that something is something that's not needed.

Okay, so I ended up in this tent. The TV was on. I could hardly see the TV through the wrinkled plastic that was over my bed. Okay. It was nice and cool in it, however. Mom was sitting next to my bed. She may have read to me. But then my dinner came. I wasn't even in the tent for an hour, and I was allowed out to eat. I never went back in.

Later that night a really nice therapist came into my room. There usually wasn't a therapist on night shift. But tonight there was. She came in around 8 p.m. to give me a breathing treatment. She talked to me for hours. She was so nice. She told me I didn't have to go back into that tent. I was so happy. Before she left, I said, "Make sure you wake me up tonight for my treatments." She said, "I will."

She never did.

Fast forward 25 years. My coworker is Joella. I came into work one day and she said, "A memory occurred to me this morning. I was working in Manistee part time. I was called in to work because they had a 10-year-old asthmatic in a mist tent. A thought occurred to me: It was YOU."

She was right. Her name was Joella. She is now retired and living the good life.

This experience inspired a post at healthcentral.net, along with the following comic.

1981: Nursing caps and smoking nurses

Nurses in the 1970s (2)
No, that's not me.
But it's the only picture I could find
depicting nurses in their old uniforms.

The daughter of a patient of mine said she was a nurse in the 1970s. She said she remembers one nurse who would have a baby on either side of her. She said she would sit and chart like that for hours, and chain smoke. She said this was acceptable back then; the dangers of it were rarely if ever, questioned.

This reminded me of when I was admitted to the hospital sometime in 1981. I remember the nurses wore the prototypical white nursing uniform and cap. I remember asking a nurse how she kept the cap on her head, and she said she used a bobby pin. She even went as far as to show me how it was done.

That night I smelled smoke. I also had trouble breathing. In the morning, my breathing was still tight when my doctor came around. I wasn't trying to get the nurses in trouble as I innocently mentioned smelling smoke during the night. My doctor stormed out of my room. I could hear him talking at the nurses' station.

A year later I was admitted to the same room and for the same reason. This time the nurses were not wearing their uniforms. I asked about this, and the reason I got was, "They are now optional, and we decided not to wear them anymore." It was sad, in a way, not to see the uniform, although I understood why they wouldn't want to wear them.

Actually, they were in uniform. They were all wearing scrubs. And I suppose it was better for them, as they had more freedom as to what they could wear, and what colors. It was probably nice not to wear that hat. And, from what I read, they were more difficult to keep on your head than this nurse told me.

It was also during this visit that I remember, on the day I was admitted, hearing my doctor at the nurses' station. He said: 

"I do not want any smoking while this asthmatic boy is admitted. That is an order."

Obviously, I'm paraphrasing. But that was the gist of it.

It was bath time. A nurse came in to give me a sponge bath. I insisted on not doing this. But she insisted on doing it. We ended up compromising. There was a tub in a room across the hall. I insisted the door be shut. She insisted it is open. We compromised, and the door was shut but not locked. I cleaned up quick because I knew nurses by then.

So I got clean. I did not have an asthma attack during this visit. And I ultimately went home after a few days. Anyway, it's neat to have this memory of being a patient at this transitional time in the history of nursing.

References:

1. Getty Images: Neat old videos of nurses wearing their uniforms
2. workessentials.com: History of Nursing Uniforms Through Time   

1983: Mom's voice and the nice respiratory therapist

The highlight of any of my stays in the hospital was when my mom came to visit. Usually she would come early in the morning and stay until after the notice rang over head, "Visiting hours are over." During the day mom would read to me. One time, as there was nothing else to read, she read a story from reader's digest. The story was too complex for me to understand (or maybe I was too hyped up from all the medicines I was on to treat my asthma) and had trouble paying attention to the story. However, I loved to hear my mom's voice. Hearing mom's voice was therapeutic. It was almost as therapeutic as Sus-Phrine. There is just something soothing about hearing your mom's voice as she is reading a story. It is so relaxing. I loved it when she did it, and wish she would have more often. However, in our busy household, about the only times I remember her reading to me was in the doctor's waiting room or when I was in a hospital be. That's fine. I will take those memories wherever I can get them.

So mom left one day when i was eleven. A respiratory therapist name Star came into my room. She was a young therapist. She was really nice. I liked her probably because she would actually pay attention to me. She would sit on the edge of the bed and watch TV with me. One time I was flipping through the stations and came to a channel with some naked Aborigines. I started to turn the channel, but Star told me to keep it on this station. I wasn't interested in learning about them, but she was. I was too busy laughing. She kind of scolded me for laughing at them. I didn't do it intentionally, i was just giddy. It was probably from all the medicines I was strung on.

The next day mom brought my brothers to visit me. Mom had to take them home. When mom left I went to look out the window. This was when Star entered my room. She gave me my treatment, and then said "Let's play some cards." Of course, there was a deck of cards that mom brought me on my table. I don't remember what game we played, but she stayed in my room for quite some time. It was nice to have the company. I was so happy to have a therapist who paid attention to me like this. But, there was a page overhead, and she had to rush out of the room. Still, it was nice that she helped me pass the time.

Sixteen year's later, when I was hired at Memorial Medical Center in Ludington as a respiratory therapy, Star became my co-worker. Star would later tell me I was a very excitable kid.

1981: My first bad hospital experience

Most of my hospital experiences were good. This was probably because I went to the hospital not being able to breathe, and I left feeling great. So, it would only make sense I had a positive image of them. However, one experience was horrible. I remember being nauseated. I remember having hallucinations.

I remember struggling so hard to breathe. I remember waiting in the emergency room waiting area at the hospital. I remember there was a window with a clerk. I remember mom talking to the clerk. I remember a door behind the clerk that probably went to the emergency room. I remember seeing a few doctors, nurses, or other staff opening the door, saying something to the clerk, and then closing the door again.

But then you'd sit down. Usually you got to go to the emergency room quite fast when you couldn't breathe. But this time the wait was forever. I couldn't breathe. I was so nauseated. I remember being so uncomfortable that I kept moving from one chair or couch to the next. I remember rubbing my tummy. Man, I was sick.

But the clerk didn't care. She ignored me. She made no effort to get the doctor. I was so angry by this. I just wanted to see a doctor. I wanted a shot. I wanted to lie in a bed. I wanted something to make the nausea go away. And mom felt bad for me. I know she talked to the clerk more than once. I don't know what the clerk said to mom. I would imagine there was a code or something going on, and that was more important than an asthmatic kid. But none of that mattered to the ten-year-old asthmatic.

The next thing I remember is I'm riding in a hospital bed. I watch as the ceiling moves by. I'm feeling pretty good. I'm feeling sleepy. I finally get to a room. I remember shifting from the ER bed to my own bed. I remember rolling over and mom covering me up. Mom stayed with me. I felt good that she was next to me. I slept good.

Someone woke me up. I had to get onto another bed. I was very sleepy. I have a vague memory of changing rooms. I got off the transport bed onto a new bed. I got into the bed. Mom covered me up. She sat in a chair next to the bed. I felt comfort knowing she was there. I rolled over and fell asleep.

Someone woke me up. The same thing happened again. I just wanted to sleep. In retrospect, I must have been given something for nausea. It worked so good. It made me very groggy. Or, maybe they gave me a sedative like xanax. Whatever it was, it made me not have a care in the world.

The next day I woke up with the curtain pulled to my right. The nurses came in many times to take care of the person in the other bed. A nurse in a white nursing cap came in to care for me. At some point that day dad came to visit. Dad was mad that I was in a room with an old man. At some point the curtain was pulled. I have a memory of a man who was near death with his mouth agape. As far as I knew he was already dead.

Dad came to the rescue. He made the nurses move me. They moved me to a room across the hall. Dad was also irritated that they kept having to move me. Now I was in a room with a kid my age. He had had an appendectomy. He was not much company as he was in so much pain, but at least he was a kid.

And, as a bonus, dad said he had a surprise for me. He said he had paid the $5 so I could have a TV. It was on the wall in front of the bed. I got to watch whatever I wanted. It was nice to have my own TV. That made my first bad hospital experience an okay one.

1979: Tedral Side Effects?

I got to thinking about the horrible side effects of Tedral described by other people my age who used it as a kid to control their allergies/ asthma. Many of them described having hallucinations. At first, I figured these descriptions of side effects were probably just exaggerations. However, there were a few events that occurred in my childhood that make me wonder if I had these side effects too, just blamed them on something else.

Actually, these descriptions were by people older than me. I was just a little kid when I took the medicine, and thankfully it was no longer used by the time I was ten. However, I was unfortunate (or fortunate, depending on how you look at it) enough to get to experience the tail end of its run as a top line allergy/ asthma treatment.

Here is one of the comments (unedited from medschat.com)

I took tedral in the 60's and another drug which was a smaller pill with a brown coating. I suffered mostly unpleasant hallucinations when I was small and they were not always when I was sick. I no longer have the life threating athsma as I did when I was a child. Over time my inquiries about the hallucinations were never answered. So it is interesting to read about others experiences here. I always thought it was a combination of the drugs and the reduced oxygen and air in my body. I think tedral probably saved my life also. The halluncinations very occasionally revisit me as I am falling asleep and if i am becoming ill.

Here's another:

I also took tedral on the late 50's for asthma and experienced similar side effects including hallucinations, but without the medication I'm not sure I would've lived. Our family doctor still made house calls and I can remember her coming to our house at all hours of the night to save my life. She was something else. I think the Tedral was the reinforcement if the adrenalin wasn't able to restore normal breathing.

And another:

Wow!!!!! I have always wondered why I would see the spiders on the ceiling's and what happened to them. I too remember taking the thick yellow asthma medicine (how I googled and ended up here) I used to surround myself with Teddy Bears to protect me. I never knew it was the medicine. I used it as a child 4 years old 1960''s to 1970's when primitine mist came on the market. I now know where my restlessness, inability to sleep and over abundance of energy /hallucinations came from and that I wasn't a bad child just effects of the medicine that I hated to take. Preferred the eperine shot in the arm even as a child.

And...

I thought i was mentally unbalanced. Seeing enlargements of real life in front of me. Increased hearing sensitivity. Shrinking rooms in front of me own eyes. For years thinking it was me. An unbalanced. Self. It all stopped as i got older until one day I was having an asthmatic condition and took the medicine the doctor had me take 3 times a day! Tedral!. The truck in front of my eyes, as i worked on the engine, seemed to shrink like what happened 5 ears previously. when I was taken tedral regularly. I wasn't crazy after all--- It was the medicine! Anyone else experience shrinking heads, feelings of speed' before the term existed? Why was it taken off the market? Everyone have these problems? It would be nice to hear from others about their Tedral experience. This occurred 1952 ...

That's how often I took it, sometimes.

 I don't want to dwell on this, but I do remember hallucinating at nighttime. I remember dreading going to bed sometimes. This was because, just after I was relaxed on the bed, shortly after I closed my eyes, I would still be wide awake but not be able to move. I would become completely paralyzed. These episodes would last several long moments. I would become very panicky, as you might imagine.

I swear I was not dreaming when these occurred. As I noted above, I would dread even attempting to sleep because I was afraid I would have one of these paralytic episodes. I was afraid that the next one might be the one that never went away.

I remember waking up and not wanting to even try going back asleep. I would be wired. I would read a book. I would write. I would even look at my homework and consider doing even that. That's how desperate I was not to go back to sleep.

So, I would finally get tired and would eventually fall asleep. Then I'd have these horrible dreams that I still remember to this day. I remember having this recurring dream about how this monkey would come through my window (even though it was closed) and would try to convince me to go with it. He would be wily and goofy, as monkeys can be. He would tell me how good it was. I would be scared to death of this monkey. I would try to get away. I would look at my door. But, as so often occurred in such dreams, the monkey had the power to paralyze me. I was unable to move for the door.

I would wake up horrified. My heart would be racing. I would go and open the door. I would turn on the light -- but the light would not come on. Sometimes the light came on and popped off, as though the monkey had used his power to make the light bulb burn out. I wanted so bad in these moments to wake mom up. But, they happened so often, that I had better not.

Then, the next morning, the light would work fine.

So, were these events hallucinations due to Tedral?

There were also moments I would be home with the flu. I always thought it was a treat to get to lie in mom's bed, and that's what I got to do when I was sick. However, I remember being so sick on these days that I didn't really get to enjoy it. Not only would I be extremely nauseated, I would also have a headache so horribly bad that I felt my head was going to explode. I would feel so miserable that I would cry. I know mom felt bad for me, but there was nothing she could do. These episodes would last about one day. The next day I would be fine, and I was probably back at school.

Now, it's surely possible these episodes were caused by the flu. However, I have had the flu many times since then, but have never had it that bad. So, this makes me wonder: was it the Tedral? Was it an accidental Tedral overdose?"

I mean, none of these events may have been the medicine. However, considering similar stories I have now read about Tedral, one can't help but wonder.

Anyone out there have any Tedral experiences, please feel free to share your stories in the comments below.

1981: Terror in a smoke filled room

In 1980 most people didn't think twice about smoking in front of others, let alone asthmatic kids like me. My family was no different.

I want it to be clear this is simply my version of events on this particular evening, and that this is not meant to be a knock on members of my family who smoked.

I had an Alupent inhaler, but it was at home. If you have asthma, you know the drill, "If you forget it, you will need it." So, this was probably my first experience with asthma anxiety caused by not having my inhaler.

Grandpa was sitting on the day bed of his sitting room, a cigarette dangling between two fingers. I watched as the smoke swirled above his hand, polluting the air. In a way I enjoyed the smell of cigarette smoke, but my lungs hated it. My throat burned. My head ached. My chest was tight.

Someone flatuated, and grandpa laughed. I watched as his body bobbed up and down as he did so, and then he put the cigarette to his lips, inhaled, and blew his smoke across the room where it lingered in the stale air. No one seemed to notice this but me.

I heard a smack, and I turned and saw that Uncle Tad, who was sitting on a bench by the window with baby Jody on his lap, was cringing away from his wife, who sat next to him. She was blushing. He was laughing. I assumed she smacked him.

Uncle Timmy was sitting in a faded leather chair facing away from me, and all I could see of him was his foot as it dangled over the thick arm of the chair. I could hear his laughing over the laughter of the others.

I was standing in the doorway trying to breathe air from the hallway that was barely fresher than that in the room. My shoulders were high. I was calm. I was breathing slowly, but with difficulty. I did not want anyone to know I was in distress. I was ten-years-old.

Aunt Mary, who had been curled on the floor near her brother Tad, stumbled across the room and darted past me into the hallway, laughing the whole way. I could hear her laughing all the way down the stairs, only to cease with the slamming of a distant door.

My Great Aunt Dolly, who was sitting on the tile in front of the crackling fire in the fireplace, was rolling side to side with laughter. Aunt Tossi was sitting on the floor between the leather chair her
brother Timmy was slouching in and the TV, was laughing so hard she fell over onto her side.

My dad and mom were sitting on the bed to the right and left of grandpa. Mom had a smile on her face, but she wasn't laughing. I was hoping she had had enough of the foolishness of dad's siblings and would want to go home. They were a fun family, but I wasn't in the mood for fun: I just wanted to get home to my Tedral. I had not been introduced to Alupent yet. That introduction would come later in the year.

Despite my hopes, mom made no effort to move. She looked comfortable wrapped in one of grandma's afghans, and more than likely was in no hurry to go back out into the blizzard that was raging outside.

I wanted her to look at me at least and notice I was miserable, but she didn't do that either. I was on my own.

You are probably wondering: why didn't you just ask for help? Well, for one thing, the last time we went to grandmas I told mom I couldn't breathe, and we all had to leave. My brothers seemed annoyed about this. So, this time, I didn't want to ruin everyone's fun. Worded another way, I was shy.

After the laughter boiled down, there was silence in the room for several long minutes. Dad spoke, breaking the silence. He said, "You should have seen dad in action today," he was smiling cheek to cheek, peering at his dad, who chuckled, and puffed on his cigarette.

I heard a bang from down the hall, and turned and saw my brother David rush from a room. "Come
on, John. We're gonna play hide and seek downstairs."

"I can't." I whispered, hoping no adult heard me. The last thing I wanted to do was explain why I didn't want to play. I turned back around, and saw that none of the adults I could see were paying attention to me anyway. They were all looking at dad. This was fine with me.

"So anyway," dad said, "We had a light green Gremlin with an orange hockey-stick stripe down the side. Dad and I were checking it out. He said, 'Isn't that the God Damned ugliest car you'd ever seen?'"

He cowered as mom reached around grandpa and made to slap him. Grandpa, it seemed anyway, pretended not to notice.

"Watch your mouth, Bob!" She meant business. There was no swearing when mom was around.

I watched as grandpa dumped the butt of his cigarette in his beer can, and I felt a moment of joy because, I assumed, the air would be fresh now for a while. Then I heard the flicker of a match, and smoke billowed into the air where Aunt Tossi was sitting. She blew out the match and a new cloud of smoke wafted up to mingle with the cigarette smoke. For a brief moment the sulfurous incense of the match seemed to mask that of the cigarette smoke.

She set the wasted match into an ashtray and tossed the match book to Aunt Dolly, who proceeded to pluck a Marlboro from a basket, and then she handed the same match book to my dad, who buried it in his grasp. I took a difficult breath of hallway air, but couldn't prevent myself from breathing in some of the smoke that was now lingering thick and fog-like in the room.

Dad said, "And dad said, 'Son, ain't that the the God damned ugliest car you'd ever seen?' and I laughed because that's exactly what I was just thinking. And here it we had just parked it in the middle of the showroom." He plucked a cigarette from a pack in his breast pocket, and stuffed it into his mouth.

I heard a another bang behind me, turned, and watched as my brothers rushed from a room, down the stairs. "Come on, John!" The shout of one of my brothers reverberated through the house.

"Anyway, it wasn't five minutes later," dad continued, talking with the unlit cigarette dangling from his lips, "and this costumer came in. Dad," he paused, seemed to snicker off a laugh, and lit a match. "Dad walked this guy over to that ugly Gremlin and said, 'Now, ain't that the most beautiful car you'd ever seen."

Slow breath in through the mouth and out the mouth. It was very thick air, so it seemed. My chest burned as I inhaled. The breath only went about half way into my lungs. I had to work hard to fight off the anxiety. I had to stay calm so I didn't ruin my family's fun.

Laughter filled the room.

Dad cooly chuckled as he lit his cigarette, took in a deep breath, and blew smoke across the room. He chuckled again, then added, "He sold that car less than an hour later." Even mom joined in the laughter this time. But not dad and grandpa; they were too cool to laugh. They both smiled as they puffed on their respective cigarettes.

Time passed. Listening to the stories of the adults made me forget my conundrum, if not for a short while. Then it all came back to me as I heard mom's voice.

"Do you want to sit up here," mom said to Aunt Dolly, who was sitting Indian-style on the floor. Yes, get up mom, and come over by me

"No," Aunt Dolly said, "I'm doing just fine here on the floor. Besides, it feels good by the fire." Oh, she just wants to sit by the fire. Come on mom! Look over here! I felt a sting through my arm as I hit the door frame with my fist.

I heard grandma's voice from the part of the room I couldn't see from where I stood, and then watched as she walked around the leather chair, past me and down the hall. I heard a door shut.

I felt a breeze as David rushed into the room. He had a fresh beer for grandpa. Kr-chick went the beer tap. Grandpa tossed a quarter into the air and it plopped onto the floor. Devin bent to pick it up. Grandpa took a swig of his beer. Moments later my older brother Bobby popped into the room with more beers, and handed them out to the men in exchange for quarters.

"No running!" I heard grandma say from behind me as Devin rushed past me again and down the stairs. Grandma came into the room with a box. She sat on the floor and set the box next to her and removed the lid. She started handing out pictures.

Oh, come one, I thought as mom took a pile of pictures and slowly flipped through them, I just want to go home. Come on! Can we just go! COME ON!

Once she was done handing out pictures, grandma came and stood by me. "Why aren't you playing with your brothers?" Then, as though she had come up with an answer to her own question, she said, "Come with me."

I followed her through the room, over legs and around chairs, to a connecting room where her bed was. My cousin Timmy and Tyler were playing with something on the other side of the bed, giggling all the while. On this side of the bed were cousins Julie and Jennifer lying on the floor coloring in a Bugs Bunny coloring book.

Grandma walked me around the bed, and moved a few things around the top of an antique dresser (the same one I now have in my basement, decorated as my shrine to grandma). She was looking for something, and now she found it. She picked up the object and proffered it to me. It was a wooden puzzle. “I picked this up at a yard sale the other day," she said, "I was thinking of you.”

She told me I could sit on her bed and play with it. However, she had already told all the other kids they were not allowed on the bed. That was her rule.

You're letting me on your bed because you feel sorry for me, I thought, and opted to not get on the bed. You know something is wrong with me. But you don't know what. She doesn't know that I can't breath. Or does she? 

"Go ahead, John, it's a fun puzzle." Grandma said.

Knowing I had no other options, I hopped onto the bed and pretended to play with the puzzle. It was hard to feign interest at this point. It was getting really hard not to let everyone know I couldn't breathe. I did it though, just like so many other times.

As soon as grandma was back in the other part of the room I heard a boom, a rush of laughter, and noticed Uncle Tom was rolling around the floor wresting with Torri. At first I thought they were really fighting, but then I realized they were both holding their guts. They were laughing.

I started playing with the puzzle, but stopped as my brothers rushed into the room in a loud furry and jumped onto the bed.

“You can’t be on here,” I said. They didn’t listen. A moment later all the boys were on the bed, and I was sitting on the floor. My chest was now itchy tight, and I could feel the wheezes. I really had to work at making them not audible. I sat leaning against the wall behind the leather chair.

I could smell the smoke over the smell of antiques, and I could feel my throat burning. I made to wipe snot away from my nose, wiping it on my sleeve, eyeing grandma as I did so, knowing she'd say something if she noticed. My nose burned.

I poked my head around the leather chair hoping no one would notice me, and listened to the lighthearted conversations and the laughter. I didn't care about that stuff. What I was interested in most was my mom. I knew she usually would get to the point she'd want to leave and would hint to dad it was time. Usually she would do this and nobody else would want to go.

This day, when I really wanted to leave, she didn't say anything. She just continued looking at grandmas pictures.

"You want to look at these?" I looked to my right and saw Tossi was holding the stack of pictures to me.

"No thanks," I half grunted. I wanted to, boy did I want to look at pictures, but I wanted to go home even more. I thought if I were home I'd be able to breathe fine.

I was wrong.
------------------------
On the way home I sat in the backseat, with Bobby and David on either side. I concentrated hard not to letting on that I couldn't breathe. I would be fine if I could just get to my Alupent inhaler. I will have it soon. I will use it soon.

Only one problem: it was close to being empty. I had never had this experience before. I had been short of breath many times, had mom or dad take me to the emergency room many times, but I never had an experience where I had my own rescue medicine. I also never had experienced before having such a rescue inhaler and it being empty. Okay. So, you can imagine my stress.

In retrospect, I should have just said something. In retrospect, the fact that i had gone through my inhaler so fast was a sign I should have sought help. In retrospect, mom should have kept charge of dosing my inhaler to me.

Think of it this way. Most kids should have died in the 1980s. We played on slides that were a mile high. We ran in front of huge torpedo swings made of metal. We never wore seat belts. We never even heard of bike helmets. And, to add to this, kids were in charge of their own asthma rescue medicine. Okay.

Some kids probably didn't survive this decade. Most kids, including me, did. Somehow.

I would scratch and claw my way through the night. I would open one of the two windows in my room and inhale some of the cool outdoor air. I would pile up my pillows and blankets so I could lean on them. Sometimes I'd fall asleep out of pure exhaustion, only to wake up to audible wheezing. My chest would feel heavy. My inhalations would only go half way in. The panic set in.

I would use my inhaler sparingly. I would try to spread it out. However, at some point, there was no mist. I would run it under hot water. I would finally give in and wake up mom.

1978: No antihistamines for this asthmatic

I remember my mom specifically telling me when I was a kid that I can't have antihistamines. She said they may cause bronchospasm, and that doctor said so. What my doctor prescribed for me instead was Tedral and salt water drops. That's it!

I remember many times when my nose was so plugged I couldn't sleep. I remember playing outside and my eyes would basically swell shut. Mom would have me lie on the couch, or on my bed, with a cold, wet rag over my eyes. Obviously, this affected my social life.

It also affected my asthma. 

My doctor, according to a 1978 notes my mom took while talking with my doctor on July 14, 1978, I was supposed to take Tedral three times a day, and rinse my nose with salt water drops four times every day. The medicine tasted terrible, and rinsing out my nose with salt water was torture. I hated both. 

It kind of reminds me of something Teddy Roosevelt wrote in his diary about growing up with asthma in the mid 19th century: "The medicine was often tortuous, and was often worse than the disease." I am paraphrasing it here, but that's pretty much what he was saying. I would have to say, that in the 1970s, asthma treatment wasn't much different. 

I can understand why my doctor would not prescribe for me a medicine that probably would have offered me some relief. It goes back to a myth in medicine during the 1950s and 60s that antihistamines, although they offered relief from allergies, dehydrated your lungs. This, it was believed, would cause bronchospasm and asthma.

I think it would have made more sense if they would have prescribed me an antihistamine, such as Marax (I am told it actually tasted good). I could have trialed it to see if it offered a benefit, If it didn't, or if my asthma got worse while taking it, I could have stopped. But this trial never happened. Instead, based on a myth, I suffered.

Now, by 1976, this myth was on the way out the door. The down side here is that most doctors were educated back in the 1950s, when the myth was taught in medical schools. Unless they kept up to date on their studies about asthma and allergies (and asthma was considered an allergic disease back then), doctors -- such as my doctor -- would have prevented themselves from prescribing antihistamines to asthmatic kids such as myself. 

An article in the January, 1968, edition of the Journal of the National Medical Association makes light of this myth. 

Antihistamines. The use of antihistamines in asthmatic children has been condemned in the past. In theory, they should be valuable in counteracting the effect of one of the principal allergic mediators-histamine. However, they do dry secretions and possibly, aggravate the patient with asthma. Practically speaking, some small children with pollen allergy do respond to antihistamine. But, generally, they are not effective in reversing bronchospasm. (1)

I did not start using antihistamines until I was over 18. They worked great, and have never induced asthma. I suppose I could hate my doctor and parents for not allowing me to have them, but I'm not. This is just one of those life lessons you learn as you grow older. You do the best you can with the wisdom you have today, and as you learn better you do better.

References:

1. LeNoir, Michael A., Lawrence D. Robinson, outpatient management of an asthmatic child, Journal of the National Medical Association, January, 1976, page 46-50, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2609533/pdf/jnma00473-0072.pdf, accessed 2/22/17

1980: My first rescue inhaler

During the 1970s, asthma was just sort of dealt with. This changed  one humid spring day in 1980.  My mom took me to see Dr. Gunderson.  His office was attached to the Apothecary Shop in Manistee. It was between Wahr Hardware and Cypress Street (U.S. 31).

I remember sitting on the doctor's bed. Mom sat in a chair to my left. Dr. Gunderson came in right away. The nice thing about not being able to breathe is you are the priority, so no waiting.

He must have observed my hunched shoulders, barrel chest, and paradoxical breathing. There was a discussion between mom and him. It centered around whether to let mom take me back home or to admit me to the hospital. Dr. Gunderson decided to send me home with an inhaler. "Hold on, John, I have something for you." He left the office.

He came back. In his hand he had a small, white object. "This is an inhaler," he said. "I'm going to hold it two finger lengths from your mouth, like this." He demonstrated this. You exhale as much as you can, and when you are ready to inhale, I will squeeze the inhaler. You take in a deep breath. Hold your breath for ten seconds."

There was a pause as he allowed me to time to process what he said. He

"Think you can handle that?" he asked.

I nodded.

"Okay, let's do it."

He did as he said, and put the inhaler in front of my airway. I opened my mouth and exhaled. I inhaled and he squirted the inhaler. I was winced, but held my breath as instructed. I exhaled, and inhaled. Exhaled. Inhaled. Exhaled. Inhaled. My breathing was normal.

Now we have to do a second puff. Together, we repeated the process. Once again I was hit with a blast of a horrible medicine. But I didn't care about the taste. It gave me my breath back. I loved this thing.

"What is that called?" I asked?

"It's called an inhaler. It's called Alupent."

I smiled.

"I like that. I love that."

He said, "Now, this is a rescue inhaler," he looked at mom, then back at me. "You keep it. Let him use it every 4-6 hours if he feels short of breath.

In retrospect, those first two puffs of Alupent were the only times I ever tasted rescue medicine. I would end up using it so much that the taste, even if it was horrible at first, didn't matter. This medicine gave me instant relief.

My mom held onto the inhaler at first.  I would say she did this for about a month or so.  I mean, maybe it was longer. But this is how my minds eye sees it. As with my experience with Tilate, mom like to give us kids responsibility for our own medicine. Even at the time I wasn't sure this was a good idea, but it's how it was back then. It's how my mom did it, anyway.

I remember meeting mom in the kitchen a few times. She would give me the inhaler, and I used it as instructed. I think mom might have assisted me once or twice, but then she gave me the responsibility. I remember asking for it as often as I could. So, as you can probably imagine, after a while it was easier for mom just to let me keep the inhaler and use it when I needed it.

Actually, as I think about it, this probably became a necessity as school started. I would have to take my inhaler to school. I actually hated this. It was a bulge in my pocket. This made me feel very uncomfortable. I was embarrassed about the bulge. I was embarrassed that I was short of breath. I tried to hide how horrible I felt. And, unfortunately, I was also embarrassed to use it in front of my classmates. This was true even on the playground. This would turn into a huge problem for me.

And there were times when I was short of breath, and I didn't want to bother mom and dad. So, here I had this inhaler on my bedside table. Here I had this medicine that would give me my breath back. So, at some point, and this wasn't too long after I got it, I took a puff at the three hour mark. I did not have any problems. In fact, it made me happy -- very happy.

It didn't take long before I was comfortable using it at will. It did not take long before I was going through an inhaler a month. It did not take long before I was going through an inhaler a week. It did not take long before I was gong through an inhaler in a few days. It did not take long before I went through my first inhaler in a few hours.

My Experience With Theophylline

Here’s some interesting facts about my experience with theophylline. This, I think, is an interesting story, as it shows how far asthma wisdom has improved just during my lifetime. This is where I enter into our asthma history.

During the 1920s, researchers learned that theophylline opened airways to make breathing easier. Theophylline is a white crystalline powder first isolated from a tea leaves in 1888. Theo is Latin for tea, and phylline is Greek for plant. During the 1920s was recognized as a bronchodilator and was first prescribed for asthma. During the 1940s an IV version of the medicine was used in hospitals. During the 1950s it was used to treat asthma. However, it wasn't until the late1970s (I was born in 1970) that it was commonly prescribed for the treatment of asthma (back then, asthma was only treated as an acute disease, and you didn't take medicines to prevent symptoms). During the 1970s, slow release theophylline was introduced to the market, beginning with the brand Theo-Dur. So, if you felt fine, you quit taking your medicine. My point here is that I was born at the precipice of good asthma medicine. However, I was also born about 19 years before asthma was treated as a chronic disease, where asthma preventative medicines were taken every day to prevent asthma symptoms. (5, 6)

In 1976, I was introduced to theophylline. I would have been six. It was probably a solution called Sustair. Mom kept it in the bathroom medicine cabinet, and spoon-fed it to me once or twice a day when I complained of shortness of breath. I would go without taking it for long periods of time. Around 1980 I was prescribed a white pill called Theo-Dur. I figured I would probably never get off it. My memory around this time is a little hazy. I asked my mom if the medicine I was taking was theophylline, and she had no memory. There was another medicine, one that tasted terrible, that I took when my asthma was bad. It was also a solution. Considering corticosteroids taste nasty, I'm guessing this other medicine was a steroid. If you have knowledge of medicines a kid might be prescribed for asthma during this era of our history, please let me know. I asked my mom about it, but she doesn't remember. My doctor at this time has since passed away, so I obviously can't ask him. I do know I was started on theophylline at an early date, so I think I'm safe to assume the medicine I took every day back then was theophylline.

I actually wrote a story a while back about forgetting to take it with me on vacation. Keep in mind I was not introduced to the rescue inhaler until I was 10 in 1980. Physicians had to constantly monitor patients on theophylline to monitor theophylline levels. (4) I don't remember getting poked a lot, so, if this was done, it wasn't too often, maybe once a year -- maybe never.

Update: I remember that after each of my doctor visits mom would sit in the doctor's office and talk to him. My mom was a note taker, and thankfully she kept these notes. I recently found them in an old picture book mom kept. According to these, the medicine I was prescribed in 1976 was 1 teaspoon of tedrol, which is a combination of ephedrine and theophylline. The notes also says I can take brondecon. From a quick search through Google Books I can see that this was an elixir of theophylline. Of course, the note says I should take them to August 28. Why he chose this date for me to quit is unknown. However, I would imagine that this would carry me through allergy season. Again, it should be noted here that back then you only treated acute symptoms, and once you felt better you quit taking medicine. So, this may help explain the note to quit taking them at the end of August.

Update. The medicine I was prescribed in July 2, 1980, was 2 of 150 mgm theovent at 8 a.m. & 8 p.m. till run out & as for a prescription for the 250 mg of which he'll take 1 at 8 am & 8 p.m. until further notice. So I was taking the pills by 1980. On July 26, 1980 I was prescribed 2 theovent capsules at 8 a.m, 2 p.m. and 8 p.m. every day. This change makes sense as it would help keep my theophylline level stable throughout the day. I should have stayed on this dose, and you will see why in my note for 1985 below. As an aside here, there was also a note: "Have a theophylline blood level done at hospital 10 a.m. June 26. Call about the results June 30th or July 1st."

In 1980, I had episodes of severe nausea and headache. I remember these episodes were always blamed on the flu. However, a part of me now wonders if it was due to an unintentional overdose of theophylline. A therapeutic dose is above zero. The safe zone is less than 10. In order to gain a therapeutic benefit, the dose had to be high enough that the benefits often came with side effects such as tremors and stomach problems. Sometimes I wonder about this. The headaches and nausea were so severe that, even at the age of ten, I cried. .A normal theophylline level is zero (it’s not needed). A high theophylline level has been linked with some severe side effects, such as nausea, headache, seizures, and even death.

Initially, a level of 15-20 was considered therapeutic and safe. However, later on, 5-15 (or a level of 10), was considered therapeutic and safe for most asthmatics. (6) I do not know what theophylline level my doctors were searching for.

This was also the year I was introduced to Albuterol. My albuterol history will be told at a later date. I'm sure you'll find that interesting considering I became a prototypical rescue inhaler abuser.

By 1984,  I knew caffeine was a mild bronchodilator. I don’t remember how I learned about it, but I was told from someone that caffeine opened airways. I tried it a few times with negligible results. I figured, and probably rightly so, that my was too severe and required stronger bronchodilators than just coffee.  Years later, I’d learn that theophylline is a member of the xanthine family of medicine, the same family theophylline belongs too.

For the record, coffee was first recommended as a treatment for asthma by Henry Hyde Salter in 1959. But there was no mention of it in later medical textbooks that covered asthma, such as Henry Osler's 1901 edition of "The Principles and Practice of Medicine." (3, 5)

In 1985, my theophylline dose was tweaked. I was admitted to “the Asthma Hospital” in Denver, and doctors there monitored my blood theophylline level for a 24 hour period. I had a port put into a vein in my right hand that allowed nurses to draw my blood every couple of hours. By doing this they observed that my theophylline level dipped around 2 p.m.. So, rather than me taking my dose in the a.m. and p.m., they had me take it at scheduled times, such as 6 a.m., 2 p.m. and 10p.m. This kind of sucked because I had to get up early and stay up late. I also had to remember to take it in the afternoon. But it worked. When I repeated the test a month later, my theophylline levels remained stable throughout the day, resulting in better asthma control. The doctors at this hospital also had me take Azmacort 4 puffs 4 times every day to control my asthma. The combination of these medicines worked great. The problem was being compliant with this regimen, as it was a lot of pill taking and puff inhaling. This was a problem not just for me, but for many other asthmatics at the time. The good news for asthmatics was that, during the 1980s, many other asthma medicines were approved by the FDA that reduced inflammation and kept airways open. This included a safer rescue inhaler called albuterol (Ventolin, Proventil) and inhaled corticosteroids like beclomethasone (Vanceril) and later triamcinolone (Azmacort).

In 1987, it was learned that some antibiotics caused theophylline levels to spike. I was vaguely aware of this, but like the risk of dying due to rescue inhaler abuse or simply due to having asthma, I heeded the warnings little attention. The antibiotic known to discovered to raise theophylline levels was Ciprofloxacin products. A warning was placed on the Theo-Dur package insert, so this is probably how I was alerted to this. I do not think it was my doctor. Why would a doctor warn you of the risks of taking a medicine he would never prescribe for me anyway? The labeling change was not added until 1990. Just a thought here: Maybe I was prescribed one of these medicines, and this explains my nausea-severe headache story above. Probably not, but you never know.

By 1988, I knew what happened when I forgot to take my theophylline.  In my defence, I was a college student at the time and was really busy learning. I simply forgot to take it for a couple days. My asthma became increasingly worse during the day, and my inhaler failed to remedy the situation. My chest became tight, and felt like someone was inside it with a feather tickling my airways.  I started coughing, and it was a painful cough productive of white secretions. It was a familiar feeling. I felt it before, many times. Over time, I learned it was because my theophylline level was too low. The remedy was to take theophylline. I trudged to my dorm room. By the time I got home my asthma attack was in severe mode. I took my theophylline dose, and sat all frogged up on the edge of a chair. I watched the clock. I knew I would start feeling better in about 20 minutes. It was a long, grueling 20 minutes. It’s a neat, euphoric feeling when one moment you can’t even take in half a breath, and then all of a sudden each breath gets deeper and deeper. You also don’t want to experience this. As a side note here, my room mate Frank came into the dorm room during this time and saw me in my panic stricken state. I was embarrassed. He was concerned. I said, “I will be fine. Just give me a half hour.” Of course, I said this in short, choppy sentences. What happened? A normal theophylline level is zero. My airways are chronically inflamed. Theophylline helps reduce this inflammation to make airways less twitchy and keep them open. The exact mechanisms are complicated and not well understood. However, once you start taking it, your body becomes dependent on it. When I missed a more than one doses, my theophylline level fell and this inflammation got worse. It irritated nerve cells in the area to cause that itching feeling. It irritated goblet cells to increase mucus production causing that painful cough.

In 1991, I started taking Salmeterol (Serevent). This is basically a long-acting albuterol. You were only supposed to take two puffs twice daily. I don’t know if it worked or not. I don’t know if I was even compliant with it (and probably wasn’t). What I do remember is one night my asthma was really bad, and I kept waking up and leaning to my right to grab my albuterol inhaler. I took many, many, many puffs on my inhaler that night. When I woke up, I realized that I didn’t puff on my serevent that night: I was puffing on my Serevent. This was when I realized that the fears about this great medicine are unwarranted. I realized Serevent does not kill asthmatics. If people die of asthma and a serevent inhaler was found clutched in their grasps, it was because they over relied on this medicine rather than seeking help. Of course, in the world we live in, the medicine usually gets the blame when bad things happen. Anyway, as you read on you will see why I put this in this post. My doctors tried to get me to take this medicine over the next ten years, although, especially considering I was using (and abusing) albuterol, Serevent made me too jittery. I hated this side effect, so I refused to take it.

By 1993, I was placed on the highest theophylline dose ever. The asthma hospital helped me obtain good control of my asthma. However, by 1993 it was uncontrolled once again. My doctor at that time (Dr. Oliver) increased my dose to 600 mg twice per day. It worked great to control my asthma. The problem with this is the there are side effects of theophylline, and they are similar to when you drink too much coffee. It increases mental acuity. It keeps you awake. It relaxes your esophageal sphincter and causes reflux of stomach acid, or what is now referred to as GERD. I became nauseated. My stomach was bloated. I felt horrible. I saw a surgeon. He performed a procedure called an EGD, or esophagogastroduodenoscopy. You could also call it an upper gastrointestinal endoscopy test. It confirmed I had an ulcer. There’s no way of knowing for certain the cause of an ulcer, but considering the high dose of theophylline I was on, it seemed the likely culprit. Of course, it could also have been a side effect from a steroid burst, or stress, or a bacteria.

In 1997, my new doctor (Dr. B.) was concerned about my high dose of theophylline. He was an Internist. He also said that he had never heard of such a high theophylline dose as mine. However, he checked my theophylline level and it was less than 10. He said he didn’t want to try to wean me off of theophylline due to the risks, and also due to my fear as to what would happen to me if I quit taking it (see above). Regardless, my Internist was surprised such a high dose didn’t kill me.

In 1997, Dr. B intentionally took me off my theophylline. Ironically, the day after I met Dr. B. I had a severe asthma attack. In a feeble attempt to self-help myself, I took extra theophylline. This was stupid. I was admitted to the hospital. A blood draw confirmed for the doctor my theophylline level was high. So, he cut me off my theophylline. This was equally stupid. Never take someone who is chronically addicted to theophylline off it. My asthma got worse. Seven days later I was still on high doses of corticosteroids and my asthma was still terrible. It was the weekend. My regular doctor got the day off. So, a  new doctor came to see me (Dr. M). She prescribed a dose of aminophylline. It’s basically theophylline given by IV. Within hours I was breathing easy. That doctor may have saved my life. Prior to being admitted I was still prescribed 4 puffs of Azmacort 4 times a day. However, a new medicine called Flovent had been introduced to the market. It contained fluticasone, an inhaled corticosteroid that only needed to be taken twice per day. This was my new prescription. It made compliance easier. It was also thought to be a better steroid. I don’t know that it was really better, however, other than it made compliance easier. He also prescribed Serevent. I tried to be compliant with these two inhalers. But, once again, the Serevent made me too jittery, so I quit taking it.

In 2001, I started taking Advair. It was (is) a combination of long acting bronchodilator called salmeterol. I was aware of it for a few years. However, I feared the fact that Serevent was in it. I figured it would just make me too jittery. However, I had a friend named Shauna who also had severe asthma, and her asthma (she said) greatly improved once she started taking Advair. So, I decided to try it. It worked great. My asthma greatly improved. In fact, once day, I went to Detroit to visit my brother Tony. I was with my girlfriend (and current wife). I panicked. My wife and I scrambled to find a pharmacy to get theophylline. Thankfully, I was using Rite Aid, and there was one near my brother’s home. I had my theophylline filled. A few months later, we visited her friends Carrie and Chris at their apartment. I once again forgot to bring my theophylline. However, I did not get it refilled. I had no trouble with my asthma that night. This was when I realized that Advair was doing a great job of reducing airway inflammation and keeping my airways open. I wondered, “Will I be able to finally get off theophylline?”

2003, the decline of theophylline as a top-line asthma medicine. During my annual checkup with Dr. B. he said, “Ten years earlier nearly every one of my asthmatic and COPD patients were on theophylline. Today, hardly any are.” There was a brief discussion about this, and we both decided to continue my current regimen. I had been on it so long, and it worked, so why change it. However, this got me to thinking. It was about this time I started discussing a slow wean with Dr. B. I tried several times, but there was that constant fear in the back of my mind. I failed to wean myself off it.

In 2007, I was finally weaned of theophylline. I honestly did not think it would ever happen. However, back in 1988 I was introduced to email and thought it was a stupid idea that would never fly. That same year my journalism teacher said, “I don’t ever envision a world without newspapers.  As it turned out, email was a huge success, newspapers are slowly becoming extinct, and theophylline is no longer a top-line asthma medicine. I had been on Advair for six years. I once again discussed with Dr. B. about a theophylline wean. He said to go really slow. So, this is what I did. It took me a whole year. I reduced it by half a pill a month. For many years afterwards, I kept the bottle of theophylline in my medicine cabinet. It was there as a reminder of how I was once addicted, and thought I would never get off theophylline. It’s a sign of how far asthma medicine has come in my lifetime.

It was also this same year I had a gastrointestinal bleed. I became nauseated and lightheaded one Monday afternoon. I was admitted to the hospital. My hemoglobin was 8 (normal is 13.5-17.5) I had another upper GI scope. It turned out I had another ulcer. I was taking a lot of Aspirins for headaches. I was off theophylline, so I couldn’t blame it. I was on Advair, but I can’t imagine an ulcer would be a side effect of such a low dose inhaled. Still, my doctor put me on Prilosec and said I will never be able to stop taking it. Actually, I am going to blame my theophylline and steroid history for messing up the lining of my stomach. I am because I can.

In 2010, I became addicted to coffee. Is this any surprise. Here I was chronically addicted to another member of the xanthine family. My body must have missed it. So, when I started to drink coffee for the first time in my life, I quickly became addicted. I did not know until recently that caffeine was metabolized into theophylline (actually, I probably did know this and just forgot). Still, it’s should be no surprise that I merely exchanged one member of the xanthine family for another, only a much lower dose. Hence, I still have GERD and the occasional trouble with my stomach. Interestingly, Prilosec has now been linked with dementia, so I suppose I have that to look forward to too, if I so happen to have the genes that lend to that sort of thing.

Here’s an interesting note. As a side here, I want to explain why it is I can now take Advair with no problems, when Serevent once caused me to feel jittery. Studies have shown that when you inhale a respiratory medicine with a propellant, it is distributed better in the airways, possibly resulting in better asthma control. So, it’s possible that just the change in the way Advair is delivered results in fewer side effects. Advair is a dry powdered inhaler. This is the only reason I can think of why I tolerate Advair so well, and that medicines like Serevent inhaler cause the jitters. Another interesting thought is Symbicort, Dulera, and Breo also cause the jitters. I cannot explain why Breo does this, other than it is one strong dose once a day. Serevent, Symbicort, and Dulera are all inhalers, at least when I used them.

Anyway, it’s interesting. Asthma is a heterogenous disease, meaning we are all different. This would explain why my asthma history, and what works for me, is different than what works for other asthmatics. Again, I think this little bit of history is a testament to how far asthma wisdom has advanced in my lifetime. As you follow my story, I will give many other examples.

Here are notes my mom took during a visit with my doctor on July 9, 1980. You can see that I was prescribed Theovent, Mom was instructed to have me take one capsule at 8 a.m. and 8 p.m, until further notice.
You can see here that I was also introduced to Vanceril, my first steroid inhaler.
Poly-v-flor is a multivitamin. Salt water was to relieve nasal congestion.
Allergy shots were also to be continued.

Further reading and references:

1. Breathinstephen.com: The Days of Aminophyline
2. ehealth: The quest to learn what that asthma solution was in the 1970s
3. ATS Journals: Asthma: 100 Years of Treatment and Onward
4. Mozayani, Ashraf, Lionel Raymon, editors, "Handbook of Drug Interactions," 2nd edition, pages 770-771
5. Picher, Maryse, Richard C. Boucher, editors, "Purinergic Regulation of Respiratory Diseases," 2011, Springer
6. Navarra, Tova, "The Encyclopedia of Asthma and Respiratory Disorders," 2003, pages 188-9

1973: Alupent inhaler my story

In 1973 I was 3-years old. This was the year that a little white inhaler called Alupent was approved by the FDA. there was other rescue medicine on the market too, including Alupent solution. So, while I may have been too young for an inhaler in 1973, I certainly was old enough for my mom to give me breathing treatments when I was feeling short of breath.


This did not happen. I do not fault my doctors for this. I am sure they remember quite well the fact that the asthma death rate spiked in the late 1950s following the introduction of the Medihaler Epi to the market. They were well aware that, while asthma rescue medicine opened airways, it also had a strong cardiac effect.


After the Medihaler Epi and Medihaler Iso were introduced to the market in 1956, doctors were eager to prescribe these medicines for their asthma patients. And asthmatic patients love the convenient, and quick relief provided by these inhalers. They became an overnight sensation among the asthma community.


Asthmatics stuffed them in their pockets. They stuffed them in their purses. They took them with them wherever they went. And when they felt asthma symptoms, they pulled out their handy inhalers and they puffed. If their breath did not come back, the kept puffing until it did.


So, one theory is they became over-reliant on their inhalers. After puffing too many times, the cardiac affect caused their hearts to stop. They went into cardiac arrest and died.


There was also a second theory that postulated that the inhalers gave asthmatics a false sense of hope. that, rather than seeking help when they needed it, they kept puffing on their inhaler. By the time the decided they needed to seek help, it was too late. I personally prefer this theory.


However, that is neither here nor there. I am simply relaying this bit of information so you know that the medical community was fearful of rescue medicine. Doctors surely wanted to help asthmatics, but they didn't want the medicine they prescribed to harm their patients either. So, they did not prescribe me this kind of medicine. I had asthma attacks, and if I needed help my parents had to recognize it and take me to the doctor or hospital.


The fact I was a child asthmatic probably made Dr. Gunderson even more fearful of prescribing rescue medicine. So, regardless of how bad my asthma became over the course of the next seven years, my parents had no rescue medicine to help me breathe better.

1970: The Beginning: Born with asthma genes

I was born on January 4, 1970. I was born with asthma genes. None of this was known at the time. In fact, not even scientists knew about asthma genes.

It wouldn't be until about 30 years later that the concept of asthma genes was even conceived.

I cannot guarantee this, but based on what I have read to this date, I can state with some degree of confidence that I was not born with asthma.

Does that make sense? I was born with asthma genes. In fact, i was born with a random assortment of the over 100 asthma genes. This meant that I had genes that were ready to tell my immune system to do something abnormal. However, this wasn't about to happen until these genes were exposed to some "environmental factor."

Environmental factors are substances around me, either in the air or inside me, that act as "keys" to turn genes on. Examples of environmental factors may include particles or chemicals in the air, such as those produced from wood or cigarette smoke. They may also include allergens, such as dust mites, pollen, mold spores, animal dander, cockroach urine, non-steroidal anti-inflammatory medicine (like Aspirin), an certain foods (like eggs, nuts, peanuts, etc.). Another example are respiratory infections, such as those caused by respiratory syncytial virus

So, I do not think people are born with it. Now, this is just my theory, but it's based on pretty good research. In fact, I think most asthma researchers would agree with me.

I know I was exposed to cigarette smoke from an early age. Mom didn't smoke, and dad didn't smoke in the house. In fact, I really don't have any memory of dad smoking in front of us kids. Whether or not he did when i was very little I would have no idea, and mom denies allowing him to smoke in the house. When we were at grandma ans grandpa Bottrell's house, though, I was exposed to smoke. I have some good memories of grandpa smoking. And, when we were over at their house, other people smoked too.

I was probably also exposed to viruses. But what I think caused my asthma, or turned on (activated) my asthma genes, were allergens. Mom says I was always sneezing, wheezing, and breathing heavy, and so I think I was exposed to allergens. I was exposed to dust mites particularly, and seasonal mold and pollen. Day after day exposure to these, perhaps coupled with smoke and viruses, caused me to develop allergies and asthma prior to the age of two.

My mom might have taken me to see the doctor. It was at the corner of U.S. 31 and 8th street. I can picture myself as a baby with a snotty nose and retractions. The doctor (was it Dr. Gunderson back then?) probably prescribed some over the counter medicine and sent me home with my mom. Considering both my memories and peer reviewed medical articles from the time, I highly doubt I was prescribed antihistamines, which I'm convinced would have helped.

There is some evidence that viruses (such as RSV, influenza and para influenza) may damage lower airway cells in such a way as to make a person susceptible to developing allergies. This would have caused me to develop a hyperactive immune response to allergens. And this response to allergens would have caused upper airway inflammation, which in turn caused the sniffles, wheezes and runny nose. it probably also caused rhinitis, which made my nose stuffy and caused me to breathe heavy.

Can you imagine how miserable this would have made me feel. And add into this the fact my older brother was annoyed with all the noises I made, particularly my heavy breathing. No matter he and I had issues getting along when we were growing up.

And I think the allergies, coupled probably with the virus induced asthma, probably ultimately lead to me developing lower airway inflammation, which made my lower airways hyperactive (twitchy) to asthma triggers, which included most of the allergens listed above and some.

There is evidence that allergies make colds more severe. So, every time I got a cold, every time i was exposed to allergens, I suffered from the gamut of symptoms: stuffy nose, runny nose, sneezes, wheezes, chest tightness. nasal irritation, scratchy throat, etc. I remember all these symptoms. I remember my eyes itching. I remember it all. No wonder I was a nerd as a kid. No wonder I had a low self esteem. No wonder why I became depressed in November of each year. No wonder I sat on the bench during school rather than participate in recess.

Of course, most of that would be later on. But, it all began with asthma genes. My genotype included asthma genes. My phenotype was allergic asthma. My endotype was a combination of cytokines, chemokines, histamine, and leukotrienes that were abnormally produced at increased levels by asthma genes and secreted by immune cells. Over time this got worse and worse, especially as I was increasingly exposed to my asthma triggers. And this lead to me developing severe allergic asthma at an early age.

Anyway, something turned on my asthma genes. Another theory is that it was allergies. Still, something had to turn on my allergy gene. So, perhaps a virus or chemicals turned on my asthma genes, and allergies turned on my asthma genes. Who knows. What is known is that I did develop asthma.

I talked to mom about this many times in my life. Her story has been consistent. She said I had a constant cold the first two years of my life (a virus, perhaps? Or was it allergies already?). She said I would stand up in the car and breathe heavy. My older brother Bobby hated the sound of my breathing, so I would have to stand in the front seat.

Okay, I know you are asking: "Why was he standing in the car?" That's just what we did. I have memories of standing in the car. I remember standing in the back seat. This was nice because then you could see. Back then, back in the 1970s and 1980s, kids were safe in cars; kids did not die in accidents. Nothing killed us. The idea of car seats was not even an idea.

So, mom says I got dibs on the front seat. I stood in the front seat, she said. I would often fall asleep, and breathe heavy. I breathed heavy even when I wasn't asleep.

As a side note hear. Seatbelts weren't worn then either. The only seatbelt for me was, when mom slammed on the brakes, her hand automatically went up, as though it would be strong enough to prevent me from shooting out the front window.

Okay, so mom was my seatbelt. Those things on the seat were just annoying knobs that you had to sit on. They were not used. Seatbelts were never used.

I'm sure there was medicine that would have helped a snotty kid who probably had retractions. his chest was being sucked in, but nothing was done. I'm speculating here. But, based on my experience as a respiratory therapist, I bet if I had a head cold all the time, I probably also showed some signs of asthma, and maybe even some severe signs of asthma. And it was all brushed off as a cold, even by my doctor. And so any medicine that would have helped me was no better than the seatbelts.

Not my parents fault here. Not my doctor's fault here either. It was just the way it was back then. They did not know I had asthma genes. The probably didn't know I had asthma. It was not uncommon for it to be brushed off as a cold.

So, I breathed heavy. I had a stuffy nose all the time. I was always coughing. I had snot on my nose. I was diagnosed with asthma when I was two-years-old.