I Woke Up and Couldn’t Breathe

I jerked awake from the sofa in our family room and tried to inhale. Nothing came in! My first thought was that there was a balloon stuck in my windpipe. The harder I tried the worse it got. There was just a screeching type of sound. My wife who was sleeping beside me jumped up and tried to calm me down as I gestured frantically. After perhaps 20 seconds my throat opened and the air finally rushed in. What the hell was going on???

Second most terrifying night of my life 

There are few worse feelings than not being able to breathe, and not knowing why. After pacing around my home for an hour we decided to decamp to my parents house where my dad was a retired physician. Many more days of anxiety and many more moments of dread awaited.

In hind sight I could sort of see it coming 

The reason I was sleeping on the sofa that night was that I had been waking up at night with a weird feeling in the back of my throat for the past couple of weeks. It was like my windpipe was closing inadvertently when I lay down. At first I thought very little of it. Then I got more concerned as it recurred. Finally I decided to sleep downstairs to see if a change of environment helped. I also had a security camera that I could use to record me as I slept.

And identify the point of exposure

A few weeks before this attack I’d taken an exam in a small office space. One guy continually coughed through the entire two hour ordeal. It got so annoying that I almost decided to quit before thinking better of it and suffering through. That was probably where I was exposed to the bacteria.

My Doctors Misdiagnosed Me

After experiencing several more attacks of this nature in various settings — at the grocery store, at my parent’s house, in the car — my family decided I should go to the hospital emergency room. It would be the first of many such fruitless trips.

It’s gotta be GERD

Ultimately I saw a dozen doctors in a well-regarded hospital system in a major city of the United States and despite my video and other evidence that pointed directly to Pertussis they all insisted that I had a bad case of GERD! This despite the fact that I reported no symptoms of GERD and there was barely any evidence for it when they investigated it with a full scope of my throat and esophagus. When I eventually suggested Pertussis and brought my own expert they STILL insisted that it was more likely that I had suddenly acquired “silent GERD” (without any symptoms) than a highly contagious bacteria known to be on the rise in the area and to cause my exact symptoms.

They were not even logical

The first pulmonologist I saw declined to view the video of my coughing on the grounds that it would not be an “objective” way to make a diagnosis. Instead, he wanted to discuss possible stress in my life that could trigger GERD. I told him the major stress I experienced was caused by the coughing spells. He then went on to explain that the Larynx is a very complex mechanism and so it could easily fail, causing the laryngospasms which blocked my breathing during coughing spells. I countered that if this were true then it would have happened at some point earlier in my life. Eventually his partner came in to see me. I shared my perspective that as a software engineer I liked to get to the “root cause” of things. He said that engineers typically make bad doctors because the body is not logical. 

They were confused about available tests

After seeing multiple ER doctors, an ENT, a GI doc, and a pulmonologist, I finally got to see the one doctor I thought might help me: the infectious disease doctor. Yet he too dismissed my self-diagnosis saying that he’d never seen a case of Pertussis in 20 years. After a lot of wrangling he agreed to do a blood test but then returned to tell me I had already received the test. I assured him that my blood had not been drawn, but he insisted twice more that it must have. It turns out he was confused about the difference between the swab test that had been done and the blood test I was asking for. He eventually agreed to order the blood test “against his better judgement” for my “peace of mind.”

They had no good answers to obvious problems

For my fourth trip to the hospital we called 911, rode in an ambulance, and I asked them to put a tube down my nose when I got there so I could breathe when I was choking. Of course they refused, citing the fact that I was not coughing at the moment. Plus, the ER doc told me I more likely had GERD than Whooping Cough (although he did order the swab test). Later, when admitted for observation, I asked what they would do if I actually were choking to death, and the Physician Assistant candidly said she didn’t know. However, she assured me that the rapid response team would be there in under five minutes. I pointed out that five minute was a long time to go without a breath but that did not seem to worry her one bit.

But offered plenty of false assurances 

Later, when I discussed it with the pulmonologist, he told me that if I did pass out from lack of air my Larynx would open up on its own. I was not convinced because (1) there would still be the problem of the mucous in the passageway, and (2) the spasm is an unconscious reflex that happened in my sleep and during surgery. Indeed, there are cases where people died of laryngospasm while sedated. Joan Rivers is a famous example.

I Had to Resolve the Situation Myself

At first I had suspected some environmental issue within our bedroom might be causing my throat to tickle so I moved downstairs. Then I thought that there might be some major environmental issue in our home causing my attack. This was based on my previous experience with an apartment that had black mold and with asthma as a teenager that could be triggered by cats. However, when the attacks continued at my parents house I knew it was something else.

Whooping Cough was the next thing I considered

After ruling out environmental causes Whooping Cough was the next thing to come to my mind. And that was simply because it was a very strange sounding cough. So I Googled it, and the more I learned, the more it seemed to match. This got me fairly excited because Whooping Cough is a pretty easy disease to cure. You just get some anti-biotics.

Fighting doctors as well as a disease

Sadly, a well-informed patient is viewed by many doctors as an enemy. The fact that I knew a lot about the disease was seen as some type of threat to their authority. The fact that my father was a physician was viewed as perhaps an attempt to undermine their pre-eminent role in the exam room. And when I managed to find Dr. Jenkinson and arrange a Skype consult online they acted as though a doctor from another country could not possibly be trusted.

Mission: antibiotics, blood test and vitamin C

At this point I knew that I had Pertussis, and the online doctor had confirmed it. Not only that, he confirmed that he had the same problems with doctors in the UK who were too ignorant and too obstinant to make the obvious diagnosis. The next step was to get antibiotics. Ironically, while the hospital docs were more than happy to prescribe over-priced inhalers, proton-pump inhibitiors, and other useless junk, the one thing they absolutely refused to give me was a prescription for a “zpack” of arithromycin. This is a drug that farmers can give to  cows and pigs propylactically, but doctors would not give to me because, well, they didn’t believe me and that was that. So I went to an urgent care clinic and convinced a doctor there to give me the script. 

Next I wanted to confirm I was right with a blood test. Of course, this too was a fight. The only test they wanted to do was the nasal swab, but that one is less reliable for a variety of reasons, not to mention more intrusive. After suffering through the procedure and getting the negative result, I then had to try to convince another doc at another time to do the blood work. Thankfully my dad managed to get that done. 

Lastly, I set out to get myself lots of Vitamin C. Amazon made that easy. I also acccumulated a lot of other medical tools such as the oximeter, a high-quality digital thermometer, and other stuff to keep accurate tabs on my condition.

Eventually the bloodwork came back positive for Pertussis. Vindication! I was right. Out of all the over-trained docs the only person who made the right call was me, and the good British doctor who backed me up. But that didn’t stop the bad docs from sending the bills. All told, I received $22,128.37 in hospital bills of which I had to pay $1,861.37 and my insurance had to pay $15,643.22. And nobody called to apologize or acknowledge their errors.

Slow Steady Recovery

Whooping Cough is known as the “100 Days Cough” because it can take a long time to recover. I found that once I started the vitamin C the cough stopped being really bad, and after a few weeks I was able to return to work. However, if I strained my voice my vocal chords would collapse and I had to stop talking. It took probably a year before that fully resolved.

Informing others

After all I’d been through I felt that ignorance was the biggest barrier here. Ignorant doctors mostly. But also my own ignorance of this common disease. So I put together this website to help people find out about the disease. And I called it “choking cough” because that’s what it feels like, and that is what you may be Googling for.

Let me know if it helps

Please leave a comment in the next section if you found this site useful. I like to stay anonymous because our health care system punishes anyone for a “prior condition” and none of us can afford to pay for these doctors out of pocket. However, I love to hear from those who may have been helped by this information.