The Cure For What Ailed Me, Part 2

When last we left off, I was talking about how I had been diagnosed with Cystic Fibrosis, a very serious condition that would have changed the course of my life. While people live with chronic conditions, it was not a diagnosis most people would wish on their enemies. Thankfully, the doctors were not quite sure about the diagnosis and continued to do tests. I am lucky that I was born in Baltimore City which has some of the best hospitals in the country (and perhaps the world). Foremost among them is Johns Hopkins Hospital which is often on the forefront of medical technology. It is a teaching hospital so there is a lot of information flying around the halls of the hospital at all times. So, they performed a battery of tests.


Just give me an A on these tests and get it over with!

I already spoke about one of those tests where they drew blood and then had me run laps and then they drew blood again. Once again, I think this was to test how much oxygen was getting into my blood stream even when I was breathing as hard as I could. I did exercises where I breathed into a tube as hard as I could to try to get a meter to move. It reminded me of the ping-pong tests from the film The Right Stuff so I was right up there with the Mercury 7. I had something called a “sweat test” done. In this test, an electrode is attached to your arm and another location. An electric current is used to activate a special chemical mixture to induce sweating on a site on your arm. I remember it hurting a lot. In fact, every test either hurt or was uncomfortable. I hated it.


“And then they attach the electrodes” usually is not a good sign.

It was frustrating having to do all these tests because I just wanted to be better. I not only wanted to get better but I wanted to give them what they were looking for. I wanted to complete a test that did not end with somebody shaking their head in confusion. I wanted my parents to not have to worry about me anymore. I do not remember actually complaining or any specific incident of depression but I do remember feeling bad about it. Of course, I did. How could a sick kid not feel bad about being sick? However, things were about to change. By chance, somebody at Johns Hopkins poked their head in while I was performing another inconclusive test. They said they might know what it was but it was a bit of a longshot. At this point, we all were ready for longshots especially if it was not as bad as Cystic Fibrosis.


The human body is probably the human body’s most dangerous enemy.

What he proposed was that I had what is called Double Aortic Arch. Now, this is a very rare condition and no doctor that treated me should have felt ashamed not to have come up with that possibility. People with Double Aortic Arch are born with two aortas. If you have studied any sort of human biology, you already know this is really weird. Normal humans are born with only one aorta. The aorta is the main artery that brings blood from your heart down to your abdomen. From there, it branches off to various points in your body. You really only need one. What can happen when there are two is that they can be accidentally connected down the line. This can cause a tangling with various parts of the human body which can cause damage and complications. It was important that we test for this quickly because it has the potential to be very nasty.


I would be basically swallowing dye. Sort of.

I went in for another test which I was not happy with. At this point, I was pretty pessimistic about any success in finally finding a cure for me. Still, I was a kid and I do what I am told. So it was that I went in for what is called a Barium Swallow Test also known as an esophagography. I had to miss school once again and go into a laboratory. Once I got there, they handed me a cup with a straw poking out of it. I was confused. I was told to drink up. What I drank tasted chalky but strangely I do not remember it being horrible. It was kind of like a bad milkshake and I like milkshakes. They then spent some time photographing my insides with special instruments. When we saw the doctor again, we found out something astonishing.

Hourglass

Basically what my esophagus and trachea looked like.

My esophagus and my trachea were in an hourglass shape. My body was trying to kill me by squeezing my two aortas around my eating and breathing tubes. The three most important tubes of my body were working together to end me. I was sent to get an MRI to confirm what exactly was going on. The MRI (Magnetic Resonance Imaging) was horrible. As stated, I hate needles and each MRI starts with one. Then you have to lay in a box while a loud machine thumps all around you. Thankfully, they gave me something that put me out and I got to bypass most of the experience. When I came out, they confirmed the diagnosis and it only got worse from there. Find out how it got worse (and better) in Part Three!

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3 Responses to “The Cure For What Ailed Me, Part 2”

  1. Kristin Rogersdotter Says:

    Jeebus. Need Part Three!

    Like

  2. The Cure For What Ailed Me Pt. 3 | Wolf of Words Says:

    […] When we last left off, I had finally received a confirmed diagnosis of Double Aortic Arch. To this day, doctors still do not know exactly what causes the condition but they think it may be genetic. Whatever caused it, I was born with a congenital heart defect. This was an amazing find because it is a very rare defect. It was also an amazing find because, like Cystic Fibrosis, it usually kills babies fairly quickly after birth. I was born with it but I survived over ten years without it being detected. I am so lucky that I did not die. I could have easily keeled over and they would have diagnosed me in an autopsy. The thought both makes me feel good and it also terrifies me. […]

    Like

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