Posts Tagged ‘Cystic Fibrosis’

The Cure For What Ailed Me, Part 2

May 15, 2017

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!

The Cure for What Ailed Me Pt. 1

May 8, 2017

I have danced around this story for quite some time especially in April. I searched my archives to see if I have told this story and I could not find it. Of course, I do not have time to comb through over 500 posts to make myself completely sure. I am not going to stress about it. I want to tell this story right because it is such an important part of my life. So welcome to the tale of that time I got life-changing surgery.

I have always been a short guy. When I was a little kid, my pediatrician constantly talked about how I was at the lowest end of the growth chart. I was the shortest kid in my class and I was something approaching underweight. I was a happy boy but I was also kind of a frail boy. This is very disconcerting for a kid who grew up reading comics and watching Power Rangers. The power of friendship and kindness in your heart only got you so far. Eventually, I would have to punch something. More importantly, I was reminded at every turn that I was not as big or athletic as the other kids. I was the only male who sat on the floor for class pictures. I started to look up at my peers instead of looking over at them. I remember feeling really uptight about that. Every time people called me short, it was an insult instead of something I just could not change.


Screw you, Randy Newman.

Later, things got even worse than just being of a small and slight stature. At some point, I realized that I was always the last one at the dinner table every night. Let me explain. My family ate dinner together almost every night and we talked about our day and any other cool topics we could think of. We all ate and talked but, whether I was talking or not, everybody was done with their meal before me. I ate so slowly. Eventually, my folks had to release my brothers from the dinner table because everybody had things to do before bed. I would still be eating. I would focus on eating to try to beat everybody else to no avail. I could not point to anything specifically but I just could not manage to eat fast enough for the family to all finish together. Before you ask, it was also not because I am a picky eater. I ate pretty much everything happily.


Eating by myself. Alone. Independently.

It got worse. I noticed that I was getting winded a lot easier at recess. This is horrible news for kids because they are supposed to have nearly boundless energy until they pass out like their batteries suddenly lost charge. I was not the most athletic kid (and probably the worst Little Leaguer ever) but I did like to run around with my friends pretending to be a superhero. I have fond memories of pretending to be on the X-Men Blue Team while not using a basketball court as it was originally intended. However, I was breathing hard more and more. I was having difficulty catching my breath and even talking could be a chore sometimes. This is when doctors really started to get involved. They really do not appreciate when kids stop breathing correctly.


I usually wanted to be Cyclops. Less running.

For the longest time, they thought I had asthma. I had never really shown signs of it early in life but suddenly at age ten, they thought I had somehow developed it. That may be possible but (Spoiler Alert) that was not the case. When I went off to sleepaway summer camp (for dyslexics, another great story), I had to bring my inhaler with me. After breakfast and after dinner I had to get in line in front of a table with the other weaker members of the pack. When it was my turn, I had to breathe in chemicals that stung my throat and lungs from a little plastic bag. It is probably a hundred percent the reason I never tried marijuana. It felt like crap and it never helped but everybody, including me, felt more confident about my condition while doing it. Eventually, they realized it was not asthma. At that point, they thought it might be Cistic Fibrosis.


This was my anti-drug…. nevermind.

Yes, Cystic Fibrosis, that disease that the March of Dimes was always raising money for everywhere I looked at that age. Of course, my parents did not tell me this tidbit. Cystic Fibrosis sounds really scary and the medical description sounds even worse. The disease causes a build up of mucus in the lungs that blocks airways and makes it difficult or sometimes impossible to breathe. It also causes a mucus build up in the digestive system which makes that process hard to do as well. It seemed like a likely contender for what was wrong with me. I had problems in both those areas and everybody was probably pretty proud of themselves for coming up with that answer. Of course, nobody was happy about the diagnosis because it meant a lifetime of health complications and being stalked by death for at least the rest of my childhood. But was it the answer? We will find out next time in part two.


Support your local March of Dimes.


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