Posts Tagged ‘The Cure For What Ailed Me’

The Cure for What Ailed Me: Epilog

May 29, 2017


I empathize with you so much, little horse.

They wheeled me to the front door and then I was on my own. My family was there but nobody could really do anything for me anymore. Somehow, my body had forgotten how to walk properly. Everything was sore and my strength and coordination were still way off. It was embarrassing. I felt like a newborn foal. My bedroom at home was on the third floor and it was my sanctuary. Until I healed, stairs were too difficult and we worried that something would cause me to have to go back to the hospital. So, I slept on the couch for weeks as I got my sea legs back. My grandmother, Maw Maw, came up to keep me company.


My scar was exponential.

I am left with a fairly wicked scar. When it was fresh, it curved from between my shoulder blades down to my left side above my hip. It was pretty brutal-looking. However, my body grew and the scar did not so it is a lot smaller these days. It looks less like I wrestled with bears. That is an actual rumor that my wrestling coach joked about starting in seventh grade. Experiences like that made me self-conscious about the scar but also let me laugh about it. Body image is especially tough when you are young, even if you are a guy.


I have never had street cred.

Next to the moon-shaped scar is the scar from the place where they inserted the drainage tube for all my various fluids. It was gross to think about and even now I can feel my skin crawl. Sorry if I made the same happen to you. My family affectionately called that scar ‘the bullet wound scar’ because of how clean and precise it looked. Also, when the time came for them to remove the tube so that I could heal, it certainly felt like I had been shot. They grabbed and yanked the tube out of me and I felt a sudden, hollow pain. It was one of the worst pains I had felt at the time.

Slowly, I started to find my footing again. It did not take too long for me to start gobbling food down faster than I anyone else at the table. I was overcompensating for all of my past issues. I started to breathe clearer soon after that. The danger had passed.

Extra Stories and Fun Facts:


No No No No No No

Now some readers may remember my great fear of needless. When I went in for the MRI test to map my circulatory system in advance of the surgery, the nurse was very kind but very utilitarian with a brusque bedside manner. They were going to give me something to put me out for the MRI and they also had to inject the fluid that would make the MRI actually work. When I started to get nervous she told me ‘Don’t worry, it won’t hurt any more than a bee sting’. The problem for me was that not only was I afraid of needles, I was also terrified of bees. I was swarmed by a whole nest when I was younger. My mom leveled a hard look at this nurse and informed her that she was not really helping.


What do I have in common with him? Not much, thankfully.

They told me a lot of interesting things to try to calm me down in the days before the surgery. One of the more interesting things was my surgeon’s past history. They told me that my surgeon had been one of the surgeons who operated on Ronald Reagan after he was shot over a year before I was born. Of course, this impressed me when I was a kid. Now, I am just glad that he was successful with me. Regardless, he was a world-renown expert on the surgery and I was lucky that he worked at a hospital less than half an hour away from home.


I owe a lot to the most powerful institution in Baltimore past, present, and future.

Now, medical science is much more advanced than it was over twenty years ago. Doctors are able to detect Cystic Fibrosis much earlier. They are also able to detect Double Aortic Arch through many different tests (some of which I eventually got). Often, the problem is detected in the womb or shortly after birth and is corrected through surgery before the damage is done. In fact, most babies born with Double Aortic Arch usually turn blue from oxygen deprivation not long after birth. I went through what I had to go through and nobody really screwed up. It is one of the reasons that I support science-based medicine so much. It saved my life.

The Cure For What Ailed Me Pt. 3

May 22, 2017

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.


Wow, that was dark. Let me remind you that this has a happy ending and I am not a ghost.

The doctors told my mom that not only did things look bad but with each passing day, they were getting worse. My body was slowly strangling me from the inside and there was no chance of it healing on its own. Medical intervention was absolutely necessary and that means that I had to go into surgery and soon. My mother, knowing that Halloween is my favorite holiday, asked if the surgery could wait. The doctors told her in no uncertain terms that the surgery could not wait. They told her why. One night, my parents sat me down at the dinner table that I had grown to dread. They told me what was wrong with me and they told me that I had to go into surgery.


I would be going as a sick kid for Halloween.

I sobbed and begged for it not to be true. I remember being on my mother’s lap, my heart seized with fear like never before or since. I cried and cried but tears do not change reality. They told me that if I did not have the surgery I would lose the ability to walk and then I would die. I had to be in surgery soon and I had to learn to accept that. I told my friends and my mother told the school and they were all behind me. I wish I could say that this made anything better. I remember going into the hospital for a consultation with the surgeon. He sat me down and drew simple little pictures and told me what he was going in to do. He was kind and although it did not make me any less scared, I know I appreciated at least knowing what was happening. Knowing is almost always better.


Nothing funny here. This was the inspiration for my character Lennon Clarke.

The day of the surgery came in almost no time at all. The night before, I was given the usual order to not eat or drink anything. This had to be enforced by my folks because I get cranky when I do not eat. As a concession to my young age, they allowed me to drink apple juice but only a little bit to keep my blood sugar up. They brought me into the hospital. Having been briefed on my fear of needles, they numbed my arms before they injected me. At some point, a troll doll from the school store was put into my hands and I clutched it tightly. As the drugs started to take effect, I cursed at whoever would listen and I told them that my parents were lawyers and they better take good care of me. They pumped enough drugs in me to put down a horse. I started singing the Animaniacs theme on loop and then I blacked out.


I was quickly getting zany to the max…

It was hours later when I awoke in the Intensive Care Unit. I was still alive. Not only that, but I was told that the operation was successful. I was in pain but happy that the scariest event of my life was all over except for the healing. As a reward, I got to watch Disney’s Aladdin on heavy drugs. It remains one of my favorite films to this day. I do not remember much else from the ICU except for fading in and out of consciousness and the occasional sponge bath. They had deflated one of my lungs to get at my heart and there would be a lot of healing. Eventually, they decided that I was out of danger and moved me up to a room to recuperate. Once there, I became a more difficult patient.


I had my own fight going on so I felt for Link.

I happily ate applesauce and watched television. However, it took me a while to kind of learn how to go to the bathroom again. I insisted I could do it and I would struggle my way to the bathroom and then nada. I was stuck with a catheter for a while. As they decreased the drugs they gave me, I hurt more but hurting is part of healing. While in the hospital, I got the entire set of Aliens action figures including the Alien Queen. There was a hospital visit from Captain Planet and I got Wheeler’s fire ring and also Linka’s wind ring. When I got a little better, I would make the long and painful journey to the game room to play Legend of Zelda on the NES. I never had enough time to get anywhere in the game but controlling Link made me happy.

Stay tuned next week for part 4 which will probably be the epilog!

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!


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