Risky Business

Today’s trip to the hospital started off just as any other visit- My Mom and I circled the parking garage looking for a vacant handicapped parking spot. We ended up having to park on the roof of the garage due to all the handicapped spaces being occupied. After unloading the car and packing all of my medications and belongings into the bag underneath my wheelchair, we made our way to the hospital entrance. Outlaws were sneaking around with their lit cigarettes as they tried to avoid being caught by someone who would enforce the rules. Smoking is banned on hospital grounds but people do it anyway. Mom mumbled about the delinquents who were sucking on their cancer sticks and I held my breath until we were in the clear. It’s always tough for me to hold my tongue when I’m put in danger by individuals who blatantly ignore the law. My Mom’s comments made me laugh as we anxiously waited for the elevator doors to open. The smell of smoke was lingering in the elevator, but I at least felt safer than I did while people were actively smoking in front of the entrance. I tried to distract myself by taking silly Snapchat selfies as I declared to my friends that I was preparing for my anesthesia nap. I tried to get my Mom to smile for a few selfies as she pushed my wheelchair to the door, but she wasn’t in the mood. We were both nervously anticipating what the outcome of today’s events would become.

As Mom wheeled me into the business office to check in, my face lit up when I saw that a familiar face was sitting at the desk. “Look Brynn, it’s your friend!” Mr. Alex spotted us the second we came around the corner. It made me happy to see him. Alex always makes the tense environment less stressful with his light-hearted jokes and laid back demeanor. He’s checked me in for countless surgeries, procedures, and hospital admissions over the years that I’ve been a patient within this hospital system. He knows that I’m a Germaphobe and always takes a moment to wipe down/sanitize the stylus for the digital signature as well as the pen and clipboard when it’s time for me to sign and initial the HIPPA forms. No matter how dreadful I’m feeling, I know that I can always count on Alex to make me smile and laugh. Whenever you think of who you’ll encounter in a hospital setting, I think people often forget about those like Mr. Alex who work in the business office- He isn’t working as a doctor or nurse, but his role in my visits to the hospital has made an equally as important impact throughout my experiences here. A hospital bracelet is snapped onto my wrist and we make the trek to Interventional Radiology.

We sit down in the waiting room as we wait to be called back and prepped for anesthesia. “Bryan Duncan?!”, the nurse calls out. It always makes me chuckle when my name is mispronounced- just about everyone who works at this hospital knows me. We explained that my name was in fact “Brynn- Rhymes with Lynn” and she felt silly for pronouncing it incorrectly. I get that a lot, so it doesn’t bother me. Sometimes my friends will even call me Bryan to poke fun at those who can’t seem to ever say my name correctly. After making small talk with the nurse, we wheeled through the corridor and I was led to room/bay number 3. This is the same bay that I was in last time! I changed into my gown and the anxiety began to rise as we waited for the team of doctors to round before I was put under anesthesia.

I’ve been put under anesthesia so many times that at this point, I typically know what to expect. However, this time was different. I was having the same procedure done that I’ve endured countless times- My feeding tube needed to be resized and replaced and I was having a new central line placed. Every time I am put under anesthesia, my condition becomes worse with each time I am exposed to the drug. I’ve always known that Propofol was complicated for me, but as I’ve matured, I am becoming better about understanding how my circumstances affect my loved ones.  I never remember the worst of my body’s response to anesthesia- I like it that way. For my Mom, the 48 hours following my exposure to Propofol is pure hell. I’ll have days of violent seizures and terrible Dystonia until the drug finally begins to get out of my system. My body will violently contort to the point that I look like I’m possessed and undergoing an exorcism. My family has to helplessly watch me convulse and scream out in pain for days. After a lot of convincing, my family and close friends helped me make the decision to brave the use of a different anesthesia. I couldn’t be selfish anymore. I used to go into the situation in relatively peaceful state of mind as I knew that I wouldn’t remember the worst of it. I couldn’t continue to put my family through hell by refusing to try other options simply because I was afraid of a different drug being worse. It was finally decided that it was time to try something different… Different scares me.

The anesthesia team came into the bay to discuss our options. I was growing more and more nervous by the minute and at this point, I was just ready for them to go ahead and knock me out. I was scared of the risks that come along with this disease and anesthesia. Anesthesia can be deadly to those with my condition and that recognition was scary… But then I noticed that I was going about this all wrong. ANYTHING can be deadly to those who live with Mast Cell Disease. Every time that I make the decision to put something in my mouth, I run the risk of having a serious allergic reaction. Every time I take in a breath, I could potentially inhale something that could send me into anaphylaxis- That doesn’t mean that it will happen, though. I was letting the idea of the reality that a different drug could be worse keep me from trying something that could be potentially better. I had to try something else, so that’s exactly what we did.

The nurse anesthetist cleaned my line (I have a mediport which was surgically placed under the skin on my chest) and began to push the Versed into my bloodstream to help me relax. I was relieved when she told me that she would be the person by my side throughout the entire feeding tube and line placement.Once I was given enough meds to take the edge off, my nurse headed back to the procedure room to get everything ready.  Mom climbed onto the stretcher and sat next to me while we waited. We watched some of my favorite clips from The Ellen Show to ease myself out of the stress mess that I had become so that the loopy meds could begin to take effect. I can always count on Ellen to make me laugh before going under anesthesia for surgeries and other procedures- It’s become routine for my Mom to pull up Ellen videos on her iPad when I’m in dire need of distraction. After watching several funny videos and taking all the pre-anesthesia game face selfies my phone could hold, the nurse peeked her head around the curtain and said that they were ready for me!

The next thing I knew, I was waking up. Unfortunately though, I wasn’t supposed to be waking up as I was still on the table. Thanks to my complicated body having such a high tolerance to medications, I woke up in the middle of the line placement. I remember being scared and crying- the drug cocktail that I’d been given messes with your mind and everything feels much scarier and more intense than it actually is. I remember telling them that I was scared and hearing several voices telling me that I was doing a great job breathing through the fear I was feeling. They promised me that everything was okay and that they were going to get me comfortable- and they did. I was probably only awake for two minutes (if that) before they were able to get me sedated again. The next time I regained consciousness, I was in recovery.

As usual, I was having so many seizures and Dystonic episodes that they had to sedate me again just to get ahold of the convulsing. Anesthesia always seems to do this to me. I’ll spend hours violently shaking and thrashing until they can gain control by sedating me again. The nurses who work in outpatient recovery are always kept busy when I’m in- They always have to call the anesthesia team back into the unit to help them knock me back out. I was sedated for a few more hours and when they began to wake me up, I was excited to see that one of my favorite nurses had come down to help me. It usually takes 3-4 nurses (in addition to my mother) to load me into the car once I’m stable enough to leave. I have a hard time maintaining consciousness so they’ll take me to the car on a stretcher and they all work together to get me safely transferred into our SUV. The nurses play a vital role in helping me after anesthesia- both physically and mentally. As soon as I was buckled into the car, we said our goodbyes to the amazing team of nurses and we were on our way! I was happy to pull into the driveway and be greeted by my two dogs and younger brother, who helped me out of the car and into the house. This was the best he’d ever seen me look after anesthesia, despite still not being in tip top shape. I’m glad that we seem to finally have a better anesthesia option, especially because I end up having to be put under every two or three months.

I had a fantastic team on my side and I can’t be any more thankful for the care that was given to me. My team was so reassuring and I felt safe being in their hands. Despite waking up in the middle of the line placement, I felt that overall everything went relatively well. The team of physicians makes all the difference- it’s easy to tell apart who does this job for the money versus the ones who genuinely want to be there. When you find your life in shambles and end up with a medical mess like myself, you encounter many types of individuals in the medical field. I’ve seen so many doctors and sometimes you begin to question if you’re seen as a person or a case number. My team of physicians went out of their way to make me feel like my thoughts and opinions were valid and made sure that I was heard. They were there to help us through the problem-solving regarding finding the safest options for me to try and they were there to reassure me when I was scared. It’s the teams like this one that make this nightmare a little less scary.

I’ve taken away a lot from this recent trip to the hospital and I only wish that I had tried something different sooner. I’ve always said that I thought it was absurd for someone to let the fear of something bad happening prevent them from doing anything at all, and here I was doing exactly that. I’m thankful for my amazing friends and family who helped me through the decision process and coaxed me into trying something that I’d never tried before. Yes, I woke up in the middle of the procedure… but now we just know what to look for and hopefully prevent in the future. Thanks to taking a risk, I had a better outcome. You’ll win some and lose some- this time I’m just happy to say that I’ve won.

 

 

 

 

2 thoughts on “Risky Business

  1. I’d be willing to bet your fear threshold is far above that of most people – so be kind to yourself. Kudos for being brave and thoughtful enough to try something new for the sake of your loved ones…life has given you quite a maze to navigate, but you do it with remarkable grace.

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