An unexpected adventure

My 30 adventures for 30 years could have easily ended before it even started but luckily it didn't. On a Tuesday night I was sitting at the table sorting some Legos (which hopefully you'll find out why later in the year) when all of a sudden I felt dizzy so I tilted my wheelchair back and there went my heart beating extremely fast with chest pain all the way across my chest. So my mom who just came over to the table to help me with my Legos called 911 and barely after she got off the phone a fire truck arrived with an ambulance right behind. They asked some questions, one of them I recognized from the fill the boot and playing softball with my brother and another mentioned his brother has DMD.  They hooked a heart monitor up and saw that my heart rate was at 148 so they lifted me onto the stretcher.  While they were doing this I worried about them hurting my back, but this lift hurt my shoulders pretty good, so after a couple of profanities, out we went through the front door and into an ambulance.  The EMT told me to stay calm then yelled out to the driver that we're going urgent. And somewhere along the line my heart rate apparently got up to 246 and I don't know why that didn't just kill me right there, but I guess it wasn't my time. While lying there in the ambulance I started thinking about a lot of things like how I just recently posted on my blog about many people with Duchenne's not making it to 30 and knowing how most likely my heart or breathing problems will be the end. I started to wonder if I would make it to 30 or even another day. The EMT tried twice and couldn't get an IV in and said they would do that in the ER. Then all of a sudden she looked up and saw something and asked if I was feeling any better. I hadn't really been thinking about that, but I thought for a moment and I actually did feel quite a bit better.  My heart had slowed back down on its own.

Soon after we arrived at the ER and it was crazy and chaotic.  With nurses frantically getting everything hooked up, trying to get my shirt off and three of them trying to put an IV in, which they had trouble with.  They basically were racing to get one in first, but I ended up with two. After everything was hooked up they then x-rayed my chest.  Then a doctor talked to the EMT, then me and my parents about what happened and he seemed surprised that it stopped on its own.  After this a cardiologist came in and talked to us for a bit saying that what was going on was ventricular tachycardia. He said they would keep me at least overnight and an electrophysiologist would talk to me in the morning. After all of the craziness and they got an IV hooked up with some sort of drug to slow my heart down there was a bit of calm for a while.  

Then soon after I was off to the cardiac ICU.  When I got there multiple nurses and aides got me cleaned up and got a nice hospital gown for me.  After everything slowed down kind of I tried to sleep, but was rather uncomfortable and they had to keep waking me up to give me pills, shots and draw blood and whatnot. Now I was worrying about a lot of things again but eventually the morning came. Dr. Heath the electrophysiologist came in and talked to me and said they would probably put a defibrillator in. I told them to talk to my regular cardiologist at Children's Hospital that I've seen for more than 10 years. He also came back and talked to my parents. After this he left to call Dr. Miyamoto at Children's Hospital. When he came back he said she usually didn't recommend defibrillators for someone with Duchenne's but did it case-by-case. We agreed to keep on the pills and meet with Dr. Miyamoto within a week.

This was on a Wednesday and I was exhausted and had more tests to do like an echocardiogram and a bunch more people came in and out.  They gave me the pill version of the drug in the IV along with a bunch of other pills. Then after a while they took me off the IV version of the drug. I then napped quite a bit the rest of the day. Also I checked my phone and had a Facebook alert about a friend’s birthday which was a friend that had Duchenne’s and passed away a few years ago which made me sad.  They then kept me another night.  

In the morning Dr. Heath came in and said we should be able to get me out of here about midday and finally midday came.  The nurse took out my IVs although almost missed taking one of them out and the heart monitor stickers off my chest which didn't feel too good.   I was dressed and it's definitely nice to wear a shirt and pants.  Then the checkout nurse came in and told me all the things I need to do like things I can't do including walk for so many minutes a day and weigh myself daily so I guess she didn't know I was in a wheelchair and eat a low-sodium diet.   Anyways I signed the papers and was ready to leave, I got put back in my wheelchair and actually felt a bit dizzy. I think from being in bed for two days, but it still worried me. After a while I felt good enough to leave and we were out of the hospital thankfully because I was tired of eating hospital food and being stuck in the bed with a gown for so long.

When I got home I took a nap then tried to eat but couldn't eat too much, then went to bed. For a few days I was exhausted and cold and didn't feel like doing anything. At night I kept thinking about things like if it's going to happen again, how much longer I'll be around, why me, why do I have so many problems and about if I would see my friends and family again and especially if I would get to see my nephew grow up. Sometimes I would just cry for a while and I don't typically cry too often. But I would eventually fall asleep and wake up in the morning look around and realize I made it to another day. 

Six days later I had to get up quite early for my appointment with Dr. Miyamoto at Children's Hospital which I still go to because Duchenne's is a childhood disease so they gave me the choice of continuing with my same doctors or going to University of Colorado Hospital across the street.  I slept most of the more than an hour drive and when we got there I was quite worried that there would be some sort of bad news, but when Dr. Miyamoto came in she was very positive. She told us about the situation and gave me my treatment options with pros and cons for each one and she wanted to make sure she could help me keep my quality-of-life up.  My options were put a defibrillator in, take all my new pills and aspirin or go back to before without the new pills.  I decided to go the route of the new pills, but the drawback is the side effects which can be liver and thyroid problems, so it was more bloodwork and another test every year to monitor it. I also asked about salt and she said to not worry too much about it but I don’t want to eat ramen every day. She also encouraged me to keep doing what I enjoy doing and definitely go on our planned vacation and said that I was 29 with Duchenne's so I was doing quite well and I seemed to have a high quality of life. After this appointment I felt so much better about the situation, but was really tired and needed to rest and then get used to my new pills. Now about a month later I’m feeling a whole lot better.

This whole situation was hard to deal with but I know God has a plan for me, I don't exactly know what it is and I might never find out.   So all I can do is pray and trust that everything will be okay. And with that I'm ready to continue my 30 adventures for 30 years which now has even more meaning and I want to try to have as much fun as I can.