Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Saturday, August 01, 2009

A Real Shocker!



"He said...he said it wasn't such a good day to die."

Kevin Bacon in "Flatliners" (1990)



Early last Saturday morning, I thought there was a distinct possibility that I would be blogging no more. In fact, as they say, I thought I had "bought the farm". You see, after spending Friday afternoon trying to control what I thought was a simple case of dehydration causing my heart to beat irregularly, the defibrillator in my chest decided to take action.

As I lay in bed late Friday night contemplating whether I should seek medical attention, I heard what sounded like a light bulb popping and saw a blue streak in front of my eyes. It took me a second to realize that "Oh my god, it went off!" I told my nurse to wake my parents up, and as he was exiting my room, the device shocked me again. It felt like being punched in the chest.

911 was called and within 5 minutes (although it seemed like an eternity), EMS arrived to transport me to the emergency room. Though I was really anxious of having my contracted legs injured while being transferred from my bed to the stretcher, the EMS personnel and my nurse were extremely careful. Throughout the 15-minute ride to the hospital, the defibrillator shocked me at least a dozen times. I was wondering why the device wasn't able to regulate my heart and was continuing to fire at will. I looked up at the white lights in the ambulance roof, hoping that wouldn't be the last thing I ever saw.

Upon arrival at the hospital, the first goal was to insert an IV so that medications could be given to me to bring my heart rate under control. Easier said than done with my hard-to-find veins. Meanwhile, my defibrillator was shocking me seemingly every few seconds. Just before a shock was delivered, I would feel a weird crawling sensation near my heart, which I figured was the device charging up to fire again, and the heart monitor above me would show a rate as high as 200 beats per minute. The only thing that seemed to help prevent a shock was when the nurse massaged my carotid artery.

Once an IV was finally inserted, doctors began a drip of a medication called amiodarone, an anti-arrhythmic, which began to regulate my heart. The shocks grew less and less until finally stopping. At this point, I was transferred to the ICU, where I began a weekend-long stay for observation. Later that morning, a technician from the manufacturer of my defibrillator arrived. He interrogated my defibrillator and determined that the device had been shocking me for atrial fibrillation, a serious condition typically treated by medication alone, but not nearly as life-threatening as ventricular tachycardia or ventricular fibrillation. Although devices such as mine are smart, once the heart rate reaches a certain speed, it is unable to distinguish between atrial fibrillation and ventricular tachycardia, and therefore delivers a shock. The technician adjusted the parameters of my device so that it will attempt to better distinguish between the two kinds of rhythms. A cardiologist at the hospital visited with me and my mother and explained the situation to us. They would start me on an oral version of amiodarone, see how I tolerated it, and if there were no problems I would be discharged within a day or so.

Staying in the hospital, of course, is no easy task when you have Duchenne's. To their credit, the nurses, nursing students, and respiratory therapists were extremely caring and kind. Even still, things like turning me are not the everyday situation for nurses who have never cared for someone with DMD. Although I ended up with a few aches and pains, there wasn't a whole lot that anyone could have done to prevent this. I wasn't completely comfortable with the hospital ventilator the respiratory therapists switched me to -- it was also overly sensitive and would alarm constantly -- but I made the best of the situation. Without my own air mattress I was unable to get extremely comfortable in bed, although the bed in which I lay was actually pretty state-of-the-art. Because I had no way of using a nurse's call bell (or a call bell into which I could blow), my mother spent the weekend with me, sleeping in a chair at my bedside at night. It was a good idea that she stayed with me to make sure that my complicated list of medicines was followed, and also to assist with transfers and positioning. I couldn't have gotten through this ordeal without her, as well as the other family members and friends who gave me their support at such a trying time.

By Sunday night, the anti-anxiety medication I had been taking round the clock had sufficiently constipated me. And really, no stay at the hospital would be complete without a delicious milk-and-molasses enema! Very effective, I'll tell you, but I could find a better way to spend a Sunday night.

Early Monday morning, I got the news that I was to be discharged within a few hours. After a sleepless night, I couldn't wait to get home in my own bed and sleep away my nightmarish weekend. The good news is that the medicine seems to be working and I am still here. The anxiety remains and it may take a while until I am not afraid. My life may never be the same, but like the quote above, "it wasn't such a good day to die." So I guess I'll stick around for a while!

Special thanks to Julie for helping me type out such a long entry!

10 comments:

Sue said...

Josh!
It really was a horrible thing that you went through. I can't even imagine what all that shocking felt like. You're too brave for words and the fact that you've managed to wrest even a bit of a humor from the situation is amazing.

We love you lots and could you please try not to do that again!

Kathie said...

That is so scary, Josh! I'm so sorry that you had to go though it all! I hope things are continuing to calm down for you and you were able to enjoy your weekend with your friends. I hope you NEVER have to experience such an episode again!

I wish you all the best!

Liz said...

Ditto to Sue's comments. Glad you're doing better now!!

Lene Andersen said...

Crap, that sounds scary (understatement of the decade, I expect). Glad you got through it OK.

Anonymous said...

Josh, thank you for still being here! I believe there is much to be accomplished by you, so now is certainly NOT the time for you to leave this world! No doubt you were frightened, unknowing of what might happen, but here you are! Stay well and I love you!

Paula xo

Terri said...

No one that I have ever met has the stregth and dedication as you. I believe in the power of you..... Josh!

Scott Sands said...

Josh, I have the perfect resolution to this problem. Screw the new medication - just have the defibrillator yanked out of your chest. That way, it will stop zapping you. There, problem solved! Ain't I a genius? LOL

P. Hilferty said...

Yo Josh,
I'm glad you're doing better. I hope that the new medication works well. Keep up the great blog.

Unknown said...

Hey josh,
thanks for your blog...I sometimes feel so out of touch... You are the most inspired person I know...Keep shining. all the best. cousin karen

Anonymous said...

Hey Josh, I'm sitting in the airport catching up on your blog after speaking last night. You are amazing! I am so horrified by what you went with and then also amazed how you write about it! It is written so well- I feel you emotion surrounding the event and feel your pain! You work wonders with your words! And you insert of humor always leaves me with a smile! I am so glad your still part of my life! Please keep writing because your blogs and books are things that I am so glad you can share with us and I look forward to them! Okay.. Gotta board! Xoxo -Broadway