Hello All and welcome to the lives of those of us with Duchenne Muscular Dystrophy or DMD for short. We call ourselves DMD Pioneers because we have long surpassed the projected "prognosis," of this relentless disease I reffer to as the monster within. Anyway, thank you for joining us as we give our first hand look at the lives of these Pioneers. For this particular blog, you will be seeing things from my perspective on life as a Sufferer and Survivor of DMD. Shall we get started?
My name is Michael Keen and I am 33 going on 34 this May; as I said earlier I have DMD. I was supposed to be dead by now, but through my determination, I have deafeated the typical prognosis; that is refusing to accept that this monster would eventually kill me. As a result of Respiratory Failure in 2005, I became Ventilator Dependend meaning I could no longer breath on my own without being hooked to a machine 24/7 365 days a year. I am what you call a duel diagnosis because I suffer from anther condition, Congestive Heart Failure (CHF) as a result of my weakened heart this monster caused, I was diagnosed following an Echocardiogram which is very much an ultrasound of a heart. A normal heart has an Ejection Fraction , the unit of measure they use for determining how well the heart is pumping blood throughout my body, of 60-66; my Ejection Fraction (EF) is at a dangerous 17 percent with a mortality rate of about 70 percent; pretty scary stuff huh? As a result of this high mortality rate, I have to get a device called an Internal Cardiac Defibulator (ICD).
Oh come on, had enough medical jargon already? Hold on folks just a few more terms; really really.
The ICD will shock my heart rhythm back to saftey should I go into Ventricular Tachycardia or V fib which would cause instant death for me yikes! The Sergury is a relatively easy in the grand sceme of things, however having DMD complicates things a bit. The procedure itself will take a good 2 hours provided there are no complications. I cannot tolerate Anesthesia because of yet another condition, Malignant Hyperthermia (MH) which is a condition that my body temperature will go extremely high to like 108 degrees. So to avoid the risk, I will be under conscientious sedation during the surgery; I will actually be awake during the entire sergury; boy I sure hope I don't feel a lot of pain. Afteter the surgery, it's a guaranteed stay overnight in ICU for precautionary reasons; all this takes place April 30th.
One more thing I failed to mention. Although I have DMD, I live independently with my wife in Waynesboro VA; I have a program called Technology Waiver with VA Medicaid that gives me 84 hours a week healthcare through nursing; thats 16 hours a day which is not bad. I stay fairly busy and take my job as a pastor very seriousely. I'm a fun loving guy undernerneath all the humaness and look foward to sharing my life with you. Respectfully, Michael.
Comments
All of the stuff you say about the internal cardiac defibrillator does sound scary, but also interesting. The technology available to us now is fascinating, and I think it's great that you can share what you know about it from personal experience.
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