I am 40 years old with Duchenne muscular dystrophy. Considering that many guys with my disease do not survive past their twenties, I really can’t complain. Now beginning my fourth decade, somewhere I never imagined to reach, I find myself in rarely chartered territory. But I will adapt, as always.
At 40 with Duchenne muscular dystrophy, it is now crunch time, and I know I will have some big decisions to make in the coming years. I was faced with one recently. My disease has done significant damage to my heart. The old ticker is not pumping strongly, and my cardiologist has concerns that it can go into a dangerous rhythm, or stop beating at any time. He suggested that I have surgery to implant a device into my chest that could ultimately save my life. The device, known as a defibrillator, would attach to my heart and zap it with an electrical charge if it detects a dangerously erratic pulse or stoppage. The device would thrust a high electrical voltage into my heart to either restore my pulse to a more stable rhythm or completely jumpstart the heart bringing me back to life.
In theory, having the defibrillator would be of significant benefit to me. However the surgery and/or recovery period could kill me because my current health condition deems me a high risk. So my choices boiled down to risking my neck by facing potentially deadly complications during and/or following surgery, or not tampering with my body and maintaining a status quo. My decision was rather simple: do not rock the boat, forget surgery, forget the internal defibrillator, and take my chances.
I leave you with this question. Is it worth risking your life to possibly preserve your life? The answer is a tough one, very subjective. For me, at this stage of my life, the answer is no.
8 comments:
wow, That is a big question. I don't know what I would do. I too am on a vent. I wish you the best in whatever decision you make.
annette
computerwheelie
Is there a chance that the internal defibrillator could make your bowels more efficient? That would be my deciding factor.
hmm DMD and 40 years old? you look real good on those pictures. I am a care taker of a 23 year old since he was 14 already in a wheelchair then. at14 he weighted 132 lb now he is down to a dangerous 87 lbs. and he can't barely operate his WC. He has no meat on his behind and he is developing a sore sot were his steel rod is attached to hie sternum. I spend mu nights sleepin on the floor in his room getting up every 30 minutes to turn him in his bed. when he was 18 we decide on a DNR order if his heart or anything else would be at a level of no return without a drastic measure
Dear Scott,
Most of us will, at some point in our lives, have to make a similar decision. even with all your support from family,friends and the professional. (They all have their own addenda..love being one of them.) We were given the task of making this decision for our mother. She could have had kimo but it would have taken away her lst few months of a quite normal life with the end result being the same.Be brave and do exactly what you want...Remember we all have a mission in life and I can see from this blog, you have much more to give others...God's blessings and prayers are with you!
P.S. You look great!!!
Scott, You've made a courages decision. Keep the faith, because God, and a lot of people who know you, sure do believe in you.
Keep fighting the good fight!
Hi Scott,
So glad to be able to read your blog. Not sure how these things work. I have/had two sons with DMD. We lost Josef at age 22 to DMD this summer, July 10. His heart's ejection fraction had been 19% for the past 5-6 years. It went into atrial fibrillation for 5 days, came out for 2, went back in for about a day and a half and then just stopped pumping. Dr. said the defibrillator, in his case, would not have helped. Would welcome comments on the Dr's opinion. His older brother (29) is still with us, buthis heart's ejection fraction is at about 25%. Was up to about 35% just a few years ago--much stronger than his little brother.
Glad to see the AED. I think that is what Jacob may opt for, for some of the same reasons--fear of the surgery and what might go wrong. He's a doctoral student and hopes to have a PhD. before he dies.
See a web page of Josef's below.
Andrea
Hi Scott,
So glad to be able to read your blog. Not sure how these things work. I have/had two sons with DMD. We lost Josef at age 22 to DMD this summer, July 10. His heart's ejection fraction had been 19% for the past 5-6 years. It went into atrial fibrillation for 5 days, came out for 2, went back in for about a day and a half and then just stopped pumping. Dr. said the defibrillator, in his case, would not have helped. Would welcome comments on the Dr's opinion. His older brother (29) is still with us, buthis heart's ejection fraction is at about 25%. Was up to about 35% just a few years ago--much stronger than his little brother.
Glad to see the AED. I think that is what Jacob may opt for, for some of the same reasons--fear of the surgery and what might go wrong. He's a doctoral student and hopes to have a PhD. before he dies.
See a web page of Josef's at www.ecnrc.org/josef
Josef was a vocal performance major as well as an economics major.
Andrea
Sorry, Scott. It said I could edit the comment, and now I see it printed it twice. Oh well. If anyone knows how to delete a comment, let me know.
Andrea
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