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DrRussMD, Board Certified Physician
Category: Medical
Satisfied Customers: 64680
Experience:  Internal Medicine--practice all of internal medicine, all ages, family, health, prevention, complementary medicine, etc.
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Bob, What are clinical signs of end-stage Duchenne's? My

Customer Question

Hi Dr. Bob, What are clinical signs of end-stage Duchenne's? My step-son has DMD and his heart rate was 127 bpm and pCO2 was 52 before we started using passive nocturnal ventilation and cough assist. Could the ventilation significantly increase his mortality? He lost 25 pounds in six months and now only weighs 75 lbs. I read that weigtloss is a symptom of hypoventilation in neuromuscular disease. He has severe contractures and scoliosis. He still eats regular food by mouth swallowing slowly but seemingly easily. I'm worried the ventilation was started too late to make a difference in mortality. Thanks.
Submitted: 2 years ago.
Category: Medical
Customer: replied 2 years ago.
He has never had physical therapy. Nor did he receive steroid treatment. He just began taking lisinopril. He has been diagnosed with CHF.
Expert:  DrRussMD replied 2 years ago.
Sorry about your step son.
The ventilation does not increase his mortality.
It gives him more time, assuming that he can not breath on his own.
So, it extends the life span in this case.
With a progressive disease, ventilation does not reverse the course.
Only extends the time.
please click a positive rating [hopefully excellent]. If you forgot something, come back. I am here daily.
Customer: replied 2 years ago.
Thanks for the correction about mortality...I meant decrease his mortality. I guess what I'm really wanting to know is how will I know when or if he is coming close to his end. What sort of clinical signs or respiratory or cardiac values indicate near death? When is does care switch from "life" care to palliative care? Will it be obvious?
Expert:  DrRussMD replied 2 years ago.
I understand.
First of all, his doctors should be able to make that assessment now.
If he can not breath on his own, and if he is losing weight, and if those processes can not be reversed, in general, he would currently qualify for palliative care.
The doctor generally must agree that this time line is going to complete itself, by best estimates, in 6 months.
If it is clearly a year or more, not hospice.
please click a positive rating [hopefully excellent]. If you forgot something, come back. I am here daily.