Page 12 - 2020 Summer CMTA Report

COPING WITH C VID-19

hypotension or low blood pressure
and cardiac arrest.
Intubation and mechanical ventilation Difficulty with a particular
airway may result in multiple intu-
have been in the news constantly lately. Are CMT
bation attempts, which can cause
patients at increased risk from these procedures? edema of the airway, making it
more difficult to intubate the
patient.
Dr. Ashraf Elsayegh answers: respiratory systems (particularly There is also the risk of injur-
respiratory muscle weakness), ing the trachea while trying to
The average CMT patient is at no may be at higher risk. These insert the endotracheal tube
greater risk from intubation and patients are more difficult to (breathing tube). Finally, post
mechanical ventilation than any wean from the ventilator, making intubation, increased pressure in
other patient. The former refers to removal of the endotracheal tube the chest cavity can result in fur-
placing a tube in the throat into more difficult. That sometimes ther hypotension. Although most
the trachea to help move air in places them at an increased of these risks are rare, they can
and out of the lungs while the lat- risk of ventilator-associated occur.
Dr. Elsayegh, FCCP,
is a pulmonologist at ter refers to the use of a machine pneumonia. The main risks of mechanical
Cedars-Sinai Med- to move air in and out of the The risks of intubation—for ventilation include development of
ical Center and a lungs. These are life-saving mea- any patient, whether otherwise pneumonia (known as ventilator-
member of the sures and, if needed, can easily be healthy or chronically ill—include associated pneumonia), a small
CMTA Advisory done, usually with minimal side the side effects of the medications risk of a collapsed lung, mucous
Board.
effects. Just having a diagnosis of given to sedate and relax the plugging and difficulty removing
CMT does not change that fact. patient enough to be able to intu- the endotracheal tube. Again,
CMT patients who have sig- bate them, including allergic these risks are not common, but
nificant problems with their reaction to the medications, they are possible. h

CALLING ALL DREAMERS!

The CMTA Youth Council is calling all youth with CMT (up to 21 years old)

to share their thoughts on having CMT for a “Book of Dreams.”
Participants are guided through a series of questions, at first just basic information like age at diagnosis
and type, then moving on to deeper, more insightful questions designed to elicit thoughtful and useful
responses. For example, the survey asks “What is one piece of advice that you have for someone with
CMT?” and what are the best and worst parts of living with the disease?
Participants are urged to be creative in
answering questions like “If you were to write
a story about your life with CMT, what would
the title of the story be?”
Anyone interested in participating can go
to bit.ly/CMTABookofDreams. As the Youth
Council announcement says: “Don’t miss this
chance to be one of the authors in a book
that will be a permanent symbol of the youth
perspective on CMT!”
Youth Council members on the Book of Dreams Committee:
Riley Williams, Evan Zeltsar and Julia Beron

12 THE CMTA REPORT SUMMER 2020