Meet Mark and daughter, Kim, the Cystic Fibrosis girl who
started it all and has helped countless thousands of COPDers
from a life of medical ignorance.
First…Today I walked upright across the shallow end of the
pool. No walking sticks or the normal hunched over posture
and limp. I walked upright, my bone on bone left hip locked
in muscle tightening of my left bun.
Awed and surprised, I walked back and forth three or four
times.
Saturday, 5 February 2011 I walked upright through the water
without walking sticks or a walker or floating. It was the
first time in two or three years.
Today was my third session with Marilyn, a real swimming coach
and I didn’t intend to mention it until much later but I’m still
jazzed about walking the end of the pool.
Another time on what we’re doing and why – but what I do today
goes back to my online support and advocacy group, EFFORTS and Mark
Mangus, Sr.
Baby steps as Marilyn says … and reach beyond shortness of
breath to improve according to Mark. YES!
********************
A problem I developed that I discovered at a family Thanksgiving
some six or seven years ago was laughing hard gives me a splitting
headache at the base of my head and I have trouble breathing– this
from a person who rarely gets a headache.
I’ve never known why until I asked Mark recently.
Following is my question and his answer. Additionally I asked
him what made him stretch out so far beyond and disprove what
medical sources ignored about COPDers. We CAN get better!
************************
“….You also just opened the door to something that bothers me
whenever I laugh hard… the back of my head -occipital bone, I
think- feels like its going to split wide open with the pain of a
massive headache…something I rarely, ever, get. It is only in
that spot and only when I laugh hard.
Why?
What can I do about it? Sometimes something tickles my
funny bone so hard,
I can’t stop without great effort though pain is a great
incentive to stop.
I used to laugh a lot, all the time…now I don’t want to.
What do you think?
COPD isn’t for sissies!”
*************************
“On 1/3/2011 8:59 PM, Mark Mangus wrote:
I would surmise that you are experiencing increased intracranial
pressure
when you laugh and that it is backing up the blood in your brain.
It could
be from a few different causes, not the least likely of which could
be
attributable to increased right-heart pressures which would be
transmitted
‘retrograde’ (backwards) through your jugular veins and to your
brain,.
That slows drainage of blood from your head which is trying to make
it back
to your heart and then your lungs. If you have increased
pulmonary artery
pressure from long-standing hypoxia, that could easily cause such
a
phenomenon.
In any case, it is most likely increased vascular pressure in
your brain,
whatever the precipitating cause might be. Unfortunately, for
you, laughing
seems NOT to be a ‘laughing matter’, in view of the unpleasant
side-effects you suffer. Worse yet, there is likely nothing
you can do about it, unless
you find oxygen use to be helpful in reducing or relieving the
problem. It
is a tough problem, no doubt. I’m sorry you experience it!
Laughing ‘can’
be so therapeutic under better circumstances!”
Mark W Mangus, Sr. BSRC, RRT, RPFT, FAARC
San Antonio, TX
mmangus52@gmail.com
*****************
This post is about an RRT extraordinary, Mark W. Mangus, Sr.,
BSRC, RRT, RPFT, FAARC individual. It was reading his posts
in my online COPD support and advocacy group that helped me
understand that we could help ourselves through exercise – going
beyond what any doctor would prescribe for a COPDer.
His championship of patients going beyond – way beyond what they
think they can do and the support of EFFORTS’ites are
probably a key reason I’m still going today – start and stop though
it’s been over these years of piling on medical conditions – since
I was hospitalized at Harrison in 1997.
COPDers aren’t helpless – even though we’ve now progressed to
the third leading cause of death in the United States and fifth
leading cause of death in the world.
Meet an extraordinary dad, Mark and the girl who started it all,
daughter, Kim.
*****************
“You asked me to speak to how and why I’ve become such an
advocate for patient education – there are several reasons and
influences.
First, when I became an RT, instead of pursuing medical school
and an MD, I decided that my life’s quest would be to become the
best RT I could and hopefully, with hard work and a bit of luck,
along the way, to ultimately be considered one of the top RT’s of
my era. Now that’s pretty ambitious and can be construed as a
bit cocky. But, as with most all who enter the health care
profession, I believe we all have a desire and even a calling to
‘help our fellow man’ and to try to be the best we can be. At
least, we start out that way, for the most part In our
particular positions, we choose to do that through delivery of
health care and to foster better health.
Dr. Thomas L Petty is one of my great heroes and a source of
greatest inspiration. As a pioneer in so many aspects of
pulmonary medicine, he was not afraid to take on daunting projects
and challenges, many of which resulted in our ground-level
information on some of the most important lessons we’ve learned
about pulmonary physiology and disease to date. I also
decided that to become the best RT I could envision, I had to go
beyond the simple boundaries of standard RT education. So I
have studied extensively to include medical knowledge beyond the
boundaries of RT. As a corpsman in the USAF, I was exposed to
many non-respiratory aspects of disease and its treatment.
Being assigned to Wilford Hall Medical Center, the Air force’s
premier institution in the world, at the time, I also was given
opportunities for training and experience that I would not have
been afforded anywhere else.
So, I have to say I’ve been fortunate to have been in the right
place at the right time many times in my career, with regard to
training opportunities and those who have taught and mentored me
along the way. I have had the opportunity to learn much that
other RT’s never get a chance to experience. Having
participated in what was the pilot program for physician’s
assistants while I was in the Air Force, I was given training and
opportunities that are simply not a part of RT training. That
has given me an edge that others have not had opportunity
for. I was one of a group who were present and part of
studies in what was at the time, cutting edge respiratory research
and received unique training and experience during that period,
again, not available to RT’s then or in the same scope for years
after those early days. That training and experience
instilled in me the realization that I had been given a special
gift; one which I was compelled to build upon and utilize to the
best benefit of people I could.
With the birth of my daughter and the discovery of her
affliction with Cystic Fibrosis, I both realized the extent of the
blessing of knowledge I had gained, in being the one who, while
others were pooh-poohing my suspicions, indeed diagnosed her as
having the disease. That came through having had the good
fortune to work with the disease for two years before she was born
and to work to learn more and understand the disease sufficient to
recognize and suspect it before any obvious signs had
manifested. This was actually a bittersweet realization of
the knowledge I possessed at the time, as it included both the
angst and horror of learning of her problem and the gratitude for
knowing enough to discern it before she suffered any serious
effects of the disease. Treatment was started quickly and my
wife and I set out on what has become a 29-year journey to give her
the best care and advantage in life possible. That has, as
you know, included two double lung transplants in addition to the
many events over the years preceding her first transplant.
When I was asked to take on the task of formulating the first
comprehensive pulmonary rehabilitation program, I felt like a fish
out of water. To that point, my understanding of COPD was
very mainstream; ‘you simply can’t do anything with folks whose
lung function has gone south as it does when COPD advances’.
Yet, I chose to look at it with an open mind in an effort to try to
learn “why” their plight was so ‘dead-end’ and hopeless and to
‘maybe’ find a way to make the inevitable easier for them and even
help them to find a better way to live within those conditions they
could not change. Today, I am ecstatic to acknowledge how
wrong I was back then, along with the majority of others in
medicine, having been taught some of the greatest lessons of my
career during these past 25 years of study and work in pulmonary
rehabilitation and ‘disease management of lung diseases’.
The more I dug into COPD, the more I learned that most
everything about the disease was “theoretical” knowledge that had
not been supported by evidence-based study. As I learned more
about what was empirically known, I increasingly saw the
incongruities and contradictions in the real world to what was
presumed gospel knowledge about lung disease. Then along came
lung transplantation and then LVRS and the advances in medications
and research into cause and effect. The undeniable truths and
tragic fallacies about COPD and other lung diseases became
glaringly apparent.
\Unfortunately, too many of those in health care, continued –
and still continue – to hold to false ideas about what can and
should be done about lung disease and how to improve life with
these diseases. So, I joined Dr. Tom and the many others who
‘crusade’ for a better lot in life with COPD. And, because
there is still such disparity and nilistic attitude toward COPD, in
particular, added to the fact that as with several other kinds of
chronic ailments, patient knowledge and ‘active’ participation in
their own care have demonstrated improved living, longevity and
reduced infirmity with chronic disease, I long ago decided that I
had to play a leading role in my capacity to educate patients and
bring them “into the loop” of their own care, even to the chagrin
of many health care professionals – yes; including “doctors”!
So, for the last 20 years, I have become increasingly involved
in the educational front on a widening scale to the international
stage. I join a host of others in our effort to do our part,
simply because it’s the ‘right thing to do’. It’s not for
fame or financial gain, though that is always nice, if it comes
with helping folks. Lord knows, I’ve not become a rich or
even modestly wealthy man in my endeavors. That’s OK with
me. I have what I need and can look back with satisfaction
knowing what I have contributed. And I can look ahead to what
still needs to be done. That’s my focus and my ongoing
quest.
Would I like to see ALL RT’s hold the same outlook and
attitude? SURE! But, I, too, have read Plato in my
studies of many years ago. And I understand that there is no
“Utopia” in the ‘real world’. Nevertheless, as I endeavored
to explain and encourage in the chapter I contributed to Dr Tom’s
last book: “Adventures of an Oxyphile2”; a chapter written for RT’s
and about RT’s, I hope I can help at least some of my colleagues
become better than they might otherwise have been, had they not
encountered me in some way.
Photo taken at Kim’s graduation party when she finished her BSRC
degree August 2010.
Thank you Mark and Kim!
More later… Sharon O’Hara
