COPD and Other Stuff

This is a patient-to-patient blog to exchange information and resources...from COPD to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between.
Subscribe to RSS
Back to COPD and Other Stuff

Posts Tagged ‘RRT’

Mark Mangus Tells the COPDer How to Live – EXERCISE

Sunday, July 10th, 2011

Pulmonologists and COPDers – take note – patients really do WANT to be educated and too many physicians are shy about encouraging patients to exercise and WHY WE MUST EXERCISE to have a life.

Following is the noted exercise guru for the COPDer, Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC of San Antonio, TX answer to a patients question about her FEV-1 and FVC decline.  Mark’s answer was posted on my online support group, EFFORTS.  www.emphysema.net.

A gentle reminder that Mark had to move beyond traditional COPD treatment because his daughter, Kim, born with Cystic Fibrosis was not helped by traditional medicine methods for lung patients.  Kim’s only hope was to stay alive until she was old enough for a lung transplant.  She has had double lung transplants now and currently works for Vanderbilt Medical Center.

Hi _ _ _,

First, let me say that there is nothing you can do to stop the decline you

are experiencing in your FVC and FEV-1, though you CAN slow the inevitable

progression to some (unknown) degree by exercising increasingly VIGOROUSLY

as you embark on your pulmonary rehabilitation effort.

**********

Your stress testing and echo tell a story of long developing pulmonary

hypertension which has advanced with poor intervention with regard to timely

detection of hypoxemia and earlier oxygen therapy support.  Your breast

cancer bout and treatment are potentially responsible for part of what you

are currently experiencing.  Radiation treatment is notorious for triggering

a process of radiation fibrosis, though it usually happens more profoundly

in treatment of lung cancer than more superficial cancers like breast

cancer.  But, if lymph nodes under your arm were irradiated – in other words

- the radiation was applied broadly over an area larger than simply the

breast tissue, chances are that you are seeing some effect from that.  A

high-resolution CT of your lungs, maybe with enhancement, if deemed helpful,

might better illuminate the presence of fibrosis and its extent and progression.

 

Your FVC has dropped disproportionately with your FEV-1, the FVC dropping by

almost double that of the FEV-1 during the same period.  This is also

suggestive of the possibility of fibrosis.  As well, your DLCO being reduced

to around 30 % of what it should be AND the confirmed and significant

hypoxia discovered with your walking and sleeping oximetry tests correlate

with the reduced DLCO and FVC.  The reduction in FVC is yet further

suggestion of a restrictive process being combined with your obstructive

lung disease process.

**********************************

I am disappointed that your 6 minute walk was conducted as it was, but,

unfortunately, not surprised, as it is one of the most variably conducted

tests done in this area of medicine.  You SHOULD have been allowed to

continue – hypoxia detected or not – as long as you were able to AND at a

pace that YOU chose.  If monitoring was to be done, then it should have done

no more than to document the extent of changes – NOT signal a point at which

the clinician decided to stop you and THEN to totally alter the validity of

your test by setting your pace!  So, the 620 feet you walked is meaningless

to determine anything with regard to the clinical state of your disease

and the limitations it imposes upon your ability to ambulate or to

extrapolate any determination of functional adequacy.  None of that is your

fault.  It is due to the poor understanding of the test purpose and method

on the part of the clinicians.

**************************

Your sleep saturations are very telling of significant hypoxemia that is

more likely associated with your fibrosis and pulmonary hypertension.

Pulmonary hypertension aggravates hypoxia, making it worse, which in turn

makes the hypertension worse, which in turn, makes the hypoxia worse . .

You can see where that is going. That is why you bottom out so low at 78 %

during sleep.

*************************************

First, I hope that 2 liters during sleep is keeping you saturated to at

least 88 % as a bottom low point.  If you have not had a follow-up sleep

study to determine the effect/benefit of the oxygen during sleep, you should

push for it to be done.   You should ALSO be using oxygen for ALL ambulation

and exertion – and possibly more like 4 to 6 liters – as I’m doubtful that

any less will saturate you adequately to counteract your pulmonary

hypertension.   Treatment of the pulmonary hypertension should be a point of

primary focus for you and your medical team.  Oxygen, at this point is the

most powerful and effective treatment you can use to slow the inevitable

progression towards profound heart failure you can expect if the pulmonary

hypertension is not controlled a LOT better than it has been over the recent

past.  That wll likely ‘do you in’ a whole lot sooner and with much interim

misery than the combined lung disease process that has caused it.

********

It is good that you are starting a pulmonary rehab program.  I am surprised

that they don’t have a pulmonologist directing the program.  Do you know

what kind of doctor is acting/serving as their medical director?  Make the

most of it.  Push hard to learn to work against the difficulties of the

breathing symptoms that accompany your disease, especially at this point.

Don’t let the staff hold you back because of hypoxia.  Push them to give you

all the oxygen you need to be able to push yourself to the maximum.  Short of

such an effort and you will be mostly spinning your wheels.  Working hard to

breathe and overcoming the difficulties and fear it can impose upon you are

not easy.  NEVERTHELESS, working hard to breathe – even when it makes others

uncomfortable to watch you work so hard – will NOT harm you, despite what

many might opine.  It may ‘feel’ like it’s gonna kill you.  HOWEVER, it will

NOT!  It is not an easy path you must travel.  But, others have traveled the

same path.  The good news is that you still have 29 % FEV-1.  That might

creep back up to 35% with hard work.  AND, it would be worth it because that

little 5 % raw change represents a 20 % change in your overall FEV-1.

*******

If you have further questions as you go along, I am happy to try to answer

them for you.       Best Wishes,                                  Mark

 

Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC

San Antonio, TX

************************

COPDers, a new study indicating what I have shouted about for years – recumbent cycling (trike)…

“…This study showed that an eccentric cycling protocol based on progressive increases in workload is feasible in severe COPD, with no side effects and high compliance…”

COPD. 2011 Jul 5. [Epub ahead of print]

Eccentric Cycle Exercise in Severe COPD: Feasibility of Application.

Rocha Vieira DS, Baril J, Richard R, Perrault H, Bourbeau J, Taivassalo T.

Source

Respiratory Epidemiology and Clinical Research Unit (RECRU), Montreal Chest Institute, McGill University Health Centre, Montreal, Quebec, Canada,1.

Abstract

Eccentric cycling may present an interesting alternative to traditional exercise rehabilitation for patients with advanced COPD, because of the low ventilatory cost associated with lengthening muscle actions. However, due to muscle damage and soreness typically associated with eccentric exercise, there has been reluctance in using this modality in clinical populations. This study assessed the feasibility of applying an eccentric cycling protocol, based on progressive muscle overload, in six severe COPD patients with the aim of minimizing side effects and maximizing compliance. Over 5 weeks, eccentric cycling power was progressively increased in all patients from a minimal 10-Watt workload to a target intensity of 60% peak oxygen consumption (attained in a concentric modality). By 5 weeks, patients were able to cycle on average at a 7-fold higher power output relative to baseline, with heart rate being maintained at ∼85% of peak. All patients complied with the protocol and presented tolerable dyspnea and leg fatigue throughout the study; muscle soreness was minimal and did not compromise increases in power; creatine kinase remained within normal range or was slightly elevated; and most patients showed a breathing reserve > 15 L.min(-1). At the target intensity, ventilation and breathing frequency during eccentric cycling were similar to concentric cycling while power was approximately five times higher (p = 0.02). This study showed that an eccentric cycling protocol based on progressive increases in workload is feasible in severe COPD, with no side effects and high compliance, thus warranting further study into its efficacy as a training intervention.”

PMID:     21728805

[PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21728805

 

COPDers–talk to your doctors- get educated and educate them to what patients CAN DO.

Thanks for reading… Sharon O’Hara


Lung Patients Learn to Eat for Easier Breathing – Wednesday!

Monday, May 16th, 2011

Harrison is doing a super job of helping us get educated and this month’s meeting is no exception.

See a video and brief glimpse of last month’s meeting on Pulmonary Function Tests with Joyce Belnap, RRT and successful Reduced Lung Surgery COPD patient Clint Halliday, there with daughter Laurie Schley.   Learn how a spirometry test is taken.  Thanks Harrison!   I also have video of other folks there and I’ll show them from time to time.

http://www.youtube.com/watch?v=bRLkUTWsKIw&feature=youtube_gdata

Harrison Medical Center’s Better Breathers Support Group Meeting Program promises to be a real eye opener and help us learn how to eat the right foods  for easier breathing , sometimes difficult for some of us to learn – “Eating to Breathe Easier.”

Taken directly from Harrison’s online Calendar of Events http://www.harrisonmedical.org/home/calendar/4891

Wednesday, May 18 – 1:00pm – 3:00pm

Better Breathers Support Group

Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.

Eating to Breathe Easier.

Featured Speaker:

Leah Werner, Clinical Dietician

5/18/2011 1:00pm – 3:00pm

Rose Room, Harrison Silverdale

1800 NW Myhre Road

Silverdale, WA 98383

Contact Info

Pamela O’Flynn 360-744-6687

respiratorycare@harrisonmedical.org

If anyone needs a ride, let me know.

Thanks for reading… Sharon O’Hara


Harrison’s Lungs and Heart are Alive and Well for Kitsap County – They Care

Monday, March 28th, 2011

Following is a response in part, from Joyce Belnap, RRT, and Supervisor of the

Respiratory Therapy Department at Harrison Medical Center in response to my blog post.

http://pugetsoundblogs.com/copd-and-other-stuff/2011/03/22/dear-harrison-medical-center-respiratory-department/

Lung patients in Kitsap County are in good hands – thank you for your response, Joyce .. …you are a breath saver.

***

“I received a copy of your email regarding our march Better Breathers.

Thank you for your feedback and insight.

I want you to know that we really enjoy having you at our meetings.  Your

presence and enthusiasm adds an extra light to the meeting.  I am especially

sad that we disappointed you in March and I  will take your suggestions and

implement them for April.   I will take your suggestions and implement them for April.

Soon after volunteering for Better Breathers, I was offered the position as the

new RT Supervisor, and along with my manager I have many goals to improve

care for the people in our community who suffer with respiratory conditions.

It will take time to accomplish all of our goals, and then replace them with new

goals for continued improvement.  Because of your input I will set a goal to

begin increasing our marketing for our April meeting.   Because of an extremely

high hospital census of respiratory patients currently, I will set my goal to begin

April 5th.

For our meeting times, I will personally stay through 3pm for anyone who may

come in later, past our speakers presentations.   Our speakers are volunteers from

other jobs and departments, and I don’t know that they will be able stay late for

that purpose, but I can certainly stay and pass on the education and answer questions,

for those with who have unexpected schedule changes.    I would be happy to do that.

I really enjoy my time with this, which is why I volunteered.

Thank you for being such a great voice and advocate for individuals

who are living, and suffering with chronic respiratory conditions.

Your passion is refreshing.

If you wish, please feel free to respond directly to me, with any more questions

or concerns.  I look forward to your future insight and input.

Joyce Belnap, RRT

Supervisor

Respiratory Therapy Department

******************

More later… Sharon O’Hara


Lung Disease Meeting Wednesday

Monday, March 14th, 2011

I hope to see you on Wednesday for the next Harrison Medical Center’s Respiratory BB Support Group Program.

I’m disappointed we’re not having the meeting I’d expected with a Sleep Study M.D. doc and an explanation of … “is cycling healthier for a lung patient with right heart failure than walking.”

http://pugetsoundblogs.com/copd-and-other-stuff/2011/02/16/is-cycling-healthier-for-a-lung-patient-with-right-heart-failure-than-walking/

That said,  I’m looking forward to the topic of the newest home and portable nebulizer machines and hope new nebulizer meds are mentioned  In particular, I’d like to know what the latest nebulizer medications are and how they work in comparison to the old Albuterol.

***

Wednesday, March 16 – 1:00pm – 3:00pm

Better Breathers Support Group

Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.

This Support Group is held the third Wednesday of each month.

Dates and Locations

3/16/2011

1:00pm – 3:00pm

Rose Room

Harrison Silverdale

1800 NW Myhre Road

Silverdale, WA 98383

Home Nebulizers and Medications

We have a speaker for you this month from MedEquip Homecare Company.  MedEquip is part of the Rotech family of hometown healthcare companies.  Tony Vondran will be speaking about the newest home and portable nebulizer machines.  In addition he’ll be teaching you about home nebulizer medications and meter dose inhalers and their proper use.

Please join us for our great topic and some St. Patrick day treats.

Speaker:  Tony Vondran, RRT

Registered Respiratory Therapist

MedEquip Services, INC.

Topics:  Home Nebulizers and Medication

Joyce Belnap, RRT

Supervisor

Respiratory Therapy Department

Contact Info

Pamela O’Flynn

360-744-6685

respiratorycare@harrisonmedical.org

***

If anyone needs a ride to the meeting, let me know.  See you Wednesday!

More later… Sharon O’Hara


Is Cycling Healthier for a Lung Patient with Right Heart Failure Than Walking?

Wednesday, February 16th, 2011

I am a patient with questions and one of them is:

Is cycling better or healthier for a lung patient with Right Heart Failure than walking.

Based on medical terminology I clearly don’t understand – it APPEARS to say so to this patient…based on the paper I blogged on and the paper I found using the Google search for:  oxyhemoglobin desaturation.

“Oxyhemoglobin desaturation can be quite severe and can even lead to damage to vital organs, particularly the heart, to the point of being life-threatening.3”

Identifying Sleep Disordered Breathing in Neuromuscular Disorder Patients

by Joshua Benditt, MD, and Louis Boitano, MS, RRT

***

Chronic Obstructive Pulmonary Disease is one thing, add bone on bone left hip and a person has to really fight to move it and I’m doing in the pool what I can’t do ‘on land’ easily – leg up and loosen and build muscle around that hip so I can ride again.  One day the muscling should support it and make it comfortable enough to ride my recumbent trikes again.

I KNOW it will work because when I had physical therapy last year, the personable and talented Anna Marx at Kitsap Physical Therapy in Silverdale put me on a machine I could not only tolerate – a recumbent elliptical – over time I actually loosened up enough where I could and did – close my eyes and built speed and a rhythm on that machine – exactly like riding a recumbent trike, a horse…without the pain of the bone on bone left hip!

I’ve begun working out four days a week with an amazing professional swim instructor and I hope and expect to regain much of the function I lost.  There is nothing to lose and everything to gain. It appears to be working – a ‘study’ in itself.  More later.

That said, what about my question:

Is cycling better or healthier for a lung patient with right heart failure than walking?

************************

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) exhibit greater oxyhemoglobin desaturation during walking than with cycling. The purpose of this investigation was to investigate differences in ventilatory responses and gas exchange as proposed mechanisms for this observation.

http://pugetsoundblogs.com/copd-and-other-stuff/2011/02/08/a-new-study-for-copders-mechanism-of-greater-oxygen-desaturation-during-walking-compared-with-cycling-in-copd/

Read more: http://pugetsoundblogs.com/copd-and-other-stuff/#ixzz1DTzzcGaW

Read more: http://pugetsoundblogs.com/copd-and-other-stuff/#ixzz1DTzg8nOT

“Oxyhemoglobin desaturation can be quite severe and can even lead to damage to vital organs, particularly the heart, to the point of being life-threatening.3”

Identifying Sleep Disordered Breathing in Neuromuscular Disorder Patients

by Joshua Benditt, MD, and Louis Boitano, MS, RRT

Joshua Benditt, MD, is a professor of medicine at the University of Washington School of Medicine, Seattle. He is also director of respiratory care services, Northwest Assisted Breathing Center, University of Washington Medical Center. He can be reached at benditt@u.washington.edu. Louis Boitano, MS, RRT, is codirector of the Northwest Assisted Breathing Center, University of Washington Medical Center. Boitano can be reached at boitano@u.washington.edu.

The symptoms of sleep disordered breathing in patients with neuromuscular disease can be subtle, but once recognized and treated, symptoms can improve.

http://www.sleepreviewmag.com/issues/articles/2007-01_03.asp

I don’t know how this all fits together for us – I also have sleep apnea and sleep with a bi-pap and concentrator bleed in to the bi-pap.

More later… Sharon O’Hara


Lung Support Air Quality Better Breathers – TODAY

Wednesday, February 16th, 2011

TODAY!

Better Breathers Club Meeting

Date: 02-16-2011

Time:  1:00PM

Location:  Harrison Medical Center -

Silverdale Campus – Rose Room

Indoor and Outdoor Air Quality

No one is more affected by air quality than individuals living with lung conditions.  Join us for education and tips on how to increase your awareness of January 2011

Better Breathers Club Meeting

Date: 02-16-2011

Time:  1:00PM

Location:  Harrison Medical Center -

Silverdale Campus – Rose Room

Indoor and Outdoor Air Quality

No one is more affected by air quality than individuals living with lung conditions.  Join us for education and tips on how to increase your awareness of the air quality in Kitsap County.  Learn quick ways to find out our outside conditions in advance before you go outside.

Speaker:  Joyce Belnap, RRT

Supervisor

Respiratory Therapy Department

Topics: Pollen Counts, Outdoor Pollutants, Indoor Air Quality

Joyce Belnap, RRT

Supervisor

Respiratory Therapy Department

air quality in Kitsap County.  Learn quick ways to find out our outside conditions in advance before you go outside.

Look forward to seeing you all soon!!!

***

Sorry I can’t be there and hope someone will take notes for me.

More later… Sharon O’Hara


Meet a COPDers Guru and Lifesaver Mark W Mangus, Sr. BSRC, RRT, RPFT, FAARC

Sunday, February 6th, 2011

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


Smiles, Giggles, Tears at Harrison’s Emergency Preparedness BB Meeting

Friday, January 21st, 2011

Greetings:  What I thought would be an easy chat about the need for patients to prepare for a natural disaster has turned out quite the opposite and it won’t be done in one blog post.  This is part One of Two.

Kitsap County got lucky.  Pamela O’Flynn, RRT, MBA Respiratory Care Department Director, Harrison Medical Center has firsthand experience what happens when we’re not prepared for a disaster.  She is a whirlwind force fighting to get all of us prepared as best we can – NOW.

Harrison Respiratory Center’s Emergency Preparedness meeting on Wednesday, 19 January was the most intense learning experience I’ve had in years.  We alternated tears, laughter, even giggles when Pam tried to look disheveled as she shuffled along the wall demonstrating how the exhausted medical staff moved and worked during the Katrina natural disaster and the weeks and months following the good, bad and ugly aftermath of a storm and disaster no one was prepared for as Pam, along with others, lost her home 40 miles inland from the hurricane storm surge.

The good was the bonding of the medical staff and all who worked for the common cause of helping others without supplies to do it.

We sat shocked, saddened and teary as Pam described why Emergency Preparedness was vital for our survival here and briefly described how, during the horrific Katrina disaster they were not prepared for the scope of the disaster.  Pam described how oxygen patients came to the hospital asking for oxygen and she was forced to turn them away knowing their fate without it.  The hospital ran out of what they had…no one was prepared…they didn’t know anything could turn out so badly.  They learned from it and that experience will help us here, now.

We got firsthand glimpses of a hospital and medical providers under siege and unimaginable duress.

On the flip side we got glimpses of powerful bonds forged out of desperate need and innovative creative means to help patients.

Laura Jull, CEM, CHSP Emergency Preparedness Coordinator at Harrison Medical Center was full of vital information and came prepared with essential handouts, including al  12-Month Preparedness Calendar Courtesy of Washington State Emergency Management Division http://www.emd.wa.gov/ -

Contact respiratorycare@harrisonmedical.org for the packets and specific information.

For starters sign up for emergency alerts and newsletter:

https://www.piersystem.com/go/site/1082/

Kitsap County Department of Emergency Management

KCDEM’s Alert and Warning Sign-Up Page

Following are a few photos.

Hopefully my desktop will work smoothly from here on out – thanks to my husband, the Old Guy.  He spent the past two days trying to get it to work.

More later, including the photos I couldn’t get in…  Sharon O’Hara


Does Oxygen Take a Bad Rap?

Friday, July 17th, 2009

Patients have a vested, personal interest in taking charge of their own health.
Our doctors help us medically but they cannot teach us how to live with whatever we have.
They cannot tell us to ignore shortness of breath – to exercise through it to achieve a quality of life we can feel slipping away.

Active, forward, informative patient support groups can and do inform and educate to give us the choice between living a quality life and just existing.

I am not on oxygen, but many lung patients are. The following is taken verbatim from the online support and advocacy group that taught what no one else was teaching – what COPD patients can do to help ourselves.

I have permission to use the following…

Mark Mangus, RRT and active educator on EFFORTS (www.emphysema.net) is one RRT who thinks outside the box.
(Harrison Medical Center has one to tell you about another time)

The following comments are on oxygen use.

Mark is responding to Tommie, an oxygen patient commenting on a previous post from Mark:
.
… they can be up to date on most everything else and still be misinformed on this matter.

It took years to become what it is today…it will take years to reverse and eliminate it…. this myth pervades across several professional lines, so it is a multi-focal,multi-front problem…

Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC
Pulmonary Rehabilitation Coordinator
Christus Santa Rosa, Medical Center
San Antonio, TX
mark.mangus@christushealth.org

Responses reflect my positions and opinions alone and do not necessarily represent the positions or opinions of Christus Santa Rosa Health Care.

Sent: Tuesday, July 14, 2009 3:09 PM
To: EFFORTS@EFFORTSLIST.ORG
Subject: [EFFORTS] Old School Thinking

Mark’s quote:

“But, they are likely stuck in the school of those who still believe that using too much oxygen can decrease your drive to breathe and cause you to stop breathing – - – the “myth” I’ve discussed so many times over the years.”

****
> I had my PCP tell me this very thing last Thursday! That if I turn my 02 up too high, my body would think I had too much 02 and my brain would send a signal telling it not to breathe!!
I had always thought he was very up to date … I’ve also had 02 suppliers say the same thing.
Too bad, we can’t get rid of this “old school thinking”. …
If your PCP has told you the same thing, please discuss this with him/her.

Thank you EFFORTS, Mark, Tommie.
Sharon O’Hara


Available on Kindle

About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

RSS Subscription

Categories

Archives