Tag Archives: EFFORTS

HospiceCare – Medicare – Patient Care – Collapses for Hospice Patient

HospiceCare – Medicare – Patient Care – Collapses for Hospice Patient, Mike MacDonald last month.

My hospice experiences have been an overwhelmingly positive, including my own mother’s outstanding care from one in Gig Harbor.  Mike’s experience happened in Maine – and makes me wonder how many other hospice patients around the country were and are caught in this latest stress fiasco for terminal patients and their family?

Greetings! Last month Mike MacDonald reached his six month Hospice Care and was ‘discharged.” Mike and his wife, Pat, were left hanging without medical insurance, no oxygen, medications, nothing to pay the doctor or hospital should he need one. The EFFORTS COPD community rallied to help.

Mike and Pat managed to work through their failed Hospice system, but the lingering question is will it happen to us when the time comes? Have patient safeguards been set into place?

One day it will be our turn for Hospice –  How is Kitsap County Hospice doing?  With Harrison’s hospice announcement recently in this newspaper, Kitsap County now has two for choice.
The Hospice patient and family deserve Hospice CARE – not a toss without medical coverage to sink or sink.
Following is Mike’s failed Hospice story update:
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“Hello friends — A quickie note this time.

For those following my odyssey of hospice-care to no-care, I am pleased to post that all of my prior Medicare access has been totally restored as of June 18. My hospice had been “paused” on May 28 with the intention that I would re-enter Medicare on May 29 and return to hospice when I got a little sicker (my doctor’s crystal ball said that date was most likely to be July 23rd lol). We of course had the foul-up where my Medicare/CMS records weren’t properly updated resulting in my having no coverage (prescription, doctor, hospital or DME) for anything related to my lungs. I am still waiting on the wheelchair to be replaced.

Thanks again to all who wrote/called their congress reps, etc. I was touched and appreciative. We see over and over again what a warm community this is where so many of us rise to help each other often in spite of our own illnesses.

We had a visit yesterday from VNA of Southern Worcester County — a small VNA office based here in Webster, MA with a satellite office in Auburn, MA that provides palliative and hospice care services. As of yesterday I entered their palliative care program. My situation is not normal for them…they most typically step in following a hospital admission. In theory, they will evaluate me for re-entry into hospice services when the time is appropriate. In fact, the “in-take” nurse that was with me yesterday wanted to refer me for an evaluation right then but my wife wouldn’t hear of it (more on that below) and I think it’s premature anyway.

My regular VNA nurse — whom I haven’t met yet — will stop in today. Normally, there would be daily visits initially settling back to 3 times a week when appropriate. I’ve already expressed my wishes that we talk more like 2 times a week. They would be responsible for palliative care which is essentially “comfort” care but not quite so much as in hospice. That’s a little murky: while under hospice, drugs are often dispensed in a manner that’s not healthy over the long term with the theory being that the patient is dying already and so longer-term consequences aren’t as important. Under palliative care, they do care more about the longer-term consequences and there isn’t necessarily any assumption about death. In my case, the nurse and the doctor’s office will have to work that out but some of my drug dosages are probably already into the areas of unhealthy.

To my surprise, this *is* being covered under Medicare. CMS has tightened access to at-home services with the goal being of reducing in-home Medicare expenditures by 14% over the next 4 years. Learning that I seem to qualify for a host of in-home services comes as a very pleasant surprise. I can get an in-home health aid to help me bathe apparently — not that I want anyone to help me that way. I am eligible for occupational therapy which I believe for me means learning how to get around the home, how to conserve energy, etc. I don’t know that I need or want those services either but I’ll be open-minded. They also talked about music therapy to my surprise…I would be likely to use that.

We had entered this with the intention of hiring a “private duty nurse” paying out of pocket to lighten the load on my wife, Pat. I was a little concerned because whereas Pat was talking about 2 hours a week, I suspected 2 hours in-home care was probably more like 4 hours a week after factoring in travel, time talking to my doctor’s office, etc. I could easily see this running $1000 a month. No expense would be too high as far as Pat is concerned…she was really traumatized badly by the disaster with the last hospice organization (VNA Care Network which covers most of central and eastern Massachusetts). Pat actually objected initially when we talked about billing expressing a preference to pay this out of pocket and not involve Medicare at all for fear that they would screw things up so badly again. She’s really quite emotional about this — and understandably so — but I also think there is no danger at this point because we’re not signing away anything (whereas entry into hospice signs away access to care for the terminal illness to the hospice provider).

This does not bode well for when it’s time to go the hospice route. I don’t think Pat will go along with that again but for now I have to wait and cross that bridge when the time comes.

Physically, I’m not doing all that great though I think I am a little better the past couple of days. One of the ironic things about the May 28 discharge from hospice was that I was already sliding into an exacerbation on that date. At times, I’ve been fairly ill since then. Still, I don’t think I am near death. I wouldn’t be shocked if that changed 3 weeks from now but I also wouldn’t be shocked if I was writing the same thing 6 months from now. My doctor feels I am dying but admits that I’m tougher than he had thought. I am definitely progressing in the illness and not happy with how compromised I am in my ability to do much of anything.

By way of comparison, I have a friend who I started working with in 1989. We worked closely for 7 or 8 years and remained in touch since. He’s 54 years old and for 2 years has been battling an aggressive bone cancer. He’s been through 5 surgeries now including the replacement of his right pelvis with a bone from a cadaver. As he expressed to me a couple of days ago via email, he really shouldn’t be alive but he’s taking every day he can get and is planning on getting a tattoo next month. I’m not one for tats but good for him. When I think of my own illness, I have only to compare myself to people like him and realize that I’m still a pretty fortunate person…this could be so much worse. I have the means and the support system to deal with this; beyond that, I don’t have much control except for maintaining a positive attitude. For the most part, I do just that.

Thanks for listening and sorry for my blatant lie at the top of this note…I really *thought* it’d be brief.
Mike”
Michael MacDonald
:::Webster, MA

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Thanks for listening…. Sharon O’Hara, COPDer  -familien1@comcast.net

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COPD Research Study at Leicester University – New Hope for Future

It is about time!  The Leicester University researcher, Prof Chris Brightling, Wellcome Senior Research Fellow is leading a team on a five year EU quest to – ultimately – individualize the COPDer treatment.  Currently, we’re pretty much given the same inhalers to help open our airways for better breathing and most COPD inhalers were developed for asthma patients – quite different from
Chronic Obstructive Pulmonary Disease.  (COPD)

I’ve taken many different inhalers over the years, none worked well – for me – as my present three inhalers.

For example, I’ve been on the same inhalers about five years – nothing newer or better has been developed and approved for use in the United States.  The last new inhaler I’ve taken for COPD was initially an incredible boost to my lungs.  The 24-hour inhaler, Spiriva, recommended to take in the morning was so powerful for me I took it at night and every morning was able to exercise three hours or so before breakfast and taking my other inhalers.  Not everyone has the same reaction and some don’t take it for various reasons – we’re all different.  This is the first time we’ve had research into our differences and I applaud and thank them on behalf of future COPDers.

These days I take it in the morning as time and COPD march on.

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“A Leicester University researcher is leading an international team in the development of a tool to help tailor the treatment of asthma and chronic obstructive pulmonary disease (COPD).

Prof Chris Brightling, Wellcome Senior Research Fellow at Leicester University and an honorary consultant based at Glenfield Hospital, is spearheading the five-year EU project, dubbed AirPROM.

According to Leicester University, the project will create computed and physical models of the whole airways system, to help scientists and doctors predict how patients might react to different treatments.

Damaged, inflamed or obstructed airways are common in people with COPD and asthma, which makes breathing difficult. The current methods to detect and treat these conditions do not always consider individual differences in the airways that make each person unique. As a consequence, people with these conditions may not receive the most effective treatment.

While scientists are working on more advanced, targeted approaches to treatment, they have been unable to match these treatments to the right patients and explain the reasons behind this.

The AirPROM research team will make a computed model of the cells in an airway and a physical model of the airways, to assess how air flows through the lungs and why it becomes obstructed in people with asthma and COPD.

By using these unique models, along with existing data from tests that measure lung capacity and highly detailed X-rays, known as CT scans, the scientists will be able test new therapies, which will enable them to tailor treatments to the individual.

The aim is to use this information to generate an extensive database that will be able to link the characteristics of different airways to a particular treatment in the future, helping health professionals provide personalized treatment for people with COPD and asthma.

These tools will also help scientists predict how the diseases will progress and the effect on the airways, to help monitor the future risk to patients.

Breda Flood, a patient with asthma and board member of European Federation of Allergy and Airways Diseases Patients Association, said: ‘This new model will help us to visualize activity in our lungs and see how our illness affects our breathing. By gaining an insight into how specific treatments will work, patients will have a better understanding of how to manage their condition in the future.’”

http://www.theengineer.co.uk/sectors/medical-and-healthcare/news/project-seeks-better-treatment-for-breathing-disorders/1008723.article

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Interesting  – We have EFFORTS (Emphysema Foundation For Our Right To Survive): http://www.emphysema.net and  Alpha 1, the inherited type of COPD:  http://www.alpha-1foundation.org/

The United States does not have a ‘Federation of Allergy and Airways Diseases Patients Association’ that I know about.

Thanks for reading… Sharon O’Hara

New Bird at the Feeder – Yesterday – New Hope for COPDers – Today

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

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!

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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!

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“….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!”

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“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

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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.

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“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

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Googling for COPD Finds an Old Letter

I wrote the following about 2004 for the American Lung Association and re-found it goggling for COPD.  I’m posting it here in hope you will see the value in early detection Spirometry testing.

“Hungry for Air: Breathing Better Together

“Living with COPD/Emphysema and Sarcoidosis was a living death. I existed. I struggled to breathe, when I moved I panted, gasped for air like a fish out of water.

As I slowly showered and dressed, ready to go somewhere, I couldn’t sit down to rest. I fell asleep.

I went from a physically active life landscaping, restoring a wonderful property in Port Townsend to a blob who existed in front of her computer.

I searched the world web to discover what COPD/Emphysema was – what Sarcoidosis was, everything, anything I could find out about my diseases and the medications I took.

I couldn’t sleep in a bed – I couldn’t breathe – I dozed sitting in a chair.

By the time I arrived at the Pulmonary Department at the University of Washington Medical Center, I believed my days were numbered. Previously diagnosed with COPD/Emphysema, an open lung biopsy showed the fibrosis and granulomas of Sarcoidosis evenly throughout both lungs.

Without energy, I felt isolated, without a purpose, a shell, a mockery of the person I used to be.

I regretted a 40-year smoking habit, but didn’t dwell on it. The single most difficult thing I’ve ever done is stop smoking. I craved cigarettes and for the first time understood a drug addict’s ‘craving’ for a drug. I craved a cigarette many times a day, then almost daily for more than two years. Even today, occasionally the urge to smoke a cigarette becomes almost overwhelming.

That is how I felt then. Today I’m energized with purpose.

I found a support group online – the non-profit EFFORTS, begun by COPD’rs, run by COPD’rs and filled with folks like me working to change the world’s awareness of COPD. I want other lung folks to know they are not alone and how they can lead the best quality of life possible.

I want to see Spirometry tests for patients. common place among physicians – to catch COPD early – before it is too late. Other than stop smoking, the single most important thing Lungers can do for themselves is exercise.

And from the time I learned of the American Lung Association® of Washington’s Big Ride Across America, it is my dream – my goal.” – Sharon”

People Gotta Breathe
Fish Gotta Swim - People Gotta Breathe

Part  2 of 4     More later… Sharon O’Hara

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Lung Disease and Oxygen

Lung disease attacks our most basic need for living survival…the ability to breathe. Diseases such as Chronic Obstructive Pulmonary Disease and Sarcoidosis affect the lungs and the lucky patients, my opinion, are those who desaturate enough to qualify for supplement oxygen.

Following is one of the best explanations I have read explaining what happens in our need for oxygen. Thanks to Mark Magnus answering a patients question on EFFORTS, www.emphysema.net.

“With any and all lung diseases, there are two things we worry about,
monitor and treat as they manifest. First, we are concerned about the
adequacy of ventilation. When lung disease becomes severe enough to
affect ventilation, we want to be prepared to support it if and when
demand exceeds the capacity of the afflicted person. Next, we are
concerned about adequate oxygenation. When that becomes negatively
affected, we must be prepared to support it with appropriate oxygen
therapy.

Symptoms associated with disturbances in these two functions are for the
most part, the same, with shortness of breath, excess work to breathe
and resultant anxiety all being the most frequent symptoms/complaints.
What separates CRPD from COPD is the treatment approach to the ’causes’
of the symptom set.

In COPD, symptoms are most often the result of poor lung mechanics, that
is, poor movement of air because of obstruction to exhalation.

The lungs have too much air in them and even normal breathing doesn’t
‘dilute’ the air in those over-inflated lungs sufficiently to allow a
return to normal gas levels within them and consequently also in the
blood. So carbon dioxide is increasingly elevated which, until
compensated by the body, stimulates the person to try to breathe more.

Eventually, oxygenation suffers and adds to the degree/severity of
symptoms. Treatment is aimed to improve ventilation and oxygen, as
indicated. That is done by administering oxygen, implementing breathing
techniques to better control breathing and taking various medications by
mouth as well as inhaled to help to better control or reduce symptoms.

CRPD require more in the way of oxygen support, as moving air tends to
be easier, though certainly requires more energy and work. It usually
requires more directly, pharmacological intervention to better control
and resolve the underlying problem. Anti-inflammatory medications like
prednisone are most often a major part of treatment. And, in turn,
symptoms of CRPD most often respond to treatment with anti-inflammatory
medications.

Sarcoidosis is one of the CRPD’s that is most readily treated and often
resolves or goes into remission. I’m curious to know how your COPD was
diagnosed AND what your ‘other’ PFT numbers are. Simply removing part
of a lung can mimic several values of PFT’s suggesting COPD.

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html
http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm?gclid=CN_g5a
KokJ4CFQhV2god4hY4oQ
http://www.medicinenet.com/sarcoidosis/article.htm
http://www.mayoclinic.com/health/sarcoidosis/DS00251
…
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.”

Thank you Mark and EFFORTS!

More later… Sharon O’Hara

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Meet Alec

Alec is the flip side of the dancing COPDer you see in the television commercial. For the COPD TV commercial dancer, all it takes is one inhaler, a few puffs and like magic, the lungs are okay and off to the dance floor.

Alec is a COPDer on oxygen, living right here in Kitsap County. .Alec doesn’t dance, he is barely able to walk. The other day he walked for less than two minutes before he was exhausted and had to sit down. He has a doctor appointment with his primary in the next week or two and wonders if he can get strong enough by then to make the appointment.

When he called for an appointment with a lung specialist in town, he was told that he missed five appointments during the past twelve months and she wouldn’t give him another appointment. Ouch. I can relate to missed and late appointments with my doctors. None, so far, has refused to give me another appointment.

My phone rang last week and a man asked for me by name. He gave his name and went on to say he had gotten my name and phone number from a article Chris Henry wrote one month short of five years ago. The article mentioned physical fitness and EFFORTS, my online support group.
I told him about the years I wasted not knowing what I could do to help myself. It wasn’t until I found EFFORTS (Emphysema Foundation For Our Right To Survive) online and learned to go BEYOND my shortness of breath to gain strength and muscle that life began again.
I encouraged Alec to begin rehab to get strength back and talk with the doctor he has a good relationship with to begin a team effort to regain as much muscle and fitness possible,..unless there is some medical reason he cannot exercise.

Alec didn’t know about Pursed Lip Breathing, the oximeter, none of the basic tools COPDers NEED to be the best we can be for the best quality life possible. He has not seen a doctor for his oxygen use in a year!.
We exchanged email addresses and this is where I became aware of unintentional gross neglect of a COPDer by not educating him in the most basic how to PLB breathe! He didn’t know why a COPDer has to exhale twice as long as he inhaled! Why not? How many other folks do we have in Kitsap County, feeling alone and trapped without knowledge and encouragement to work toward a better quality life?

I’m guessing Alec is the tip of the iceberg of ignored people right here who need help! COPD can be a gradually isolating disease.

I suggested he join ‘Walkers’ on EFFORTS, contact the American Lung Association of Washington and the Shortness of Breath Self-Management Study at the University of Washington.

Following are emails I exchanged with Alec and his permission to use here.
________________________________________
11/27/2009 8:32 AM

Hi Sharon..I contacted my doctor’s office, although he was off, and the nurse said go ahead and keep my appointment and discuss with him about being my medical partner in my quest with EFFORTS. Hope you are doing well.

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On Sun, 29 Nov 2009 09:29:29 -0800
…
Good morning Sharon….I am having a tough day today and have become discouraged ,a little. I thought I would exercise by walking slowly as many minutes as I could..If I didn’t have my faith in God, I don’t know where I would be! I started walking and realized just how bad of shape I’m in. I couldn’t make it 2 minutes ,with my 02 !!. Then I realized I hadn’t prayed or eaten or anything….and that’s not like me. So I prayed and ate and started again. I could barely make it over 2 minutes walking slowly. I realize you probably don’t want to hear all this, but I will leave you alone after this. I have a week from tomorrow to get in some kind of physical shape to make it to the my doctor’s appointment. I do want a better quality life. You have given me the inspiration to do that. I didn’t have much luck finding an exercise regimen on EFFORTS, so I will look on ALA for some ideas. I am going to keep moving forward no matter what happens, even if they are slow, or as you put it, one foot in front of the other! I just get down sometimes, but my God always picks me up and says…keep your eyes on Me, not your circumstances.. I’m sorry to unload all this on you, but I won’t bother you anymore. I will continue today to increase my minutes. Thanks for listening…..

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To: “…
Sent: Sunday, November 29, 2009 11:07 AM
Subject: Re: Discouragement

…..call 911! Or your doc. No one should be in the kind of shape you mention and by yourself…no one!

Please…call for help…NOW. Sharon

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On Sun, 29 Nov 2009 09:48:00 -0800
…
Sharon…I’m okay if I’m sitting down and not walking for a lengthy period.I don’t believe I need 911, as I breathe okay if I’m not walking or exercising.I’ll be okay.I think it sounded worse than it is! I’m alright! Please don’t worry yourself. Believe me, I know when I need 911……..Please…I’m so sorry I startled you …….

…
Sent: Sunday, November 29, 2009 11:26 AM
Subject: Re: Discouragement

Alec…Thank you for sharing with me. I’m astounded that no one has helped you build muscle and that you are alone through this and I wonder how many more of us are out ‘there’ that are in the same boat? We need to help each other with encouragement … will you give me permission to use this email exchange (I won’t use your name)to emphasize the NEED for education for COPDers in my blog?
Sharon

11/29/2009 12:12 PM
We’ll do it together, Alec…okay? AND, one day, you’ll be riding a recumbent trike…one step at a time, one cycle wheel turn at a time and have fun too.
God has a sense of humor, I am convinced of it. Do you have a goldfish, bird, birdfeeder…any pets?
You are not alone.
Sharon
**************************************************************
11/29/2009 9:34 AM

Yes, you are right Sharon. God is in control and has a sense of humor! There’s never been a doubt in my mind about that. I didn’t know you would get so worked up about it or I wouldn’t have e-mailed you. I’ve been here for over 4 yrs. by myself! I had a dog, but he got attacked by raccoons and had to be put down. I still cry about that one! Malcom. Great dog. Half Akita, half Spaniel. Big! He was 12 and had a hole tore in his throat by the raccoons over some dog food. Malcom stood his ground, but it cost him his life. Reminds me of ….yea….Jesus! The Vet said he could patch him up, but he was 12 and bigger dogs don’t live as long as smaller ones. He said he probably wouldn’t last long if he couldn’t eat. He couldn’t get up to eat. It was all so sad. I called the Humane Society and they came and carried him away. I’ll never forget the look in his eyes. But I’ll see him again when I join him in heaven.But it still hurts.Poster Child? Never considered myself one of those. I don’t want to lose what little freedom I have. Can you understand that? I hope so! If I told people just how bad I was they would freak out.We do need education in the rehab area. People caring about other people! My family lives out of state and I hate to ask someone to call me everyday or drop by because they all have families, except Louis, and he’s very busy at the church.My goal is to get healthy enough to ride my recumbent bike, go to church, prayer warrior’s on Thursdays, and to go and tell people how much their God loves them! Not to much to ask is it? Nothing is to big for God! I can do all things through Christ who strengthens me! I am going off-line to read my Bible and study. So I’ll talk to you later.One step at a time…you’re right. And fun….I used to love to swim. Couldn’t get me out of the water in the summer. You are a dear, with a big heart. Talk to you later…..Blessings…….

**********************************************************************
On Sun, 29 Nov 2009 09:21:42 -0800
…
Sharon…alot of people have said that I am brave to be on my own and in the shape I’m in. No one has even offered to help me get in shape. Maybe that tells me something about who my real friends are! I’m sure there are other people like me who are alone. If something serious happened I would be in a jam ,especially if I couldn’t dial the phone! But then again, most people I know have families and can’t come help me, plus I feel like I’m intruding, and I am, if I ask them to help. I have a single friend at church who is very busy with the holidays this time of year, but I don’t think he realizes how out of shape I’m in. Yes, you can use the e-mail exchange. I don’t know if I want to read it or not, but yes,use it. It’s just one of those things. I just happened to be alone when this all happened. What else can I do? I don’t think I’m bad enough to be in the hospital, but I do need someone to check on me daily or come by and see how I’m doing.. My friend came over yesterday and looked at my computer. I left a message for him to call me at his convenience when he gets home from church today. I’m going to ask him his opinion about whether I need to be in the hospital or a care center, since I live alone. He’ll be honest with me. …

The following article provides a good reason why COPDers tend to have panic attacks as they get more and more short of breath….

“The portion of our brains that is responsible for registering fear and even panic has a built-in chemical sensor that is triggered by a primordial terror — suffocation. A report in the November 25th issue of the journal Cell, a Cell Press publication, shows in studies of mice that the rise in acid levels in the brain upon breathing carbon dioxide triggers acid-sensing channels that evoke fear behavior.” More at http://www.sciencedaily.com/releases/2009/11/091125134651.htm

Goals:
1. Education and rehabilitation for the COPDer.
2. Find the COPDers like Alex…let them know they are not alone and what they can do to help themselves to a more active life.
3. We can help each other if for nothing else but a cheery “Hi, How are you?” voice on the phone.
4. Where are you?

More later… Sharon O’Hara

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The Swine Flu May Love Obese Folks Best

Greetings …
The Swine Flu may love us to death.

It seems that a study for one thing led to a surprising discovery directly affecting the obese and the Swine Flu and I care because after quitting a forty-year smoking habit, I grew eligible to join the lofty, spread out and huge Tubby Club and have a personal health interest in this study.

“…the cases of 10 patients at a Michigan hospital … were so ill they had to be put on ventilators.
Three died. Nine of the 10 were obese, seven were severely obese, including two of the three who died”
(EFFORTS Newsletter 13 Autumn 2009)

I have been waiting for this news to become public beyond the Centers for Disease Control and Prevention weekly report, but if it has, I’ve missed it.

In the meantime, the Swine Flu is here, real and we tub’ettes need to discuss these findings with our doctor and/or call the Health Department.

The following is taken directly from the autumn 2009 EFFORTS newsletter, verbatim. Thanks JJ and EFFORTS.
*************************************
OBESITY EMERGES AS RISK FACTOR IN SEVERE FLU
People who are obese but otherwise healthy may be at
special risk of severe complications and death from the new
H1N1 swine flu virus, U.S. researchers reported on Friday.

They described the cases of 10 patients at a Michigan
hospital who were so ill they had to be put on ventilators.
EFFORTS Newsletter 13 Autumn 2009
Three died. Nine of the 10 were obese, seven were severely
obese, including two of the three who died.

The study, published in advance in the Centers for Disease
Control and Prevention’s weekly report on death and disease,
also suggests doctors can safely double the usual dose of
oseltamivir, Roche AG’s antiviral drug sold under the Tamiflu
brand name.

“What this suggests is that there can be severe complications
associated with this virus infection, especially in severely obese
patients,” said CDC virus expert Dr. Tim Uyeki. “And five of
these patients had … evidence of blood clots in the lungs. This
has not been previously known to occur in patients with severe
influenza virus infections,” Uyeki said in a telephone interview.

Dr. Lena Napolitano of the University of Michigan Medical
Center and colleagues studied the cases of 10 patients admitted
to the university’s intensive care unit with severe acute
respiratory distress syndrome caused by infection with H1N1.

“Of the 10 patients, nine were obese (body mass index more
than 30), including seven who were extremely obese (BMI more
than 40),” they wrote in their report.

Their study was not
designed to see if obesity or anything else poses a special risk
factor for flu. But the researchers were surprised to see that
seven of the 10 patients were extremely obese.

MULTIPLE ORGAN FAILURE
Nine had multiple organ failure, which can be seen in
influenza, but five had blood clots in the lungs, and six had
kidney failure.
None has fully recovered, the researchers said.

The H1N1 swine flu virus first emerged in Mexico in March
and was spreading out of control in the United States by the time
it was identified at the end of April. The World Health
Organization declared a pandemic in June.

While it is causing moderate illness, all influenza viruses can
be deadly and this one is no exception. It has killed close to 500
people globally, more than 200 in the United States alone.

However, the new virus has a slightly different pattern from
seasonal flu — it spreads in the summer months, attacks young
adults and older children, and may affect the body slightly
differently.

As with H5N1 avian influenza, which only rarely attacks
people, patients seem to survive better if they get Tamiflu for
longer than the usual five-day treatment course, Uyeki said. “We
don’t know if it is necessary for a higher dose of the drug to be
given to patients who are obese,” he said.

“The high prevalence of obesity in this case series is
striking,” the CDC’s commentary accompany the report reads.
“Whether obesity is an independent risk factor for severe
complications of novel influenza A (H1N1) virus infection is
unknown. Obesity has not been identified previously as a risk
factor for severe complications of seasonal influenza.”

http://tinyurl.com/nugz9h
http://www.emphysema.net/Newsletters/Autumn2009.pdf

Talk to you later… Sharon O’Hara

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A Recumbent Trike Legs and Lung Beginning

Chronic patients are lucky, too.

I have a story to tell about this year’s 2009 American Lung Association of Washington’s Trek Tri Island’s three-day bike trip – but to tell it, you need to understand the beginning first.
I hope I am permitted to do this…the story is not about me, it never has been.
It is a story about a person who went from fit and health and physically active into a patient who couldn’t breathe and thought she was dying.
*****************************************************************************
Sharon’s Ride
September 2005
________________________________________
A dream come true. I worked hard for pledge dollars and LOVED EVERY MINUTE of it. For the first time since 1997 I dared to go on a trip… and had no idea how I would manage without my BiPap, my water pills … put up a tent, take it down… carry my stuff around…

At the start I felt like a breathless beached whale… wondering what I was doing with a group of – clearly – fit people on a three day American Lung Association of Washington three day bike ride on a trike I’d never ridden before. It seemed all my exercise work wasn’t enough. EFFORTS – thoughts of EFFORTS – all you – kept me going!

The outstanding help and assistance I received from the volunteer crew enabled me to keep going, but it was a fellow trike rider, Dan… who must have seen I was struggling and rode up behind and asked if he could help. He patiently taught me how to shift gears, including the big gears until I could ‘feel’ the shifting… as well as see the speedometer computer jump to reflect speed… proof to me shifting pays off.

COPD has given me the opportunity to slow down and discover incredible kindness of folks that I never had time to notice before. EFFORTS gave me my life back – exercise lets me function…

Ferry schedules are kept – ferries wait for no one. The outstanding volunteer group helped me ‘keep up’… in particular, Don.

On the last day Don drove me and my trike far enough out to get a head start and I began pedaling the final 19.2 miles into Victoria B.C. and the Victoria Clipper. Pedaling up hills I stopped whenever I needed to – sometimes every couple of feet – for a minute or two. I sat on my trike until I could go again.

Foot by foot I pedaled to the top of the hills and barreled down the other side. Until…close to Victoria – a hill came into sight that appeared almost vertical. I couldn’t see the top. I stopped when I got to the bottom and stared up. I was outfaced. If I started up I couldn’t stop to rest until I got over it. It was steep, yes, but I was too close to stop now. I started up.

The top of the hill got closer until I was just below it my legs shook from the strain and I couldn’t breathe – I labored to keep going. All of a sudden the trike felt light and we raced upward. A voice yelled, “Keep pedaling”!

My feet flew –we hit the summit and started down the other side. I yelled back, “Thank you!” Someone saw I was in trouble and pushed me up! I let the trike race down until I could pedal and breathe again and my heart quit jumping and thumping.

It was Don one of the ALA of WA’s extraordinary volunteers … I’d passed him parked on the side of the road several times during the 19.2 mile ride. He’d ask if I wanted to stop? I”d answer, “No, I’ll keep going for now.”

Thanks to many people I rode my trike 19.2 miles into Victoria and when I got there I couldn’t stop tears from welling behind my sunglasses.

You did it, EFFORTS. You taught me how to live again, gave me my life back. And to see the bright red EFFORTS tee-shirt and meet the man inside, Chris, EFFORTS Ambassador to Canada and his lovely wife was pure joy. Chris is so EFFORTS oriented, so energetic, so giving… he gave me his watch when I said I didn’t have one. And our watch says it is now 3:49pm.

God Bless. Thank you for helping me live again. EXERCISE FOLKS please help yourself…. and join me next time?
Sharon O’Hara
http://www.effortsmembers.org/Happenings/shar_ride_p1.htm

More later… Sharon O’Hara

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Does Oxygen Take a Bad Rap?

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

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COPD Research Dollars, Senator Lincoln and Senator Crapo Sponsored

COPD is international as the 5th leading cause of death in the world and the 4th leading cause of death in the United States.
There is little to no research dollars but among others, COPD has strong supporters in Senator Lincoln and Senator Crapo.

Their latest effort for COPD is the latest ” COPD Dear Colleague Letter” to ensure that at least $1 million is appropriated to CDC this year for a COPD program.

Please participate, by phone or email. The link for Senate office numbers is
http://www.senate.gov/general/contact_information/senators_cfm.cfm
http://tinyurl.com/b1lm

The following is from EFFORTS (emphysema.net) Ambassadors.

“Many professional and patient organizations (including us) are
asking that we support this call in campaign.
Some of them are the ALA ATS, COPD Caucus and all of the COPD patient
advocacy organizations. Please participate however you can.

If you are calling talking points are here:
My name is [NAME] and I’m calling from [CITY, STATE].
I’m calling today to urge Senator [NAME] to sign the COPD Dear Colleague
letter being circulated by Senator
Lincoln and Senator Crapo [CRAY-po]. The letter requests $1 million be
appropriated to the CDC to develop a Federal COPD Action plan.

COPD is the 4th leading cause of death in the United States and an
estimated 24 million Americans have the disease. Currently CDC does not have any
funding to devote to prevention, surveillance and research into this disease.

Please work to ensure that at least $1 million is appropriated to CDC
this year for a COPD program and sign onto the Dear Colleague letter.
Thank you.
____________________________________________________________________
If you would like to email; you can find directions here:
http://www.emphysema.net/cdc_copd_program.htm
Please feel free to personalize and make changes.
If you have difficulty doing that, we would be glad to assist.

Send a request for help to me at lwatson@hvc.rr.com
Please remember to include your name, address, and zip + four and
telephone number.
We will be glad to help.
All information is confidential..
Thank you for your help.
The Executive Board &
Linda Watson lwatson@hvc.rr.com
Pres. EFFORTS”

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