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

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

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 come