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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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Does a tumor mean Cancer? Part 3 of 4

Sharon O'Hara

Does a tumor mean Cancer? Part 3 of 4

Glimpses of a patient’s life and the medical folks who helped save my life. The University of Washington Medical Center(my lung doctor is here) and the Cancer Alliance of Seattle worked together to give me a life again.

One of the cheeriest technicians I have been around is right there at the University of Washington Medical Hospital. Washington State first class teaching hospital. The U – students and staff – alike is loaded with inquisitive, open minded, brilliant medical doctors teaching students to seek answers to patient’s medical woes.

Of the tremendous group of my tumor surgical medical team, this superb doctor stood out by his mention and appreciation of my first iPad covered Otter when he spotted it at my bedside table. I appreciated his comments and conversation about a non-medical related product. Btw… I think younger people are generally surprised many of us older folks appreciate and use new technology.

The view from my window was of one of my favorite bridges, the Montlake Bridge by the U. Beautiful views helped lessen the pain.

Need you ask? This is without doubt the best-arranged toilet area of any I have had the privilege to know and love. The shower is just on the other side of the low wall. The toilet was at a comfortable height and I let go of the walker, hung on to the low wall, and grasped the support bar on the other side. I gently lowered myself and my new equipment onto the throne.

The day I was standing by the bathroom door when my incision opened and the blood flow began through the popped seal to the machine. The bloody fluid flowed through the fingers I had pressed against the gaping open belly wound trying to hold stuff in where it belonged. Instead, bloody fluid flooded the floor and formed running rivers downhill through my room.

The professionals who answered my call light moved swiftly to stem the bloody flow and no one raised a voice in alarm – not one. I was immobilized in place hanging on to the pole with one hand and feeling the warm blood rush through the fingers of the other. The warm blood flowed on down my legs while they quickly, quietly told me where to move. They did their job with aplomb and took care of a horrified patient…like another normal day. I had an incredible feeling of well-being in spite of the thought other belly parts and stuff might flow past my open fingers over the wound trying to hold back the blood flood.

Checkout day… the dried remains of one of the bloody flows remain under my soon to be vacated bed.

…Inhalers are important to lung patients. The order we take them is also important. I mention it here because my inhalers are rarely dispensed in proper order for the full benefit of my lungs. Luckily, I know the right order to take them and do pass on that information.

I take Foradil first – a fast acting inhaler few nurses have heard of. It is one of the best for me – opens my airway fast. Spiriva is long lasting and second, while Qvar (inhaled steroid) is third.

Harrison Medical Center, University of Washington Medical, and Martha and Mary in Poulsbo – none dispense Foradil…and I do not understand why.

I hope patients and med dispensing folks using other inhaler combinations see they are taken properly.

One nurse told me she did not know there is a proper order to taking inhalers. Why not? One possible answer… If I were in the cancer area recovery, the nurses would be cancer oriented, not lung patient oriented for inhalers.

One of the terrific and friendly docs from my informative medical team. Another super University of Washington/Seattle Cancer Care Alliance doctor that I cannot name due to misplacing my notes/business cards.

Kristin, physical therapist…

Meet Gretchen, one of the outstanding nurses I had and now, my discharge nurse. She is putting together the little vac machine that will collect the fluid from the tube sealed inside the unstapled lower belly surgery site. I will wear it day and night for the next few months…while Harrison Home Health nurses will change it out every three days, per doctor orders.

Gretchen showing how the vac – the entire devise works.

Gretchen read directions and showed me how to change the container when it got full of the bloody belly fluid. I was told an alarm would sound first giving me plenty of time to take care of it.

…Goodbye Nurse Gretchen …another patient going home – another patient tomorrow. Thanks for your care and kindness.

Thank God for nurses like you…and…your detailed instructions on the belly vac came in handy the very next evening at home.

I am very lucky. They found no wingding blooming cancer – only some strange looking cells that bear watching every four months for a while.

Please understand – Kitsap County has first class cancer docs and treatment – I’ve talked to enough cancer survivors to know it.

That said…My first and primary medical condition involves my lungs – COPD first and Sarcoidosis second. I will not do any surgical procedure that involves anesthesia without my pulmonologist as part of the discussion as a consultant. While Karen Eady, MD, is my wonderful primary doctor, right here in Kitsap County, Christopher Goss, MD is my lung doc at the U . Thanks to you all!

Harrison Home Health. Part 4 of 4, next time.

Thanks for reading… Sharon O’Hara

Good-bye and thank you, Lisa Marie. You’ve moved on to a fabulous person and forever home, and we’re grateful for the eight years we had with you. Mom S

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World COPD Day,2011 and the Governor’s Proclamation meet in Bremerton’s City Council TODAY

Sharon O'Hara

Happy World COPD Day today – 16 November 2011! (Local recognition activity follows….and Bremerton’s Mayor Patty Lent leads the way) Sorry, I’m running a little late.

In addition – a new lung connection in the newly completed 20-year study found that COPD patients are five times more likely to develop lung cancer than normal lung folks are. The warning is to offer Spirometry to detect COPD in the early stages to cut cancer and COPD deaths. The investigative paper gave the shout-out in the prestigious European Respiratory Journal.

“It comes as an exclusive investigation by GP found a lack of PCT investment in the gold standard treatment for COPD is undermining patients’ quality of life and increasing practice workload.

Around one in 100 patients with the chronic disease developed cancer, compared with one in 500 without lung impairment.

Testing the lung function of former and active smokers would identify COPD earlier, thereby improving early detection of lung cancer and improving survival chances, it found.

Lead author Yasuo Sekine, of Tokyo Women’s Medical University, said: ‘The findings from our analysis suggest that early detection of COPD in addition to lung cancer screening for these patients could be an effective detection technique for lung cancer. However, further research is still needed to determine the selection criteria for COPD and lung cancer screening.’

Monica Fletcher, chairperson of the European Lung Foundation, said millions had COPD but it was often undetected.

‘People frequently ignore the symptoms of lung disease and leave it too late before going to the doctor,‘ she said. ‘This research highlights the need for routine lung function tests, known as spirometry, to help improve quality of life and identify other conditions that could be present.’

Professor Klaus Rabe, president of the European Respiratory Society, said ‘On World COPD Day, we would also urge European governments to improve early detection of respiratory diseases, such as COPD.’

Meanwhile, patients’ respiratory associations across Europe said governments must work harder to reduce the £28 billion annual cost of COPD.

Proposals from the European Federation of Allergy and Airways Diseases Patients’ Associations to reduce this burden include listing COPD as a warning on tobacco products, improving access to spirometry and funding research on how to avoid exacerbations.

http://www.gponline.com/News/article/1104308/detect-copd-cut-cancer-deaths-experts-urge/

The Better Breather’s Respiratory Support Group meets today at Harrison Silverdale -in the Rose room from 1:00pm – 3:00 pm. Pam O’Flynn will introduce Harrison’s new Respiratory Clinical Practice Educator, Martin Robin. I know the meeting will be informative and lively no matter the topic and hope to see you there!

http://www.harrisonmedical.org/home/calendar/4903

“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.”

Harrison Silverdale – 1800 NW Myhre Road – Silverdale, WA 98383

Pamela O’Flynn – 360-744-6685 – respiratorycare@harrisonmedical.org

Today – at 5:30 pm – Bremerton’s Mayor Patty Lent makes COPD, Kitsap County and Washington State history. She is the first mayor in Washington State to present Governor Christine Gregoire’s Proclamation declaring November 2011 State COPD Month, to my knowledge. Her generosity in recognizing the 3^rd leading cause of death in the US is precious by recognizing today, 16 November 2011 as World COPD Day!

District 3, Manette’s hard working effective and beneficial city council member, Adam Brockus will present the Proclamation to Karma Foley of Seabeck who lost both parents to COPD. Karma’s mom had the inherited type of COPD and with her oxygen tank, went out of her way to help me with several COPD/EFFORTS public meetings we put together a few years ago.

This COPD historic event happens at 5:30 pm in the Norm Dicks Government Building city council chambers. I will be taking pictures for y’all and trying not to let my eyes leak. Thank you!

I will ride a recumbent trike from Evergreen Park to the NDGB or walk it instead…very cold and wet out there.

Thanks for reading… Sharon O’Hara

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Update to my Kentucky medical story and a flip side of the same coin

Sharon O'Hara

Update to my Kentucky medical story and a flip side of the same coin.

I spoke too soon on my belief that the American Medical Association would be interested in my comments about a Medicare patient and a doctor in a small town in Kentucky – but a “Kentucky Medical Complaint” Google search brought up some answers.

Update in my friends Kentucky case – she, as of Saturday, 24 September 2011 had not heard from the doctor for test results. She called the local hospital where the cardio tests (2) were performed and told the results were in and she could pick them up.

She called the doctor’s office yesterday and told the PFTs were normal and the heart tests were normal too. What justified the cardiac tests when the PFTs were normal?

Why would the PFT procedure be so different in a small town in Kentucky than in the rest of the nation? Is the 29 days it took to wait for the doctor results due to a state raising fast horses and s l o w doctors in general or specific to one doctor in one small Kentucky town?

Having dependence on Medicare/Medicaid and being old, poor and trusting should not be a factor in a doctor’s way of making a living off the patients through unnecessary testing and no follow up contact with the patient.

The plus side is that she now has the physical test results of her lungs and heart but not a clue what they mean. When she called the doctor’s office this time, she was told the results of the PFT and cardiac tests were ‘normal’.

Why did the doctor order cardiac testing if the Pulmonary Function Tests were normal?

I called the doctor’s office this morning, Monday, 9/26/11 and asked several questions including why the doctor didn’t call the patient in 29 days to give her the test results and was told that it can take two or three weeks to get the results and another week for the doctor to review the results. My friend the patient was told two weeks. When I asked why the cardiac tests were ordered when her PFT was ‘normal’ – BEFORE he spoke to the patient – I was told to call back later to speak with the office manager.

I was told if my Kentucky friend wanted to know the meaning of the test results, she should call and make an appointment with the doctor.

Fast horses and slow doctors in a small town in Kentucky – doesn’t seem right to me. Are other seniors on Medicare/Medicaid being ill treated by this doctor?

Are most Kentucky doctors as seemingly indifferent to their senior patients by failing to give test results in a timely manner and ordering cardiac tests without apparent need – or just this one based on my own PFT experience?

The flip side of the coin is the unfair treatment of the medical profession by Medicare and Medicaid.

I wrote the following in answer to a Letter to the Editor, Kitsap Sun:

“Well…health care costs...not one post has mentioned WHY doctors don’t take Medicare or Medicaid. The fact is physicians and the health care industry is the only profession in this nation that PENALIZES the doctor and health care businesses!

Any other business in the country can set their price and people pay it or go elsewhere. Not so the physician. Medicare and Medicaid pay only a fraction of the set price per service of each doctor.

Why should doctors take patients that COST them money to see them…they LOSE money.

If a plumbing business could take ten calls during the business day – why would they take a call from someone that will not pay their full price for the service?

Some doctors DO TAKE MEDICARE/MEDICAID patients and I for one – am grateful mine do.

I will mention here that I saw a medical devise recently that cost Medicaid/Medicare about nine thousand dollars per patient that has one. For a patient to buy it outright it cost about twelve thousand dollars.

If that isn’t outrageous enough for you – my opinion of the value of the devise – it MIGHT be worth one thousand dollars TOPS.

In my opinion, what seems to be happening in some cases is that the health care folks have tacked outrageous prices on cheap junk to make up for the low Medicare/Medicaid set prices.

Who loses? WE DO! The taxpayer AND the patient.”

http://www.kitsapsun.com/news/2011/sep/19/letter-to-the-editor-state-shouldnt-cut-more/

Speaking of a medical determined momma squirrel in Silverdale…

Thanks for reading… Sharon O’Hara

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Seniors and Patients Buff Up, Reduce Muscular Atrophy

Sharon O'Hara

Seniors – patients – buff up or lose it. My swim coach is transitioning me to the eleven-pound weights in our water workouts and I’m FEELING GOOD.

Feeling good includes decreased blood pressure and increased flexibility to bend over and pick up something from the floor, reaching up to an overhead cupboard and angling a heavy pan down from the shelf, and, gasp! – feeling formally loose fitting underwear snug tight around my thighs.

Why is tight underwear important? Because it means – to me – that muscle is building around my hip joints to protect my bone on bone left hip from injury and enabling me to have a more mobile life. … From a patient point of view. Ask your doctor what strength and aerobic exercising will do for you as a senior or as a patient.

Feeling good means my left leg and joints aren’t frozen in place and my left ankle flexes again to help walk and balance.

Does that mean I threw the walking sticks away? No – not yet, maybe never…they are tools to assist in a more secure balance and living. They tie on to a recumbent trike so I can ride and have them to assist getting out of the seat.

“…If people lose 30% of their muscle strength between the ages of 50 and 70 years according to “Deutsches Arzteblatt International, Frank Mayer and colleagues from the University of Potsdam conclude that progressive strength (resistance) training counteracts muscular atrophy in old age (Dtsch Arztebl Int 2011; 108(21): 359-64).”

“Study Of Strength Training For Seniors Finds Increased Muscle Strength, Reduced Muscular Atrophy

….

The authors investigated the extent of the effects that can be achieved by strength (resistance) training in elderly persons and which intensities of exercise are useful and possible in persons older than 60 years. They found that regular strength (resistance) training increased muscle strength, reduced muscular atrophy, and that tendons and bones adapt too. These successes in turn had a preventive effect in terms of avoiding falls and injuries. Greater intensities of training yielded greater effects than moderate and low intensities. In order to increase muscle mass, an intensity of 60-85% of the one-repetition-maximum is required. In order to increase rapidly available muscle force, higher intensities (>85%) are required. The optimum amount of exercise for healthy elderly persons is 3 to 4 training units per week.

In the coming decades, the importance of maintaining the ability to work and to make a living will increase, as will the need for independence in everyday life and leisure activities. The increase in the retirement age to 67 years from 2012 means that one in three adults of working age will be older than 50 by 2020, and by 2050, the proportion of people older than 60 in Germany’s population will rise to an estimated 40%. Currently, the proportion of elderly persons who practice strength (resistance) training is about 10-15%.”

Dr. Frank Mayer

Deutsches Aerzteblatt International

http://www.medicalnewstoday.com/releases/228254.php

Thanks for reading… Sharon O’Hara

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Lymphedema, Bone on Bone Arthritis, COPD – Prayer, Predisone, Water Workouts Help Heal this Patient

Sharon O'Hara

Regular rehab is fabulous. But? It doesn’t go far enough – long enough – it hurts and it isn’t challenging enough.

Years ago, before beginning a concentrated physical exercise routine I asked my pulmo how high I should allow my heart rate to go and he sincerely and thoughtfully said I probably shouldn’t let it get over 100 at the beginning. I laughed and told him it shoots to 100 just getting up from a chair! I’ve not asked anyone since.

I’ve had a few really outstanding rehab technicians and I’ve learned from them. They have to follow rules though and I don’t. I’m a patient and I’m through coddling myself when I feel sick because I have a goal and it has to happen this year.

Except for one day when I was in Harrison and couldn’t make my swim session…we haven’t missed one swim session since we began 1 February 2011. No matter what, my legs can ooze, my lungs labor and wheeze or burn with a fever – nothing stands in the way of a swim session.

Marilyn Grindrod is my swim coach and a miracle worker. The only thing she said when we met and she asked if my doctor approved of what we planned to do and I told her I believed they did but I would not ever ask my doctors to give me a written note guaranteeing my fitness to exercise. They couldn’t. Nobody could. Marilyn nodded and said, “get in the water, let’s get started.”

She doesn’t say I can’t do something. She leads the way and I follow as best I can. Gradually I’m improving to a physical fitness I haven’t had in years and is proving out what Anna Marx, PT, DPT at Kitsap Physical Therapy in Silverdale proved to me: the right machine/exercise WILL help my left hip get better and manageable.

Marilyn also, by changing my work-outs and her focus on breathing, must be getting oxygen to areas that have suffered without the oxygen they’ve needed…such as the Lymphedema in my lower legs.

Melissa will be surprised when I have to go in to be measured for another set of support stockings. Lower leg muscle will meet her measuring tape, not the flab of yesterday.

My legs (left leg mostly) occasionally still need and get the Old Guy’s expert spiral and padded wrapping when the skin gets too painful and I know if we don’t catch it, the skin will crack and lymphatic fluid will again ooze out. This is the longest stretch I’ve not needed to see a doc or Melissa at NW Orthopedic and Lymphoma rehab in Port Orchard for another outbreak! Melissa’s patient education works.

My ideal week is four, one hour or longer sessions in the warm pool water. The work-outs are nonstop, smooth and I can feel my locked body become more flexible, more agile and I’m beginning to feel muscle again.

A couple weeks ago working out close to the diving board I impulsively reached up and grabbed the end of the board and began doing ‘chin ups’- shooting myself up out of the water and above the board to my chest, lowered myself and repeated 15 times. That was a lot of weight I pulled up – the point is I did it easily – the first twelve anyway.

So, you can’t live a life in the water can you? No. What I can now do on land is lift my left leg about a foot and flex my left ankle. They’ve been – sort of – frozen. When something hurts we have a tendency to back off and it becomes a spiral into a body that doesn’t work and eventually gets dumped into a wheelchair.

My patient opinion is that physical rehab works best, is most effective in the water. The warm pool water resistance gets us further faster with less pain.

I believe in miracles.

In a Pulmonary Function Test two months ago, 16 February 2011 my FEV 1 (Gold Standard for COPD) sats had dropped across the board: 35% – 31% – 29%.

Last week 6 April 2011 across the board they were: 56% – 50% – 48%

Christopher Goss, MD at the University of Washington Medical Center was amazed and doesn’t need to see me again for five or six months.

What made the difference? The longer non-burst of Predisone he extended? A miracle? Prayers? Serious water work-out by a professional swim coach?

My sister lives in a small town in Kentucky and goes to a Revival church. She and her companion each stood up and asked the minister and congregation to “pray for Karen’s sister, Sharon in Washington” and Karen says they do!

Kristin Okinaka, a reporter at the weekly CK Reporter AND a runner recently came out and wrote an article and took a photo that shows some of my recumbent trikes… http://www.pnwlocalnews.com/kitsap/ckr/news/119501909.html

The following article is what prompted this post today: If Great Brittan can do it – we can too!

“Exercise pilot is successful for rheumatoid arthritis

People with rheumatoid arthritis (RA) in Portsmouth reaped the benefits from an exercise pilot, which was the first of its kind in the UK.

Volunteers took part in a 10-week programme to get exercising in the local area. They had tried various activities, including yoga, tai chi, walking and circuit-based exercises.

‘Appropriate, regular exercise is very important for people with rheumatoid arthritis, even when they are experiencing a flare of their symptoms,’ said Colin Beevor, matron and service manager of musculoskeletal outpatient department services at Queen Alexandra Hospital, where the pilot was launched. ‘Being more active helps to control joint swelling and ultimately can reduce the pain, stiffness and fatigue a patient may experience.’

Rather than hospital-based exercise, local facilities were used to encourage participants to become accustomed to working out in a familiar environment. By learning the basics of a variety of activities, participants were also able to discover which forms of exercise they enjoyed the most, with a view to continuing with the exercise after the pilot ended.

Around 700,000 people in the UK have RA, and while many recognise the importance and benefit of exercise for their condition, obstacles such as the prohibitive cost of classes or feeling stigmatised or embarrassed in group classes can stop people with RA regularly exercising.

Local firms such as private gyms and sports centres are now being encouraged to offer discounts to people with RA to enable the participants of the pilot to continue their exercise programme….”

The pilot, run by Portsmouth Hospitals NHS Trust, Solent Healthcare and UCB Pharma Ltd, received positive feedback from participants. http://www.arthritiscare.org.uk/NewsRoom/Latestnewsstories/Exercisepilotissuccessfulforrheumatoidarthritis

More later…thanks for listening… Sharon O’Hara

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

Sharon O'Hara

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

“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

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A New Study for COPDers: Mechanism of Greater Oxygen Desaturation during Walking Compared with Cycling in COPD.

Sharon O'Hara

Do COPDers desaturate more walking than they do cycling? I’ve said ever since I discovered the recumbent trike existed that the recumbent trike was God’s gift to the COPDer…indeed, anyone with physical limitations.

Pedaling around the bay from the ferry on Whidbey Island with the American Lung Association of Washington’s Trek Tri Island three day cycling trip one early morning a few years ago was the first time I felt ‘normal’ again in about 7 years and the same length of time I’d gone anywhere overnight since a stay in Harrison Medical Center in 1997.

In those days I didn’t have a hip problem so I could walk without a problem other than shortness of breath but the recumbent trike lets us take our comfortable seat everywhere we pedal and stop whenever we need to take a break. It also builds the legs muscles better and faster (my opinion) than walking and it is sure more fun and faster.

My point is wondering what the following study means in practical terms – to us, the patient. I am one of those who do not desaturate enough for oxygen while awake.

Is cycling less strain or easier on our lungs than walking?

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“Chest. 2011 Jan 27. [Epub ahead of print]

Mechanism of Greater Oxygen Desaturation during Walking Compared with Cycling in COPD.

Mahler DA, Gifford AH, Waterman LA, Ward J, Machala S, Baird JC.

1 Section of Pulmonary & Critical Care Medicine Dartmouth Medical School, Lebanon, NH, USA.

…

METHODS: Arterial blood gases and lactate were measured in 12 patients with COPD (age, 68 ± 6 years) during incremental treadmill and cycle exercise. The primary outcome to assess the ventilatory response to exercise was the partial pressure of alveolar oxygen (P(A)O(2)). The primary outcome to assess impairment in exercise gas exchange was the difference between partial pressures of alveolar and arterial oxygen (P(a)O(2)) (AaPO(2)).

RESULTS: P(a)O(2) was significantly lower at peak exercise for treadmill walking (51.4 ± 6.8 mmHg) compared with cycling (60.4 ± 10.7 mmHg) (p = 0.002). The initial increase in P(A)O(2) with cycling occurred prior to the onset of the anaerobic threshold. At peak exercise, P(A)O(2) was significantly higher with cycling compared with walking (p = 0.004). The anaerobic threshold occurred at a lower VO(2) during cycling than walking (p = 0.001), and peak lactate levels were higher with cycling (p = 0.019). With progressive exercise, AaPO(2) increased similarly during treadmill and cycle exercise.

CONCLUSIONS: The higher P(A)O(2) during cycling minimized the magnitude of oxyhemoglobin desaturation compared with walking. The enhanced respiratory stimulation during cycling appears due to an initial neurogenic process, possibly originating in receptors of exercising muscles, and a subsequent earlier onset of anaerobic metabolism with higher lactate levels during cycling.”

PMID: 21273296 [PubMed – as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21273296?dopt=AbstractPlus

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I do not have a financial interest in any bike company including the recumbent trike.

More later…. Sharon O’Hara

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When the Power Goes Out – Is Kitsap County a Cold and Lonely Place For COPDers?

Sharon O'Hara

When the Power Goes Out – Is Kitsap County a Cold and Lonely Place For COPDers?

We had one battery charged lantern and I kept the box handy on the counter because I knew the lights would come on any minute and I could quickly put it away again. Two days later, the lights came on and I put it away. The laptop puddled in place – a good reminder that better power days were ahead…same with the lamp. The two drawers full of old candles were not lit…I do not want to inhale candle fumes.

The little shortwave radio was meant as a Christmas present but I’ve kept it – the so welcome sound and information was my connection to the world.

I didn’t know it when I shot this photo but less than two hours later, the tireless power wonders will have restored our power. It was so very cold….and it felt balmy when the temperature inside finally came up to 50 degrees.

No, only for those on life giving machines such as the C-Pap and Bi-Pap machines – they have nowhere to go to plug in their life sustaining machines. Seniors on a concentrator bleed-in usually can’t carry the heavy machines.

The plus during the last two day power outage was to discover all the people helping others in a tight fix.

My husband, the Old Guy, spent most of the two days out in the cold trying to fix the generator.

The discovery that the tube he thought would fix it, didn’t, led to more cell calls to the generator tech folks and ultimately to another Kitsap County Angel –Ward’s Radiator Shop in Chico.

It turned out that all we needed was an expandable plug that Wards said should work temporarily until he can solder it in this summer. It worked and is still working! But not until after the wonderful power workers fixed our power and we went on the emergency source heat pump. Thank you, Ward’s Radiator Shop in Chico!

Our inside temperature dropped to 40 degrees and by the second night the Old Guy fixed our old portable Honda generator and asked if I wanted it hooked to a portable heater or use it on my bi-pap and concentrator.

Well. Having taken the Mountaineering course at Olympic College some 35 years ago and learning some survival skills, I didn’t see the sense of blowing 41 degree air into the 98 degree body I’d carefully kept warm by layering. And, once in bed, I stayed warm and didn’t need a heater.

Question: Was my concern and decision against blowing 41 degree cold air into my airway wrong?

Would the cold air have been warmed enough by a warm core or would my core have begun to cool to reflect the cold air blowing in?

As it was, many of us went without the machines that keep our airway open and (for some) that keep our vital blood/oxygen numbers up.

Funny thing: With good reason, the Old Guy complains, moans, and groans whenever I ask him to get something out of the freezer and puts on heavy gloves to do it – he has Raynaud’s Disease in his fingers.

During the two day power outage, he spent hours in the below freezing weather working on the generator and never said a word…just went to work trying to fix it…and couldn’t wear the thick, warm gloves. ‘Caregivers’ is an overdue story for another time.

Bainbridge Seniors at the Senior Center have plans to provide a place to go and I hope they coordinate with oxygen companies to assist those on machines to keep their airways open and for those on concentrators and oxygen.

http://pugetsoundblogs.com/copd-and-other-stuff/2011/01/09/cold-in-silverdale-bi-senior-center-rocks/

My bi-pap was ordered after a Sleep Apnea study in 2001and Lincare supplied my Respironics Duet on 3 August 2001, according to Mike DiMatteo of Lincare, and our insurance paid it off in February 2002.

In 2010, my secure sense of well-being went to the bottom of rattlesnake canyon in a hand basket when a home study showed my sats dropped into the basement while asleep, way below good oxygen levels. I fell through the cracks in our system and I can’t be the only one.

We have stuff – serious stuff that needs fixing and that is another story for another time.

As I see it, oxygen companies are caught in the bind of Medicare, Medicaid and patients and one flaw has been lack of communication between patient, physician and Oxygen Company.

Patients talk to your doctor – its vital your sats stay up while awake and how much leeway do we have if they drop when we’re asleep? We need oxygen to our organs and the brain is a vital organ.

While I had the friendly and helpful Mike DiMatteo on the phone, I asked him about offering help with the Bainbridge Senior Center seniors planning a safe haven when the power goes out. Mike said he would be glad to offer whatever help/advice they needed. I’m sure most of Kitsap’s oxygen companies who supply these machines will help too.

Someday the rest of Kitsap County will follow the Bainbridge Senior Center seniors lead and provide assistance for those who need help when the power goes out. For some seniors, just a viable power plug can make the difference between life and death.

A super plus is the great event next Wednesday at Harrison Silverdale speaking to this very subject of emergency assistance for those of us on oxygen, concentrators, BiPap and C-Pap – all respiratory folks.

COPDers and caregivers – Mark Wednesday, 19 January on your calendar – Full details tomorrow.

More later… Sharon O’Hara

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Olympic College Nursing Program Treats 2010 – Meet Charlene and Amber

Sharon O'Hara

I can’t let 2010 slip away without showing a few photos about one of my 2010 highlights – the joined Harrison Medical Center and Olympic College RN Nursing program.

I had the privilege of being a senior /patient type for two charming OC nursing students who paid weekly, two hour visits to my home during the fall quarter.

The nursing/patient/senior program is super and I was lucky they had room to fit me into the program. I knew it would be a fun experience and I agreed when my oldest granddaughter said no shot was involved. All that was needed is a real person and/or family.

I will do almost anything to help medical students progress, thought it would be interesting, and knew it would be fun.

What I didn’t expect was the growing attachment I felt toward these girls and know that great things are ahead for them and their patients. May love and best wishes follow them always as they touch other lives as they have mine.

The Harrison Medical Center and Olympic College Nursing partnership is an awesome success if the two nursing students I met weekly for fall quarter 2010 is an example.

Charlene Engelland and Amber are opposites in personalities but joined in their intense dedication to learning medicine and patients.

Both are personable, funny, and professional in manner and appearance. I looked forward to every visit and enjoyed learning along with them and from them.

They took turns checking, among other things, temperature, pulse, blood pressure and I learned there is a pulse on the upper foot between the big and adjoining toe. All these years have gone by and I never knew there was a pulse there.

Charlene, left and Amber, right…

My photo editing skills aren’t there…sorry…

Charlene’s shoes were made for dancing…. too bad I’ve misplaced the edited version of this photo (uncluttered it)

Charlene’s live patient test for one of Harrison Medical Center’s finest RN/instructor, Mary. Mary works in my favorite area, the “M” department..

Thank you, Ladies, for a wonderful experience!… Sharon

Btw: Another highlight of 2010 is the miracle birth and life of our latest great-grandson. I call him the Lucky Little Prince because in the old days he would have died. He was born with medical issues – his heart. He not only survived, he is thriving after complicated heart surgeries after his birth.

The Lucky Little Prince’s mom works at Harrison Medical Center full time, taking classes to be an RN. Proud daddy, our youngest grandson, works around high rises.

Happy New Year Everyone!

More later… Sharon O’Hara

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