Tag Archives: Medicaid

Lymphedema – Not even a mom can love it. … fight it, yes – with all that is in her – and dads fight too.

Lymphedema – Not even a mom can love it. … fight it, yes – with all that is in her – and dads fight too.
Lymphedema is alive and well in Kitsap County. I have it, many folks have it and many of us know nothing about it other than it is progressive and painful.
Retired Dr. Halligan of Doctors Clinic, Silverdale knows about Lymphedema and how to treat it.
Compression stockings are a key to making lymphedema manageable and the rightful passing of the upcoming bill will allow those who cannot afford the cost of it thereby saving taxpayers related costs of this dreaded disease.
Harrison Wound Care Center is packed with folks with wounds – some of them lymphedema…a few stories on that to follow soon.

To be sure of the wording, I’ve copied the following small portion directly from the Lymphedema website.

Dean sez...Please help others help themselves.
Dean sez…Please help others help themselves.

“About The Bill
For the most current information about the bill, scroll to the bottom of this page.

Congressman Reichert, our lead bill sponsor, and advocates from his state of Washington
Why This Legislation Is Needed
Currently, Medicare, and consequently many other policies, does not cover one of the critical components of lymphedema treatment, the medically necessary compression supplies used daily in lymphedema treatment. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow. States have already recognized that coverage for comprehensive treatment is essential and cost saving, and are beginning to require that private and state plans provide this coverage. Lymphedema treatment mandates have been in effect in North Carolina since 2010 and in Virginia since 2004, and several other states have similar legislation pending.

Medicare’s failure to cover compression treatment supplies stems from the fact that these items cannot be classified under any existing benefit category in Medicare statute (law). The Center for Medicare Services (CMS) does not have the authority to add or redefine benefit categories, only Congress does, hence the need for this legislation. This is explained in more detail in a written exchange between our bill sponsor, Congressman Reichert, and former Health and Human Services Secretary, Kathleen Sebelius. Click here to read their correspondence.
What This Legislation Would Do

The Lymphedema Treatment Act (LTA) will improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies.

Specific goals of the LTA are as follows:

to provide comprehensive lymphedema treatment coverage, according to current
medical treatment standards;
to enable patient self-treatment plan adherence by providing necessary medical supplies
for use at home, as prescribed for each patient (including gradient compression
garments, bandages, and other compression devices);
to reduce the total healthcare costs associated with this disease by decreasing the incidence of
complications, co-morbidities and disabilities resulting from this medical condition.

The HHS Secretary has confirmed that a change in statute is necessary to allow for coverage of compression supplies. (See section above for details.) The Lymphedema Treatment Act will amend Sec. 1861 [42 U.S.C. 1395x] of the Social Security Act to enable coverage of these items under Durable Medical Equipment.

Details surrounding coverage, such as allowable quantities, etc., are not something that is written into statute. Matters of this nature are determined by policy decisions made after the legislation is passed. This allows flexibility to adjust policy as needed in the future, without having to pass new legislation.

Additional Information about the Lymphedema Treatment Act

Our current bill sponsors are: Representative Dave Reichert, WA-8 (lead sponsor); Representative Leonard Lance, NJ-7 (co-lead); Representative Earl Blumenauer, OR-3 (co-lead); and Representative Bruce Braley, IA-1 (co-lead). To read press releases from these offices about their introduction of the bill click here.

A complete list of current cosponsors can be seen here.

A PDF of the actual bill can be viewed and downloaded here.

A “scoring” report for the Lymphedema Treatment Act can be read here. A “score” estimates the federal costs that would be incurred by implementing a piece of legislation. A document explaining this report, as well as related FAQ’s, is available here.

Resources for Sharing Information about the Lymphedema Treatment Act

To download an information packet appropriate for sharing ONLY with members of Congress and their staff, click here. (Please ensure that you thoroughly read and understand this document yourself before sharing it with congressional offices. If you have any questions, don’t hesitate to Contact Us. Remember that our Advocacy Handbook is full of helpful tips, such as talking points and FAQ’s. )

To download a facts sheet appropriate for sharing with the general public, click here. Additional ways in which you can help spread awareness are outlined on our Increasing Awareness page.

How you can help
#1 PRIORITY – Contact Your Members of Congress!
Six Easy Ways To Increase Awareness
Join Your State’s Grassroots Advocacy Team
Lymphedema Lobby Days in Washington, DC
Use Our Advocacy Handbook
Tell Your Lymphedema Story
Visit Our Cafe Press Store
Donate Financial Support
Our Newsletter
Sign up to receive updates on the progress of the bill and how you can help each step of the way. To view past issues click here.

Current Status
Check the status of the Lymphedema Treatment Act in Congress and view the list of cosponsors.”

Thanks for listening – thanks for helping… Sharon O’Hara

Mantel Cell Lymphoma, Stem Cell Harvest and Transplant, Despair, Hope, Prayer, Love, Courage – Terry’s Story

Greetings:  Kitsap Sun has a group of sharp, sometimes annoying, bloggers I admire most of the time for taking the time to teach and educate the rest of us.  Terry is one of them. 

A few days ago, several bloggers posted  in response to a KS health article and Terry posted a little of his story to another blogger – a hint of his Lymphoma experience and said he would give  more information privately.  I asked if I could post his story here, so everyone can read it and get the benefit of a person who has been there,  done that and survived.  Terry’s story should be shared.   Sharon


Mantel Cell Lymphoma A survivors story

In 1999, when I was 48, years old, a strange transformation started in my body, large bulbous sacs over my eyes, chronic sore throat and sinusitis, and it just seemed I was always tired, constantly and ever tried.  My doctor told me not to worry, the sacs were just “lacteal swelling,” with sinusitis an effect; just cover the eyes with warm bags of water… and it would go away.

A year later I was diagnosed with Stage 4 Non-Hodgkin’s Lymphoma (NHL), a very rare form called “B-cell Mantle Cell Lymphoma,” a difficult to treat disease that (at that time) had a 10% survival rate, and no chance of a cure.

I immediately went into treatment, staying with my usual doctors at The Doctors Clinic in Bremerton, who quickly referred me to the Seattle Cancer Care Alliance (SCCA), an affiliation of UW medicine, Fred Hutchinson Cancer center, and Children’s hospital.  The SCCA was selected partly because of two senior fellows, Dr. Oliver Press, lead researcher in hematology (specifically, treatment of NHL) the other, Dr. Ajay Gopal, a pioneer in stem cell transplant; both on staff at SCCA. Both Dr. Press and Dr. Gopal were renowned worldwide as “leading edge” in developing new treatments for blood cancers.

My primary care doctor was Dr. John Pagel, who I still think of as the wizard whom saved my life.

At that time (2002) a new protocol was being investigated, one which involved extensive chemotherapy (HCVAD), total body irradiation (TBI), and stem cell transplant (SCT). The underlying idea was to kill the cancer cells with chemo, harvest stem cells from my blood, than kill any remaining cancers with TBI and a heavy dose of chemo. 

The radiation and “killer chemo” destroys not only the cancer cells, but also all other blood cells. Just like other forms of radiation poisoning, if left untreated, death is only a few days away. That’s the purpose of the Stem Cell Transplant. By putting the previously harvested stem cells back into my body, they cause the blood to re-grow healthy cells destroyed by chemo and TBI, and (hopefully) result in a full recovery of blood chemistry, free of cancer.

Two types of Stem Cell transplants were available, autologous, where the patient (me) provides the cells to be transplanted, and allogeneic, where those cells are donated from another person.  In my case, autologous was preferable, as it had less chance of rejection by my body, and lower incidence of Graft vs. Host Disease (GVHD), where foreign blood cells cause major skin irritation’s, from intense itching to open sores. Although I’ve never suffered GVHD, from talking with others, I understand it soon becomes unbearable. Thank goodness my cells sufficed.

Remember, this was a treatment preformed over a decade ago, and was experimental at the time. I understand that new protocols have been designed, especially in introducing radiation into the body, which may prevent the need of the Stem Cell Transplant.  Such treatment use antibodies which have been specially modified to find and attach themselves to the cancerous cells, avoiding healthy ones. These specially modified cells have small amounts of radiation attached to them, so they irradiate only the cancer cells, leaving other, non-cancerous cells healthy.

That’s a basic synopsis of what was done to cure me (yes, after eleven years, I’m willing to call it a cure) of my cancer, B-cell Mantle Cell Lymphoma.  Now I’ll proceed with a more personal report of my experiences of being treated at SCCA, and UW Medical Center. I also introduce my longtime girlfriend Julie, who died of brain cancer on Halloween, last year.

Perhaps at that time, my biggest worry was cost. I know that sounds silly, but at the time, prognosis for survival was maybe three years, I was uninsured, self-employed with limited savings, mostly retirement savings, that could never cover the cost of treatment. Enter the social worker staff at SCCA, who initiated a plan… spend all of my savings on treatments, then apply for Medicaid and Social Security “short term” disability benefits,  which I did.

So I blew through tens of thousands of dollars of savings, sold some property I owned, paid some more, then went onto Medicaid.  One of the most remarkable things of “paying the bills” myself was how well the hospital, my doctors and diagnostic centers worked with me on reducing costs. I would receive a bill for several thousands of dollars, and most, after one phone call, were reduced by 70%, sometimes even more.  When I finally qualified for Medicaid, financing the journey was no longer a concern. I still had to eke to pay household bills, but the small stipend from SSI, food stamps, and income from renting “the other half” of my and Julies duplex paid most of the bills. Some people I’ve talked with, those who choose to not use Medicaid or are otherwise insured, continued working through most of their treatments. All in all, in my opinion, the Medicaid system worked exactly as it should.

I’ve had people ask me: “should someone, such as you, have to lose their wealth to pay for healthcare” And I, in retrospect, respond: “it is always possible to rebuild wealth; it is never possible to recover from death… dumb question.” So here is my story.

The Chemo:

My chemo treatments used a protocol called Rituximab HCVAD, standing for Hyper Cyclophosphamide vincristine, and Dexamethasone . The official title is: “Rituximab-HCVAD Alternating Rituximab-Methotrexate-Cytarabine Versus Standard Rituximab-CHOP Every 21 Days for Patients With Newly Diagnosed High Risk Aggressive B-Cell Non-Hodgkin’s Lymphomas in Patients 60 Years Old or Younger.” Whew!, don’t you just love doctor speak.  A link to MD Andersons study is:  http://clinicaltrials.gov/show/NCT00290498. Note this study is no longer recruiting, making me think there are other, more effective treatments now available. This writing is just my experience, occurring over ten years ago.

My chemo was all administered at the UW Medical Center, in seven cycles, each cycle consisting of five to six days in the hospital receiving chemo, then two weeks resting at home.  I had no adverse effects; none of the nausea so often touted as a side effect of chemo, but did feel lethargic and very, very tired after the fourth or fifth treatment cycle.  During the entire time of receiving chemo, I was able to function well while in the hospital, most days, walking up and down five flights of stairs for exercise, caring for my own sanitation, and understanding the chemo procedures as they were done, then at home, doing the everyday “things” that needed done around the house. Julie was able to help, but we both were amazed how little our routines changed during these chemo treatments.

To me, the chemo was unremarkable, except that the swelling over my eyes disappeared after the first treatment cycle, and the drug Rituximab (I believe it was called Rutuxin) caused the strangest physical reaction…, which I could only describe as having my face torn apart, but without the pain! It felt like my jaws moved toward my eyes, pulling apart laterally from each other (as I said, it was strange) Anyway, after an injection of Ativan, an anti-anxiety drug… all was OK.  Two other long term effects of this chemo regime are constant neuropathy in my feet and hands, often presenting as sharp needlelike “jabs,” and a noticeable reduction in mental acuity, where confusion, short term memory loss, and dis-coordination hamper much of my ability to accomplish work effectively. This latter is well recognized, often called “Chemo Brain,” and it is real. I like to joke that I get the daily effect of drinking… without the expense of booze, or the malaise of a hangover!

The Stem Cell harvest

After half a year of chemo treatments, and much blood analysis, my stem cells were harvested from my blood. I can only describe this as one would envision kidney dialysis,  several hours, painlessly hooked up to a machine that sucked blood from my body,  processed that blood inside the machine, then replaced it back into me.  Again, except for boredom, rather unremarkable.

The Radiation

At the time of my treatment, two options existed for irradiating cancer cells. One Total Body Irradiation, exposed the entire body to radiation, the other, Radioimmunotheropy, where a radioactive antibody is designed and manufactured to specifically target only the cancerous cells. Once attached to the cancer, these antibodies’ deliver a lethal dose of radiation directly to that cancer, thereby saving healthy cells from radiation.

Unfortunately, after my chemo treatments, no cancer cells could be found in my blood, so the antibodys could not be designed for Radioimmunotheropy. .. meaning I had to get nuked with Total Body Irradiation (vs. this more conservative Radioimmunotheropy treatment) . This is the only time I have ever heard that *not* having cancer is a bad thing!

Anyway, Total Body Irradiation (TBI) was a process of several treatments, each where I stood for ten or so minutes in front of a device I could only call a big camera.  The “lens” of this machine shot out controlled streams of radiation which irradiated my entire body, presumable killing cancer… and everything else. That’s the downside of TBI, it kills your entire blood chemistry along with the cancer.  I actually remember a blood “lab” report, where normally blood counts would read 11.2, 8.1 4.7… this report *after* TBI read 0.0, 0,0.00….yes, it really does  kill you.

After several treatments of TBI, I was given a mega dose of chemo to kill any cancer cells that remained in my body, and sent home to marinate for a few days.

The Stem Cell Transplant (SCT)

Well, now’s the big day, so big in fact, it’s often referred to as “your second birthday.” Mine was October 31st, 2002 (yes, my second birthday is Halloween… very appropriate for a heathen such as I, and BTW, Julies favorite day of the year)

Again, for something so important, it was rather unremarkable. It was really nothing more than a blood transfusion, a bag of my own stem cells delivered intravenously over an hour or so.  The only remarkable thing about the SCT is the stem cell solution is preserved with DMSO, which caused the most obnoxious sensation of “smell” once it enters the body; sort of like snorting bleach, but worse.

So, once again, after the transplant, I was told to drink a lot of water, piss out the bad stuff, go home and come back when the real effects of the SCT hit.

The real after effects of SCT

During the TBI and SCT phase of treatments, Julie and I were temporarily living in a small apartment in Seattle. This is because the SCCA felt it necessary to be near a treatment center and Port Orchard too far away. In retrospect, living near the hospital was a good thing.

I felt good for a few days post-transplant, Ok for another few, and kind of tired and lethargic for several days after that… then completely depleted, barely able to move; a week after TBI I literally was unable to move.

Julie drove me to the SCCA, where I passed out, and awoke in an ambulance driving me to the UW Medical Center; where I spent the next three weeks in an isolated room, free from any germs that could infect my immune system. It actually was quite cool,  a room where double doors isolated me from the outside world; a nurse would walk in, close the outside door; then clear the air, open the inside door, and walk into my room; repeating the process for egress.

I don’t remember much about the next three weeks, except for the little red morphine button, which I kept pressing with no result. I remember nurses telling me to get out of bed, clean myself up; walk around the room, get a little exercise… all to no avail. I just wanted to lie there, and frankly, hoping to die. Julie would come into this isolated room to console me, and I’d tell her to leave. It was not a good time.

During this phase of treatment, you are fed intravenously, and have no real food… surprisingly enough, it doesn’t matter.  You have a TV, you have visitors, but curiously enough, once awake and aware, all I wanted to do was go back to sleep.

As a nurse later told me: “you had a tough time of it,” and in retrospect, she was right.

But things got better. My blood counts recovered, my situational awareness improved, my health recovered; I could get up and walk around. After three weeks, I was released from the hospital, and went back to Julies and my apartment.

What I remember of the next month, while living in Seattle, was how cold I was.  This was December. Pre transplant I was short and fat, around 210 pounds; post recovery, short and skinny, about 150. I had lost a lot of fat, and it seemed where ever I went, the grocery store, the laundry, for walks around the blocks… I was constantly cold. That lasted for about half a year.

Julie and I moved back to our house after half a year in Seattle, a few months after my transplant. It was a long, slow process for recovery. I could work for half an hour, say mowing the grass, then become so tired I’d collapse, lying on the ground, not really aware and panting to catch my breath;  freaking out both Julie and my renters next door;  who, I can only imagine thought “he’s finally dying.”

This went on for well over two years, but slowly my health improved. About three years post-transplant, I had an epiphany… I wasn’t living a recovery… I was just waiting to die!

Here I was, newly healthy, cancer free, rebuilding my strength; and told by the experts my disease had no cure, my prognosis three to five years to live! I knew that wasn’t right.

That was eight years ago. I’m still alive, I’m still healthy. The worst effects remaining of my cancer is neuropathy, chronic fatigue and what I call “old man brain rot,” where… well, my brain just doesn’t work like it should, and I’m kind of stupid.

But I’m healthy. I wake up in the morning sucking air. I say a little prayer each day, I pray: “Thank you for my remission, I appreciate it. Please, until my relapse, guide me how best to help those worse off than I.” Amen.

See? It’s a prayer… in no way can It hurt.

I understand that now, a decade after my treatments,  B cell Mantle Cell Lymphoma victims have a 50% survival rate to five years, and I have to think, somehow, those prayers helped. 



Thanks for listening… Sharon

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

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.”

Read more: http://www.kitsapsun.com/news/2011/sep/19/letter-to-the-editor-state-shouldnt-cut-more/#ixzz1YsPjzSZ4


Speaking of a medical determined momma squirrel in Silverdale…

Thanks for reading… Sharon O’Hara

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

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.


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

Seniors Learn and Chat New Government Benefits TODAY

The Department of Health and Human Services want Seniors to know stuff.

They’ve scheduled weekly web chats and TODAY, 8 April at 1:00pm “.. top experts on health care and seniors will join Secretary Sebelius live for a discussion about some important benefits for older Americans .” Don’t miss it.

Read on for more information to benefit Seniors, including the donut hole filler.

“Now that the Affordable Care Act is law, the Department of Health and Human Services wants you to be sure you are getting the information you need about the important early benefits that will be available this year.

Each week HHS will be hosting a weekly web chat with Secretary Sebelius and other top officials at HHS. You’ll be able to hear more about what the new health insurance reform law means for you, and you can submit your questions directly to Healthreform@hhs.gov.

Last week, the Secretary and SBA Administrator Karen Mills talked about the new tax credits that are now available to help small businesses buy health insurance for their workers. You can watch that web cast on demand by clicking here.

This Thursday, April 8th, at 1:00 PM EDT, two of HHS’s top experts on health care and seniors will join Secretary Sebelius live for a discussion about some important benefits for older Americans. Kathy Greenlee, our Assistant Secretary for Aging, and Marilyn Tavenner, Principal Deputy Administrator of the Centers for Medicare and Medicaid Services, will be available live to take your questions.

Join the conversation tomorrow at 1:00 pm EDT at http://www.hhs.gov/live.

Did you know that the new law will provide a $250 rebate this year on prescription drugs for those facing the gap in Medicare coverage known as the donut hole?

Did you know that the new law protects and strengthens Medicare by eliminating waste and fraud and ending overpayment to private insurance companies?

Did you know that preventive care will be available to Medicare beneficiaries at no cost?

We will be discussing all these benefits plus new details about a new retiree reinsurance program (pdf) that will bring much needed relief to many early retirees who cannot access affordable health coverage.

Send us your questions today to Healthreform@hhs.gov.

We’ll answer as many questions as we can during the web chat and address others in the “Your Questions Answered” section of our website.

Jenny Backus
Acting Assistant Secretary of Public Affairs
Moderator of the HHS Weekly Web Chat

More later… Sharon O’Hara

Government Controlled Health Care

Please excuse my mention of politics and our current health care system dilemma. I am a patient, not a political party…disease does not stop at borders but it sure plays a part in medicine…

“It is a common misconception that the free enterprise system is at fault for the current high cost of medical care in the US, a misconception that the current administration has no desire to refute…”


Now the White House is extending the unemployment insurance – again. Nothing happens overnight, we know…but I would feel more hopeful if our government wasn’t spending money we don’t have… and keeps spending the same invisible money.

President Obama reminds me of a cookie starved kid suddenly turned loose in Ma Kettle’s Cookie Kitchen – he keeps making cookies long after the oven died and the shelves are bare.

The car bonanza helped people buy all electric golf carts at a fraction of the cost or got them free – thanks to the taxpayer and generosity of the White House. (WH)

The Acorn shame was hidden by the mainstream media – Fox opened Pandora’s Box and we began to learn how the WH is manipulating the media and attacking Fox for telling us THE NEWS. Real news, not slanted.

Last night I did my usual click through stations and found one miserable health condition show after another…gee, right when the WH is manipulating for government controlled health care.

Once during the past few months, I joined in on a AARP phone town meeting and listened to one amazing comment after another…until I had a page almost full of comments and questions to ask.
I called the number given for questions and left the message. The impetus to call was when AARP bragged that California had the best system of superb health care in the nation. The California health care system should be the model for the country…no one mentioned that California is BANKRUPT.

Later, the last cookie of remaining respect crumbled when I watched the CEO on a Fox interview state over and over again that AARP did not have a position yet on health care.

I have a special interest in health care, as do most of us … and do not want another government controlled agency doomed to fail…just as government controlled Social Security, Medicare and Medicaid are failed.

“Social Security is safe today but will run deficits in just 12 years. That’s not a very long time to fix the world’s biggest government program.”

“…The current recession is wreaking havoc on the Social Security trust fund. But the real blame lies with irresponsible politicians. Instead of planning for the future—of which they had literally a generation in advance warning—politicians acted as if a severe recession would never come.

Now, instead of a trust fund filled with the accumulated dollars of previous generations to cover distributions to those taxpayers, the government is left with an empty bag of holes.
The trust fund’s annual surplus will all but vanish next year according to the Congressional Budget Office’s (cbo’s) most recent report.
With unemployment rising, there are 5.1 million fewer workers paying into Social Security than when the recession began in December 2007.

The end of the Social Security surplus could have enormous consequences.
For the government, it means not only will it need money to somehow pay those Social Security entitlements, but it will also need to find a new source of off-budget money to “borrow” from for other expenditures that were previously funded by stealing from Social Security. …

“Over the past 25 years, the government has gotten used to the fact that Social Security is providing free money to make the rest of the deficit look smaller,” said Andrew Biggs, a resident scholar at the American Enterprise Institute. “Instead of Social Security subsidizing the rest of the budget, the rest of the budget will have to subsidize Social Security.”

That is not good news for the 51 million retirees who depend on Social Security.

Already in massive debt, the government has limited options for financing Social Security.

The first two options—cutting benefits for retirees, and/or raising taxes on current workers—are probably politically impractical, especially since America is only in the early stages of the “Greater Recession.” …
…government with one last-ditch option: to just create more money…. may include discrediting the dollar, destroying America’s purchasing power and severe international consequences.

The Federal Reserve Bank has already announced that it has started down this path. Inflation will almost inevitably result.
America is facing some tough choices, none of them easy: reduced benefits, higher taxes, more borrowing, higher inflation, a damaged dollar. The consequences of big government and even bigger spending are about to slam home with landslide force.

The Social Security debacle is just one more should-have-been-avoidable financial crisis to add to the growing list. … •

President Obama is NOT RESPONSIBLE for the SS crisis…he inherited the SS, Medicare and Medicaid disasters.
President Obama IS RESPONSIBLE for his outrageous borrowing and throwing more billions of invisible money into the pit of no return.

Between Fannie, Freddie, Ginnie and the FHA, an astounding near 90 percent of all loans being issued in the United States are now backed by the government. If home prices continue to fall, and defaults continue to grow, these organizations have the potential to destroy government finances. Yet instead of trying to mitigate this unfolding disaster, America is actually plunging in deeper. http://www.thetrumpet.com/index.php?q=6697.5217.0.0

The writing is on the wall–the Social Security system won’t be able to sustain itself much longer. When the Social Security trustees issue their 2010 report next May, the viability of this system will have deteriorated further—a fact trustees cannot hide any longer under the proverbial “political rug.” However, with media attention focused on healthcare and the death of Michael Jackson, most Americans are simply unaware of this coming tempest….”

“…Not only will Obama ration your health care — especially if you are a senior citizen — and have the government decide what treatment and benefits you get, the proposed plan will also build and expand the government’s surveillance and control grid.

Section 163 of the bill now in Congress allows the government real-time access to a person’s bank records, including direct access to bank accounts for electronic fund transfers. “Even-though the bill mentions privacy aspects, the fact remains that if approved, Obama’s health care plan will allow government access at any time to your personal bank records,” KFYI News reports.
“It’s pretty Orwellian, it certainly gets the government pretty darn deeply involved in private matters in our lives,” Arizona Congressman John Shadegg told the news radio station…. http://www.infowars.com/obama-health-bill-allows-government-real-time-access-to-bank-accounts/

“It is a common misconception that the free enterprise system is at fault for the current high cost of medical care in the US, a misconception that the current administration has no desire to refute. However, the government’s regulatory and control practices are really at fault. Ever increasing and more punitive government and Medicare regulations set the standards for the actions of the private insurance companies. … Government over-regulated and managed health care makes as much sense as government managed flying.
Frank S. Rosenbloom, M.D. “Government Health Care Won’t Fly””

More later … Sharon O’Hara



Since when does living a quality life for the medically or physically challenged mean too costly for taxpayers?

Living a quality life, to me, means seeing and feeling the world around us…seeing the sparkle and sharp colors of new daybreak splash slowly across the horizon and its new dawn promise, the muted and soft streaks of a sunset inch across the sky at day’s end, the happy, funny gurgle and contented baby coo, a bee’s buzz as it flits from flower to flower, the busy chirp and chat of birds, the cheery tug of anticipation at the shout of “STRIKE ONE!” when your child or grandchild is at bat, the intoxicating smell of freshly mowed grass, an unexpected hug from a friend, the excited bark of a welcome home greeting and the warm feel and tangy smell of a horse and the soft nudge of her head for a carrot treat – all blend together.

None have a price tag. One or more of these things and many more, give a quality life without a price tag.

Yes, for seniors, when major disease requiring intensive treatment costly to the body and pocketbook is diagnosed, open and honest dialog between the patient and doctor is a vital step to making the right decision for each patient.

If the patient is already under treatment for life altering medical conditions and treatment, the patient must be fully informed of the new estimated treatment, length and intensity of recovery, adding the cause and effect to the existing medications and prognosis.

Who should make the decision? The patient knows when his/her quality life is over. For me, it is when I can no long feel anything but the pain …when the world around me ceases to matter…before I can no longer take care of my personal needs and can’t recover…its time.

I know, understand and approve age and other limits on lungs and organ transplants. I don’t get mammograms, apps or colon tests simply because should any prove positive, I won’t do anything about it.

My doctor and I have already talked about quality of life and she is incredibly wise and informs, yet accepts my decisions about my own health care. My family knows exactly how I feel and it is not their decision, it is my life and my decisions.

It is not your decision either. I think the patient’s doctor and other medical professionals – NOT including the government – need to present the facts to the patient in a kind, straightforward manner and let the patient and medical team make the decision regarding treatment or no treatment.

IF the facts are presented properly and honestly in each case, very few, if any, senior patients would choose to undergo serious surgery, intensive recovery time, loss of ability to care for their own personal hygiene and waste what remains of their time on earth. Each situation is different and individual.

I was once present when an elderly patient was taken to the emergency room. He clearly had dementia, yet was given – it seemed – a test on every new and old machine in the hospital. One scene stands out in memory…the technician reading aloud the instruction booklet as she hooked the patient to the machine. None of the tests were productive. I’m sure it was an expensive visit.

Keep terminally ill folks comfortable … but all these things should be discussed with the PATIENT long before emergencies and urgency cloud the overall issue.

I doubt my grandmother had much quality of life after she entered the nursing home. Her false teeth were stolen along with other personal items. She fought to get out of bed and walk until she was drugged to keep her compliant and easy to care for. Soon she couldn’t get out of bed by herself and was eventually spoon fed and diapered.
Quality of life? She was over ninety, did not recognize anyone and had forgotten how to speak English. The grandmother I knew was gone.
Why hadn’t she been allowed to walk and maintain a quality of life? Too expensive?

Keep government out of health care and a single pay. Let the free enterprise system flourish and see the health care costs diminish and patient care increase. Let the insurance companies compete for business across the nation. Allow our system to work and use the system we already have in place to correct and make the needed changes. NOT GOVERNMENT.

Remember the $600 toilet seats government bought and regular folks only paid about $50 for the same seat? How about Social Security? How many years before its bankrupt and the people paying into it now will probably never get to use it?

How has the government run Clunkers worked out for our tax dollar and the economy? Well, a lot of folks bought, free, thanks to the Clunkers program, electric golf carts.

Medicare is government run…is it successful?
The government run Medicare and Medicaid is the reason the medical profession is the only profession I know of in this country that is penalized for being in health care and treating seniors and Medicaid patients.
Patients are cheated, physicians and health care professionals are cheated…and some cheat in return.
Keep government out of the health care business… for your kids’ sake.

No one in this country is denied health care…hospitals have shut their doors before or after the bankruptcy for treating patients without payment. No one is turned away. However, how long can any organization last without revenue?

In addition, ask yourself how long a civilization can last or should last, if their citizens are evaluated and cared for based on dollars not spent?

Frank and open honest discussion with the patient – educate them – will make a difference…not manipulation based on dollars. .

NO to government health care.

More later … Sharon O’Hara
This blog post was an answer to a post on Rob’s blog and tantalizing title: http://www.kitsapsun.com/news/2009/oct/16/rob-woutat-a-dying-person-needs-death/

Health Care Reform Gallops On

Rachel Pritchett interviewed several health care professionals resulting in her article on health care reform in today’s Kitsap Sun. I started to make a few comments in response, and then decided to put it here in COPD and Other Stuff.

Following is the url to Rachel’s article and my comments to excerpts of her story.
http://www.kitsapsun.com/news/2009/aug/02/local-leaders-weigh-in-on-health-care-reform/unday, August 2, 2009

“Barbara Malich, CEO of Peninsula Community Health Services, said much of the reform talk is about expanding coverage, but rarely about improving access. Policies may lack dental care or mental-health coverage, causing even those who are insured to pay full freight or go without, she said.”
Patient here: Dentistry and mental health should be part of the health care picture for patients. I know patients whose doctor will not take Medicare premiums, forcing the patient to pay out of pocket. That is fine for those who can afford it but what happens to the folks who can’t afford it? What happens to them?

How well can the body be when a tooth is infected or other dental problems?
Teeth and mouth attach to the body…why do we separate one from the other? Good dental care is vital to one’s health.
‘Brian Wicks, president of The Doctors Clinic…“Right now, we’ve got everybody paid (based on units) of work performed, not compensated for coordination of care and disease prevention,” he said.…

Reform also should include incentives for providers to look at alternatives to traditional end-of-life care that often subjects patients to long stays in intensive-care units and risky and expensive surgeries. Instead, he said, providers should be encouraged to discuss options outside of surgery and the ICUs.

“Nobody compensates us for having that kind of group meeting to coordinate the care for that patient.” Wicks said.

To prevent widespread duplication of medical tests, providers should be able to access patients’ electronic records, even if those records are with a different provider, he said. Providers often end up ordering tests that have already been done because they can’t see the whole patient history, he said.’
Speaking as a patient:
When duplicate x-rays are taken within days of each other by different clinics (urgent care – surgeon) under the same umbrella, same town, is it currently ‘normal’ practice to order the second set only to squeeze the Medicare system? The reason given to this patient by the second doctor (surgeon) was that the first sets of x-rays were not clear enough.

If health reform passes, will the second doctor be unable to retake x-rays even though they are unsatisfactory to her/him?
“Huge savings can be made if reform moves toward a “value-based” payment system, according to Gary Kaplan, CEO of Virginia Mason Medical Center, which has a clinic on Bainbridge Island.

That means providers no longer would be rewarded in Medicare and other reimbursements for performing more tests than necessary, but for providing only treatment that is reasonable.”
Patient speaking: I think you are selling doctors short. Fifteen years ago, Virginia Mason had at least one straight up doctor who did not order a battery of tests when he could have, with dad on Medicare and two follow up insurances, we would not have known the difference.

The doctor examined dad, told us what was wrong…and asked if dad wanted to go through more extensive testing that, in his opinion, would give exactly the same diagnosis. The doctor explained dad’s options, answered our questions, even answered questions we had not thought to ask. We were satisfied and dad’s inner ear imbalance unfolded as the good doctor told us it would.
“Scott Bosch, chief executive officer of Harrison Medical Center, is among local provider chiefs hoping reform will help provide insurance for more of the 47 million people who now lack it.

His hospitals spend $30 million annually covering bad-debt and charity cases, with much of that loss coming from uninsured people seeking help through Harrison emergency rooms and urgent cares. If more of those people had insurance, Harrison’s losses might be less…”.”
Patient speaking: How can health care reform be addressed until the illegal alien dilemma is solved? What percent of the 47 million people without health insurance are non-citizens of this country?

Government has not proved successful with Social Security, Medicare or Medicaid – what bright light have the for’s seen that tell them that our government can run a health care system any better?
“Guy Stitt, president of AMI International Naval Analysts & Advisors of Bremerton, said reform should stop the practice of gender discrimination by insurance companies. It costs him twice as much to insure a 26-year-old female as a 26-year-old male on average, he said. … a woman in her 50s costs him 40 percent more than a man of the same age….”
Patient speaking: Why? What makes the insurance companies discriminate in such a manner? I know males pay more for car insurance…because they are in more accidents than women drivers are in at the same age.

The males higher auto insurance costs don’t reflect on his employment health care costs to his employer . Why, assuming woman have more medical costs than men, (keeping their sons, husbands and fathers healthy) force employers to favor male employees over females due to the increased health insurance cost to the business owner?
“Just about all the providers and insurers contacted by the Kitsap Sun said they were glad the topic has been moved to the top of national discussion. They also anticipate some kind of reform — maybe a lot less than hoped for — will pass in the fall…”
Patient here: Change is needed, but not if it takes away from our free enterprise system – the same system my immigrant family came here for – to become Americans. They dreamt of a country, America, where their ideas and hard work are compensated and where the only limitation was a person’s imagination and willingness to work.

Medicare and Medicaid penalize doctors by telling them what they will pay for each procedure…never mind the doctor office overhead and skyrocketing insurance costs. . Add to it the cost of repaying their horrendous medical school debt.

My PCP is indispensable to my health. I trust her and we are in a health care partnership. The two doctors I tried after my previous doctor died did not work out. They might have been good doctors but I didn’t like them. How can anyone form a partnership with a doctor they don’t like?
Doctoring is more than a diagnosis. For the good of our health, we should have the freedom to choose our doctor.

I saw the results of a patient forced to see a doctor barely able to be civil to her. The doctor might well have a different attitude with a patient not on Medicare and able to pay his set fees.

How many patients thrive and get better or the best they can be when forced to see doctors they don’t like or trust and vice versa?

Yes, for health care reform, but do not jump on a hurried agreement that penalizes patients, doctors, hospitals, health care workers or taxpayers and our own government in the long run.

More later… Sharon O’Hara

The Annual ATS Conference and COPD Dutch Study Rocks!

Remember that a local pulmonary doctor was ahead of the Chronic Obstructive Pulmonary Disease (COPD) and EXERCISE debate over a decade ago.

The American Thoracic Society (ATS) recent annual meeting in San Diego brought out new study results from Dutch researcher, Annemie Schols, Ph.D., of the Maastricht University Medical Center in the Netherland, according to MedPage Today.

“”I think we should shift toward a personalized lifestyle intervention” for less-advanced patients, Dr. Schols told reporters.”
The long overdue study showed that pulmonary rehab for COPDers less advanced in the disease is both cost effective and had significant health benefits adding to the COPDer quality of life.
(“Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal”).

Over a decade ago, in the waiting room of my first pulmonologist, I picked up a brochure offering local pulmonary rehabilitation for lung patients. Well, that was me, a formally fit person who had trouble breathing when I moved. Ignorance made me slow down and I stopped moving much.

When I got in to see the doctor, I asked his nurse what she thought about the program and she surprised me. “Oh, no,” she said, “you don’t qualify. You aren’t advanced enough for pulmonary rehab.”

Disappointed, when I saw the doctor, I showed him the brochure and asked what good a pulmonary rehab program was, if, to qualify, the patient had to be so far gone they have one foot on a banana peel and the other in a grave? I asked why it wasn’t possible for me and people like me to go through such a program before we reached that point.
“It is possible and I’ll make it happen,” he promised. He did make Capri rehab possible for me and I will forever be grateful to him for that..

At rehab, one older man shuffled in pulling his oxygen tank and walker and had to be steadied and helped on and off the machines. I admired him and the other unsteady patients for their efforts, but I marveled at the patience and helpfulness of the staff.

I lived in another county then and drove over an hour each way two or three times a week to attend the rehab. Sometime during the program, I had a sudden decrease in breathing ability, a setback. The pulmonologist gave me a new prescription for another medication, inhaled steroids. He offered no explanation, but would have answered questions had I known what to ask.

Additional great news from the ATS Conference, according to MedPage Today, Dennis Doherty, M.D., moderated a press conference to discuss the study and announce the Centers for Medicare and Medicaid Services must have a fee schedule in place by January 2010. The motivator is for planned changes in reimbursement for pulmonary rehabilitation programs, leading, I hope, to increased early rehab programs in the U.S. Yes!

Dr. Doherty added that the Dutch study was “unusual in that very few interventions show a four-point improvement on the St. George’s scale. “It’s tremendously difficult in these patients,” he said.”

Over a decade ago, one of our pulmonologist already knew COPDers needed rehabilitation early on. Moreover, he made rehab a reality for at least one of his earlier stage patients. Wherever you are, doctor, thank you for that.

To all the doctors who take the extra time to advise their patients how they can help his or herself improve their own quality of life, thank you.