COPD and Other Stuff

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Posts Tagged ‘BiPap’

New York Times Critic James Oestreich and a Lung Patient

Friday, September 2nd, 2011

Do handicapped people belong in public where they or the noise of their life giving oxygen machine might disturb the audience in a public performance?

Well. I’ve got a few medical issues and use a facemask attached to a tube hooked to  a BIPAP with an concentrator (oxygen) bleed in and want to throw my two cents worth in the mix here.

Tell it like it is  - like New York Times critic James Oestreich turned his review of  a concert at Lincoln Center featuring the works of Mozart and Stravinsky into a thoughtful, regretful comment of the noisy oxygen devise the man in the seat  behind him wore that was so distracting that it disturbed his focus on the concert.

One symphony concert sticks in my mind as one of the most remarkable musical experiences I have had.  The Seattle performance featured a Norwegian pianist, a prodigy.  The music flowed, I closed my eyes to absorb it, and the music filled my soul.  Not a sound, not a cough tickled the edges of the musical performance only the thunder, lilt  and scale of the throbbing sounds filled the air until I opened my eyes to center stage where the pianist and piano seemed melded into one instrument, a flow of sound.  I could see his hand move over the keys but it seemed unrelated to the sounds that seemed to pour from him as readily as the glistening sweat dripped from his brow.

Not a sound disturbed the outpouring of music – my sneeze froze in time as the pianist played to a stunned, silence audience.

Memory of that performance fired me into responding to the New York Times Oestreich critique – especially the astounding negative backlash from folks I’d formally believed to be sensitive and considerate.

The fact is I know people who will not wear their hose in nose oxygen in public.  Those folks do not understand their prescribed oxygen use sustains and feeds their organs, including the brain.  Deliberately exerting without the prescribed oxygen is to die slow little deaths by depriving your body, your organs of oxygen.

To stay home for fear of going out in public is to slowly progress into another kind of death – of growing isolation for the sake of vanity.

Being considerate and thoughtful of others’ right to enjoy a performance best appreciated in silence is common courtesy.

What do you think?

http://well.blogs.nytimes.com/2011/08/19/distracted-at-the-concert-hall/

Thanks for reading… Sharon O’Hara


Do Lung Doctors in Kitsap County Neglect Support Group Patient Education, part 2

Monday, August 15th, 2011

Obstructive Sleep Apnea is serious.  A recent Swiss study shows that even a short break in using the CPAP is harmful:

“Within 14 days, they had significant increases in heart rate and blood pressure, and deterioration in vascular function.  The results suggest that even a short break in CPAP therapy has a negative effect on the cardiovascular system … OSA patients need to continuously use CPAP….” …according to US News and World Report.  Presumably, that goes for those of us on the BIPAP machine too.

Then there is  …

  1.  Lack of treatment can lead to mental confusion, dementia and Alzheimer’s.

A physician could have answered the questions that ensued.

  1. New Medicare rules say the patient must be on the machine 4 hours a night for the entire CPAP or BIPAP rental period – no matter what – or lose the machine.

As a patient with RLS, I take meds for – Mirapex that no longer works – that is worrisome.  The fact is sometimes I cannot stay in bed where the only relief from RLS is to stand up and/or walk.

When I asked about the 4-hour Medicare rule when a person has other medical conditions, I was told I had to make the choice – the BIPAP or RLS. – Not a choice at all for me and many patients like me.

A plus here is that the last session was so bad that I spent the entire night standing up using my laptop at the kitchen counter and came to the conclusion  I think a food allergy may play a part in my RLS problem.  I will talk to my doctor about it.

Harrison has a superb respiratory department team – professional people, open and transparent.  Patients need to be educated and Harrison is stepping up with professionals educating us….but we need more physician involvement to answer the tough medical questions for pulmonary support group patients.  In Kitsap County, it is past time for physician pulmonary education now.

COPD and Sleep Apnea is a huge medical dilemma where ignorance might well be bliss for the patient…but not in the long term.  What happens when we do not get oxygen to our organs?

For starters, we lose brain cells without the oxygen to sustain them.  Our lessor organs begin to fail because the larger organs grab the available oxygen first.

Incontinence is only one of many issues that can occur from lack of oxygen to organs…

No doubt, most of my brain cells are long gone so I have one less thing to think about.  My point here is to suggest you not to lose yours if it can be avoided.  Patient education is key to having the best quality of life possible with any medical condition and we NEED lung support group physician involvement.

http://pugetsoundblogs.com/copd-and-other-stuff/2011/08/13/do-lung-doctors-in-kitsap-county-neglect-support-group-patient-education/

The U.S. National Heart, Lung, and Blood Institute have more about sleep apnea treatments.

Copyright © 2011 HealthDay. All rights reserved.

http://www.nhlbi.nih.gov/health/dci/Diseases/SleepApnea/SleepApnea_Treatments.html

http://health.usnews.com/health-news/family-health/sleep/articles/2011/08/12/sleep-apnea-makes-quick-return-when-treatment-stops

Better Breather’s meeting Wednesday… http://www.harrisonmedical.org/home/calendar/4897

If anyone needs a ride, let me know…the car is super clean.

Thanks for reading… Sharon O’Hara

 

 

We all cheer for the GREAT MEDICAL CARE  already in Kitsap County…and for more Pulmonary Physician support group education.


Cold in Silverdale… BI Senior Center Rocks

Sunday, January 9th, 2011

We gotta love the Bainbridge Island folks – again!  Here they go…this time their seniors are looking out after the folks caught out in the cold during emergencies…and prompt the question:  what happens to folks on oxygen or c-pap or bi-pap machines when the power goes out?  (corrected)

Some folks have a concentrator hooked up to bleed into the bi-pap machine and supply oxygen to the machine that keeps the airway open.

What happens to well prepared, emergency trained folks when their power goes out?  Some prepared folks have a generator they skipped a lot of evenings out to buy.

Our generator is geared to kick on five (thirty) seconds after the power dies…and it did.  Trouble is, it stopped after ten minutes or so.

Without the generator, it didn’t matter that the heat pump didn’t work.  We stopped caring that the technician scheduled to fix our heat pump hours earlier was stuck on BI and couldn’t get here.

It also didn’t matter that the propane company scheduled to deliver propane for our two tanks couldn’t negotiate the snowy, icy hills to get here…making the fact our propane fireplace insert didn’t work immaterial…we didn’t have enough propane to make it run.

For the first time I understood the saying, “Whatever can go wrong, will go wrong.”

The first night of a declining temperature, my husband, the Old Guy, worked out in the cold, freezing temperatures to fix the generator but first, he drove down to Sears in the big 4-wheel drive suv gas guzzler to get the part he needed.

He found Sears closed up early, then drove past the open Silverdale Firestone and lucked out.  What were the odds Firestone would have the exact size tubing he needed?  The clerk didn’t know but the owner not only found it, he gave it to him – no charge!  THANK YOU, FIRESTONE!

The Old Guy worked on the generator until 1300 (1:00AM) the next morning without luck.  At any time, we expected/hoped the power would return.  With cable phone, it didn’t work either.

Between a Nordstrom wool hat and REI, LL Bean layered clothing we were okay for a while.  I hoped to get the bi-pap and concentrator working before sleeping a second night without it.

The value of a down blanket cannot be underestimated.  I went to bed cold but woke up warm.  Getting out of that warm bed and dressed was a speedy process…both nights.

The temperature inside steadily dropped to a low 41 degrees and we began thinking of leaving with the dogs and the machines that helped supply a quality life – the  bi-pap and concentrator.

I thought about the homeless.  I wondered how other people right here in Kitsap County, who needed machines to live, managed without electricity?

What do we do for them?

Not everyone can get a generator.

Bainbridge Island Senior Center Folks – you rock!

“A group of Bainbridge seniors has urged the city to develop an overnight emergency shelter for years.

The Nov. 22, 2010, snowstorm served as a reminder of the need, but the seniors aren’t waiting around for the city this time.”

http://www.kitsapsun.com/news/2011/jan/08/bainbridge-senior-center-members-stepping-to/

More later…. Sharon O’Hara

Happy 70th, Kentucky Girl!


The Sleep Apnea Story is Now Restless and Worried in Kitsap County. What Happens to Oxygen Deprived Cells?

Sunday, August 8th, 2010

The new wrinkle in the Sleep Apnea Story is the apparent fact that patients are dropping their sats during the night wearing their c-pap or bi-pap machine and unless they do another at home sleep study wearing their machine – they don’t know it – nor do their doctors!

How can it happen the patient is happy as a clam at high tide thinking the machine is keeping their airway open so they can get the sleep needed when their oxygen saturation drops into the sleep basement during the night and killing off cells from lack of oxygen!????!

What good is any sleep machine when it does not register the patient’s sats and report it to their doctor?

I have a longer story to go with these questions…but for now – I want answers. How many other sleep apnea folks have had, am having the same sat drop and don’t know it?

They know they are declining…and assume the decline is natural considering their medical condition and normal aging.

Again. What good are the machines if they are not conveying the oxygen saturation picture for each sleeping patient to their doctor?!

Read up more from Chris Henry’s great article in February…

http://www.kitsapsun.com/news/2010/feb/27/in-the-search-for-shuteye-many-come-up-empty/?comments_id=250497

More later…. Sharon O’Hara


Untreated Sleep Apnea + Heart Disease – Connected?

Thursday, March 11th, 2010

For those on the “should I, should I not get a sleep study?” fence, please read the following.

According to the Center for Sleep and Respiratory Neurobiology, University of Pennsylvania School of Medicine, Philadelphia, PA a connection may exist between sleep apnea and heart disease.

Although not conclusive and lengthy studies to determine if sleep apnea and cardiovascular disease are connected are a long way off, it is suspected that sleep apnea is a risk for heart disease.

I am next to the last person in the world to presume telling anyone else what to do but do offer information to investigate for yourself.

That said, I have practical experience with sleep apnea. The sleep study I had years ago led to me wearing a bipap and now, a recently added concentrator is connected to my bipap machine.

I’ve known about the right heart failure because we’ve been ‘watching’ it for some years. I did not worry about it though because I figured the other side of my heart must still be healthy. Remember, I am a patient, not a medical professional.

A week ago, I was told I have ‘congestive heart failure” …quite another thing. That involves the whole heart. I looked it up.

The point of this little tale is to say I have sleep apnea and developed a heart condition suggesting to me there may well be a connection.

{ It is proposed that given that CPAP treatment for obstructive sleep apnea is highly effective and essentially totally safe, and that the evidence is suggestive that sleep apnea is a risk factor for cardiovascular disease, then we propose all patients with severe sleep apnea should be treated to reduce cardiovascular risk….}

Best wishes fence sitters … jump into health if you can.

http://www.ncbi.nlm.nih.gov/pubmed/19249449?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=2&log$=relatedreviews&logdbfrom=pubmed

More later…. Sharon O’Hara


The Strange Ways of Sleep Apnea

Thursday, September 3rd, 2009

Sleep Apnea is a strange medical condition usually requiring a CPAP OR BIPAP machine to draw in room air through filters into a hose attached to the facemask we have harnessed to our head. The facemask confines the air and pushes it through the open airway into happy air gulping lungs. The machine lets us sleep.

The latest and greatest news first is that a small clinical study showed the CPAP machine might help the heart function better in sleep apnea patients. http://www.medpagetoday.com/MeetingCoverage/ASE/tb/14658

What did the study indicate about the BIPAP patients? That is a good question to ask Harrison Medical Center’s lead Sleep Specialist, Daniel Moore, at the next AWAKE sleep support group meeting on the 17th…

Another study shows something amazing to me…

In an eight-year study funded by the National Heart, Lung and Blood Institute, the moderate to severe sleep apnea patients appear more likely to die from any cause, regardless of age, gender, race, weight, smoking history, or other medical conditions…

“… It is still unknown whether treating sleep apnea reduces risk of death and cardiovascular disease. …

(SHHS) enrolled more than 6,000 men and women ages 40 years and older at multiple centers around the U.S. to determine cardiovascular and other consequences of sleep-disordered breathing…. researchers found similar relationships between sleep apnea and deaths related to coronary artery disease.

They also found an association between the lack of oxygen that results when patients with sleep apnea momentarily stop breathing and all-cause mortality. But they found no relationship between mortality and waking due to apnea….

…the researchers cautioned that the study had several limitations. …might have introduced some bias into the study…. they noted that this study was the largest of its kind to date…. carefully collecting data on sleep, breathing abnormalities, and a wide range of other health factors….

…”Given the high and likely increasing prevalence of sleep-disordered breathing in the general population, additional research in the form of randomized clinical trials should be undertaken to assess if treatment can reduce premature mortality associated with this common and chronic disorder,” the authors wrote.”
The authors are Dr. Naresh M. Punjabi and co-investigator, David M Rapoport.

Punjabi N, et al “Sleep-disordered breathing and mortality: A prospective cohort study” PLoS Med 2009; DOI: 10.1371/journal.pmed.1000132.

http://www.medpagetoday.com/Pulmonary/SleepDisorders/15574?impressionId=1251401547027

More later… Sharon O’Hara


Sleep Apnea Gets Support from Harrison Medical Center

Thursday, September 3rd, 2009

The next Sleep Apnea (AWAKE) support group meeting is Thursday, 17 September 2009 at the Harrison Annex, 750 Lebo Blvd., Bremerton. The quarterly meetings run from 7 to 9 pm.

AWAKE (Sleep Disorders Support Group) is a strong support group for individuals and families.

A free CPAP or BIPAP machine pressure check is available at the quarterly meetings…a service well worth bringing your machine from home.

The program features Harrison Medical Center’s new lead Sleep Specialist, Daniel Moore, speaking on Sleep and Heart Disease. Questions and answers are welcome after the thirty-minute educational segment.

Stat Medical is the program sponsor and will show off the latest CPAP machine during the second half of the program.

I am glad to know the latest research and development and especially glad when local companies are eager to bring the best to their patients.

I once called a local oxygen supplier of the machines to ask when they would get in the latest BIPAP machine I had read about. The short answer was never!
I will give you the long answer to the same conclusion only if asked. To be fair, the company did elaborate on how they arrived at the’ never’ response… and the patient loses.

I use a BIPAP machine but still look forward to seeing the latest; the future is here – now – CPAP machines knowing a similar BIPAP is no doubt coming later.

We probably look funny wearing a facemask attached to a tube that runs back to the noisy machine that helps us sleep, in order to live, but it is a life saving good funny.

Now is a good time to reiterate that I speak only as a patient, not a medical professional. My comments come from experience, my own or others and the latest research.

The latest study in Sleep Apnea is good in the sense that now the high mortality rate is known for Sleep Apnea’ites, a study using that information, to find a cure or treatment, is sure to follow.

More later… Sharon O’Hara


Sleep Apnea, Humidifier, Mask and Blood

Friday, August 21st, 2009

Speaking of Sleep Apnea and sleeping with a mask – reminds me of another first on the morning some months ago, I awoke feeling liquid inside and around the outside of my mask.

I shook my head, ripped the mask off and turned on the light. Blood was everywhere. Blood smeared and puddled inside my mask, over sheets, pillow, and worse, smeared over a brand new white down cover.

The blood, some dried, looked worse than it was streaked over my face, hands and arms. I felt fine.
I’d been sleeping without the humidifier only for a short time wondering if using it really made a difference.

On my next doctor visit, I told her what happened and she thought the nosebleed could have been because my air passages were too dry. I hooked it up again.

A few days earlier though we’d had a family dinner (Mother’s Day, I think), something stuck me so funny I laughed until my stomach hurt and the back of my head felt like it was splitting in two… a massive headache.
I have had nosebleeds before but never while sleeping, much less wearing a mask covering my nose.

Headaches are awful things other people have…not me…until COPD and Other Stuff give me one when I laugh too hard. No other time…only those rare times something is so funny I laugh until tears roll and stop when the back of my head pounds in pain.

I know other people have had the same experiences – you are not alone, will you talk about it?

More later… Sharon O’Hara


Sleep Apnea BiPap/CPap Distilled Water Clog Lungs? Update

Wednesday, August 19th, 2009

Update:

My husband called the KCHD this morning. They recommended Twiss Analytical Incorporated in Poulsbo as the only company in our area to analyze water. My husband called and left a message.
Later Tom Maziarz of Twiss returned the call and I explained my concerns. Tom brought up a couple of points where contamination could have occurred.

• Filters
• The inside of the distilled water container itself might not have been sterilized
• Distilled water does not mean sterilized water

According to the company who services the BiPap, the filter hasn’t been changed enough.

When the BiPap/CPap is turned on the air from the room is carried from the room air through the filter into the short hose from the machine to the water humidifier then out the tubing the facemask for the Sleep Apnea patient to inhale.

If the filters are clogged with dust and debris, that is carried into the patient’s lungs.

I did not change filters until I saw dirt on the white filter…sometimes a couple months from the last filter change and did not order anything unless I needed it. Regards the filter, I had to see visible dirt before replacing it. Yes, Medicare paid for it, but thrifty taxpayers don’t get what isn’t needed. In six or seven years, this humidifier is only the second.
I poured the remaining humidifier water into the boiled and sterilized glass jar (lid too) as Mr. Maziarz suggested and Chuck drove the items to Poulsbo for testing.

Am I overreacting to the strange white blobs in water I inhale? Maybe.
I’ll have the preliminary results Friday…

More later… Sharon O’Hara


Sleep Apnea Patient Wants To Know…

Monday, August 17th, 2009

“For treatment of sleep apnea, patients using CPAP machines that have a humidifier are instructed to use distilled water so they do not inhale any impurities from non-purified water.”

Many of us use the CPAP, or as I do, the BiPap to allow us to sleep and keep our airway open.
I have been using distilled water dated February 2005…clearly out of date but didn’t worry about it until recently when I again found a white’ish glob in the water. It is the end of the bottle but I’ve got three or four more sealed distilled bottles just like the last one.

I have been using the out of date distilled water in my BiPap humidifier and found white globs floating around in it. I cloroxed and washed the humidifier. tubes and mask the first time, then threw away the remains of the gallon container

A few days ago I emptied the remains of the second distilled water gallon jug and saw a small glob drop into the humidifier.

I pulled out the remaining sealed distilled water jugs but cannot see through the rough plastic to be sure the water is clear.
The expiration dates of the bottles are February 2005. I will not use them, but intend to call the Kitsap County Health Department. I hope that either they or someone else can analyze the water in the sealed containers to be sure that a sealed container labeled Distilled’ is still good.

The water and glob in my humidifier needs to be analyzed as well…I want to know what I have been inhaling the past few months.

A couple of questions:
1. How many, if any, Sleep Apnea folks have experienced the same thing just described?
2. How many of us use tap water, not distilled water in the humidifier?

Sleep Apnea folks, stay alert and aware of what goes into your humidifier. The lungs you save may well be your own.
Tap water could be the solution…I’ll keep you updated.

More later, Sharon O’Hara


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

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