Tag Archives: caregivers

Emergency Preparedness Seminar for Respiratory Folks in Silverdale

Learning Respiratory Emergency Care —including folks dependent on the c-pap, bi-pap, concentrators and their caregivers—yes!

Right here in Silverdale, thanks to Harrison Medical Center, learn how best to take care of ourselves during an emergency on Wednesday, 19 January 2011.

My husband and I have already learned how ill-prepared we were when every safeguard we had failed, one after the other.
Heat pumps, propane insert stove and generator.

If anyone needs a ride to the seminar in Silverdale, let me know.

Patients, caregivers and those who help us help ourselves—working together for a common goal!

Emergency Preparedness

It’s time for us to get prepared!  We’ve had a rough winter already and there may be more to come.

Let’s make a New Years commitment to ourselves and to our health; to be as prepared as possible to take care of our needs during extreme weather conditions or other local emergencies.

Come and meet with us for our first 2011 meeting and share you own personal experiences and ideas as well.

Speaker:  Laura Jull Emergency Preparedness Manager

Harrison Medical Center

Topics: One Month Preparedness Calendar

Medication, Oxygen, Extended Power Outages & Additional Tips.


Speaker: Pamela O’Flynn, Respiratory Therapy Department Director

Harrison Medical Center

Director O’Flynn has first hand experience with the importance of
emergency response and services.

Date: 01-19-2011
Time: 1:00PM
Location: Harrison Medical Center – Silverdale Campus – Rose Room

Harrison Medical Center
Phone:  360 744-6685

Harrison Respiratory Care

Dedicated To Every Breath You Take

See you Wednesday!

More later…. 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

The International COPD Bill of Rights

COPDers, Bloggers, Friends and Family

Read and take heart ..because, so far as I know, we here in Kitsap County do not have physicians nor a health department giving Spirometry testing for early detection COPD..but we can change that state of affairs by asking for it.

Why not?
Following is a simple Bill of Rights for COPDers on an international scale, meant to affect us wherever we live, in any country, city, county, urban or farm.
Help those who follow us…fill it out as best you can and send it in.

Patients, family and caregivers…

The Bill of Rights: Translation and Dissemination

1. Have you or your organization translated the COPD Patients’ Global Bill of Rights into your local language?

2. If you have translated the Bill of Rights, has it been posted on the ICC Website?

If no, please send a copy to ICC Executive Director Larry Grouse at lgrouse1@msn.com.

3. If you have translated the Bill of Rights, has it been posted on local Websites in your country/area?

If yes, please list the Websites where it appears.

4. Have you or your organization taken any other actions to promote or disseminate the COPD Patients’ Global Bill of Rights?

If yes, please describe.

5. Do you or your organization have any upcoming activities planned to disseminate the COPD Patients’ Global Bill of Rights?

If yes, please describe.

I. The right to receive early and accurate diagnosis
Early and accurate diagnosis is essential for COPD patients to take the necessary steps to improve their quality of life and lung health. Physicians and national health services have a responsibility to provide this early and accurate diagnosis. National health services should have reliable information about the number of COPD patients in their country. Physicians should be willing and able to diagnose COPD.

6. In your country/area, is spirometry readily available in
*private pulmonary specialist clinics?
*public pulmonary specialist clinics?
*private internal medicine clinics?
*public internal medicine clinics?
*primary care centers?
*occupational diseases clinics, e.g., clinics in factories?

7. If spirometry is not readily available, are peak flow meters readily available in the above situations? Please specify.

8. Are continuing medical education (CME) training courses in spirometry available?

9. Are national/local guidelines for diagnosis of COPD in place?

If yes, on what are they based (GOLD, PAL, PEN-WHO, etc.)?

10. How is COPD defined in curricula for training doctors, nurses, and other health care professionals?

11. Do reliable statistics exist about the prevalence of COPD in your country/area?

If yes, please describe and provide the source for the statistic.

12. What are the obstacles to early and accurate diagnosis of COPD in your area?

13. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved patients’ access to early and accurate diagnosis?

If yes, please describe.

14. What is the next step in your area to improve patients’ access to early and accurate diagnosis?

II. The right for information and education about COPD
People in each country should know what COPD is, its risk factors, especially smoking, and what symptoms it causes. COPD patients should be taught what state-of-the-art care for COPD involves.

15. Is any information available about public awareness of COPD in your country/area? Public understanding of the definition of COPD? Public awareness of COPD risk factors and the role of smoking in causing COPD?

If yes, please describe and give the source of the statistics.

16. What is COPD called by the general public in your local language?

17. Have any public awareness campaigns about COPD been conducted in your area/country recently?

If yes, please describe.

18. How is COPD patient education conducted in your country? E.g., is it part of doctor visits? Are nurses involved? Are there clubs or schools for COPD patients?

19. Is reliable, medically accurate patient education material available in print and/or online in your country?

If yes, please describe.

20. What are the obstacles to COPD patient education in your area?

21. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved patients’ access to information and education?

If yes, please describe.

22. What is the next step in your area to improve patients’ access to information and education about COPD?

III. The right for support and understanding
Friends, family, communities, health care providers, and health services need to provide support and understanding to COPD patients for this difficult disease.

23. Do COPD patients have access to patients’ clubs, support groups, and counseling regardless of income level?

24. Are services available to help COPD patients with their daily activities?

25. What support and protections are available to persons in your country/area who are caring for a family member with COPD?

26. Have there been any important pieces of legislation passed at the local/national level that provide support to COPD patients?

If yes, please describe

27. What are the obstacles to support and understanding for COPD patients in your area?

28. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved support and understanding for patients?

If yes, please describe.

29. What is the next step in your area to improve support and understanding for COPD patients?

IV. The right to receive care and treatment that will benefit them
Proper care and treatment will benefit patients, improve their breathing and quality of life, and will help them contribute more to others. Effective medicines, smoking cessation counseling and treatment, and good health care are essential to provide this right, as is long-term follow up.

30. What medications for COPD are available in your country?

Are these medications widely covered by health insurance?

31. What other treatments for COPD (e.g., pulmonary rehabilitation programs, oxygen therapy, surgery) are available in your country?

Are these widely covered by health insurance?

32. Are smoking cessation clinics available in hospitals and/or primary care in your country?

If yes, are the clinics free or low-cost? Are the clinics part of a national program?

33. What other support for smoking cessation is available in your country?

34. Are hospital emergency departments equipped with medications and equipment to manage COPD exacerbations (oxygene, nebulizers, corticosteroids, antibiotics)?

If yes, are these available in rural as well as urban areas?

Are these resources available in sufficient number to meet patients’ needs?

35. In primary care dispensaries are medications and equipment for COPD treatment readily available (oxygen concentrators/cylinders, nebulisers, corticosteroids)?

36. Who cares for COPD patients in your country (GPs, nurse practitioners, specialists, etc.)?

37. How is care of a patient by GP and specialist coordinated in your health care system? What are the mechanisms for ensuring continuity of care?

38. What are the obstacles to better care and treatment for COPD patients in your area?

39. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved care and treatment for COPD patients? Please describe.

40. What is the next step in your area to improve care and treatment for COPD patients?

V. The right to their fair share of society’s involvement and investment in their welfare and care
COPD patients have worked throughout their lives to earn their fair share of society’s involvement and investment in their welfare.

41. Are any statistics on quality of life of COPD patients available in your country?

If yes, please describe and provide the source.

42. What are the obstacles to ensuring that COPD patients in your area receive their fair share of society’s investment in their welfare and care?

43. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved patients’ attainment of their fair share of society’s investment in their welfare and care?

If yes, please describe.

44. What is the next step in your area to ensure that COPD patients receive their fair share of society’s investment in their welfare and care?

VI. The right to advocate with other COPD patients and supporters for improved COPD care and COPD prevention
COPD patients know how important good care is to their lives. They also know that every effort should be made to prevent others from suffering from this disease. It is their right and responsibility to advocate at every level for improved COPD care and prevention.

45. Are there COPD patient organizations in your country?

If yes, please describe.

46. Are patient groups linked with or otherwise in collaboration with medical associations in your country?

If yes, please describe.

47. What are the obstacles to advocacy by COPD patients in your area?

48. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved COPD patients’ ability to advocate for themselves?

If yes, please describe.

49. What is the next step in your area to improve COPD patients’ ability to advocate for themselves?

VII. The right to safe air and environment
Unsafe air and environment are particularly harmful to COPD patients. All health care professionals have an obligation to protect their patients from conditions that are unsafe to their health. Patients and health care providers have an obligation to fight for their rights to safe air and environment.

50. Is indoor smoking regulated in your country/area?

51. Is outdoor air pollution monitored in your country/area?

52. What regulations exist to ensure outdoor air quality/clean air in your area?

53. Are automobile emissions standards in place in your area?

54. Are open fires for indoor cooking or heating widely used in your country?

55. What are the obstacles to safe air and environment exist your area?

56. Have activities to disseminate the COPD Patients’ Global Bill of Rights led to improved air quality in your area?

If yes, please describe.

57. What is the next step in your area to improve air and environmental quality?

My answers to the above questions next time.

More later… Sharon O’Hara

Patients Be Aware. Mistakes Happen

Prescription Mistakes Happen – Patients Be Aware

I have never doubted that any prescription I have filled is the right one. Until now.
On Thursday, I learned to doubt. I discovered a medication I had been taking for a couple weeks was not the medication I should have been taking. The right one was the second prescription filled. The reason I know that is that the new pills did not look the same.

Patients and caregivers be aware and double check that the prescription you get is the right one. We cannot assume our newly filled prescription is the right one.
Ask your doctor and pharmacist how best to double-check. No one wants patients getting the wrong medication, least of all us. Patients – be aware. Mistakes with prescription medications can happen. The mistake can be deadly or worse. Check and double-check that the medication filled is the right one.
Patients must learn to question and double-check that the prescription and treatment is the proper one.
Mistakes happen but being aware might make the difference. In future, I will open the new refills immediately to be sure they are the ones I have been taking. I could have looked closer at the label… the drug names were close – one had an “o” and the other had an “a” …
I have been taking a high blood pressure drug for several weeks as a test to see if it worked and that I had no reaction from it. The blood pressure was down on my next doctor visit and had not noted any adverse reaction to it either and was given a I had the new script filled and continued to use what I had left.

Sometime last week, the skin on my upper right side became tender and sore. I developed a rash on my upper right arm and broke out in what appeared to be dark, fluid filled bug bites in the middle of bright red patches. The right side of my neck was and is stiff and sore. The rashes and pain spread we drove to the ER.
The new thing is Shingles and I was prescribed medications based on the list of medications I already take and gave the list to the doctor.

A prescription error happened but I did not discover it until last Thursday when I opened the new bottle of blood pressure medication and saw it was not the same drug.

The dilemma: the ER doc had prescribed two medications based on other medications, including the new one for high blood pressure. I would not begin taking an unknown drug not knowing the consequences.
I called the pharmacy. The pharmacist checked and said the drug I ‘should’ have been taking was the second one. He asked if I had any of the other pills left, no, but I did have the empty prescription bottle and yes, I took both to the pharmacy the next day.
The point here is not to moan about a mistake. The point is to bring awareness to patients that we must not assume anything.

What happened could have happened in any pharmacy …mistakes happen. I am sure the pharmacy has already set in new check guards so it does not happen again.

An error was made and joined an amazing set of circumstances and medical conditions that began with COPD (Chronic Obstructive Pulmonary Disease) way back about 1995.

Folks…make sure the medication prescribed is the same one you get.
More later… Sharon O’Hara

World COPD Day Celebration 2009 is coming to Silverdale!


The University of Washington’s School of Nursing, Pam Wiseman is the speaker and will be in Silverdale, Wednesday, 18 November 2009 to speak in honor of World COPD Day.

Harrison Medical Center will honor COPD Day 2009 in the Rose Room at Harrison-Silverdale, Washington from 1:30pm to 3:30pm

The Shortness of Breath subject will include discussion on strategies on what we can do to help ourselves lead a quality life with COPD.

Pursed lip breathing, exercising and all the questions you can think to ask are included. We will get answers to what we can do to best help ourselves lead the best quality of life possible and help us remain the Captain of our own lifeship. Knowing these strategies can and will make a difference in our lives.

Caregivers, family and friends are welcome.


For more information:
Pam Wiseman, Shortness of Breath Study (206)616-8993
Eric Anderson, Harrison Medical Center (360)744-6686

I am a COPDer and fan of the recumbent trike as a superb way for us to exercise; gain muscle for optimal ability to breathe….since muscle utilizes oxygen better than flab.

I will bring one of my trikes tomorrow if anyone is interested and please note that I do not sell recumbent trikes nor benefit from anyone else selling them.

Hope to see you tomorrow!
More later… Sharon O’Hara

COPD is Scream Worthy according to a Kitsap Sun Blogger.

COPD and Other Stuff …
…came about for several reasons…because people do not seem to know much about COPD, this disease seems to attract friends in the form of other diseases for the COPDer and the Kitsap Sun is willing to allow this shared adventure.
COPD is not a death sentence but it sure is a wake-up call.
I have a theory that the more informed we become about our condition and the more active we are in our own care, the better off we are. Our doctors are trained in medicine and indispensable but the responsibility for our life is ours.
There are a million things I want to say but for this first post, I am using a copy of a letter in part, I sent to my daughter when she told me that good friends had serious Emphysema hit their family.
“I’m sorry, but if they get on the right track from the beginning,(friend)may not go on to develop other ‘Stuff’.’

For starters:

Has (friend’s husband) Pulmonologist described the healing his lungs will do – the improving – for the first six months to a year after he stops smoking?

My doctor drew a graph showing the approximate lung improvement over months until the lungs have dispelled the last of the sticky smoke residue and healed until they are as good as they are going to get. His lungs will then continue normal aging.

The wonder though is that he, with full knowledge of his damaged lungs, will not be further destroying his lungs by continuing to smoke…like kicking a sick horse and adding insult to injury.

Today the idea of actually inhaling the foul smoke into my laboring lungs is noxious.

Another aid to stop smoking is for (friend) to visualize his impaired lungs and imagine inhaling the smoke into a distressed airway and down through his sick lungs. Yick!

Also, tell him to keep fighting to be the best he can be. THAT fight includes EXERCISE for a quality life. Tell (friend) not to give up and accept a role as an invalid…NEVER! (Some of the most invalid people I know have not got a thing medically wrong with them)

Tell (friend) (state) has a good teaching hospital she might want to run (husband) through for a second opinion.
(His) Primary Doctor is the key…the hub of the health wheel.

(State) also has the BEST Pulmonary Rehab Center in the whole country – right there.

That is enough for starters.

Life is not over for (husband and new caregiver, his wife)…far from it.
They are on an adventure of their lives and do not kid yourself.
Any disease that affects one member of a family affects ALL members of that family.”

Together, here, I hope we can help each other and others share hard-earned information about COPD and Other Stuff.
My comments are mine as a patient and in no way reflect medical advice. For medical advice, talk to your doctor.
Together I hope we can communicate and narrow the distance between the physician, patient and caregiver.
As Yvonne says, “We are in this together.”
Sharon Blomlie O’Hara