Tag Archives: RLS

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

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 …

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

A physician could have answered the questions that ensued.

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.

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.

Tweet This Post

February Heart Month – 911 – CK Medics and Me

Sharon O'Hara

February is Heart Month…. And I called 911 for help.

I called 911 for myself early morning a couple of Saturdays ago. I thought I was having a heart attack. I’d migrated from bed to sit right here in this chair in what is loosely called my ‘office’ next to my computer and a wall phone and waited until the pain in my throat and down into my chest subsided. Trouble is it got worse and tighter. The pain exploded in my throat and chest with every cough. Pursed lip breathing didn’t seem to help. My airway felt like it was closing.

I dialed 911 and told them how to get where I was. Afterward, still conscious, I called the Old Guy and told him company was coming.

I remember the relief when the paramedics put a C Pap mask on me and I could breathe easier – most comfortable mask I’ve ever had on… and remember the tough time they had getting me out of here –too many steps – to the unit parked in the driveway.

Thank you CK 911 responders! You were efficient and lifesaving…same with Harrison when you got me there. I appreciate the professional help, but especially those really special nurses and staff who understood that I have to maintain whatever degree of independence I have.

The Progressive Care Unit was a new area for me with – again – outstanding care. Without exception, they helped me maintain my independence even though it took longer. From the cheery “Darlin’” nurse to the incredibly kind assistants who make things work well for patients to the MD’s, Barbora Volovarova, (Attending) and Dr. Irina Case –to the well-done discharge RN, Debra Clough Russell and to the cheery Rhonda who wheeled me on out the front door to await the Old Guy bringing the gas guzzler.

The diagnosis was Bronchitis and the pain was pleurisy – the exact diagnosis the Norwegian doctor gave when I got sick in Norway in 1997. The prescribed meds in Norway 1997 allowed me to finish a tight schedule there and get me home.

Shortly after getting home in 1997 and running out of the medications, I was in Harrison and life changed forever. I stopped a 40 year smoking habit and learned the real meaning of the word “addiction” as I fought against the sudden gut wrenching cravings to smoke that continued over the following two years and occasional cravings to a lesser degree, even beyond.

I was scheduled for a stress test at Harrison, but I opted out after the tech helped me do a perfect first scan and we had several delays. The cardiologist asked about my throat and I told him the pain was still there and he kindly suggested that it probably wasn’t my heart but that the stress test would give a good base – I already have Right Heart Failure.

What I didn’t think to mention is that with all the sitting my legs, Restless Leg Syndrome (RLS) began acting up and I doubt I could have held them still for the second scan. The Mirapex I take for RLS doesn’t work like it used to. The stress effort would have been wasted without a good second scan. They planned to do the chemical stress test since it seemed unlikely I could do a treadmill testing. Too bad they don’t do water stress testing where they can get the heart pumping hard as they want without the external problems popping up – such as RLS.

The bottom line for me about Harrison is that they do not treat their patients all alike – they help each patient maintain what they are able to do and encourage that independence. For that, they are unique and a special place for patients like me fighting to maintain strength even as we are there for medical help.

I missed that Saturday’s swim session with Coach Marilyn but her lessons stayed with me in that I was able to swing both legs up on the bed and gurneys using my new found core strength and beginning muscle protection for my left hip. And we were back on track for the following Monday hour session.

I’m including a scan of a great morning tool Harrison gave me on discharge to keep track of such things as heart, weight to catch a heart attack before it happens. I’ve added a blood/oxygen check (Nonin) column and check the time too.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002347

I use the following sheet every morning to keep track of what is going on and will take it to my next doctor appointment.

The single one thing I will change on the sheets I see every day is to change the “Heart Failure Log” to Heart HEALTH Log.

As a patient, I do not want to see “Failure” before me every morning. Heart HEALTH Log is more accurate.

More later…. Sharon O’Hara

Tweet This Post

COPD, Professor William MacNee Clicked for this COPDer

Sharon O'Hara

FLASH

Ref: Early detection public COPD Spirometry, World Spirometry Day and World COPD Day

I called our health district yesterday and spoke with Cris Craig, Kitsap County Health District Public Information Officer. She couldn’t answer my question about the health department offering free spirometry to the public. She did say in a cheerful voice she would call in about three weeks with a response. THAT is good news and she didn’t ask what COPD was – even better.. A hopeful sign and may mean that Spirometry will be offered and made available to the public. I believe in miracles.

Professor William MacNee and the Royal Infirmary of Edinburgh Scotland, UK website has superb graphics – the best explanation of COPD (Chronic Obstructive Pulmonary Disease) I’ve seen in one place. His ‘The Latest Trends in COPD Research’ graphically shows why early detection Spirometry is important.

For many of us COPD is an ongoing magnet for other disease, including some really difficult stuff. COPD and lung disease can be the beginning of a long list of personal medical challenges expanding the patient’s medical disease library. Whatever needs to happen to avoid COPD in your life get tested for early detection and do whatever is needed to get it done.

My son, Al and I were visiting family in Northern Norway in1997. I didn’t know then my 40 year smoking habit was almost over. And so was I. I was beginning to feel sick. The day after this picture was taken, I had to see a Norwegian doctor. She examined me and prescribed medications for Pleurisy and Chronic Bronchitis. The medication worked, the pain receded and we were back on schedule. Within a couple weeks after this picture was taken and five days after returning home, I was in the hospital.

Life as I’d known it was over.

COPD is a friendly disease. For me, once Emphysema (COPD) got settled in my lungs and got comfortable, she began to invite her Other Stuff Disease buddies for a sleep over. Trouble is, they stayed over and didn’t go home. They joined COPD trying to play Havoc with my health and life.

Following COPD was an open lung biopsy and Sarcoidosis – Sleep Apnea – RLS – Psoriasis – Venous Stasis Dermatitis – Cellulitis – High Blood Pressure – Lymphedema – and bone-on-bone Arthritis, left hip followed – to name a few.

Early detection Spirometry can stop COPD early – before it’s too late. Ask your doctor.

This is where it gets tricky. Health care is a huge problem. COPD generally takes twenty years developing before a person mentions symptoms to the doctor and by then about fifty percent of the lungs are destroyed….leading the patient to a long slow smother and the taxpayer choking form the cost.

Offering free Spirometry testing for early COPD detection gives the individual warning. If the problem is not genetic, it can be turned around. Telling isn’t enough – SHOW people what COPD can do to them and their families. Let them meet willing patients who can show and tell… a real reality show.

Exercise works and muscle utilizes oxygen better than flab. We can breathe better and move easier. Exercise and understanding COPD gives us a quality of life back – to be the best we can be. The recumbent trike takes us places we couldn’t easily go without one – fun stuff, building muscle at the same time. We must keep moving … ask your doctor.

I did not qualify for lung reduction surgery or I would have opted to get it ..not enough good lung and I heard rave reviews from patients who had had one. One COPDer told me the lung reduction surgery restored his life back to ‘normal’ and lasted about five years before time and COPD danced ahead. Ask your doctor about it.

Pursed lip breathing training is a must for COPDers – it keeps us out of the panic mode and out of the hospital. It has for me…and I tested it with my oximeter.Talk to your doctor about pulmonary rehab. It is never too late to get better through our own efforts…what does your doctor say?

Photo taken by the photographer who traveled with the Trek. This photo shows me on my recumbent trike flying the COPD/EFFORTS safety flag and pedaling over Deception Pass with the American Lung Association of Washington’s three day bike ride – the Trek Tri Island.

It was the first time I had been away overnight from my house in seven years – since Harrison Hospital in 1997. A slow trike rider, it is thanks to the wonderful volunteers who hop scotched me and my trike ahead of the other 200 plus bike riders time after time that enabled me to pedal 50 miles of the 137 mile trip. I felt free again.

Key motivators were the Shortness of Breath Study at the University of Washington Medical Center that I was lucky enough to qualify for and my online support group, EFFORTS. Proof to me that educating COPD patients work.

Stroke patient, Mary Griffith and her butterfly and gold star fingernails caught my eye the other day – more about Mary and husband, Doug later)

Kitsap County Health District … Will you be the first county health district in the nation to see the fiscal benefit of early detection Spirometry to protect citizens of ALL ethnic background.

The Kitsap County taxpayer and COPD future could rest in your hands.

Thank you Professor William MacNee for a great COPD informational website and allowing me to use it here.

http://www.efanet.org/activities/documents/WMcNeeLatestTrendsinCOPDResearch. pdf

More later… Sharon O’Hara

Part 4 of 4

Tweet This Post

Restless Leg Syndrome, Breast Cancer Prevention, Radiation Treatment Hope for Tomorrow

Sharon O'Hara

Restless Leg Syndrome (RLS), Breast Cancer Prevention and Radiation Treatment effectiveness or, What do three students from the University of Alabama have in common?

Why are they so important?

For those with RLS or Breast Cancer and those who have experienced Radiation Treatment, it is an easy answer.

The more research leading to discoveries, treatment and cures, the fewer future patients.

Atbin Doroodchi, 20 is a member of the Science and Technology Honors Program and an undergraduate researcher in the lab of Yuqing Li, Ph.D., investigating a gene’s relationship to my particular interest, restless leg syndrome.

Shweta Naran Patel is 21 majoring in molecular biology. She is a member of the University Honors Program and undergraduate researcher for Trygve Tollefsbol, Ph.D studying the natural compound role in breast caner prevention.

Tamara Michelle Burleson, 20 is majoring in Chemistry and a Supplemental Instruction Leader. She is investigating the role between certain proteins and radiation treatment effectiveness in the lab of Christopher Willey, M.D..

The Barry M. Goldwater Scholarship and Excellence in Education Foundation have named Doroodchi, Patel and Burleson 2010 Goldwater Scholars.

The faculties of colleges and universities select the Goldwater Scholars based on academic merit and the one and two-year scholarships cover school expense up to $7,500 a year.

Heartfelt congratulations to all!

http://main.uab.edu/Sites/MediaRelations/articles/75341/

More later… Sharon O’Hara

Tweet This Post