Tag Archives: University of Washington

Does a tumor mean Cancer

Yesterday I graduated from Harrison Home Health services; an organization I didn’t know existed two months ago and where I learned firsthand that Kitsap County has the greatest group of  RN’s and LPN’s                     on this planet for medical home care.

My June 11, 2012 belly tumor operation at the University of Washington was a rip roaring success, thanks to surgeon, .Renata R. Urban, MD and her superb medical team.

Six days after the operation I returned home to husband and dogs and into the caring, capable hands of the Harrison Home Health services team.

The Harrison Home Health services team followed doctor’s orders exactly – a team care RN or LPN came every three days to change the dressing, including weekends.  The vacuum machine hooked to and inside my belly became my best friend 24/7.

At 73, I am lucky to be alive.  I’ve learned several health lessons along the way since 1997 – the key one being to continue to do whatever I can to promote early detection Spirometry testing for COPD.(Chronic Obstructive Pulmonary Disease) the third leading cause of death behind heart disease and cancer.

Getting COPD for many of us means taking a nosedive into the immune system and developing other unpleasant medical conditions. COPD is slow developing, taking about twenty years to develop symptoms enough to tell your doctor.  By then usually 50 % of the lungs have flipped from the healthy state – they are destroyed.

The fact is I was a healthy physically fit person until I was hospitalized with COPD in 1997.  Since then I have gathered one disease after another.

This latest – a fluid filled belly tumor squeezed my lungs making it harder to breathe.  It squeezed everything in its path and seemed to shut down my system with a growing hard belly and pain especially in my bone on bone left hip until I reluctantly shuffled from place to place. I canceled and rescheduled doctor appointments thinking the pain would ease with time.

As time passed and my ability to get around decreased, Chuck called various agencies in Kitsap County thinking Kitsap County must have public transportation with a lift available for patients trying to get to medical appointments.  The problem was I could not lift my left leg to step up and couldn’t use the right leg either – too painful on my left hip.  I could not lift it…only pull it after me.

We discovered one source in Kitsap but it would cost us over $400. to drive around from  Poulsbo through Tacoma to the University of Washington Medical Center for my lung appointment.

It felt like something was growing in my belly but the only possibility was impossible so I shrugged it off to imagination.  I never imagined a tumor nor mentioned it to my doctors.

Funny thing, a complete physical might well have discovered the hard as a rock-growing belly and tumor, had I not sworn off getting physicals.

It was only when I tried to cancel and reschedule my third week canceled appointment in a row with my pulmonologist, Christopher Goss, MD at the University of Washington Medical Center that I was told ”…couldn’t reschedule for the foreseeable future…” ( the doctor was off to Europe the end of the week)

I told my husband we had to make that appointment no matter what happened because I didn’t think I could manage much longer.  We HAD to make that appointment and I asked him to get what I thought would help get me into the Suburban.

It included tying a rope across the back of the front seats to pull me into the back seat once I shuffled my way up the dog plank and it should balance me into turning to sit down.  The plank was supported by the borrowed Poulsbo Wal-Mart milk crates he placed underneath the plank.

I shuffled up the plank aided by my walking sticks but the rope failed after I pulled myself inside and let go of one end.  The rope wasn’t tied off and I fell forward and twisted with my neck strained across the top of the back seat.

As soon as I could talk, I asked Chuck to get in and drive “We’re making my lung appointment…we’re going to Seattle and ferries don’t wait.”

At the UW’s parking garage, Chuck ran to get a wheelchair and I pulled myself out of the car and into the chair.  He raced us to my appointment on the third floor.

I told Dr. Goss about my hard belly and the pain.  Thank heavens he looked.  When my hard belly wouldn’t budge, Dr. Goss scheduled an x-ray and blood testing.  The x-ray showed up black and by the time Chuck wheeled me out of the blood lab, Dr. Goss was there and told us I had a room and that an ultrasound was scheduled in a few hours..

Most medical folks are cool about letting me take photos and allowing me to use them here once I explain about my purpose –  COPD and Other Stuff.

Its important that people understand that COPD is only the beginning – an opening door to really nasty, painful medical conditions that follow for too many of us.

Ask your doctor for an early detection Spirometry test.  Please.

COPD itself is a long slow smother – not painful.  Some of the medical Other Stuff can be really nasty.

Renata R. Urban, MD – Assistant Professor 

Department of Obstetrics & Gynecology – Division of Gynecologic Oncology

Seattle Cancer Care Alliance

Following are the photos Dr. Urban sent taken during the operation.

Tumor weight: 1,881 grams

Tumor weight:  1,881 grams

Somehow, I thought of operations as messy and bloody – see the tumor?

The pain from the tumor and the 1.5 gallons of black fluid they drained out twice had taken over my life.

The wonderful team of doctors – and their ability to verbalize with patients was superb…

Great doctors and teamwork

Dr. Urban and team – thanks!

I think this was the pain medicine machine that was available to me checked by a helpful nurse.

I had super docs with a great patient connection.  The gowns were worn by everyone who came into my room – MRSA.

Molly Blackley Jackson, M.D. – Attending Physician

Medicine Consult Service, Division of General Internal Medicine.  UW Medicine

Dr.Salahi will be a wonderful Radiologist if patient rapport matters.  He did a super job of making me feel at ease during an intensive pre-patient interview.  I am glad for the opportunity to meet him on his last day in Internal Medicine.

Dr. Jackson was a bright spirit this day and every time she visited after the operation.  She and the other docs were incredibly verbal, friendly and informative…Just what this patient would order.

Thanks for reading…Sharon.

Part 2 of 4     Next time… the machine that acts like a sump pump was inserted into my belly and more ….

Dr. Halligan and Harrison Medical Center Angels, Part 2 of 3

Our recent tragic killings and deaths make me doubly grateful for the incredible people and treatment I received from our hometown hospital and staff at Harrison Medical Center.

Those of us who have been patients there over a length of time know Harrison’s greatest assets are in their staff.  Their nurses and aides, many named Elizabeth and one each named Joseph and DanielJoseph is notable for nursing skills and his uncanny ability to find anything….even a bridge….as in my missing two-tooth bridge.  He found it in a little container with “?” on the lid.

Nurse Elizabeth on 3N is only one example of innovative, creative thinking.    

 

Look at the contraption she put together to take the pressure off the bottom of my left calf to lessen the pain of the open weepy lesions and help it heal faster. The devise worked so well that when I was shifted down a floor they wheeled me downstairs right on the bed.

Nurse Sylvia on 3N brought me the Kitsap Sun newspaper every morning she worked.  I always knew she was on shift when I awoke and spotted the Sun on my bedside tray.  When I was moved to the private room on two – her spirit lifting thoughtful placing of the Kitsap Sun on the bedside table continued and never failed to make me grin in thanks.

A complication was the UW positive testing for MRSA.  You do not want it – hospital visitors do not want you to have MRSA either.  Gowning up and wearing rubber gloves to visit a friend in the hospital might well cut down on regular hospital visits.  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004520/, http://www.mayoclinic.com/health/mrsa/DS00735  

Dr. Halligan, Doctor’s Clinic in Silverdale, treated my leg daily in the hospital…he never failed to continue his daily treatment and re-wrapping of my lower left leg. 

(I am hoping to go home tomorrow from rehab at Martha & Mary’s Rehab Center in Poulsbo.  I have not been home in 8 weeks).

More later.

Thanks for reading…. Sharon O’Hara

Dr. Halligan and Harrison Medical Center Angels, Part 1 of 3

I am writing this from a hospital bed on the cancer floor at Harrison Medical Center in hope someone will take note what edema can and may do to those who ignore it.

Also, I’m writing in heartfelt thanks to Dr. Halligan, Internist/Surgeon at Silverdale Doctor’s Clinic who saved my life and leg recently by taking over failed treatment for my Lymphedema/Cellulitis/Edema filled legs and painstakingly, day after day treated and changed leg wraps.

Dr. Halligan patiently explained my left leg needed debriding to remove the dead skin, much as burn victims and he couldn’t tell what was under the surface dead skin or how deep the dead tissue went. This four-month pain riddled sleep deprived patient gratefully lay in a bed at Harrison Bremerton 23 hours a day, 7 days a week. Four weeks total this Thursday.

Tomorrow, Wednesday, I am moving to a rehab place for rehabilitation and further healing.

I battled without success since early September the Cellulitis/Edema in my left leg until my right leg reddened with infection and edema and began the water blisters that experience taught would lead to lymph fluid running down my lower legs, scalding the skin it touched and spreading the poison…

Chris Goss, MD, my lung doc at the University of Washington Medical Center straightened out the Restless Leg Syndrome medication problem so I could sleep if the pain eased.

Edema patients  – PLEASE – check out the following photos of the latest rise and fall of my edema filled legs and ask yourself if ignoring edema is worth it.

Dr. Halligan – thank you!

More next time on Harrison Medical Center’s Angels in disguise.

….thanks for reading.  Sharon O’Hara

Thanks for reading…Sharon O’Hara

Now go save a life – yours – Spirometry early detection testing

Spirometry is the easy, fast, inexpensive method to check for early detection COPD (Chronic Obstructive Pulmonary Disease) and enable the patient to STOP the developing COPD in its tracks. 

So, tell me – why don’t primary care doctors give the test when it could save lives from the third leading cause of death in the US?  In addition, stop the long, slow smother…

When will the Public Health get involved?

The doctors I asked were candid and claimed most patients will not change their environment even if their environment was the cause of the COPD to avoid the further continuation of the beginning of COPD.

Maybe the doctors I spoke to are right.  Maybe the patients have not seen what happens to the COPDers who go on to develop other medical conditions.

Perhaps some patients would not make the changes needed but others would if given the opportunity to decide.  However, without offering the test , the doctors chose for them.

I found the following straightforward Spirometry information when I was goggling for something else.

 

Spirometry is an affordable and reliable method for pulmonary function testing. This test carries no risk, requires only four minutes of patient time, on average, and is the only test available to the primary care physician for the early detection of chronic obstructive pulmonary disease (COPD including emphysema and chronic bronchitis), asthma, and other chronic lung diseases.

The National Asthma Education and Prevention Program (NAEPP) recommends spirometry as an essential component of asthma diagnosis and treatment in the primary care setting, yet fewer than 20% of primary care providers report routine use, a proportion that is even smaller among pediatricians than family physicians and internists.

    National guidelines for asthma and COPD recommend routine spirometry and research has shown that nearly one-third of pediatric patients are misclassified in terms of asthma severity without the objective measurements of spirometry. Learn more here (KING 5 NEWS Seattle).

The COPD Foundation call spirometry the gold standard for initial pulmonary function testing allowing detection of the disease at an early stage, when it is most amenable to treatment and perhaps reversal. Nonetheless, about 40% of primary care doctors do not have a spirometer in their practice and of those that do, one-third do not use them routinely.

    Starting in 2009, the Healthcare Effectiveness Data and Information Set (HEDIS) requires spirometry testing in the assessment and diagnosis of COPD. These HEDIS measures are required as part of the National Committee for Quality Assurance (NCQA) Accreditation Process for Commercial Health Plans.

The truth about spirometry

Myth: Spirometry has dubious value.

Reality: The National Lung Health Education Program (NLHEP) states that spirometry is one of the best clinical tests available for detection of lung disease and is better than blood pressure as a predictor of heart disease.

Myth: The test takes too long.

Reality: Spirometry can be completed in the primary care office in four minutes, on average.

Myth: The equipment is bulky and expensive.

Reality: While previously true, machines today are smaller for portability and available for under $2000. Hand-held office spirometers are developed with user-friendliness in mind, making them acceptable for use in a variety of primary care settings.

© 2009 University of Washington

interactive Medical Training Resources

University of Washington

Box 354920

Seattle, WA 98195-4920

T: 206-685-9699

F: 206-616-4623

imtr@u.washington.edu

http://depts.washington.edu/imtr/spiro360/about_spiro/

Thanks for reading…Now go ask your doctor about a Spirometry test.

Sharon O’Hara

Pain Medication Research at UW Medical Center and Washington State University

Overdosing on pain medication can kill and may cause pain med addiction.   For COPDers though pain management isn’t usually a part of COPD (Chronic Obstructive Pulmonary Disease) management.  Speaking as a patient – COPD isn’t painful.   Patients simply can’t breathe to different degrees and some patients de-saturate enough to be placed on supplemental oxygen allowing them to exercise further and faster for a quality life.

Trouble is – COPD is often the beginning of gathering other diseases – Other Stuff that is very painful.  Trouble is – some pain medications are known to adversely affect the respiratory system…so too often COPDers learn to live without sleep and 24/7 pain until the day comes when the thought of facing another day of such pain isn’t worth it and that is when a COPDer will take a pain pill or two for relief and to sleep.  Too, our physicians are afraid to prescribe pain meds for fear their patients will become addicted and I understand that.

I lived through the initial crushing left hip pain until now my body is letting me help myself into better hip health through water exercise but the ongoing debilitating cellulitis/Venous Stasis Dermatitis/Lymphedema sweeping lower leg pain finally sent me in desperation to the University of Washington’s Pain Management  Clinic.  On one visit I listed the pain as a 9 out of 10 being the worst.

Those were a few bad years, now is now and it is better.  For the Lymphedema, education was the key.  Thanks Melissa.  Time and exercise is helping me live in harmony with my hip… all without pain medications.

That said,  UW Medicine’s Alex Cahana, M.D., DAAPM, FIPP and the Division of Pain Medicine is doing ground-breaking work in pain management education for the physician and patient.  He was deeply involved with the “Washington State Opioid Reform Initiative, which seeks to reduce the over-prescription of narcotics.”

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“Since then, we’ve learned of two initiatives to help providers grapple with the disparate problems of addiction and pain management. ROAM (the Rural Opiate Addiction Management) Collaborative seeks to help manage the widespread issue of opiate addiction in rural Washington. COPE (Collaborative Opioid Prescribing Education) is an online educational tool that helps providers communicate to patients about how best to manage treatment of chronic, non-cancer-related pain.

ROAM and ECHO: Defeating Opiate Addiction in Rural Washington

Until recently, rural physicians have had few tools to help their patients escape opioid addiction — an epidemic health issue in rural areas, with large numbers of unintentional overdoses, even deaths. Methadone maintenance therapy, the most common treatment for opioid addiction, is often unavailable. However, a federally approved medication called buprenorphine (also known as Suboxone or Subutex), is more readily available, and it’s a viable, office-based alternative to methadone.

Despite the potential advantages of buprenorphine as opioid replacement therapy for addicted patients, however, few physicians have taken the eight-hour course that allows them to legally prescribe this medication. As of 2010, only 32 rural doctors in Washington had received the federal waiver that allows them to prescribe Suboxone.

In late March, Roger A. Rosenblatt, M.D., MPH, UW professor and vice chair of the Department of Family Medicine, and UW Medicine’s ROAM (Rural Opiate Addiction Management) Collaborative helped remedy the situation by offering the course to rural physicians and members of their practice staff in Spokane, in conjunction with the annual Regional Rural Health meetings. Physician participants are then eligible to receive a waiver from the Drug Enforcement Administration to allow the prescription of buprenorphine to treat addiction. If they wish, they can also receive further mentoring and instruction from Project ECHO (Extension for Community Healthcare Outcome), a bi-weekly video-conferencing program that covers issues such as patient management, staff training and clinical protocols.

For more information on ROAM — a collaboration between Washington State University and the University of Washington, funded by the state’s Life Sciences Discovery Fund — contact Rosenblatt at 206.685.1361 or rosenb@uw.edu.

COPE: Online Education for Chronic Opioid Therapy

UW Medicine has launched an online medical training tool for doctors and other prescribing providers who treat chronic pain. Known as COPE — Collaborative Opioid Prescribing Education — the tool is designed to improve interactions between prescribers and patients as they make shared decisions about chronic opioid therapy.

COPE was developed over the past six years by Mark Sullivan, M.D., Ph.D., a professor in UW Medicine’s Department of Psychiatry and Behavioral Sciences and adjunct professor of bioethics and humanities, and it has been clinically tested and peer-reviewed. It’s a comprehensive program, one that goes beyond typical factual content by using videotaped clinical scenarios to train providers about goal-setting and communications skills. Tutorial models are in development for nurses and for patients and families to help enhance their engagement in decision-making.

COPE focuses on the management of chronic, non-cancer pain, and its interactive modules are a timely response to legislative changes concerning chronic opioid therapy. Recently, Washington State adopted a bill that requires mandatory education and use of a prescription-monitoring program and clinical tracking tool. In addition, the U.S. Food and Drug Administration intends to issue a Risk Evaluation and Mitigation Strategy (REMS) which likely will call for a coordinated risk management plan for patients taking long-acting opioids. COPE will help prescribing providers nationwide to meet this challenge.”

For more information on COPE, contact Sullivan at: sullimar@uw.edu.

More later … thanks for listening… Sharon O’Hara

University of Washington #5 Cancer Hospital and More Genotyping Patients by Vanderbilt

A little more about cancer research and treatment….

Good news for us closer to home is that our own University of Washington Medical Center is # 5 on the leading list of cancer hospitals in the nation, according to US News and World Reports.

http://health.usnews.com/best-hospitals/rankings/cancer

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“Vanderbilt-Ingram Cancer Center (VICC) has launched its new Personalized Cancer Medicine Initiative, becoming the first cancer center in the Southeast and one of the first in the nation to offer cancer patients routine “genotyping” of their tumors at the DNA level….”

Meaning patients will receive personalized treatments based on their own body changes pushing the cancer growth.

…”Vanderbilt is further leading the nation in personalizing medicine by leveraging its sophisticated Electronic Medical Record (EMR) to use the genotype information in point-of-care decision-making.
“The EMR for each patient is automatically updated to contain the latest genome-based treatment information, so that all healthcare providers at Vanderbilt caring for the patient are fully informed and guided by the latest decision support on these advanced therapies,” said Dan Masys, M.D., chair of the Department of Biomedical Informatics.

“We know that genetic differences in humans at the molecular level not only contribute to the disease process, but can also significantly impact an individual’s ability to respond optimally to drug therapy,” said Jeff Balser, M.D., Ph.D., vice chancellor for Health Affairs and dean of the School of Medicine. “…Project, with highly personalized therapy for our patients.”

Vanderbilt’s Personalized Cancer Medicine Program is led by William Pao, M.D., Ph.D., Ingram Associate Professor of Cancer Research and an expert in lung cancer….”“…
“The Personalized Cancer Medicine Initiative is our commitment to providing the most cutting-edge treatment for our patients,” said Jennifer Pietenpol, Ph.D., director of Vanderbilt-Ingram and B.F. Byrd Professor of Oncology.
Jeffrey Sosman, M.D., professor of Medicine, noted that having the genotype information is also important to help patients avoid the side effects of traditional chemotherapy.

“We are starting to understand how each patient’s tumor may have specific mutations that cause the cancer, but some of those mutations may also make the cancer vulnerable to specific therapy,” said Sosman, who directs the center’s Melanoma Program. “Tumor genotyping allows us to personalize our approach. If a tumor is likely to respond to a targeted therapy then we can avoid the side effects of traditional chemotherapy.”

http://www.vicc.org/news/2010/08/personalized-cancer-therapy/

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Following are portions of a letter written by a woman to her parents during a time when her husband was dying of pancreatic cancer far off in another state – with her permission.

She once told me the timed painkillers he had available didn’t stop the pain for long and he would scream out to her with the pain and beg her to give him another shot early.

A concern of the hospital seemed to be that he would become addicted to the drugs.
I wondered then, as now – what different would it make if he became addicted to pain medications?
He was dying.

The good news about Vanderbilt’s Personalized Cancer Medicine Initiative is one more step in the battle against cancer.

‘Dated Monday, Nov 2 -87.
Dear Mom & Dad,

Received the money you sent me…thank you.
It helped a lot because his drugs he has to have are very costly.
Just his filled morphine shots I give him are $163.00 every two weeks, not counting his other medicine.
This is mixed with cocaine.

Brought him home Sat.
Got here about 1:30pm and so thankful to be home again.

The nerve blocks he went through have deadened many of his nerve endings leading to his cancer.
He knows he is dying.
His mind is still very alert.
Thank God.
He told the Dr while I was out of the room that he was afraid of dying.
God what suffering.

He is in God’s hands.
He is humble & has prayed so hard for God to take him.
His spirit will one day go back to the Lord who gave it & then his struggle & his pain will be over.
Cancer is a slow & painful death.

I wonder sometimes why humans have to suffer so much. There is no answer of course.

I’ll never forget the beautiful people at the hospital who gave me their support & hands & hearts that reached out to us, & before I left the hospital, I went around & thanked them all for giving me so much when God knows I needed it.

Two wonderful & beautiful Drs -Dr Stewart & Dr Wright, they cared too, what we are facing.

They are frustrated because they can’t stop this cancer.
There is no form of x-rays that will show the kind of cancer Kenneth has in the early stages, only after it’s too late.

They became Dr’s to help heal their patients & in Kenneth’s case, it’s too late but they both did everything medically possible to ease him.

They are both so kind.
They wished they could tell me that it wasn’t too late.

Both of them would meet me in the hallway & be on the way to surgery but they always took the time to stop & take my hand & talk to me.

Thank God, for the wonderful & beautiful people left in this world.
There will always be a dawn because of the beauty of their souls & it rubbed off on me.

I’ll never forget any of them. Everyone at the hospital knew me & put their arm around me & asked how I was; no matter where I was in the hospital, so many people came over to me.
God Bless them all.

I know God has a special place for them & I have in my heart.

Don’t worry about me, I’m all right.

God Bless my two parents that I so dearly love. I keep you close to my heart & the miles apart make no difference.
With lots of love, Karen”

More later… Sharon O’Hara

Meet Alec

Alec is the flip side of the dancing COPDer you see in the television commercial. For the COPD TV commercial dancer, all it takes is one inhaler, a few puffs and like magic, the lungs are okay and off to the dance floor.

Alec is a COPDer on oxygen, living right here in Kitsap County. .Alec doesn’t dance, he is barely able to walk. The other day he walked for less than two minutes before he was exhausted and had to sit down. He has a doctor appointment with his primary in the next week or two and wonders if he can get strong enough by then to make the appointment.

When he called for an appointment with a lung specialist in town, he was told that he missed five appointments during the past twelve months and she wouldn’t give him another appointment. Ouch. I can relate to missed and late appointments with my doctors. None, so far, has refused to give me another appointment.

My phone rang last week and a man asked for me by name. He gave his name and went on to say he had gotten my name and phone number from a article Chris Henry wrote one month short of five years ago. The article mentioned physical fitness and EFFORTS, my online support group.
I told him about the years I wasted not knowing what I could do to help myself. It wasn’t until I found EFFORTS (Emphysema Foundation For Our Right To Survive) online and learned to go BEYOND my shortness of breath to gain strength and muscle that life began again.
I encouraged Alec to begin rehab to get strength back and talk with the doctor he has a good relationship with to begin a team effort to regain as much muscle and fitness possible,..unless there is some medical reason he cannot exercise.

Alec didn’t know about Pursed Lip Breathing, the oximeter, none of the basic tools COPDers NEED to be the best we can be for the best quality life possible. He has not seen a doctor for his oxygen use in a year!.
We exchanged email addresses and this is where I became aware of unintentional gross neglect of a COPDer by not educating him in the most basic how to PLB breathe! He didn’t know why a COPDer has to exhale twice as long as he inhaled! Why not? How many other folks do we have in Kitsap County, feeling alone and trapped without knowledge and encouragement to work toward a better quality life?

I’m guessing Alec is the tip of the iceberg of ignored people right here who need help! COPD can be a gradually isolating disease.

I suggested he join ‘Walkers’ on EFFORTS, contact the American Lung Association of Washington and the Shortness of Breath Self-Management Study at the University of Washington.

Following are emails I exchanged with Alec and his permission to use here.
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11/27/2009 8:32 AM

Hi Sharon..I contacted my doctor’s office, although he was off, and the nurse said go ahead and keep my appointment and discuss with him about being my medical partner in my quest with EFFORTS. Hope you are doing well.

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On Sun, 29 Nov 2009 09:29:29 -0800

Good morning Sharon….I am having a tough day today and have become discouraged ,a little. I thought I would exercise by walking slowly as many minutes as I could..If I didn’t have my faith in God, I don’t know where I would be! I started walking and realized just how bad of shape I’m in. I couldn’t make it 2 minutes ,with my 02 !!. Then I realized I hadn’t prayed or eaten or anything….and that’s not like me. So I prayed and ate and started again. I could barely make it over 2 minutes walking slowly. I realize you probably don’t want to hear all this, but I will leave you alone after this. I have a week from tomorrow to get in some kind of physical shape to make it to the my doctor’s appointment. I do want a better quality life. You have given me the inspiration to do that. I didn’t have much luck finding an exercise regimen on EFFORTS, so I will look on ALA for some ideas. I am going to keep moving forward no matter what happens, even if they are slow, or as you put it, one foot in front of the other! I just get down sometimes, but my God always picks me up and says…keep your eyes on Me, not your circumstances.. I’m sorry to unload all this on you, but I won’t bother you anymore. I will continue today to increase my minutes. Thanks for listening…..

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To: “…
Sent: Sunday, November 29, 2009 11:07 AM
Subject: Re: Discouragement

…..call 911! Or your doc. No one should be in the kind of shape you mention and by yourself…no one!

Please…call for help…NOW. Sharon

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On Sun, 29 Nov 2009 09:48:00 -0800

Sharon…I’m okay if I’m sitting down and not walking for a lengthy period.I don’t believe I need 911, as I breathe okay if I’m not walking or exercising.I’ll be okay.I think it sounded worse than it is! I’m alright! Please don’t worry yourself. Believe me, I know when I need 911……..Please…I’m so sorry I startled you …….


Sent: Sunday, November 29, 2009 11:26 AM
Subject: Re: Discouragement

Alec…Thank you for sharing with me. I’m astounded that no one has helped you build muscle and that you are alone through this and I wonder how many more of us are out ‘there’ that are in the same boat? We need to help each other with encouragement … will you give me permission to use this email exchange (I won’t use your name)to emphasize the NEED for education for COPDers in my blog?
Sharon

11/29/2009 12:12 PM
We’ll do it together, Alec…okay? AND, one day, you’ll be riding a recumbent trike…one step at a time, one cycle wheel turn at a time and have fun too.
God has a sense of humor, I am convinced of it. Do you have a goldfish, bird, birdfeeder…any pets?
You are not alone.
Sharon
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11/29/2009 9:34 AM

Yes, you are right Sharon. God is in control and has a sense of humor! There’s never been a doubt in my mind about that. I didn’t know you would get so worked up about it or I wouldn’t have e-mailed you. I’ve been here for over 4 yrs. by myself! I had a dog, but he got attacked by raccoons and had to be put down. I still cry about that one! Malcom. Great dog. Half Akita, half Spaniel. Big! He was 12 and had a hole tore in his throat by the raccoons over some dog food. Malcom stood his ground, but it cost him his life. Reminds me of ….yea….Jesus! The Vet said he could patch him up, but he was 12 and bigger dogs don’t live as long as smaller ones. He said he probably wouldn’t last long if he couldn’t eat. He couldn’t get up to eat. It was all so sad. I called the Humane Society and they came and carried him away. I’ll never forget the look in his eyes. But I’ll see him again when I join him in heaven.But it still hurts.Poster Child? Never considered myself one of those. I don’t want to lose what little freedom I have. Can you understand that? I hope so! If I told people just how bad I was they would freak out.We do need education in the rehab area. People caring about other people! My family lives out of state and I hate to ask someone to call me everyday or drop by because they all have families, except Louis, and he’s very busy at the church.My goal is to get healthy enough to ride my recumbent bike, go to church, prayer warrior’s on Thursdays, and to go and tell people how much their God loves them! Not to much to ask is it? Nothing is to big for God! I can do all things through Christ who strengthens me! I am going off-line to read my Bible and study. So I’ll talk to you later.One step at a time…you’re right. And fun….I used to love to swim. Couldn’t get me out of the water in the summer. You are a dear, with a big heart. Talk to you later…..Blessings…….

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On Sun, 29 Nov 2009 09:21:42 -0800

Sharon…alot of people have said that I am brave to be on my own and in the shape I’m in. No one has even offered to help me get in shape. Maybe that tells me something about who my real friends are! I’m sure there are other people like me who are alone. If something serious happened I would be in a jam ,especially if I couldn’t dial the phone! But then again, most people I know have families and can’t come help me, plus I feel like I’m intruding, and I am, if I ask them to help. I have a single friend at church who is very busy with the holidays this time of year, but I don’t think he realizes how out of shape I’m in. Yes, you can use the e-mail exchange. I don’t know if I want to read it or not, but yes,use it. It’s just one of those things. I just happened to be alone when this all happened. What else can I do? I don’t think I’m bad enough to be in the hospital, but I do need someone to check on me daily or come by and see how I’m doing.. My friend came over yesterday and looked at my computer. I left a message for him to call me at his convenience when he gets home from church today. I’m going to ask him his opinion about whether I need to be in the hospital or a care center, since I live alone. He’ll be honest with me. …

The following article provides a good reason why COPDers tend to have panic attacks as they get more and more short of breath….

“The portion of our brains that is responsible for registering fear and even panic has a built-in chemical sensor that is triggered by a primordial terror — suffocation. A report in the November 25th issue of the journal Cell, a Cell Press publication, shows in studies of mice that the rise in acid levels in the brain upon breathing carbon dioxide triggers acid-sensing channels that evoke fear behavior.” More at http://www.sciencedaily.com/releases/2009/11/091125134651.htm

Goals:
1. Education and rehabilitation for the COPDer.
2. Find the COPDers like Alex…let them know they are not alone and what they can do to help themselves to a more active life.
3. We can help each other if for nothing else but a cheery “Hi, How are you?” voice on the phone.
4. Where are you?

More later… Sharon O’Hara

World COPD Day 2009 in Silverdale includes Pictures

The University of Washington’s, Pamela Weisman, ARNP, spoke on “Strategies to Manage Shortness of Breath”

De-conditioning, Weak Muscles Lead to Oxygen Inefficientcy
De-conditioning, Weak Muscles Lead to Oxygen Inefficiency
and Port Orchard’s, Carol Lowrie was intent on note taking..
...for there is nothing either good or bad but thinking makes it so. Hamlet Act 2, Scene2
...for there is nothing either good or bad but thinking makes it so. Hamlet Act 2, Scene2
Chuck Intent on Listening and Getting Ready to Ask a Question.
Chuck Intent on Listening and Getting Ready to Ask a Question.

A few tips from the Self-Management Study included:
“Walking Up Stairs or Uphill and SOB
* … plant your whole foot flat on each step.
* Start with a few good breaths in and out; start walking slowly WHILE BREATHING OUT THROUGH PURSED LIPS.
* Don’t hold your breath! Ascend 2-3 steps at a time (fewer if necessary) while breathing OUT.
* Rest while breathing in and out for a few breaths. Continue when comfortable.”

One of a COPDers most valuable asset is to learn properly how to Pursed Lip Breathe (PLB) until it is second nature whenever we begin to desaturate. The life you save may be your own. I’ve proved to myself time after time that PLB works, keeping me out of the hospital. Other medical conditions have taken me to the ER, NOT my shortness of breath… thanks entirely to proper training and use of my oximeter proving to myself that sinking numbers WILL come up to the safety range using PLB! PLB and focus took my low 70′s number up to the low 90′s and I kept it there until the plane landed at SeaTac. Only once during the flight from San Diego did I move and that was to nod and tell the stewardess, “I’m okay.”
Years before I was hospitalized with a blood/oxygen level of 84 so I’d say PLB works even in extreme situations.

How many COPDers in Kitsap County – anywhere – use a oximeter to help train in a technique that will help keep you out of the hospital due to SOB? Panic attacks are familiar to COPDers. Hey, its scary to overdo, run out of air, gasp and get more frightened as panic begins to rule and airways can’t keep up with the increasing need for oxygen …a vicious circle all driving your saturation point into Puget Sound with the bottom fish and a panicked 911 call. All that could be avoided with proper training in the use of the oximeter using PLB technique. It works for me.

I was lucky enough to qualify for the Shortness of Breath Study and can’t praise the people and program highly enough for what it did for me and what it will do for those who follow us.

SOB SELF-MANAGEMENT STUDY
What is it about?
-Researchers at the University of Washington and University of California San Francisco are
-Testing different ways to provide education, skills training, and support to help patients with COPD manage their SOB
(Funded by the National Institute of Health, 2005-2011; http://www.managesob.org)

Eric E. Anderson BS, RRT
Director Respiratory Care, EEG
Harrison Medical Center
360-744-6686
Eric is the genie who put the 2009 World COPD Day Celebration together and did a fine job for the small, enthusiastic crowd.

Thank you, Eric...Good Job!
Thank you, Eric...Good Job!
Pam Considers an Evening COPD Event for the Future - Thank you, Pam!
Pam Considers an Evening COPD Event for the Future - Thank you, Pam!

The enthusiastic World COPD Day event was held in the Rose Room in Harrison – Silverdale….
Thanks for the event!
More later… Sharon O’Hara

World COPD Day Celebration 2009 is coming to Silverdale!

WORLD COPD DAY CELEBRATION 2009 is tomorrow!

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.

Refreshments

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

New NIA Senior Walk Study

The National Institute on Aging wondered ‘What Can Prevent Walking Disability in Older People’ and awarded $29.5 million to the University of Florida’s Institute on Aging to find out.

To be a part of such a study is the greatest opportunity for us…person, patient or senior to be a part of something important for future generations, meet the most amazing people and have fun at the same time…such as the University of Washington’s Shortness of Breath Study https://www.managesob.org/RS/StudyII/

Unfortunately, our own close-by University of Washington in Seattle isn’t one of the eight sites for the study but for those seniors close enough to one of the sites of the new “Lifestyle” – get your feet wet and get involved. I’ve been lucky enough to have been part of two COPD studies and can’t recommend them highly enough.

This six year “Interventions and Independence of Elders “(LIFE) study involves about 200 people, from 70 to 89 years at each of the eight sites around the nation.

I hope those of us who get involved will keep us posted when you can… the results of the study will help millions of future seniors maintain a quality of life and save future taxpayer dollars in health care.

“There is a lot of evidence indicating that exercise can help in preventing diseases, such as diabetes, among older people. But we do not know whether and how a specific regimen might prevent walking disability in older people who are at risk of losing mobility,” said NIA Director Richard J. Hodes, M.D.

“This research is critically important at a time when the population is aging and new interventions should be sought to keep people healthy and functioning in the community longer.””

“At eight sites around the country, LIFE will involve 1,600 people aged 70 to 89, who at the start of the study meet its criteria for risk of walking disability, defined as the inability to walk a quarter of a mile or four blocks.

About 200 participants will be enrolled at each of the study sites, which include the University of Florida; the University of Pittsburgh; Northwestern University School of Medicine in Chicago; Stanford University in Palo Alto, Calif.; Pennington Biomedical Research Center in Baton Rouge, La.; Yale University in New Haven, Conn.; Tufts University in Boston and Wake Forest University School of Medicine in Winston-Salem, N.C. Wake Forest will also coordinate the data management and analysis.”

“Limitations in walking ability compromise independence and contribute to the need for assistive care,” said Evan C. Hadley, M.D., director of NIA’s Division of Geriatrics and Clinical Gerontology, whose program is overseeing the trial. “Older people with impaired walking are less likely to remain in the community, have higher rates of certain diseases and death, and experience a poorer quality of life. A successful intervention might help prevent these bad outcomes.”

“We know that many older people have chronic health problems that affect their ability to walk,” said Jack Guralnik, M.D., Ph.D., chief of the NIA’s Laboratory of Epidemiology, Demography and Biometry and co-principal investigator of the study. “Arthritis, muscle weakness and poor balance can all affect how well and how far a person can walk. And, some older people have all of these problems. We will test the LIFE intervention in this population to see how it works in a real-world setting.”

Study participants will be randomly assigned to one of two groups. One group will follow a structured intervention consisting of walking at moderate intensity, stretching, balance and lower extremity strength training; the control group will participate in a health education program. The participants will be followed for about three years.

Researchers will evaluate whether, compared to health education, the physical activity intervention reduces the risk of major walking disability, serious fall injuries and disability in activities of daily living, and whether it improves cognitive function. They will also assess the cost-effectiveness of the intervention.

“This will be the largest randomized controlled trial to prevent major mobility disability ever conducted in older persons who are at high risk of losing their physical independence,” said Marco Pahor, M.D., director of the University of Florida’s Institute on Aging and study principal investigator. “Typically, this population is excluded from large trials, and from this perspective the LIFE study is unique.”

The NIA leads the federal effort supporting and conducting research on aging and the medical, social and behavioral issues of older people.

For more information on research and aging, go to www.nia.nih.gov.

The NIH — the nation’s medical research agency — includes 27 institutes and centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases.

For more information about NIH and its programs, visit www.nih.gov.”

More later…Sharon O’Hara