COPD and Other Stuff

I’m telling my recent Northwoods story backwards, my outpatient, twice-weekly rehab ends at the Northwoods picturesque, characteristic salt-water rehab pool and into a new beginning.

Other than my first solo horse-packing trip into the Cascades and living through a host of learning experiences, I have seldom learned so much in one week as during my stay at Northwoods, a five star rehab center just north of Silverdale. 

I hope to progress as I should, working out at home and/or in a commercial pool.  The primary goal here is to rebuild the muscling around my arthritic bone on bone left hip in order to pedal a recumbent trike.

One of Northwoods rehab specialist, Jeff, actually got me RUNNING in the chest high water, coming down on my left foot without the old debilitating pain…muscle building safely in the water. 

Incidentally, the second time I ran in the water I felt so Tarzana that when Jeff asked me to sit on the water stool for a series of other exercises; I made a surprising running leap for it… and slammed into it or would have if I’d got that far. 

I began the jump too far out and the side effect was a gut wrenching, breathtaking laugh – so hard I ran out of air and had to focus hard to stop laughing.  COPD is not for sissies – nor are fancied, imagined, graceful gazelle leaps of joy that I could put weight on that left hip. 

Good Physical Therapists cause little moments of joy for the patients they guide into better fitness as we work into better health.

Northwoods has many good or great physical therapists – I am talking a little about some of the people and my latest experience as a patient in one of two Kitsap County five-star rehab centers.

For information, I didn’t qualify for insurance coverage since I had only been at Harrison overnight for observation, yet encouraged by Harrison’s sharp good-by, good luck doctor,   Dr. Mathew Coates the next day,  I decided to give it a couple days…and stayed over a week.

This is the entrance to the Red Barn dining room leading to access to the salty rehab pool.

Antiques – some early Kitsap County settler and his family plowed ground with this nifty tool and a couple good horses – or, maybe it is a thresher – a hay cutter. 

Note the wonderful old artifacts displayed everywhere in the “red barn “ – take a gander at  the two-woman saw on the wall above the staircase. 

Open for dining 

These wonderful items are displayed on the way to the ladies changing room and the pool.  

On my way out, dinner guests coming in…hubby waiting for me to go home    Gorgeous quilts on the upper, left wall

Door to the pool

Roomy shower – kept spotless

The first dressing room/ladies room leading to a pool that I have seen decorated with real hand-worked framed quilt squares on the wall.

Kristi, left, following Jeff’s exercise plan had me run as fast as I could to the end of the pool – stop and walk backwards to the other end and repeat the run…got me laughing when I spotted her ‘running’ alongside.  She moved through the water like a prancing parade horse – head bobbing, smooth and graceful while I plowed through the water using my arms pulling forward – feeling plow horsey running through the deliciously warm water.  Kristi asked why I was laughing.  Her first time running through water, she said, when I told her.  She has a wonderful spirit and I howled…and did not tell her Jeff saved his energy and did not run alongside when he instructed me to run. 

Patients need the lightness of spirit and humor with the serious work they do helping put us together again,…we’re sort of like HumptyDumpty and they help us get back together again and teach us how to apply our own glue.Kristi and Shayla

Thanks Shayla, (PT) and Kristi (PTA) – What a great job you do for us!

Thanks for listening … Sharon O’Hara

Part 1 of 4

Tsaristic stuff happens, “we don’t live in a perfect world” a young nurse recently told me when I questioned the hospital discharge papers.  Used to transparency and kind consideration – I had expected better – much better.

28 March 2013 – The Global Rosemaling Club:

“Yesterday we went to  my surgeon for the third visit since my surgery last December 20th. I also had my first “commercial” haircut in over a year. But Joan has been nice trimming it several times. She used to do a great job! I also drove the car for the first time. Joan drove home. But I was happy to feel that I could handle the car after more than a year as a passenger.

The doctor didn’t give us the kind of news that I had hoped for. Each time I go there, they take a few x-rays to see how I’m healing. He said that due to the first hospital I went to let me out without knowing that I had 2 breaks in my back, the 6 extra months it took to find this out before the final surgery in a much better hospital, was too long to straighten out my old spine. So I’ll be living with an ugly hump and pain for the rest of my life. As well as not being able to lift more than 25 pounds while being very carefully without bending too much. If I was too ruff with my back, it just could brake again. He was very liberal on giving me prescriptions for pain medicine and indicated that I should not be afraid of taking them. From next Monday, I’ll start going to their “in house” physical treatment department. It will be from 2 to 3 times a week depending on what they think will be best for me. The doctor assured me that I could get anything I asked him for. I guess he felt sorry for the way this turned out for me.

He clearly admitted it was due to the poor treatment from my first hospital and added that this was not the first time they had failed with their surgery or diagnoses at that hospital. So he will hopefully be a good witness, because being ruined for the few years I have left, somebody should pay for not giving me the proper treatment. This will include the arthritis dr. that gave me the wrong medicine, which gave me internal bleeding and fainting. 

Even with all the above negative “news”, I feel a lot better despite it’s going to be hard to get used to having an ugly hump on my back!

However, I feel so badly for Joan who will be stuck with my part of many of my home duties which are way too heavy for her as well, because of all the arthritis problems she has of her own. At times she can hardly move. She often doesn’t sleep many hours in her bed and have to move between the sofa and her bed. Her hands are also swollen when she gets up in the morning.

Well, it’s “nice” to get old!”

(Thor Dahl)

http://www.rosemal.com/

the-global-rosemaling-club@yahoogroups.com

Joan & Thor

Dahl House Art & Rosemaling Center

16623 West River Rd., Caribee Shores

Based in Seattle, Consumer’s Union, “Washington Advocates for Patient Safety” (WAPS) is a Washington group advocating for patient safety. http://www.washingtonadvocatesforpatientsafety.org/patient-safety/

The fact is almost sixty years ago the epidermal needle intended to help me give birth was jammed into a spine disk.  No physician treated me – they could not find anything wrong. 

Eventually, desperately, my parents took me to a recommended chiropractor and  I was given a pamphlet showing exercises.  He circled the ones he wanted me to do. 

He gave me hope and followed his instructions exactly.  He did not examine me, nor accept payment from my parents.

He gave me a life back – I worked through the pain. 

Through the years – every decade or so – I have followed the disintegration of the disk accidentally through x-rays given for other reasons.  A recent – on purpose x-ray showed the disk is gone. 

I lived through it without treatment and lived the physically active lifestyle I knew and loved.  COPD threw a different kind of curve in 1997.

Mistakes happen. 

Mistakes are sometimes turned around with the proper care and attention.  

Exercise gave me a life, and taught me to work through the pain.   

See your doctor.  Take a friend to be sure you both heard the same thing and be proactive in your own care. 

God Bless.  Happy Easter!

Thanks for listening… Sharon O’Hara

Ask your doctor…and look for a miracle inhaler for some COPDers.  The PATHOS study published in the Journal of Internal Medicine shows that SYMBICORTR TurbuhalerR (budesonide/formoterol) must be some kind of miracle inhaler for chronic obstructive pulmonary disease (COPD) patients. 

Among other advantages, the PATHOS study showed a 26% decrease in exacerbations for moderate – severe COPD!  The Symbicort    SYMBICORTR TurbuhalerR            inhaler has to be bliss for those COPDers able to use it.   

I’ve used Foradil Aerolizer (Formoterol Fumarate Inhalation Powder) for years.  The Fulmarate ingredient seems to make it a relative of Symbicort        SYMBICORTR TurbuhalerR                and it is the single inhaler I take (of three) that noticeably helps me breathe easier.

Best of all is the promise shown in the PATHOS study:

“Dr. Kjell Larsson, Professor of Respiratory Medicine at the Karolinska

Institute in Stockholm said: “So called ‘real world’ studies, such as

PATHOS, together with randomised prospective studies, play an important role

in answering questions about the value of medicines in delivering better,

cost-effective healthcare to patients. These findings can help physicians

and the healthcare community to understand disease patterns and create a

fuller picture of treatment effects and what patients are experiencing.”

The only side-affect/warning I can find  might be for asthma patients.

http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=77788

http://www.4-traders.com/ASTRAZENECA-PLC-4000930/news/AstraZeneca-plc-Real-w

orld-study-comparing-commonly-prescribed-COPD-medicines-shows-choice-of-trea

-16558063/ …thanks to Linda W EFFORTS <www.emphysema.net> 

Thanks for listening … Sharon O’Hara < familien1@comcast.net

Spring 2013

p class=”MsoNormal”

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit  

National Lymphedema Network – Educating Patients Online 

Part 3b of 3b 

Exercise and Compression Garments:

Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3-5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone.

Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore “What is COPD” tee shirt while she was here.

My young cousin, Malin from Norway is included here because COPD (Chronic Obstructive Pulmonary Disease) began in 1997 for me and led into my long ride into medical conditions – one after the other and my gathering weight attracted lymphedema as surely as fresh bread and butter sticks to peanut butter and strawberry jam. 

“The NLN Medical Advisory Committee (MAC) recommends using the guidelines for aerobic and resistance exercise to guide use of compression during flexibility exercise since flexibility exercises may be combined with other forms of exercise. 

The amount and type of compression for exercise should be decided with input from a professional knowledgeable about lymphedema. There is no strong evidence basis for the use of compression garments during exercise; however, most experts in the field of lymphedema advise the use of compression during vigorous exercise for people with a confirmed diagnosis of lymphedema.

Melissa showing me the latest fast, protective lower leg support

Melissa Mercogliano, Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard, WA. recently showed me a new and easy way to add support stockings…easy except for we Tub’ettes.

“One study suggested that individuals with lymphedema who do resistance exercise without compression may increase swelling. 

20 Resistance exercise may reduce limb volume when used as an adjunct to compression therapy in people with confirmed lymphedema.

8 One study showed that aerobic and weight-lifting exercise was safely performed without compression in women at risk for breast cancer-related lymphedema.

9 That study showed patients who developed lymphedema could continue to exercise with compression garments. Compression garments should be measured by an individual trained and experienced in fitting compression garments for lymphedema and should be at least Class I compression for upper extremity. Higher classes may be required for more severe lymphedema and for lower extremity lymphedema.

Custom sized, each leg. This pair is old…notice the crinkles below the rubber dotted band. The replacement compression stockings are black.
This pair is about one year old.

I throw the stockings in a little zippered mesh cloth bag and into the washer on a short cycle, regular soap, extra rinse – cold water and smooth out and let them hang to dry.

I prefer the toe less stocking so my toes don’t get scrunched up and have two different kinds. The little rubbery tips around the tops of both help them from sliding on down my leg and cutting off circulation.  Ask your doctor. 

“A hand piece (gauntlet or glove) is recommended when exercising with a sleeve to avoid causing or exacerbating hand swelling. 

Definition of Individuals At Risk for Lymphedema:

Individuals at risk for lymphedema have not displayed signs and symptoms of lymphedema but may have sustained damage to their lymphatic systems through surgical lymph node removal or radiation therapy.

Additionally, individuals at risk may have surgical incisions in the vicinity of lymph transport vessels.

Individuals who have family members with hereditary lymphedema may also be at risk.

An individual’s risk of lymphedema may change over time depending on factors such as weight gain, age, and changes in medical condition. 

It is the position of the NLN that:•

Exercise is a part of a healthy lifestyle and is essential for effective lymphedema management•

Before starting any exercise program, individuals should be cleared for the program of activity by their physician.•

Lymphedema Exercises (also known as Remedial Exercises) are specific rhythmic muscle and breathing exercises used as a part of lymphedema treatment in Phase I and Phase II

Complete Decongestive Therapy (see the NLN Position Paper on Diagnosis and Treatment). http://www.lymphnet.org/pdfDocs/nlntreatment.pdf 

In Phase II lymphedema maintenance, these exercises can be combined with or integrated into a regular exercise program.•

After intensive treatment with CDT, the person with lymphedema should work with the certified lymphedema therapist or qualified lymphedema specialist provider (MD, NP) to adapt their remedial exercises into their fitness and weight management program at the time they are moving from Phase I (treatment phase) to Phase II (self-management).•

Individuals with or at risk for lymphedema can and should perform aerobic and resistance exercise in a safe manner.•

The individual with or at risk for lymphedema may benefit from working with an Exercise Physiologist and/or Personal Trainer. The person with lymphedema should inquire if the trainer or exercise physiologist has experience working with lymphedema and other medical conditions. Certification for personal trainers varies. Patients who are unsure of about the qualifications of a community exercise practitioner should work with a certified lymphedema therapist or health care provider to assist them in finding a community exercise program or professional.•

In general, individuals with a confirmed diagnosis of lymphedema should utilize compression garments or compression bandages during exercise.•

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.•

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

•

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual’s usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.•

Exercise should be started gradually, increased cautiously, and stopped for pain, increased swelling, or discomfort.•

The risks of exercise for the individual with or at risk for lymphedema must be balanced against the risks of deconditioning that undoubtedly results from not exercising. A deconditioned body part with or at risk for lymphedema can do progressively less without risk of overuse. As a result, exercise is recommended for those with and at risk for lymphedema.

•

The NLN cannot specifically determine the safety of exercise for any individual. The guidelines in this Position Paper provide general principles, but do not substitute for medical evaluation and recommendations from a health care professional. It is the responsibility of all individuals with or at risk for lymphedema to consult with their health care provider regarding their own specific needs. 

References:

1. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment related lymphedema: a randomized controlled study. Support Care Cancer. 2010;18(3):383-392.

 2.Moseley AL, Piller NB, Carati CJ. The effect of gentle arm exercise and deep breathing on secondary arm lymphedema.Lymphol. 2005;38(3):136-145.

3.Boris M, Weindorf S, Lasinski B, Boris G. Lymphedema reduction by noninvasive complex lymphedema therapy. Oncol (Williston Park). 1994;8(9):95-106; discussion 109-110.

4.Földi E, Földi M, Weissleder H. Conservative treatment of lymphoedema of the limbs. Angiol. 1985;36(3):171-180.

5.Földi M, Földi E, eds-in-chief. Foldi’s Textbook of Lymphology for Physicians and Lymphedema Therapists, 2nd ed. Munchen, Germany:Urban & Fischer; 2006.

6.Bergmann A, Mendes VV, de Almeida Dias R, do Amaral E Silva B, da Costa Leite Ferreira MG, Fabro EA. 

Incidence and risk factors for axillary web syndrome after breast cancer surgery [published online ahead of print October 17, 2011].

Breast Cancer Res Treat. doi:10.1007/s10549-011-1805-7.

7.Fourie W, Rob KA. Physiotherapy management of axillary web syndrome following breast cancer treatment: discussing the use of soft tissue techniques. 

Physiotherapy. 2009;95(4):314-320. 

NLN • 116 New Montgomery Street, Suite 235 • San Francisco, CA 94105

Tel: 415-908-3681 • Fax: 415-908-3813

Infoline: 1-800-541-3259 • Email: nln@lymphnet.org •

Online: www.lymphnet.org 

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

Several years ago, I called Harrison Medical Center and asked if non-cancer patients with lymphedema could attend their support group meetings.  At that time, it was limited to cancer patients.

Yesterday I called the following number to be certain it was still up to date.  It is and the closest Lymphedema Support Group I know about.

If anyone knows of more, let me know – I can post it here.

Kitsap County Closest Support Group 

Northwest Lymphedema Center

Kent, WA (24.11 miles * Meeting times: Date varies  Phone: (206) 575-7775 

Tub’etts! 

I’d like to be part of a support group of fatties who NEED to lose weight for their health’s sake – with or without current medical issues. No dues – a scale and occasionally health professionals willing to talk to us – to educate us – to motivate us – guest speakers. 

I have been told that I’m not a good candidate for bariatric surgery…so, before I push that particular button – is there anyone beside me, who wants to be part of an obese/tubby support group to work together for weight loss and good health? 

To lose weight through good nutrition and exercise is my goal. 

We are dying of too much fat, fellow Tubby Ones.

Will you join me in our battle to shed the fat and live healthy?  Let me know…

Thanks for reading… Sharon O’Hara familien1@comcast.net

Kitsap County Library System has educational Lymphedema books for the layperson – just ask.

Happy Martin Luther King Day!

The recent NAACP Health Fair at Olympic College was fun, a day full of record rainfall, a little snow, great speakers and booths crammed with information.

The program included a delightful parade of kids –  tots to teens modeling the latest fashions and we were later served a delicious box lunch.

Thanks to the NAACP Health Fair, I had the opportunity to show and tell about COPD (Chronic Obstructive Pulmonary Disease) and what it can lead to…not good stuff.  It was my pleasure, thanks for asking.

Harrison Medical Center was not able to attend to offer early detection COPD Spirometry testing – this time.

A quick glance around when I arrived showed a who’s who of Kitsap County, including Bremerton’s Mayor, Patty Lent.

  Hey, mom – I found you!

Let’s go THIS way – there is my mom!

Our lives begin to end the day we become silent about things that matter.

Martin Luther King, Jr.

Thanks for reading… Sharon O’Hara (familien1@comcast.net)

Martin Luther King, Jr. DayWikipedia: Martin Luther King, Jr. Day is a United States federal holiday marking the birthday of Rev. →

What do the NAACP Community Health Fair, Harrison Medical Center, and Olympic Community College have in common?

Easy – they all have an interest in health care and patient education.

When:            Saturday, December 15, 2012

Where:           Olympic Community College – at the Student Center next to the Book Store

Time:              11:00 AM to 4:00 PM

For info:         360. 434.1754 or email: hjs52@hotmail.co

Community Resource Informational Booths

 Project HELP

 Entertainment

Fashion Show

Testimonials

Food

There will be free Snacks, Youth Fashion Show, Free Massages, Informational Health Material, Information on Affordable Health Insurance, Blood Pressure Readings and lots more!

Robin from Harrison Respiratory was kind enough to bring me a wonderful array of helpful information to hand out at the fair.  I have them packed to take tomorrow.  Thank you Harrison Medical Center!

Ask me about COPD – anything.  I will be the short, really round woman huffing and puffing behind a walker and pushing a case on wheels chock full of free helpful information for you. 

Thanks for reading. 

Hope to see you tomorrow …. Sharon O’Hara

COPD (Chronic Obstructive Pulmonary Disease) is deadly.  The third leading cause of death in the U.S., the slow killer too often opens the door to other medical conditions.   Some really unpleasant.  COPD Studies have been few – the CLIMB Study may well be the springboard to real solutions for those who may follow us into the long slow smother – our kids and grandkids.

I’ve applied to be a part of it and look forward to the experience.   I hope you’ll join me…if for no other reason than to meet the incredible people involved…including the #1 in the nation study nurses at the University of Washington.

Thanks for listening… Sharon O’Hara

Does a tumor mean Cancer?  Part 3 of 4

Glimpses of a patient’s life and the medical folks who helped save my life.  The University of Washington Medical Center(my lung doctor is here) and the Cancer Alliance of Seattle worked together to give me a life again.

One of the cheeriest technicians I have been around is right there at the University of Washington Medical Hospital.  Washington State first class teaching hospital.  The U – students and staff – alike is loaded with inquisitive, open minded, brilliant medical doctors teaching students to seek answers to patient’s medical woes.

Of the tremendous group of my tumor surgical medical team, this superb doctor stood out by his mention and appreciation of my first iPad covered Otter when he spotted it at my bedside table.  I appreciated his comments and conversation about a non-medical related product.  Btw… I think younger people are generally surprised many of us older folks appreciate and use new technology.

The view from my window was of one of my favorite bridges, the Montlake Bridge by the U. Beautiful views helped lessen the pain.

Need you ask?  This is without doubt the best-arranged toilet area of any I have had the privilege to know and love. The shower is just on the other side of the low wall.  The toilet was at a comfortable height and I let go of the walker, hung on to the low wall, and grasped the support bar on the other side.  I gently lowered myself and my new equipment onto the throne.

The day I was standing by the bathroom door when my incision opened and the blood flow began through the popped seal to the machine.  The bloody fluid flowed through the fingers I had pressed against the gaping open belly wound trying to hold stuff in where it belonged.   Instead, bloody fluid flooded the floor and formed running rivers downhill through my room.

The professionals who answered my call light moved swiftly to stem the bloody flow and no one raised a voice in alarm – not one.  I was immobilized in place hanging on to the pole with one hand and feeling the warm blood rush through the fingers of the other.  The warm blood flowed on down my legs while they quickly, quietly told me where to move.  They did their job with aplomb and took care of a horrified patient…like another normal day.  I had an incredible feeling of well-being in spite of the thought other belly parts and stuff might flow past my open fingers over the wound trying to hold back the blood flood.

Checkout day… the dried remains of one of the bloody flows remain under my soon to be vacated bed.

…Inhalers are important to lung patients.  The order we take them is also important.  I mention it here because my inhalers are rarely dispensed in proper order for the full benefit of my lungs.  Luckily, I know the right order to take them and do pass on that information.

I take Foradil first – a fast acting inhaler few nurses have heard of.  It is one of the best for me – opens my airway fast.  Spiriva is long lasting and second, while Qvar (inhaled steroid) is third.

Harrison Medical Center, University of Washington Medical, and  Martha and Mary in Poulsbo – none dispense Foradil…and I do not understand why.

I hope patients and med dispensing folks using other inhaler combinations see they are taken properly.

One nurse told me she did not know there is a proper order to taking inhalers.  Why not?   One possible answer…  If I were in the cancer area recovery, the nurses would be cancer oriented, not lung patient oriented for inhalers.

One of the terrific and friendly docs from my informative medical team.  Another super University of Washington/Seattle Cancer Care Alliance doctor that I cannot name due to misplacing my notes/business cards.

 Kristin, physical therapist…

Meet Gretchen, one of the outstanding nurses I had and now, my discharge nurse.  She is putting together the little vac machine that will collect the fluid from the tube sealed inside the unstapled lower belly surgery site.  I will wear it day and night for the next few months…while Harrison Home Health nurses will change it out every three days, per doctor orders.

Gretchen showing how the vac – the entire devise works.

Gretchen read directions and showed me how to change the container when it got full of the bloody belly fluid.  I was told an alarm would sound first giving me plenty of time to take care of it.

…Goodbye Nurse Gretchen …another patient going home – another patient tomorrow.   Thanks for your care and kindness.

Thank God for nurses like you…and…your detailed instructions on the belly vac came in handy the very next evening at home.

I am very lucky.  They found no wingding blooming cancer – only some strange looking cells that bear watching every four months for a while.

Please understand – Kitsap County has first class cancer docs and treatment  – I’ve talked to enough cancer survivors to know it.

That said…My first and primary medical condition involves my lungs – COPD first and Sarcoidosis second.  I will not do any surgical procedure that involves anesthesia without my pulmonologist as part of the discussion as a consultant.  While Karen Eady, MD, is my wonderful primary doctor, right here in Kitsap County,  Christopher Goss, MD is my lung doc  at the U .   Thanks to you all!

Harrison Home Health.  Part 4 of 4,  next time.

Thanks for reading… Sharon O’Hara

Good-bye and thank you, Lisa Marie.  You’ve moved on to a  fabulous person and  forever home, and we’re grateful for the eight years we had with you.  Mom S

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 ….

Greetings!

This is a public thank you to my primary doctor, Karen Eady, MD and a story of what can happen when a patient refuses their doctors advice.

I’ve never liked full physical exams, mostly because of the vulnerable feeling I had with my feet in the stirrups and my bare bottom edging over the end of the exam table and some years ago (after gaining all the weight after COPD and quitting a forty year smoking habit) I said NO to more physical exams.

I told my doctor I didn’t want to have another pap smear or physical, nor did I want my two memories squeezed in a mammogram vise any longer. Year after year, she asked and I said, “no, thank you, Dr. Eady.”

It doesn’t matter how I justified my refusals, year after year I made the choice not to have them.

The trouble is- I now have a huge mass, cyst, tumor, whatever you want to call it that didn’t grow overnight.  The chances are a physical exam would have caught it earlier.
“tumors are often found during routine gynecological exams”

http://www.wisegeek.com/what-is-required-for-an-ovarian-cancer-diagnosis.htm

Karen Eady, MD is an Angel on Earth right here in Kitsap County – Bremerton to be exact –and is my primary doctor.  Dr. Eady was kind enough to take me when I asked her after Dr. Steele died over a decade ago.  She has kept me on and advised me ever since even though her specialty is Diabetes and I don’t have it.

Wasting time in regret is pointless.  I’m writing this here to suggest that sometimes the consequences of our medical choices become chickens coming home to roast.

I am also thanking Dr. Eady for all the years she has put up with me – not always a good patient or a prompt one.

God Bless you, Dr. Eady.

Thank you for all the years you have helped me move from one medical thing to another.  Additionally, thank you for the great people you recommended who have helped guide me through this COPD and Other Stuff.

With love and heartfelt thanks, your grateful patient and friend, Sharon O’Hara