Tag Archives: sarcoidosis

Does a tumor mean Cancer? Part 3 of 4

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

 

 

Sarcoidosis Support Group Meeting TOMORROW

Sarcoidosis Support Group meeting Saturday, 10 December 2011.

Time: 1:00 pm – 3:00pm
Where: Good Sam Hospital – 401 15th Ave SE, Puyallup, WA 98372
Mt Saint Helen’s room.

For more information contact:
Lynn Short, Executive Director
Sarcoidosis Networking Association
5302 South Sheridan Avenue
Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/

If anyone needs a ride, let me know.
Thanks for reading… Sharon O’Hara

World COPD Day,2011 and the Governor’s Proclamation meet in Bremerton’s City Council TODAY

Happy World COPD Day today – 16 November 2011!   (Local recognition activity follows….and Bremerton’s Mayor Patty Lent leads the way)  Sorry, I’m running a little late.

In addition – a new lung connection in the newly completed 20-year study found that COPD patients are five times more likely to develop lung cancer than normal lung folks are.  The warning is to offer Spirometry to detect COPD in the early stages to cut cancer and COPD deaths.  The investigative paper gave the shout-out in the prestigious European Respiratory Journal.

“It comes as an exclusive investigation by GP found a lack of PCT investment in the gold standard treatment for COPD is undermining patients’ quality of life and increasing practice workload.

Around one in 100 patients with the chronic disease developed cancer, compared with one in 500 without lung impairment.

Testing the lung function of former and active smokers would identify COPD earlier, thereby improving early detection of lung cancer and improving survival chances, it found.

Lead author Yasuo Sekine, of Tokyo Women’s Medical University, said: ‘The findings from our analysis suggest that early detection of COPD in addition to lung cancer screening for these patients could be an effective detection technique for lung cancer. However, further research is still needed to determine the selection criteria for COPD and lung cancer screening.’

Monica Fletcher, chairperson of the European Lung Foundation, said millions had COPD but it was often undetected.

‘People frequently ignore the symptoms of lung disease and leave it too late before going to the doctor, she said. ‘This research highlights the need for routine lung function tests, known as spirometry, to help improve quality of life and identify other conditions that could be present.’

Professor Klaus Rabe, president of the European Respiratory Society, said ‘On World COPD Day, we would also urge European governments to improve early detection of respiratory diseases, such as COPD.’

Meanwhile, patients’ respiratory associations across Europe said governments must work harder to reduce the £28 billion annual cost of COPD.

Proposals from the European Federation of Allergy and Airways Diseases Patients’ Associations to reduce this burden include listing COPD as a warning on tobacco products, improving access to spirometry and funding research on how to avoid exacerbations.

 

http://www.gponline.com/News/article/1104308/detect-copd-cut-cancer-deaths-experts-urge/

The Better Breather’s Respiratory Support Group meets today at Harrison Silverdale -in the Rose room from 1:00pm – 3:00 pm.  Pam O’Flynn will introduce Harrison’s new Respiratory Clinical Practice Educator, Martin Robin.  I know the meeting will be informative and lively no matter the topic and hope to see you there!

http://www.harrisonmedical.org/home/calendar/4903

“We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.”

Harrison Silverdale – 1800 NW Myhre Road – Silverdale, WA 98383

Pamela O’Flynn – 360-744-6685 – respiratorycare@harrisonmedical.org

 

Today – at 5:30 pm – Bremerton’s Mayor Patty Lent makes COPD, Kitsap County and Washington State history.  She is the first mayor in Washington State to present Governor Christine Gregoire’s Proclamation declaring November 2011 State COPD Month, to my knowledge.  Her generosity in recognizing the 3rd leading cause of death in the US is precious by recognizing today, 16 November 2011 as World COPD Day!

District 3, Manette’s hard working effective and beneficial city council member, Adam Brockus will present the Proclamation to Karma Foley of Seabeck who lost both parents to COPD.  Karma’s mom had the inherited type of COPD and with her oxygen tank, went out of her way to help me with several COPD/EFFORTS public meetings we put together a few years ago.

This COPD  historic event happens at 5:30 pm in the Norm Dicks Government Building city council chambers.  I will be taking pictures for y’all and trying not to let my eyes leak. Thank you!

I will ride a recumbent trike from Evergreen Park to the NDGB or walk it instead…very cold and wet out there.

Thanks for reading… Sharon O’Hara

ALPHA-1 is coming to town and Harrison Silverdale’s BB has them!

Alpha-1 is coming to town!  Silverdale to be exact – in the Rose Room at Harrison Silverdale to be more exact – 1:00pm to 3:00pm and we are all excited.

Mark Wednesday, 21 September 2011 for Better Breather’s partnering with Alpha-1 and Free Testing for the Alpha-1, a genetic component of Emphysema (COPD)

“American Thoracic Society (ATS) Guidelines

ATS guidelines recommend testing a broad range of patients with lung conditions:1

All adults with symptomatic emphysema regardless of smoking history

All adults with symptomatic COPD regardless of smoking history

All adults with symptomatic asthma whose airflow obstruction is incompletely reversible after bronchodilator therapy

Asymptomatic patients with persistent obstruction on pulmonary function tests with identifiable risk factors (smoking, occupational exposure, etc.)

Consider testing of asymptomatic individuals with persistent airflow obstruction without risk factors (no smoking or no known occupational exposure, etc.)”

The speaker is Nancy Bartholomew, with Prolastin-C from Grifols Inc.

 

 

I have included this photo taken from ATS “Rare Lung Diseases” because seeing it broke my heart.  It shows a ‘mother and her baby poignantly illustrating the fact that young women can be the victim of rare lung diseases.”

If we do not test, we cannot know and could easily be misdiagnosed and medically treated for the wrong condition.

… taken from American Thoracic Society (ATS) online “Some of the most exciting discoveries in pulmonary medicine have come from studying rare diseases. Insights gained from uncommon lung diseases often shed light on more common lung diseases…”  http://www.thoracic.org/education/breathing-in-america/index.php

Web sites of interest

National Institutes of Health Rare Diseases Clinical Research Network

www.rarediseasesnetwork.org

Orphanet  – About Rare Diseases

www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?Ing=EN

LAM Foundation

www.thelamfoundation.org

Hermansky-Pudlak Syndrome Network

www.hermansky-pudlak.org

Tuberous Sclerosis Alliance

www.tsalliance.org

 

Look for a table and chairs set up and friendly Harrison folks…Joyce is the RRT Harrison volunteer Better Breathers liaison…we are lucky to have her.

Rose Room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn   – 360-744-6687 – respiratorycare@harrisonmedical.org

 

If anyone needs a ride, contact me.

Thanks for reading… Sharon O’Hara

TREE OF LIFE hosts Better Breather’s Support Group Meeting on (COPD Equipment!)

Better Breathers meets tomorrow in Silverdale Harrison’s TREE OF LIFE room from 1 pm – 3 pm.

Sorry – change of topic.  Stat Home Care is bringing the different machines Lung folks use  and explain the use of each.  Example:  I’m on a BIPAP and Concentrator bleed in and not entirely sure how they work together.  Can a concentrator work without the BIPAP and how does it affect the patient?  It will be exciting to see the very latest The topic is Neuromuscular Disease, which includes Lou Gehrig Disease and a review of respiratory medications.

The speaker is Respiratory Therapist Christine Bromell.

It takes muscle to breathe and I’d like to understand how these diseases work on the body…including the Sleep Apnea and COPD progression work.  going because it takes muscles to breathe….we’re getting educated!

The fastest way to the TREE OF LIFE room is through the Labor and Delivery Baby entrance and down the long hall by the elevators.

Look for a table and chairs set up and friendly Harrison folks…Joyce is the RRT Harrison volunteer Better Breathers liaison…we are lucky to have her.

Neuromuscular Disease      COPD equipment including CPAP, BIPAP, CONCENTRATORS…

Speaker:  Respiratory Therapist Christine Bromell

Wednesday, 17 August 16, 2011

1:00pm – 3:00pm

TREE OF LIFE room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn   – 360-744-6687 – respiratorycare@harrisonmedical.org

***

Thanks for reading… Sharon O’Hara

Good Sleep Health and Sleep Apnea – Tomorrow!

Good Sleep Health and Sleep Apnea

Speaker:  Jess Lackey of Pacific Pulmonary Inc.

Wednesday, 20 July 2011

1:00pm – 3:00pm

Rose Room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

 

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

 

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn   – 360-744-6687 –  respiratorycare@harrisonmedical.org

****

My sleep apnea story in short form:  Some ten years ago the Sleep Study and bi-pap machine enabled me to get back into a bed after a few years of sleeping in a chair…I could not breathe lying down so had to sleep in a recliner chair…comfortable though it was, it was not a bed.

During this last year after an at home study I discovered my saturation numbers hit the basement while sleeping – bottoming out into the low 70’s.  100 is normal and nobody knew it…who knows how long that went on?

One of the questions I will be asking tomorrow:  Why don’t the c-pap or bi-pap machines monitor the patient’s blood/oxygen level during sleep to alert the doctor there is a problem.  Hint: After a length of time without oxygen, brain cells die.  http://www.nlm.nih.gov/medlineplus/ency/article/001435.htm

During sleep how low can the blood/oxygen levels go and for how long before brain cells die?  Personally, I want to hug and cherish my brain cells from a distance and keep them going as long as possible.

A sharp Harrison Medical Center ER doc caught a problem and had me put on a concentrator that gathers oxygen from the room and bleeds it into my bi-pap – leading to better sleep.  Except when the RLS bounces me right out of bed to move my legs and walk around.

Ignoring Sleep Apnea can lead to serious stuff – we need to be aware.

Tomorrow is the opportunity to ask the questions and have fun at the same time.

Refreshments!

See you Wednesday!  If anyone needs a ride, let me know.

Following are photos of my concentrator connected to the bi-pap and connected to the facemask that goes over my nose and blows air into my airway.

Some folks say the c-pap and bi-pap is too noisy.  I call it the sweet song of life.

Thanks for reading… Sharon O’Hara

You are Invited! Sarcoidosis Annual Picnic Saturday

The Sarcoidosis Networking Association annual picnic is Saturday at the home of Executive Director, Lynn Short.

9 July 2011 – 12:00pm – 4:00pm.

Hamburgers and hot dogs provided.

Bring a side dish and come prepared to have a great time – good food!  camaraderie!  fun!

5302 South Sheridan Avenue

Tacoma WA

*RSVP *   253-471-0423

Close to the Tacoma Mall, look for a grey house and white picket fence on the corner between 56th and 48th.

Sarcoidosis Networking Association

5302 South Sheridan Avenue

Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/

 

If anyone needs a ride, let me know.

See you Saturday!

Thanks for reading… Sharon O’Hara

Lung Patients Learn to Eat for Easier Breathing – Wednesday!

Harrison is doing a super job of helping us get educated and this month’s meeting is no exception.

See a video and brief glimpse of last month’s meeting on Pulmonary Function Tests with Joyce Belnap, RRT and successful Reduced Lung Surgery COPD patient Clint Halliday, there with daughter Laurie Schley.   Learn how a spirometry test is taken.  Thanks Harrison!   I also have video of other folks there and I’ll show them from time to time.

http://www.youtube.com/watch?v=bRLkUTWsKIw&feature=youtube_gdata

Harrison Medical Center’s Better Breathers Support Group Meeting Program promises to be a real eye opener and help us learn how to eat the right foods  for easier breathing , sometimes difficult for some of us to learn – “Eating to Breathe Easier.”

Taken directly from Harrison’s online Calendar of Events http://www.harrisonmedical.org/home/calendar/4891

Wednesday, May 18 – 1:00pm – 3:00pm

Better Breathers Support Group

Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.

Eating to Breathe Easier.

Featured Speaker:

Leah Werner, Clinical Dietician

5/18/2011 1:00pm – 3:00pm

Rose Room, Harrison Silverdale

1800 NW Myhre Road

Silverdale, WA 98383

Contact Info

Pamela O’Flynn 360-744-6687

respiratorycare@harrisonmedical.org

If anyone needs a ride, let me know.

Thanks for reading… Sharon O’Hara

Sarcoidosis r Us Support – Tomorrow!

Sarcoidosis Support Group Meeting

Saturday, 14 May 2011

Mt. St. Helens Room from 1 pm to 3pm

Good Samantha Hospital:  407 14th Ave SE – Puyallup, WA 98372-3770

Lynn asked… “How many of you tried the Celica diet?”

…and I have to say the O’Hara household got only as far as the mayo.  That’s right, mayonnaise.  The road to a gluten free mayo in our kitchen was curvy with cheese and mayo at every turn – thanks to Registered Voter responding to Angela Dice’s inquisitive nature, love of good food and telling us where to find it in the Kitsap Sun.  The Cheese Sandwich with a mayo crust is apparently notorious. And delicious.

http://pugetsoundblogs.com/foodlife/2011/04/12/who-has-the-best-grilled-cheese-sandwich-in-kitsap/

Directions from Silverdale

http://www.mapquest.com/?le=t&CID=mqtbardirections&vs=directions

Lynn Short,  Executive Director

Sarcoidosis Networking Association

5302 South Sheridan Avenue

Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/

  1. Meetings for the year 2011 are:
  2. May 14, 2011 – Good Sam Hospital
  3. July 9th, 2011 -Picnic at Lynn Short’s home
  4. October 8, 2011 – SNA Medical Conference – Oregon State University Hospital, Portland Oregon
  5. December 10, 2011 – Christmas get together, Good Sam Hospital

FYI:  We Sarcoid’ites are lucky to have such an active support group in Washington State.  To my knowledge, Lynn heads the only support group we have in this state.

More about Sarcoidosis:  http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

Read more: http://pugetsoundblogs.com/copd-and-other-stuff/2011/03/07/sarcoidosis-gluten-free-a-gluten-free-rn-speaker/#ixzz1MGJzC2c5

Rides are available…let me know if you need a ride.

Thanks for reading …. Sharon O’Hara

FREE Oximeter Readings and FREE Take Home Pic Flow Meter – Lung Patients Meet at the Rose Room – Harrison Silverdale

The oximeter is a wonderful aid to lung patients and Harrison’s BB meeting this month – Wednesday – will offer a spirometry reading to each of us attending.  PLUS!  Harrison’s gifted respiratory folks will teach us how to use the Pic Flow Meter AND send one home with each of us!

http://healthguide.howstuffworks.com/peak-flow-meter-picture-a.htm

Harrison and the  American Lung Association’s Better Breathers look at ALL aspects of lung disease and welcomes all of us – not just the third leading cause of death in the US, COPD (Chronic Obstructive Pulmonary Disease)  Many of us have more than one lung disease diagnosis often leading to heart disease.

If you have an oximeter, they’ll be glad to check the calibration – I’m bringing mine.

I’m also bringing a few extra copies of the Harrison spin off the Old Guy made up for me to use for daily health readings to give to my doctor – in case anyone wants one.

***

Wednesday, April 20 – 1:00pm – 3:00pm

Harrison Medical Center – Better Breathers Support Group

Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.

This Support Group is held the third Wednesday of each month.

4/20/2011 1:00pm – 3:00pm

Rose Room

Harrison Silverdale

1800 NW Myhre Road

Silverdale, WA 98383

Contact Info

Pamela O’Flynn * 360-744-6685 * respiratorycare@harrisonmedical.org

If anyone needs a ride let me know.  360-337-1454

Hope to see you Wednesday….thanks for listening… Sharon O’Hara