Tag Archives: pulmonary fibrosis

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

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

Cancer Loses – Kathi Trostad of Poulsbo Wins

Cancer Loses – Kathi Trostad Wins

13 Jun e 2011 marks six months cancer-free for survivor Kathi Tronstad of Poulsbo!

After four operations in five and a half months, after times being told, “You have Cancer”, Kathi celebrates six months CANCER FREE.

Where does the Kathi Trostad cancer story begin?

Did her childhood add to the someday-adult Cancer risk?

1. Kathi’s mother took DES to avoid miscarriages when she was pregnant with her.

2. Kathi was sexually abused as a young child that turned her as an adult into an outspoken child advocate

3. Kathi took HRT and lived with stress.

5.  Female

6. Kathi’s mother’s aunt died of breast cancer about 1942.

7. Kathi’s mother had breast cancer, developed Lymphedema and lived another 27 years with COPD and the Pulmonary Fibrosis that killed her brother.

8.  Kathi’s father had prostate cancer, and it spread later to his bones and lungs.  His stomach ruptured and he bled to death.

9.  Her uncles died of lung and prostate cancer. Each of Kathi’s parents had a sibling female with uterus cancer in their 30’s but both survived to their 70’s.

“Then cancer came to my cousins but still I was told I had only a small risk.”

 

Following is Kathi’s story

In April of 2010 after feeling rotten and in treatment for a UTI and kidney stones, I went to the ER in Silverdale.  An urgent care doctor said I might have Diverticulitis. Of course I said oh, no wouldn’t I know if I did?

2 1/2 weeks in the hospital to drain the abscess in my colon then home to rest and of course I had a hole although it didn’t show up on the test so then I had a fistula.  I was making 3 dozen krumkake one night and was on #30 when I thought I was getting too warm from the iron, so I put on summer pajamas.

On the #34 krumkake, I went in the bathroom, saw a red round circle on my tummy, and took my temperature,   102ᵒ.   After doing #35 and #36 krumkake, I told my husband to get me to the Silverdale ER fast. Emergency surgery drained the wound.  They left it open for a colon resection the next week.  I was feeling lucky, feeling great and could eat for the first time.

I was on 4 West and I love those people – they were so good to me!  My surgeon is Dr. Halligan and what an angel of a man.  I had 18 inches of colon removed – all old abscess scars – so how I am alive is a miracle.

Of course, I had to change my check up with my gyn doctor and to get my regular mammogram so when I was well enough in August, I had no idea what was ahead.

December 13th I was diagnosed with breast cancer and then again on the 21st so I had a double lumpectomy on the 22nd.  I had one node involved.

Hearing it was cancer 3 times is a tad much.  I felt sorrier for Dr. Halligan than for myself but he did a fabulous job.  It looks more like the cosmetic mini-breast reduction that I was wanting.

Two years ago without all these new tests now available, they would not have found the spots.   I had tumor tests so did not need chemo and the 60 dose4s or radiation left me only a little tired.

The day after my last radiation treatment, I started my work on the NK Relay For Life.  Claudia Kilburn has joined the team too.  I spoke for a couple minutes at Poulsbo’s Daughters of Norway, they donated $100 to the ACS, and another member gave me a check for $25.  We have lost too many members to breast cancer.

Dr. Halligan has ordered two low key years for me -maybe a tad boring!!!  4 surgeries in 5 1/2 months is a bit much but it is all on the same deductible so it is all good!  I have met so many wonderful people it has been a blessing and I have renewed passion for some things I do.

My tumors were found in a regular mammogram and could not be felt by me or any of my doctors.

I was shocked when my doctor told me that the Norwegian community in the PNW has a lot of MS and breast cancer.  I have heard of pockets of both here.  They do not know why.  My brother just passed away May 29 of Muscular Dystrophy at 42 years – most of those years in a wheelchair.

I now have about 36″ of scars on my torso!  The cancer center has a knitting class for us to help us think after all the meds, drugs and such.  I was new that day and we were of course discussing things.  We were thinking of all the positive things that had happened to us during treatment.

Breast Cancer survivors is a real sisterhood (men get it too).  Cancer does not care who you are or what your plans are.  Nobody cares how much or how little money you have, what kind of house you live in, or if you have many degrees or none.

One of the funny comments was that now I have no need for dental records!

The NK Relay For Life is July 8-9. God is good.  Our team name is the Peninsula Cancer Center.  Dr. Madsen asked me to join on one of my first visits to her, which to me was a good sign!  The good Dr. thinks I will be here to do it!

The morning of Dec. 13 when I went for the first report after having a biopsy at the hospital I was planning lunch with my husband and then some more Christmas shopping for the grandkids.  The sun was out and the sky was blue!  When my doctor told me I just got light headed and thought, he is saying something I do NOT want to hear, but I simply said how much of this can you do before the end of December so I can get it on the same deductible as my resection!  The blessing here was I had already had 3 surgeries with Dr. Halligan and so I knew I was in good hands and could trust his judgment.  My breasts look great, the incisions are pristine, and fine lines almost the same color as my skin.

I saw three doctors at the Peninsula Cancer Center in a calm atmosphere instead of me driving around the County to different appointments.  They had met before I arrived to discuss my case and the plan. The bottom line is I am not maimed.  When I count my blessings, I count Dr. Halligan twice!

I am in the best health of my life after 60 doses of radiation and I have met so many wonderful and helpful people in this past year.

We have a wonderful health community here.  Dr. Halligan, Dr. Truong, Dr. Chiricella, Dr. Madsen, Dr. Meeks and Dr. Esser all got me the best care right here at home.  I know me and if I had to go to Seattle every weekday for six weeks for radiation I would not be this far along to recovery!  In addition, my tumors were tested so I did not need chemo because of the type they were.  I do need to say that Harrison Hospital, AMI, the 4 WEST staff, Kristen Bakke at KPT and KPS did so much to make my recovery seem easy.  My husband of almost 44 years, Rob, did everything he could to make recovery easier.  There are so many people to thank.

Over the last year, I have learned so much about myself.  So many people have helped along the way.

The day after my last radiation treatment, I met with Brie Storset at Starbucks to discuss the NK Relay For Life.  Brie oversees the Relays in Kitsap and Mason County.

I know I am blessed and I do count my blessings every morning. I thank God for life.

While 4 surgeries in 5 1/2 months is a bit over the top, I do know lots of prayer and God given skill by my caregivers set me on a better path.  I feel great, which is new to me but I am adjusting after feeling so awful for so long.  I believe there is purpose in all of life’s experiences and I intend to spend the rest of my life doing things to help find a cure.  Cancer still makes me grit my teeth.

I have had too many friends and family die from it and some at a young age.  My daughter said that cancer will be sorry it paid me a visit.

One of the staff at the Center told me that I know how to make lemonade out of a basket of lemons.  I do indeed!

Today I am a six-month survivor of Sequential Breast Cancer.  I intend to have many more birthdays!!

One of the North Kitsap Cancer activities is the NK Luminaria Ceremony honoring those still fighting and those who have passed away.

Melanie Cena is the Luminaria Chair for this year’s North Kitsap Relay For Life.

moalie43@hotmail.com

American Cancer Society | www.RelayForLife.org |1.800.227.2345

Following are faces of cancer.  The photographer for the first 5 is Kathi’s husband, Rob Trostad – 6th photo was taken by son-in-law, Marshall Menne.

Photos:

 

1.  Me in the radiation room with Anthony, a radiation therapist.  It was not scary or embarassing. He was showing my husband and they let Rob see the computer and watch while they did the treatment.

2.  Me in front of the Peninsula Cancer Center

3.  Me ringing the bell to celebrate my lst treatment, it is a tradition in cancer centers and let people in the clinic know that one more person has graduated.

4.  Sometimes I wore costumes.  One the second day Anthony said he could see me in a Vking helmet and my hair braided!  The cake is a Boob Cake to celebrate the best breast care anywhere.  Dr. Madsen loved it!  You need comnedy relief during treatment.  I went as the first day of spring,a leprechaun and a Viking Warrior princess and I wore hats.

5. Me with my radiation therapists, Cheri and Anthony

(these might me out of order as my memory is still a little off)

6. Life goes on.  Be with my grandchildrens who are teenagers first cousin on their daqd’s side.  I look healthy and holding newborn mattox was a healing experience.  This is the best photo I have had of me in years!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thanks, Kathi!  Your inspiring story is a Shout Out – why so many people are so passionate about cancer.  My own daughter led a Federal Way Cancer team last night.

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

Lung Disease Meeting Wednesday

I hope to see you on Wednesday for the next Harrison Medical Center’s Respiratory BB Support Group Program.

I’m disappointed we’re not having the meeting I’d expected with a Sleep Study M.D. doc and an explanation of … “is cycling healthier for a lung patient with right heart failure than walking.”

http://pugetsoundblogs.com/copd-and-other-stuff/2011/02/16/is-cycling-healthier-for-a-lung-patient-with-right-heart-failure-than-walking/

That said,  I’m looking forward to the topic of the newest home and portable nebulizer machines and hope new nebulizer meds are mentioned  In particular, I’d like to know what the latest nebulizer medications are and how they work in comparison to the old Albuterol.

***

Wednesday, March 16 – 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.

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

Dates and Locations

3/16/2011

1:00pm – 3:00pm

Rose Room

Harrison Silverdale

1800 NW Myhre Road

Silverdale, WA 98383

Home Nebulizers and Medications

We have a speaker for you this month from MedEquip Homecare Company.  MedEquip is part of the Rotech family of hometown healthcare companies.  Tony Vondran will be speaking about the newest home and portable nebulizer machines.  In addition he’ll be teaching you about home nebulizer medications and meter dose inhalers and their proper use.

Please join us for our great topic and some St. Patrick day treats.

Speaker:  Tony Vondran, RRT

Registered Respiratory Therapist

MedEquip Services, INC.

Topics:  Home Nebulizers and Medication

Joyce Belnap, RRT

Supervisor

Respiratory Therapy Department

Contact Info

Pamela O’Flynn

360-744-6685

respiratorycare@harrisonmedical.org

***

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

More later… Sharon O’Hara