COPD and Other Stuff

This is a patient-to-patient blog to exchange information and resources...from COPD to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between.
Subscribe to RSS
Back to COPD and Other Stuff

Posts Tagged ‘doctor’

Patient Safety, Rosemaling, Spinal Disk – Yes, Related Here

Sunday, March 31st, 2013

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.

The following was copied verbatim with permission of Thor Dahl.  The place is Florida – not here – but we need to be aware that Mr. Dahl and his wife are credible established people and business folks running the largest international online rosemaling “club’ offered….and where I read the following shocking post.  It was a reminder – patient, friends and family –  be aware – stuff happens.

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

Inglis, Florida 34449   Ph:352-447-4178

 

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.   

1-IMG_2483See 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


Seniors and Patients Buff Up, Reduce Muscular Atrophy

Wednesday, August 31st, 2011

 

Seniors – patients – buff up or lose it.  My swim coach is transitioning me to the eleven-pound weights in our water workouts and I’m FEELING GOOD.

Feeling good includes decreased blood pressure and increased flexibility to bend over and pick up something from the floor, reaching up to an overhead cupboard and angling a heavy pan down from the shelf, and, gasp! – feeling formally loose fitting underwear snug tight around my thighs.

Why is tight underwear important?  Because it means – to me – that muscle is building around my hip joints to protect my bone on bone left hip from injury and enabling me to have a more mobile life. … From a patient point of view.  Ask your doctor what strength and aerobic exercising will  do for you as a senior or as a patient.

Feeling good means my left leg and joints aren’t frozen in place and my left ankle flexes again to help walk and balance.

Does that mean I threw the walking sticks away?  No – not yet, maybe never…they are tools to assist in a more secure balance and living.  They tie on to a recumbent trike so I can ride and have them to assist getting out of the seat.

“…If people lose 30% of their muscle strength between the ages of 50 and 70 years according to “Deutsches Arzteblatt International, Frank Mayer and colleagues from the University of Potsdam conclude that progressive strength (resistance) training counteracts muscular atrophy in old age (Dtsch Arztebl Int 2011; 108(21): 359-64).”

Study Of Strength Training For Seniors Finds Increased Muscle Strength, Reduced Muscular Atrophy

….

The authors investigated the extent of the effects that can be achieved by strength (resistance) training in elderly persons and which intensities of exercise are useful and possible in persons older than 60 years. They found that regular strength (resistance) training increased muscle strength, reduced muscular atrophy, and that tendons and bones adapt too. These successes in turn had a preventive effect in terms of avoiding falls and injuries. Greater intensities of training yielded greater effects than moderate and low intensities. In order to increase muscle mass, an intensity of 60-85% of the one-repetition-maximum is required. In order to increase rapidly available muscle force, higher intensities (>85%) are required. The optimum amount of exercise for healthy elderly persons is 3 to 4 training units per week.

In the coming decades, the importance of maintaining the ability to work and to make a living will increase, as will the need for independence in everyday life and leisure activities. The increase in the retirement age to 67 years from 2012 means that one in three adults of working age will be older than 50 by 2020, and by 2050, the proportion of people older than 60 in Germany’s population will rise to an estimated 40%. Currently, the proportion of elderly persons who practice strength (resistance) training is about 10-15%.”

Dr. Frank Mayer

Deutsches Aerzteblatt International

http://www.medicalnewstoday.com/releases/228254.php

Thanks for reading… Sharon O’Hara


Oximeters Save Lives – Be Aware

Monday, April 4th, 2011

The Oximeter can train the COPD patient to check our own blood/oxygen levels and to learn to trust our own body awareness.  That’s why I bought my own Oximeter some years ago.   I didn’t want to guess and needed to prove to myself that Pursed Lip Breathing (plb) really works.

It does work and the oximeter shows our sats rise as we plb.   Rehab teaches us to use the 1 – 10 level of awareness and it certainly works great for guessing pain level.  I don’t think it works as well guessing our blood/oxygen level.   I want to see those numbers rise back into the safe mode.  My oximeter actually once helped save my life on an airplane ride and I’ve told that story before.

Harrison Medical Center gave me a chart to use on my last hospital visit and discharge.  I liked it and began using it every morning to track my daily statistics.  It shows progress or lack of and I began to add a few other things to track including first thing in the morning oximeter reading, temperature and how long I slept.

Not all COPDers doctors use the Oximeter to check their patient blood/oxygen level and so the COPDer should track their own stats and take it to doctor appointments.  A daily record taken first thing in the morning is a far better record of the patients real stats compared to the moment in time measurements during a doctor office visit.  Maybe not… maybe a medical person would tell us.

I have no idea if this chart will be useful for the average doctor or not.  I’m seeing my pulmonologist this week and I’ll let you know what he thinks about it.

Heartfelt thanks to the Old Guy who formatted the chart so I could show it here.  I sometimes wonder if he would have stopped to offer water in his Sierra Cup to the strange blonde who smoked when she finally stumbled into the first rest stop on the Olympic College Mountaineering Class climb on Mount Washington going on forty years ago had he known what was ahead.   I’ll never ask.

My oximeter has gone through three batteries in the years I’ve had it…seven or so years and was calibrated at Harrison Medical Center about the same time.

These are the tools I use…  they can be calibrated on a doctor’s visit.

More later…thanks for listening… Sharon O’Hara


Patients Need to be Educated. Are Some Physicians too Ignorant?

Friday, April 1st, 2011

The other day I was shocked to run into a friend I hadn’t seen recently and to see this  formally  physically fit verbal person limping gingerly with the help of a walking stick sickened me as I listened to the story – and PERFECT example why communication between patient and physician is paramount to that patients well-being.

A few years ago my bone on bone left hip needed a bone doctor.  Before I could get to the local appointment with a bone doctor, the pain sent me to a Prompt Care after a call to my primary physician, Karen Eady, M.D.   The doctor ordered x-rays – yes, arthritis and didn’t do anything further since I had an appointment with a local orthopedic doctor in a few days.

The orthopedic doctor didn’t say much of anything but talked in terms of an operation and suggested several over the counter meds for the pain.  I take meds for my lungs and other medical conditions and know non-prescription drugs can counteract with each other the same as prescription drugs can and cause huge problems.  I’m leery.   That said and after a non-informative brief discussion, he walked away and I called after him, “Doctor, what do I have?”

“Arthritis” he called back then disappeared around the corner.   Okay.  But I had expected him to tell me what I didn’t know and give me the type of arthritis – there are more than 100 different kinds of arthritis.

Sometime later I complained to another doctor about the encounter and he laughed and said orthopedic docs never communicate – sort of a ‘rule’ and laughed again.  I grinned but told him that’s wrong.  By then, I had visited one of the University of Washington Medical Center’s orthopedic surgeons and he educated me what I had and what it was doing and what we could do about it.

I told my laughing doctor the U surgeon DID inform me what was going on and gave me options.  He seemed surprised that any orthopedic doc spoke more than 10 words to a patient.   I shrugged it off and decided that the performance in the operating room must be all that counted.

Seeing and listening to my friend the other day though made me realize that the problem with doctors who do not/can not communicate with their patients is that they must not DO NOT LISTEN to their patients either!  Her complaints were ignored by her doctor and it seems to be a big surprise to him that she now has serious medical problems, not just the replaced hip and another operation to fix what should never have happened had he listened to her!

I suggested that my friend run, not walk to the University of Washington Medical Center for a through exam and get things resolved.  That she not waste any more time – that she not do what I did all those years ago.

Do not waste one moment on an ignorant physician, folks.

Without exception, every doctor I’ve met at the UWMC is a communicator…they listen.

Orthopedic doctors who can’t communicate with their patients?  Let them operate on themselves.  A physician who can’t respect their patient enough to communicate with them is not one who listens to them either – in my opinion as a patient.

More later…thanks for listening… Sharon O’Hara


Lymphedema Stockings, Cream and Garden Gloves

Saturday, December 11th, 2010

Greetings!  Following are a few photos showing how to get compression stocking on step by step.  Each patient is different and what works for me/us, may not work for anyone else…ask your doctor.

That said, Mellissa Mercogliano of Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard has not seen these photos and may note that we may be off from what she taught us  and  is not responsible for it.  She IS responsible for educating us and  leading to comforting and pain free leg wraps.


Part 3 of 4

More later…. Sharon O’Hara


Pain Matters – Anger, Sad Study Results

Monday, September 27th, 2010

Pain matters – not only to the person feeling it – to the whole family. The idea that our own feelings of anger and sadness might increase our pain level mean we could learn to control the anger and sadness, lessening pain and – if it works on the respiratory system – we can lessen and control the breathing rough times.

Could the same Utrecht University study results apply to lung patients?  It seems a strong possibility based on my own recent experience.

For lung patients it’s important to remember that pain pills negatively affect the respiratory system – we can’t just take them as others might, for pain.  Ask your doctor or Pain Center.

The importance of the study may be seen in the next two paragraphs:

“The treatment effects were significant, showing notable positive differences in physical (pain, fatigue, and functional disability) and psychological (negative mood and anxiety) functioning, and impact of FM for the TC in comparison with the WLC. Clinically relevant improvement was found among patients in the TC group.

“Our results demonstrate that offering high-risk FM patients a treatment tailored to their cognitive behavioral patterns at an early stage after the diagnosis is effective in improving both short-and long-term physical and psychological outcomes,” says junior investigator Saskia van Koulil. “Supporting evidence of the effectiveness of our tailored treatment was found with regard to the follow-up assessments and the low dropout rates. The effects were overall maintained at 6 months, suggesting that patients continued to benefit from the treatment.””

I asked if they had done a separate study for men and discovered that few men get fibromyalgia and was not included in the study.

“Dr. van Middendorp’s response follows:

There were two reasons why men were not included in this study. First, because of the female preponderance in fibromyalgia. This makes it very difficult to include enough men with fibromyalgia to draw reliable conclusions. Second, because men and women differ in emotions, ways of dealing with their emotions, and in reported and experimental pain levels, they cannot just be regarded as one group. Resultantly, we decided to focus our study on women only. There was not a separate study done in men.”

“Anger amplifies clinical pain in women with and without fibromyalgia -

Sensitizing effect of anger and sadness not limited to fibromyalgia patients”

Researchers from Utrecht University who studied the effect of negative emotions on pain perception in women with and without fibromyalgia found that anger and sadness amplified pain equally in both groups. Full findings are now online and will publish in the October print issue of Arthritis Care & Research, a journal of the American College of Rheumatology.

The Utrecht team theorized that specific negative emotions such as sadness and anger also would increase pain more in women with FM than in healthy women. Their study examined the effects of experimentally-induced anger and sadness on self-reported clinical and experimentally-induced pain in women with and without FM. Participants consisted of 62 women with FM and 59 women without FM. Both groups were asked to recall a neutral situation, followed by recalling both an anger-inducing and a sadness-inducing situation, in counterbalanced order. The effect of these emotions on pain responses (non-induced clinical pain and experimentally-induced sensory threshold, pain threshold, and pain tolerance) was analyzed with a repeated-measures analysis of variance.

Self-reported clinical pain always preceded the experimentally-induced pain assessments and consisted of reporting current pain levels (“now, at this moment”) on a scale ranging from “no pain at all” to “intolerable pain.” Clinical pain reports were analyzed in women with FM only. Electrical pain induction was used to assess experimentally-induced pain. Participants pressed a button when they felt the current (sensory threshold) and when it became painful (pain threshold) and intolerable (pain tolerance). Four pain assessments were conducted per condition, and very high internal consistencies were obtained.

More pain was indicated by both the clinical pain reports in women with FM and pain threshold and tolerance in both groups in response to anger and sadness induction. Sadness reactivity predicted clinical pain responses. Anger reactivity predicted both clinical and electrically-stimulated pain responses.

Both women with and women without FM manifested increased pain in response to the induction of both anger and sadness, and greater emotional reactivity was associated with a greater pain response. “We found no convincing evidence for a larger pain response to anger or sadness in either study group (women with, or without FM), said study leader Henriët van Middendorp, Ph.D. “In women with FM, sensitivity was roughly the same for anger and sadness.”

Dr. van Middendorp concludes, “Emotional sensitization of pain may be especially detrimental in people who already have high pain levels. Research should test techniques to facilitate better emotion regulation, emotional awareness, experiencing, and processing.”

In a related study, a research team from Radboud University Nijmegen Medical Centre found that tailored cognitive-behavioral therapy (CBT) and exercise training tailored to pain-avoidance or pain-persistence patterns at a relatively early stage after diagnosis is likely to promote beneficial treatment outcomes for high-risk patients with FM.

The Nijmegen team evaluated the effects of this approach in a randomized controlled trial. The study compared a waiting list control condition (WLC) with patients in a treatment condition (TC) to demonstrate improvements in physical and psychological functioning and in the overall impact of FM.

High-risk patients were selected and classified into 2 groups (84 patients were assigned to a pain-avoidance group and 74 patients to the pain-persistence group) and subsequently randomized to either the TC or WLC. Treatment consisted of 16 sessions of CBT and exercise training, tailored to the patient’s specific cognitive behavioral pattern, delivered within 10 weeks. Physical and psychological functioning and impact of FM were assessed at baseline, post-treatment, and 6-month follow-up.

###

These studies are published in Arthritis Care & Research. Media wishing to receive a PDF of these articles may contact healthnews@wiley.com.

Full Citation: “The Effects of Anger and Sadness on Clinical Pain Reports and Experimentally-Induced Pain Thresholds in Women With and Without Fibromyalgia.” Henriët van Middendorp, Mark A. Lumley, Johannes W.G. Jacobs, Johannes W.J. Bijlsma, Rinie Greenen. Arthritis Care and Research; Published Online: April 21, 2010 (DOI: 10.1002/acr.20230); Print Issue Date: October 2010. http://onlinelibrary.wiley.com/doi/10.1002/acr.20230/abstract

“Tailored Cognitive-Behavioral Therapy and Exercise Training for High-Risk Patients With Fibromyalgia.” Saskia van Koulil, Wim van Lankveld, Floris W. Kraaimaat, Toon van Helmond, Annemieke Vedder, Hanneke van Hoorn, Rogier Donders, Alphons J.L. De Jong, Joost F. Haverman, Kurt-Jan Korff, Piet L.C.M. van Riel, Hans A. Cats, Andrea W.M. Evers. Arthritis Care and Research; Published Online: June 2, 2010 (DOI: 10.1002/acr.20268); Print Issue Date: October 2010. http://onlinelibrary.wiley.com/doi/10.1002/acr.20268/abstract

Arthritis Care & Research is an official journal of the American College of Rheumatology, and the Association of Rheumatology Health Professionals, a division of the College.

Thank you, Dawn Peters, for your assistance!

Part 2 of 2

More later…. Sharon O’Hara


A Edema, Cellulitis, Lymphedema Story in Pictures

Monday, June 28th, 2010

I’m using a thumb drive to download these photo’s – I hope it works. I hope someone – somewhere – uses what I’m trying to say to avoid reaching this point of infection/heal. Reason being…each time, it is worse, takes longer to heal and the pain is relentless and sometimes unbearable.

Do whatever your doctor tells you to do – get rid of your edema. It isn’t funny nor casual. It can turn ugly and very serious.

Edema Problems Today? Look at the Possible Future?”http://pugetsoundblogs.com/copd-and-other-stuff/2010/06/28/an-edema-cellulitis-lymphedema-story-in-pictures/”A New Pretty Face””YES!”an-edema-cellulites-lymph-edema-story-in-pictures/”Irony in a Sign” “A Look Ahead?””Ignoring edema isn’t smart” “Time to Heal” “A Morning View””Early Morning View From Harrison” “Another View” “Harrison\’s Great Corner Upper Room””Looking Back” “Life is Good””Home Again” “Ahh, Almost Over””Almost Healed From the Last Time…pre Harrison” “Bacteria Grows””A Raging Infection” “Another Look at Edema” “Overdue Unwrap at Home””A Different Look” “It Did Not Stick””A New Wrap From Harrison& Wound Care Center” “Relief in Healing””Healing” “Interventions Healing is Fast””Fast Healing” “Once On – Comfortable””Stockings to Keep Edema From Returning”
More later… Sharon O’Hara


Stand Up and Scream, Sharon

Tuesday, April 6th, 2010

I found the following on the Internet this morning. What I didn’t say to her is that I was born and raised here, all military. Puget Sound Shipyard where my dad worked 36 years, Bangor, Keyport, Indian Island, Ft. Lewis…we’re full of military folks. Sailors or soldiers…active and retired and I’ve written about finding her article right here on COPD and Other Stuff.
No one cared enough to comment.

I’ve got the most wonderful 59 minute interview by a submarine sailor shore duty stationed at Bangor, soon to join another submarine, Sea Wolf…. caught on tape but I can’t use it until it is on my computer.

This submariner was sent over there for 10 months…unaware he and his buddies were inhaling poisons that could affect his breathing for the rest of his life. Even now knowing, his concern and attitude was not about himself but about future service people, unwarned, untrained…future victims of currant ignorance and apathy.

BTW: The general was over there and my interviewee saw him no more protected than anyone else.

Who can I pay tol type out this interview for me or take it and run?

Kitsap Sun…this is a local story, an important story. This is a good interview. I’ll give it to you. Call me.
Please, help save lives…

More later…Sharon O’Hara

*************************************

Stand up and scream, Sharon
by Carole Bartoo

I got a call today from a lady named Sharon O’Hara in the Puget Sound area of Washington State. She writes a blog called “COPD and other stuff” basically chatting up what news she finds on the internet about emphysema, which she has.

She found my article about Dr. Robert Miller’s work to define a mysterious lung condition suffered by soldiers who had served in Iraq, (article here ) and called me up.

Before I even got out the word “hello” she launched in: “Do you know what your article has done? It has blown up my world! I don’t know why people aren’t standing up and screaming about this.”

After a second I caught up as asked her if she meant the article on the soldiers. “These are our servicemen and women!” Sharon said sounding pretty outraged. ‘Preaching to the choir, I told her. I too couldn’t believe the media hadn’t taken the story on.

Sharon is 56 and has had a good life. (Diagnosed at 56)
She was especially fired up about Dr. Sylvia Waters, an army doctor, former marathon runner and mother of 7-year-old twin girls.

Dr. Sylvia Waters in Iraq
This was a soldier and doctor with her whole life ahead of her, who now has a form of obstructive lung disease that will forever keep her from being fully active.

Sharon left a comment on the web version of the story… and a lot of other people did too. They said this was important to them, important to their loved ones. They wanted to hear more.

Only, that’s the problem. No one is hearing more because the media has been singularly unimpressed with the story. In the four years since tiny mentions of Dr. Miller’s findings about these soldiers and the respiratory issues they suffer first hit the web, the only calls that have come into Vanderbilt have been from soldiers and their loved ones. No media.

After talking to a few reporters we finally got one media person out to report on the story. Not to slight that (to-remain-unnamed-until-the-story-comes-out) reporter, but – Come ON.

Anymore it is frustrating and sad to watch/read the news and see story upon story about the entertainment industry: who fell over on “So you think you can dance” and which Idol star came out of the closet. Who cares when there are genuine concerns out there that affect people’s actual lives?

Again, Come on. I guess I have to be grateful that through the power of the internet, not all the decisions about dissemination of news belong in the hands of people who are fascinated by TV shows about singing and dancing.

Go Sharon.

Go to www.burnpits.org for personal stories of these soldiers

http://getthenac.wordpress.com/2010/04/05/stand-up-and-scream-sharon/

________________________________________
Possibly related posts: (automatically generated)
• Stand up and scream, Sharon
Posted in Uncategorized | Tags: Afghanistan, Dr. Robert Miller, Iraq, lung problems, Resiratory problems, Soldier, Vanderbilt University Medical Center
« A Good Day at Work

http://getthenac.wordpress.com/2010/04/05/stand-up-and-scream-sharon/


Quality of Life Can Mean Pedaling For Life

Friday, February 12th, 2010

Medical patients, bicycles, bicycle paths, exercise – all share a common thread…like a slow deep breath of sweet, life-sustaining air. Quality of Life makes life worth living.
Quality of life means different things to different people, a loved bed ridden patient and a physically active patient can and do share a quality of life.

The grandmother of my best friend in grade school was bedridden and lived with the family I spent much of my non-school time with. Mrs. O was a complete and treasured member of the family. The oxygen tanks were set up in her room and she entertained visitors – us, many times throughout the day as we ran in to tell her about the latest horse fall or dog and piglet tale. She always had time for us. Sometimes the doctor was there and we could not visit, but most of the time, she was our person to visit throughout the day and evening.
Mrs. O was always busy with her hands mostly working on the latest crocheted doily. She was a cherished and vital member of that family and I still have a doily she gave me all those years ago. To be fair and complete the picture, Mrs. O’s daughter-in-law was a stay at home mom and they also had other assistance many families do not have today.

Mrs. O was unable to get out of bed in those days, but she would have rejoiced with the folks who live in Portland that Portland’s bike plan was approved when the “Portland City Council unanimously approved the $600 million 2030 Portland Bicycle Plan yesterday. A major goal of the plan is to have 25% of all trips in the city be by bike by the year 2030. A highlight of the plan includes adding 700 miles to Portland’s already extensive bikeways network.”
The point is people flock to areas that cater to our human need to move, to exercise for quality of life – outside a gym.

We spend millions of dollars on hospitalizations and medical care that might well be avoided if we placed more emphasis on keeping patients moving and educated, not shoving them into wheelchairs and scooters, but getting them into rehab and teaching them how they can best help themselves into a quality of life.

My favorite way of transportation and exercising for fun is the recumbent trike. Unfortunately, Kitsap County is notorious for its dangerous roadways for bike riders and does not have a very bike user-friendly reputation.
Bainbridge Island is the one Kitsap County exception where the voters are health conscious and knowledgeable enough to know that the dollars they put into bike paths (and schools) today will save them an untold amount of otherwise spent health cost dollars tomorrow.

I am working hard in physical therapy to work around my bone on bone hip and rebuild muscle to get me back on my trike and riding. I have a bike trip to make this year and I hope the route I am taking is a bike friendly one.

Congratulations to Portland’s health conscious voters and city council – may your wisdom rub off on us here in Kitsap County.

http://www.ecovelo.info/2010/02/12/portland-bike-plan-approved/

More later… Sharon O’Hara


Meet Alec

Tuesday, December 1st, 2009

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.
________________________________________
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.

*************************************

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…..

*********************
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

*****************************************
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
**************************************************************
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…….

**********************************************************************
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


Available on Kindle

About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

RSS Subscription

Categories

Archives