COPD and Other Stuff

New Spelling for COPD – HOPE

Chronic Obstructive Pulmonary Disease is slowly advancing in leading cause of death in the US and most recently pushed to the third place spot when Strokes dropped back to fourth leading cause of death in the US.

We have WALKS for research dollars – Cancer – Heart – Arthritis – all worthy causes – but no WALKS or RUNS for COPD.

Well – a new study results seem to prove that some patients with COPD can stabilize and some get better – this is HUGE, GUYS!  The first time I have read anything giving hope to a COPDer in terms of some of us helped beyond learning what we can do to help ourselves…and points out what I love about a teaching hospital such as the University of Washington Medical Center.  The professors teach their medical students to have open minds to the possibilities and now a researcher from …

“… University of Nebraska Medical Center scientist worked on the study, analyzing the results described in an article this month in the prestigious New England Journal of Medicine.

“This study, I think, will really result in a change in attitude toward COPD,” said Dr. Stephen Rennard, a professor of medicine at UNMC.

Physicians and patients for many years have believed that COPD inevitably worsened. A landmark study in Great Britain in the 1970s appeared to confirm this notion.

The disease does worsen for many. But a study of 2,163 patients in 50 clinics and universities, including UNMC and Creighton, showed that some didn’t worsen over three years. Some, in fact, got better.

Rennard said this gives reason for hope among lung specialists and patients, and it possibly will lead to more aggressive treatment.

The Rev. Adam Ryan, a Catholic priest at Conception Abbey in northwest Missouri, called the study’s findings “very good news for me.”

Ryan, 56, said he is a lucky COPD patient whose disease hasn’t worsened. Diagnosed with emphysema in 1991, he eventually stopped smoking, improved his diet and started exercising. He takes three medicines daily for his COPD…. Rennard said finding the reasons for stabilization or improvement, and what treatments seem to work, weren’t part of the study. That research remains to be done.

He said the study also found that those with moderate COPD seem to deteriorate more rapidly than those with severe disease. In the past, he said, doctors tended to direct treatments toward those with severe illness and less to those who were moderately ill with COPD. This, too, may have been a mistake, Rennard said.”

http://www.omaha.com/article/20110926/LIVEWELL01/709269970/1161

World COPD Day is Wednesday, 16 November 2011 and this year I am going to WALK/RIDE FOR COPD!

I’ve invited the governor to join in. – I hope she does.  She would be welcome to carry my COPD cycling safety flag.  My husband, Chuck, made it and noted Rosemaler and teacher, Lois Clauson of Bremerton painted it.

These legs were made for walking and triking.

World COPD Day, Wednesday, 16 November 2011

Thanks for reading… Sharon O’Hara

Regular rehab is fabulous.  But?  It doesn’t go far enough – long enough – it hurts and it isn’t challenging enough.

Years ago, before beginning a concentrated physical exercise routine I asked my pulmo how high I should allow my heart rate to go and he sincerely and thoughtfully said I probably shouldn’t let it get over 100 at the beginning.  I laughed and told him it shoots to 100 just getting up from a chair!   I’ve not asked anyone since.

I’ve had a few really outstanding rehab technicians and I’ve learned from them.  They have to follow rules though and I don’t.   I’m a patient and I’m through coddling myself when I feel sick because I have a goal and it has to happen this year.

Except for one day when I was in Harrison and couldn’t make my swim session…we haven’t missed one swim session since we began 1 February 2011.  No matter what, my legs can ooze, my lungs labor and wheeze or burn with a fever – nothing stands in the way of a swim session.

Marilyn Grindrod is my swim coach and a miracle worker.  The only thing she said when we met and she asked if my doctor approved of what we planned to do and I told her I believed they did but I would not ever ask my doctors to give me a written note guaranteeing my fitness to exercise.  They couldn’t.  Nobody could.  Marilyn nodded and said, “get in the water, let’s get started.”

She doesn’t say I can’t do something. She leads the way and I follow as best I can.  Gradually I’m improving to a physical fitness I haven’t had in years and is proving out what Anna Marx, PT, DPT at Kitsap Physical Therapy in Silverdale proved to me:  the right machine/exercise WILL help my left hip get better and manageable.

Marilyn also, by changing my work-outs and her focus on breathing, must be getting oxygen to areas that have suffered without the oxygen they’ve needed…such as the Lymphedema in my lower legs.

Melissa will be surprised when I have to go in to be measured for another set of support stockings.  Lower leg muscle will meet her measuring tape, not the flab of yesterday.

My legs (left leg mostly) occasionally still need and get the Old Guy’s expert spiral and padded wrapping when the skin  gets too painful and I know if we don’t catch it, the skin will crack and lymphatic fluid  will again ooze  out.  This is the longest stretch I’ve not needed to see a doc or Melissa at NW Orthopedic and Lymphoma rehab in Port Orchard for another outbreak!  Melissa’s patient education works.

My ideal week is four, one hour or longer sessions in the warm pool water.  The work-outs are nonstop, smooth and I can feel my locked body become more flexible, more agile and I’m beginning to feel muscle again.

A couple weeks ago working out close to the diving board I impulsively reached up and grabbed the end of the board and began doing ‘chin ups’-  shooting myself up out of the water and above the board to my chest, lowered myself and repeated 15 times.  That was a lot of weight I pulled up – the point is I did it easily – the first twelve anyway.

So, you can’t live a life in the water can you?  No.  What I can now do on land is lift my left leg about a foot and flex my left ankle.  They’ve been – sort of – frozen.  When something hurts we have a tendency to back off and it becomes a spiral into a body that doesn’t work and eventually gets dumped into a wheelchair.

My patient opinion is that physical rehab works best, is most effective in the water.  The warm pool water resistance gets us further faster with less pain.

I believe in miracles.

In a Pulmonary Function Test two months ago, 16 February 2011 my FEV 1 (Gold Standard for COPD) sats had dropped across the board:    35% – 31% – 29%.

Last week 6 April 2011 across the board they were:                                                                            56% – 50% – 48%

Christopher Goss, MD  at the University of Washington Medical Center was amazed and doesn’t need to see me again for five or six months.

What made the difference?  The longer non-burst of Predisone he extended? A miracle?  Prayers?  Serious water work-out by a professional swim coach?

My sister lives in a small town in Kentucky and goes to a Revival church.  She and her companion each stood up and asked the minister and congregation to “pray for Karen’s sister, Sharon in Washington” and Karen says they do!

Kristin Okinaka, a reporter at the weekly CK Reporter AND a runner recently came out and wrote an article and took a photo that shows some of my recumbent trikes… http://www.pnwlocalnews.com/kitsap/ckr/news/119501909.html

The following article is what prompted this post today:   If Great Brittan can do it – we can too!

“Exercise pilot is successful for rheumatoid arthritis

People with rheumatoid arthritis (RA) in Portsmouth reaped the benefits from an exercise pilot, which was the first of its kind in the UK.

Volunteers took part in a 10-week programme to get exercising in the local area. They had tried various activities, including yoga, tai chi, walking and circuit-based exercises.

‘Appropriate, regular exercise is very important for people with rheumatoid arthritis, even when they are experiencing a flare of their symptoms,’ said Colin Beevor, matron and service manager of musculoskeletal outpatient department services at Queen Alexandra Hospital, where the pilot was launched. ‘Being more active helps to control joint swelling and ultimately can reduce the pain, stiffness and fatigue a patient may experience.’

Rather than hospital-based exercise, local facilities were used to encourage participants to become accustomed to working out in a familiar environment. By learning the basics of a variety of activities, participants were also able to discover which forms of exercise they enjoyed the most, with a view to continuing with the exercise after the pilot ended.

Around 700,000 people in the UK have RA, and while many recognise the importance and benefit of exercise for their condition, obstacles such as the prohibitive cost of classes or feeling stigmatised or embarrassed in group classes can stop people with RA regularly exercising.

Local firms such as private gyms and sports centres are now being encouraged to offer discounts to people with RA to enable the participants of the pilot to continue their exercise programme….”

The pilot, run by Portsmouth Hospitals NHS Trust, Solent Healthcare and UCB Pharma Ltd, received positive feedback from participants. http://www.arthritiscare.org.uk/NewsRoom/Latestnewsstories/Exercisepilotissuccessfulforrheumatoidarthritis

More later…thanks for listening… Sharon O’Hara

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

Good support groups are invaluable to us – we meet and share information from people just like us – brothers and sisters under the skin – or sometimes, on the skin.  Our ethnic background and appearance doesn’t pay a part in the disease we share – psoriasis, in this case.

My psoriasis has been ‘resting’ for a couple years, but it’s beginning to stretch and yawn itself awake again…ask my elbows.

I still wear the slippers I had to cut away to make room for the swollen crusty weepy sores of psoriasis on my upper feet and the sides of my toes.  Psoriasis can be nasty and mostly attacks kids.

A professor at the University of Washington Medical Center diagnosed my Psoriasis – called it a ‘classic case’.  He stands out as the only M.D. – ever – to recommend an online support group to me and the online support group is how I learned kids gets this…often disfiguring disease.    www.psoriasis.org

If anyone needs a ride, let me know…you won’t be sorry you made the effort to go.

***

Psoriasis:  More Than Skin Deep

Seattle (Bellevue), Washington

Saturday, March 19, 2011

Courtyard Seattle Bellevue/Downtown

11010 NE 8th Street

Bellevue, WA 98004

Speaker: Clive Liu, M.D.

RSVP for this event >>>

Psoriasis: More Than Skin Deep

SCHEDULE

9-9:30 a.m.

Registration and complimentary breakfast

9:30-12:00 noon

Psoriasis: More Than Skin Deep.

Hear from Dr. Liu about current treatment options, get research updates and learn how you can be part of the growing movement to find a cure.

Centocor Orth Biotech, Amgen Pfizer, Abbott, Galderma, Beiersdorf, Neutrogena

The National Psoriasis Foundation gratefully acknowledges Centocor Ortho Biotech, Amgen Pfizer, Abbott, Galderma, Beiersdorf and Neutrogena for their support. The Psoriasis Foundation is solely responsible for all content and development.

call 800.723.9166               events@psoriasis.org    www.psoriasis.org

National Psoriasis Foundation

6600 SW 92nd Ave, Suite 300  |  Portland, OR 97223-7195

***

More later…. Sharon O’Hara

I am a patient with questions and one of them is:

Is cycling better or healthier for a lung patient with Right Heart Failure than walking.

Based on medical terminology I clearly don’t understand – it APPEARS to say so to this patient…based on the paper I blogged on and the paper I found using the Google search for:  oxyhemoglobin desaturation.

“Oxyhemoglobin desaturation can be quite severe and can even lead to damage to vital organs, particularly the heart, to the point of being life-threatening.3”

Identifying Sleep Disordered Breathing in Neuromuscular Disorder Patients

by Joshua Benditt, MD, and Louis Boitano, MS, RRT

***

Chronic Obstructive Pulmonary Disease is one thing, add bone on bone left hip and a person has to really fight to move it and I’m doing in the pool what I can’t do ‘on land’ easily – leg up and loosen and build muscle around that hip so I can ride again.  One day the muscling should support it and make it comfortable enough to ride my recumbent trikes again.

I KNOW it will work because when I had physical therapy last year, the personable and talented Anna Marx at Kitsap Physical Therapy in Silverdale put me on a machine I could not only tolerate – a recumbent elliptical – over time I actually loosened up enough where I could and did – close my eyes and built speed and a rhythm on that machine – exactly like riding a recumbent trike, a horse…without the pain of the bone on bone left hip!

I’ve begun working out four days a week with an amazing professional swim instructor and I hope and expect to regain much of the function I lost.  There is nothing to lose and everything to gain. It appears to be working – a ‘study’ in itself.  More later.

That said, what about my question:

Is cycling better or healthier for a lung patient with right heart failure than walking?

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

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) exhibit greater oxyhemoglobin desaturation during walking than with cycling. The purpose of this investigation was to investigate differences in ventilatory responses and gas exchange as proposed mechanisms for this observation.

http://pugetsoundblogs.com/copd-and-other-stuff/2011/02/08/a-new-study-for-copders-mechanism-of-greater-oxygen-desaturation-during-walking-compared-with-cycling-in-copd/

Read more: http://pugetsoundblogs.com/copd-and-other-stuff/#ixzz1DTzzcGaW

Read more: http://pugetsoundblogs.com/copd-and-other-stuff/#ixzz1DTzg8nOT

“Oxyhemoglobin desaturation can be quite severe and can even lead to damage to vital organs, particularly the heart, to the point of being life-threatening.3”

Identifying Sleep Disordered Breathing in Neuromuscular Disorder Patients

by Joshua Benditt, MD, and Louis Boitano, MS, RRT

Joshua Benditt, MD, is a professor of medicine at the University of Washington School of Medicine, Seattle. He is also director of respiratory care services, Northwest Assisted Breathing Center, University of Washington Medical Center. He can be reached at benditt@u.washington.edu. Louis Boitano, MS, RRT, is codirector of the Northwest Assisted Breathing Center, University of Washington Medical Center. Boitano can be reached at boitano@u.washington.edu.

The symptoms of sleep disordered breathing in patients with neuromuscular disease can be subtle, but once recognized and treated, symptoms can improve.

http://www.sleepreviewmag.com/issues/articles/2007-01_03.asp

I don’t know how this all fits together for us – I also have sleep apnea and sleep with a bi-pap and concentrator bleed in to the bi-pap.

More later… Sharon O’Hara

Following is an intriguing article written by Casey Quinlan about doctor appointments.  It seems like an efficient idea – what do yhou think?

I’ll state here that I have stellar doctors and my primary Dr. Karen Eady, Bremerton and pulmonary Dr. Christopher Goss, University of Washington Medical Center are without peer.   I know my medical care health is in good hands and know how lucky I am.

I think the following article “I have a dream” is an interesting concept.   What do you think?
****
All I Want for Christmas Is Customer Service at My Doctor’s Office
December 24th, 2010
By Casey Quinlan. I have this dream. It’s about how, when I make an appointment to see my doctor – my primary care physician – the process is easy, honors my time as much as it does my doctor’s, and winds up running smoothly for both parties.
The dream starts this way: I realize it’s time for my annual physical, or any other usual-suspects periodic visit to my PCP. I open up my browser, point it to my doctor’s website, and log in to the secure patient portal. The one where I can see all my prescriptions, my personal health record, make an appointment (using the handy calendar function), request a prescription refill, ask the nurse or doctor a question via email, or download a PDF of my health record.
In my dream, using the handy scheduling function in the portal, I select a date and time for my appointment. The portal auto-populates that date and time with my name and insurance/contact information, since I logged in and it knows who I am. The system asks me if any information has changed. I click “no”. If I click “yes,” the next screen asks me to make the changes, and “submit”.
I select “annual physical” from the list of appointment types. I enter any information I need to related to this appointment request (i.e. “Doctor, I have this pain…”). Then I click “submit” and the system sends me a confirmation email or text (I picked which one I prefer when I set up my profile on the portal). It also schedules me for a blood draw in the week prior to the appointment, sending me a confirmation for a walk-in at the lab.
The scene in my dream shifts to the day of my doctor’s appointment. I’m scheduled to be seen at 11:00am. I get a text at 10:00am – or an email, whichever I selected when setting up my portal profile – saying that the doctor’s running about 30 minutes behind. I can either come in at 11:30am, or select one of the alternate appointment times in the text/email and be re-scheduled.
I select 11:30am, and I arrive a few minutes before that time. Signing in involves scanning a key tag – just like the one you get from your favorite supermarket – which lets everyone in the practice, from the receptionist to the doctor, know that I’m there, and on time.
If the administrative staff needs to talk to me for any reason, they’ll see me on their screen (usually because, in the day-before review, they checked the “confirm insurance details” or “update pharmacy info” or “collect co-pay” radio button) and invite me to have a private conversation. By using my first name only. No sign-in sheet (HIPAA violation) or yodeling my full name across a crowded waiting room (HIPAA violation).
By the way, in my dream the co-pay is collected by the system without having to get me or the staff involved. I’ve given the practice my credit/debit card number, and signed a consent form to allow automatic collection of my payment when I scan my key tag.
I take a seat in the waiting room…for about 5 minutes. I’m called – first name only – by the nurse, who takes me back to an exam room. I scan my key tag again in the room, and s/he checks my blood pressure, temperature, and heart rate using equipment tied into the practice’s IT network. Since my key tag was scanned, the readings are loaded into my record instantly.
S/he and I chat for a minute or two, and then I’m left alone to disrobe. The doctor arrives minutes later, and proceeds with my exam. S/he enters information on an iPad, but spends most of the time talking to me about how I’m feeling lately, the results from my blood work, what my exercise program is these days, how about those Giants/Redskins/Bears/whoever, and if I’ve had any meds side-effects that I haven’t mentioned.
The doctor tells me that my blood work shows everything’s A-OK, all my numbers look good. I’m up a few pounds, time to hit the gym a little harder to stop midriff-creep in its tracks. (It’s a dream, but it could become a nightmare.)
Face time. Real face time. Only about 10 minutes, yet I feel like I’ve been listened to, and engaged with, by my doctor. I feel like I’m a customer, not a meat-puppet on a conveyor belt.
Ok, I’m awake now. In a world where all of the technology tools to turn my dream into reality exist…but aren’t being used. Why not? Usually, I hear “they’re too expensive” or, my personal favorite, “my staff doesn’t like computers.”

Here’s the choice: either bring your staff up to speed or see your revenues shrink. If a practice uses patient-facing technology well, they’re in a good position for better revenue cycle management. If the practice is looking to move some of its patient panel to a subscription/concierge model, this dream MUST become reality.
It’s time for some technology-enabled customer service in primary care. That’s my dream, and I’m sticking’ to it!
http://www.disruptivewomen.net/2010/12/24/all-i-want-for-christmas-is-customer-service-at-my-doctor%E2%80%99s-office/

More later… Sharon O’Hara

Greetings!

And another reminder that I am a patient – not a medical person.  My comments are based on my own experiences and others and I take full responsibility for my opinion and perceptions.   My hope is that patients will speak up and question the medical people trying to help us when need be.  They can’t help us without an open and honest dialog.

That said, Lymphedema treatment is available.  Finding the right help at the right time is not easily available and getting the right treatment for the right diagnosis is sometimes difficult.  So is finding the right medical help match for a patient yet both are key to a patient’s survival and the best quality life possible.

Did you ever wonder how many frogs the fabled Princess kissed before she found the right frog?  Well, if frogs were medical providers, patients occasionally need to kiss lots of frogs to get the right match.

Lymphedema is nasty stuff and I was sorry to learn lymphedema can be a real problem for cancer patients, especially breast cancer.

Lower leg lymphedema disease is apparently different though since cancer caused lymphedema support groups don’t allow ‘regular’ lymphedema patients to join.   I know because I looked for close by lymphedema support groups and learned Harrison Medical Center had one.  I called to ask if I could attend a lymphedema support group session and the Harrison spokesperson didn’t think so.  She did promise to ask at the next meeting and let me know.  That was several months ago.

During the pleasant phone conversation, Harrison’s spokesperson asked how I knew I had lymphedema and I had to say I assumed it was caused from years of ignoring edema and pitted edema.

Her question stayed with me though and I recently asked my pulmonologist at the University of Washington Medical Center what caused it and his answer surprised me “Sleep Apnea”  …something to do with ‘insufficiency’…wow, Dr. Christopher Goss, I need to learn more about that!

Lymphedema is lymphedema or isn’t it?  When is lymphedema not lymphedema if

Harrison Medical Center’s Lymphedema Support Group is limited only to cancer patients?

I’m happy to say there is good news for ‘Breast Cancer-Related Lymphedema.’

***

http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

JAMA. 2010 Dec 8. Weight Lifting for Women at Risk for Breast Cancer-Related Lymphedema: A Randomized Trial.

Schmitz KH, Ahmed RL, Troxel AB, Cheville A, Lewis-Grant L, Smith R, Bryan CJ, Williams-Smith CT, Chittams J.

University of Pennsylvania School of Medicine and Abramson Cancer Center, Philadelphia (Drs Schmitz and Troxel and Mss Lewis-Grant, Bryan, and Williams-Smith and Mr Chittams); Department of Dermatology, University of Minnesota Medical School, Minneapolis (Dr Ahmed); Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota (Dr Cheville); and Department of Physical Medicine and Rehabilitation, University of Pennsylvania School of Medicine, Philadelphia (Drs Cheville and Smith).

Abstract

Context Clinical guidelines for breast cancer survivors without lymphedema advise against upper body exercise, preventing them from obtaining established health benefits of weight lifting. Objective To evaluate lymphedema onset after a 1-year weight lifting intervention vs no exercise (control) among survivors at risk for breast cancer-related lymphedema (BCRL)

. …

Weightlifting May Not Increase Risk for Lymphedema in Breast Cancer Survivors  http://www.medscape.com/viewarticle/734429

Laurie Barclay, MD

…

December 17, 2010 — A slowly progressive weightlifting program for breast cancer survivors does not increase the risk for lymphedema, according to the results of a randomized controlled equivalence trial reported online December 8 in the Journal of the American Medical Association.

“Breast cancer survivors at risk for lymphedema alter activity, limit, activity, or both from fear and uncertainty about their personal risk level, and upon guidance advising them to avoid lifting children, heavy bags, or other objects with the at-risk arm,” write Kathryn H. Schmitz, PhD, MPH, from the University of Pennsylvania School of Medicine and Abramson Cancer Center in Philadelphia, and colleagues. “Such guidance is often interpreted in a manner that deconditions the arm, increasing the potential for injury, overuse, and, ironically, lymphedema onset. Adherence to these precautions may limit physical recovery after breast cancer and, for some women, result in lost employment.”

The goal of the study was to compare onset of lymphedema after a 1-year weightlifting intervention vs a no-exercise control group among survivors at risk for breast cancer–related lymphedema (BCRL) who were enrolled in the Physical Activity and Lymphedema trial.

“We specialize in the treatment of acute and chronic orthopedic injuries and the evaluation and treatment of swelling disorders including lymphedema and vascular insufficiency.”

http://colpt.com/about.html

FREQUENTLY ASKED QUESTIONS ABOUT LYMPHEDEMA:

1.     What is Lymphedema?

Lymphedema is an abnormal accumulation of protein-rich fluid (lymph Fluid) and specialized cells (fibroblasts, keratinocytes) in the spaces between tissues throughout the body. When the lymphatic Fluid cannot be readily moved from the extremity to the trunk swelling is seen in the limb.

2.     What causes Lymphedema?

Lymphedema may be primary or secondary. Primary is when swelling is the result of lymph vessels that are too small, too few in number or too wide so the valves cannot work properly.  Secondary occurs from some kind of damage to the system. This could include surgery for lymph node removal, radiation to treat cancer, trauma or parasites that block the lymphatic vessels.

3.     What are the symptoms of Lymphedema?

Symptoms include tightness, swelling or thickening anywhere in the trunk or extremity, feelings of heaviness in the extremity, difficulty fitting into clothing in one specific area. Swelling may increase with activity and decrease with rest.

4.     Why did I get Lymphedema?

Medical science is not able to determine why one person gets lymphedema and the next person does not. It probably has to do with the number of lymphatics you had originally and what percentage are not working.

5.     Is Lymphedema curable?

Lymphedema is not curable; however, it is manageable with treatment.

6. What kind of treatment is available for Lymphedema?

There is a treatment approach called Complex Decongestive Physiotherapy(CDP). This method consists of several parts including manual lymphatic drainage, bandaging, proper skin care, compression garments, remedial exercises, and self-manual lymphatic drainage and bandaging. This treatment can be done by a physical therapist that has extensive training in the subject.

6.     What happens if Lymphedema is not treated?

Lymphedema is chronic and progressive. If it remains untreated the protein-rich fluid continues to accumulate which could lead to increased swelling and hardening (fibrosis) of the tissues.  The protein-rich fluid is a perfect environment for bacteria to flourish which could lead to recurrent infections. Untreated lymphedema can also lead to skin breakdown and loss of motion in the joints of the affected limb.

****

We have one life and, my opinion, a patient’s best bet is to get educated about whatever we have and learn how to best handle it.

Kitsap County Library System has a book on Caregiving for Lymphedema at the main library.

There are other helpful books the Silverdale Library (360-692-2779) had donated to them:

100 Questions & Answers about Lymphedema

Lymphedema: An Information Booklet

Lymphedema Management:  The Comprehensive Guide for Practitioners

Melissa at the Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard mentioned using a soft baby brush to clean the affected skin and it worked fine once my husband duck taped the baby brush to a section of pvc pipe.  The extra length makes leaning over easy for a lung patient and he made two – the second one I use to apply the skin lotion.  Dry skin cracks too easily for lymphedemia’ites.

I thought you’d enjoy seeing this old car photo.  December 2009 I was rushing to Harrison Silverdale ER but had to stop to take this photo! I don’t know why the old car was there, what kind of car it is, who owned it or why it was parked with the stuffed critters outside the ER.

Part 4 of 4

More later… Sharon O’Hara

I wrote the following about 2004 for the American Lung Association and re-found it goggling for COPD.  I’m posting it here in hope you will see the value in early detection Spirometry testing.

“Hungry for Air: Breathing Better Together

“Living with COPD/Emphysema and Sarcoidosis was a living death. I existed. I struggled to breathe, when I moved I panted, gasped for air like a fish out of water.

As I slowly showered and dressed, ready to go somewhere, I couldn’t sit down to rest. I fell asleep.

I went from a physically active life landscaping, restoring a wonderful property in Port Townsend to a blob who existed in front of her computer.

I searched the world web to discover what COPD/Emphysema was – what Sarcoidosis was, everything, anything I could find out about my diseases and the medications I took.

I couldn’t sleep in a bed – I couldn’t breathe – I dozed sitting in a chair.

By the time I arrived at the Pulmonary Department at the University of Washington Medical Center, I believed my days were numbered. Previously diagnosed with COPD/Emphysema, an open lung biopsy showed the fibrosis and granulomas of Sarcoidosis evenly throughout both lungs.

Without energy, I felt isolated, without a purpose, a shell, a mockery of the person I used to be.

I regretted a 40-year smoking habit, but didn’t dwell on it. The single most difficult thing I’ve ever done is stop smoking. I craved cigarettes and for the first time understood a drug addict’s ‘craving’ for a drug. I craved a cigarette many times a day, then almost daily for more than two years. Even today, occasionally the urge to smoke a cigarette becomes almost overwhelming.

That is how I felt then. Today I’m energized with purpose.

I found a support group online – the non-profit EFFORTS, begun by COPD’rs, run by COPD’rs and filled with folks like me working to change the world’s awareness of COPD. I want other lung folks to know they are not alone and how they can lead the best quality of life possible.

I want to see Spirometry tests for patients. common place among physicians – to catch COPD early – before it is too late. Other than stop smoking, the single most important thing Lungers can do for themselves is exercise.

And from the time I learned of the American Lung Association® of Washington’s Big Ride Across America, it is my dream – my goal.” – Sharon”

Fish Gotta Swim - People Gotta Breathe

Part  2 of 4     More later… Sharon O’Hara