Tag Archives: Christopher Goss

Does a tumor mean Cancer? Part 3 of 4

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kristin, physical therapist…

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

Gretchen showing how the vac – the entire devise works.

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

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

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

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

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

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

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

Thanks for reading… Sharon O’Hara

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

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Does a tumor mean Cancer

Sharon O'Hara

Yesterday I graduated from Harrison Home Health services; an organization I didn’t know existed two months ago and where I learned firsthand that Kitsap County has the greatest group of RN’s and LPN’s on this planet for medical home care.

My June 11, 2012 belly tumor operation at the University of Washington was a rip roaring success, thanks to surgeon, .Renata R. Urban, MD and her superb medical team.

Six days after the operation I returned home to husband and dogs and into the caring, capable hands of the Harrison Home Health services team.

The Harrison Home Health services team followed doctor’s orders exactly – a team care RN or LPN came every three days to change the dressing, including weekends. The vacuum machine hooked to and inside my belly became my best friend 24/7.

At 73, I am lucky to be alive. I’ve learned several health lessons along the way since 1997 – the key one being to continue to do whatever I can to promote early detection Spirometry testing for COPD.(Chronic Obstructive Pulmonary Disease) the third leading cause of death behind heart disease and cancer.

Getting COPD for many of us means taking a nosedive into the immune system and developing other unpleasant medical conditions. COPD is slow developing, taking about twenty years to develop symptoms enough to tell your doctor. By then usually 50 % of the lungs have flipped from the healthy state – they are destroyed.

The fact is I was a healthy physically fit person until I was hospitalized with COPD in 1997. Since then I have gathered one disease after another.

This latest – a fluid filled belly tumor squeezed my lungs making it harder to breathe. It squeezed everything in its path and seemed to shut down my system with a growing hard belly and pain especially in my bone on bone left hip until I reluctantly shuffled from place to place. I canceled and rescheduled doctor appointments thinking the pain would ease with time.

As time passed and my ability to get around decreased, Chuck called various agencies in Kitsap County thinking Kitsap County must have public transportation with a lift available for patients trying to get to medical appointments. The problem was I could not lift my left leg to step up and couldn’t use the right leg either – too painful on my left hip. I could not lift it…only pull it after me.

We discovered one source in Kitsap but it would cost us over $400. to drive around from Poulsbo through Tacoma to the University of Washington Medical Center for my lung appointment.

It felt like something was growing in my belly but the only possibility was impossible so I shrugged it off to imagination. I never imagined a tumor nor mentioned it to my doctors.

Funny thing, a complete physical might well have discovered the hard as a rock-growing belly and tumor, had I not sworn off getting physicals.

It was only when I tried to cancel and reschedule my third week canceled appointment in a row with my pulmonologist, Christopher Goss, MD at the University of Washington Medical Center that I was told ”…couldn’t reschedule for the foreseeable future…” ( the doctor was off to Europe the end of the week)

I told my husband we had to make that appointment no matter what happened because I didn’t think I could manage much longer. We HAD to make that appointment and I asked him to get what I thought would help get me into the Suburban.

It included tying a rope across the back of the front seats to pull me into the back seat once I shuffled my way up the dog plank and it should balance me into turning to sit down. The plank was supported by the borrowed Poulsbo Wal-Mart milk crates he placed underneath the plank.

I shuffled up the plank aided by my walking sticks but the rope failed after I pulled myself inside and let go of one end. The rope wasn’t tied off and I fell forward and twisted with my neck strained across the top of the back seat.

As soon as I could talk, I asked Chuck to get in and drive “We’re making my lung appointment…we’re going to Seattle and ferries don’t wait.”

At the UW’s parking garage, Chuck ran to get a wheelchair and I pulled myself out of the car and into the chair. He raced us to my appointment on the third floor.

I told Dr. Goss about my hard belly and the pain. Thank heavens he looked. When my hard belly wouldn’t budge, Dr. Goss scheduled an x-ray and blood testing. The x-ray showed up black and by the time Chuck wheeled me out of the blood lab, Dr. Goss was there and told us I had a room and that an ultrasound was scheduled in a few hours..

Most medical folks are cool about letting me take photos and allowing me to use them here once I explain about my purpose – COPD and Other Stuff.

Its important that people understand that COPD is only the beginning – an opening door to really nasty, painful medical conditions that follow for too many of us.

Ask your doctor for an early detection Spirometry test. Please.

COPD itself is a long slow smother – not painful. Some of the medical Other Stuff can be really nasty.

Renata R. Urban, MD – Assistant Professor

Department of Obstetrics & Gynecology – Division of Gynecologic Oncology

Seattle Cancer Care Alliance

Following are the photos Dr. Urban sent taken during the operation.

Tumor weight: 1,881 grams

Tumor weight: 1,881 grams

Somehow, I thought of operations as messy and bloody – see the tumor?

The pain from the tumor and the 1.5 gallons of black fluid they drained out twice had taken over my life.

The wonderful team of doctors – and their ability to verbalize with patients was superb…

Great doctors and teamwork

Dr. Urban and team – thanks!

I think this was the pain medicine machine that was available to me checked by a helpful nurse.

I had super docs with a great patient connection. The gowns were worn by everyone who came into my room – MRSA.

Molly Blackley Jackson, M.D. – Attending Physician

Medicine Consult Service, Division of General Internal Medicine. UW Medicine

Dr.Salahi will be a wonderful Radiologist if patient rapport matters. He did a super job of making me feel at ease during an intensive pre-patient interview. I am glad for the opportunity to meet him on his last day in Internal Medicine.

Dr. Jackson was a bright spirit this day and every time she visited after the operation. She and the other docs were incredibly verbal, friendly and informative…Just what this patient would order.

Thanks for reading…Sharon.

Part 2 of 4 Next time… the machine that acts like a sump pump was inserted into my belly and more ….

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University of Washington Medical Center Educating Patients/vs.Nature and Causes of Disrespectful Behavior by Physicians

Sharon O'Hara

Greetings!

I’ve recently returned from a couple days at the University of Washington Medical Center Hospital going through tests I’d only read about and where they ultimately stuck a very long needle in my belly and pumped one and a half gallons of blackish fluid from a tumor that took over the space.

Did you know that an x-ray of a belly full of fluid shows up as a blackish nothing? I didn’t.

Next time I have a few things to say about that including showing photos of incredible shots taken of the inside of my belly drained of the excess fluid and showing the tumor still taking up an inordinate amount of space.

The attending doctor, Brian Story Porter, MD, took the time to show me the photos on a computer in my room and then showed them a second time when my daughter was there. More proof that UWMC doctor’s not only teach medical students, they educate their patients too and have all along!

My lung doctor, Christopher Goss, MD – looks at the whole patient – not just their lungs. His patients are more than a lung, including his disease passion, Cystic Fibrosis.

That said, I was shocked yesterday to run across the following Perspective: A Culture of Respect, Part 1 and 2: The Nature and Causes of Disrespectful Behavior by Physicians and thought you’d be interested too.

I am running most of it here. I’m also asking what we, as patients, can do to help change it?

***

“22 May 2012

Perspective: A Culture of Respect, Part 1: The Nature and Causes of Disrespectful Behavior by Physicians

Leape, Lucian L. MD; Shore, Miles F. MD; Dienstag, Jules L. MD; Mayer, Robert J. MD; Edgman-Levitan, Susan PA; Meyer, Gregg S. MD, MSc; Healy, Gerald B. MD

A substantial barrier to progress in patient safety is a dysfunctional culture rooted in widespread disrespect. The authors identify a broad range of disrespectful conduct, suggesting six categories for classifying disrespectful behavior in the health care setting: disruptive behavior; humiliating, demeaning treatment of nurses, residents, and students; passive-aggressive behavior; passive disrespect; dismissive treatment of patients; and systemic disrespect.

At one end of the spectrum, a single disruptive physician can poison the atmosphere of an entire unit. More common are everyday humiliations of nurses and physicians in training, as well as passive resistance to collaboration and change. Even more common are lesser degrees of disrespectful conduct toward patients that are taken for granted and not recognized by health workers as disrespectful.

Disrespect is a threat to patient safety because it inhibits collegiality and cooperation essential to teamwork, cuts off communication, undermines morale, and inhibits compliance with and implementation of new practices. Nurses and students are particularly at risk, but disrespectful treatment is also devastating for patients. Disrespect underlies the tensions and dissatisfactions that diminish joy and fulfillment in work for all health care workers and contributes to turnover of highly qualified staff. Disrespectful behavior is rooted, in part, in characteristics of the individual, such as insecurity or aggressiveness, but it is also learned, tolerated, and reinforced in the hierarchical hospital culture. A major contributor to disrespectful behavior is the stressful health care environment, particularly the presence of “production pressure,” such as the requirement to see a high volume of patients.

http://journals.lww.com/academicmedicine/Abstract/publishahead/Perspective___A_Culture_of_Respect,_Part_1___The.99620.aspx

Perspective: A Culture of Respect, Part 2: Creating a Culture of Respect

Leape, Lucian L. MD; Shore, Miles F. MD; Dienstag, Jules L. MD; Mayer, Robert J. MD; Edgman-Levitan, Susan PA; Meyer, Gregg S. MD, MSc; Healy, Gerald B. MD

Creating a culture of respect is the essential first step in a health care organization’s journey to becoming a safe, high-reliability organization that provides a supportive and nurturing environment and a workplace that enables staff to engage wholeheartedly in their work. A culture of respect requires that the institution develop effective methods for responding to episodes of disrespectful behavior while also initiating the cultural changes needed to prevent such episodes from occurring. Both responding to and preventing disrespect are major challenges for the organization’s leader, who must create the preconditions for change, lead in establishing and enforcing policies, enable frontline worker engagement, and facilitate the creation of a safe learning environment.

When disrespectful behavior occurs, it must be addressed consistently and transparently. Central to an effective response is a code of conduct that establishes unequivocally the expectation that everyone is entitled to be treated with courtesy, honesty, respect, and dignity. The code must be enforced fairly through a clear and explicit process and applied consistently regardless of rank or station.

Creating a culture of respect requires action on many fronts: modeling respectful conduct, educating students, physicians, and nonphysicians on appropriate behavior, conducting performance evaluations to identify those in need of help, providing counseling and training when needed, and supporting frontline changes that increase the sense of fairness, transparency, collaboration, and individual responsibility.

http://journals.lww.com/academicmedicine/Abstract/publishahead/Perspective___A_Culture_of_Respect,_Part_2__.99622.aspx

***

It all started with Chronic Obstructive Pulmonary Disease and a forty-year smoking habit.

Thanks for reading…. Sharon O’Hara

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Lymphedema, Bone on Bone Arthritis, COPD – Prayer, Predisone, Water Workouts Help Heal this Patient

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

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Lymphedema, Kissing Frogs and the Right Match

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

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The University of Washington Rocks!

Sharon O'Hara

The University of Washington is a God send to us. I wrote the following in answer to a letter to the editor and decided to add it here as well.

“The University of Washington ‘elitist’? If ‘elitist’ means dedicated fine professors teaching a subject they they live their work. They teach what they are passionate about to kids eager to learn.

It was the University of Washington’s Medical Center Specialties and Dr. Raghu specifically with then, Super Fellow, Christopher Goss, who gave me an open lung biopsy and found the granulomas and fibrosis in my lungs to prove Sarcoidosis added to emphysema (COPD)

When I had a sudden loss of ability to breathe, the local pulmonologist just handed me a steroid inhaler to add to the others he had prescribed and I was on my way out the door.

Mom’s worry. My mother worried that her daughter all of a sudden lost even more ability to breath and nothing was being done. She strongly pushed for me to get evaluated through the U or the Mayo Clinic. We needed to know.

I went to the U. The following letter is a direct quote from a Thank you card I have written out but forgot to leave there last week after my appointment.

Dr. Raghu –
Dr. Goss –

“Thanks for all you do for us now and in future to make the next generation of lung patients fewer, I hope, living quality lives.
When I first came here I never expected to live out the year much less be here years later and looking at tomorrow.”

The doctors at the U are open minded, they look and think about the entire body, not just lungs. Had I not gone there, I would not be sitting here now.
Their doctors are open minded and actually THINK. They treat their patients like partners in their own care and work together.

The old type doc and his “I Tarzan, You Jane’ mentality is over. Patients have a right to be involved and understand what is going on and what they can do to help themselves.

The University of Washington offers stellar, quality, educated medical people and professors. Who wouldn’t want the best training available?

That said, my own primary care doctor, Dr. Eady, is right here in town. If she ever moved I’d have to move too…same with my pulmonologist at the U. They, and others, are examples of medical care and caring not easily found these days.

I haven’t even touched on the superb Nursing Program at the U…in fact they lead THE COUNTRY…ask US News and World Reports…they are #1.

Is this what you call ‘elitist?

University of Washington – you rock!

Read more: http://www.kitsapsun.com/news/2010/jun/09/my-turn-is-university-of-washington-only-for-the/?comments_id=233309#ixzz0qyxBonTy

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