Lymphedema Diagnosis and Treatment Saving Bill (H.R. 4662)

March 5th, 2010

Yes, there may be some light at the end of the “lymphedilema” tunnel, but we need you to get involved.  How many years have we been trying to convince Medicare that treatment for lymphedema is imperative if we are going to avoid costly complications (not to mention quality of life issues)? Thanks to patient advocates like Bob Weiss who refused to give up on this endeavor, a bill has been introduced to the House of Representatives.  If we are going make this happen we need to ban together and let our legislators know we need their help getting this bill passed.  If you have been struggling with lymphedema as well as the inability to get insurance reimbursement for treatment and/or supplies, you understand how important this is.

You may be interested to know this bill was introduced to the House of Representatives February 23, 2010 by Congressman Larry Kissell of North Carolina.  Last July a similar bill  passed in the  North Carolina legislature (H.R. 535).   Lets hope we can get a similar bill passed for the State of Washington.  Getting one passed at the national level would certainly make it easier.

Don’t Shoot the Messenger

February 22nd, 2010

As a cancer survivor who turned down chemotherapy 21 years ago, I’m always interested to hear about others who advocate natural medicine.  Suzanne Somers is at the top of my list and I was thrilled to hear she was asked to be a guest on the O’Reilly Factor.  Of course, she too, is unhappy about the McCain Supplement Safety Bill, and probably equally unhappy about Mr. O’Reilly’s response. Mr. O’Reilly feels the government should at least monitor what is in the supplements and require warning labels.  That makes sense, but do we really believe government control would stop there?

So here is what bothers me the most about Mr. O’Reilly’s argument and it is so typical of why we are all falling prey to degenerative diseases.  Apparently, rather than succumb to a pharmaceutical drug to lower his cholesterol, he tried another “quick fix” which he considered to be a natural alternative – red yeast.  After a few months of taking the red yeast, his doctor discovered his liver enzymes were spiking and Mr. O’Reilly was angry that he had not been warned there would be any side effects.  So what is wrong with this picture?  Did his doctor make an exhaustive effort to find out why Mr. O’Reilly had high cholesterol in the first place? Was his high cholesterol an indicator of inflammation?  If there was damage or weakening of the arterial walls, cholesterol would do what it could to repair the damage.  Why would we think a pill of any kind could fix the problem . . in other words, why would we just “shoot the messenger?” It is the reason tests for inflammation indicators, e.g. homosysteine and c-reactive protein have gained favor as indicators for potential heart disease.  Prior to taking any kind of cholesterol suppressant we all need to fully understand why we have cholesterol, how the pills work and what happens when levels are too low?  (It is the base of our sex hormones, if that tells you anything!)

My heart goes out to those well-meaning patrons of the supplement stores who wander in and are at the mercy of the clerk behind the counter.  Without a comprehensive education in nutrition and a sound understanding of our own bodies, how would be know what to ask for?  Balancing hormone levels, tracking adrenal and thyroid function, sugar regulation and colon health are all essential to our making intelligent choices. Finding a doctor or nutritionist who can guide us in this area of natural medicine, however, is a challenge all its own.  So you can get this into better perspective, may I suggest you read Jack Challem’s book,  “The Inflammation Syndrome.” (I noticed Amazon is offering a special on it today.)

If you have read any of Ms. Somers books or just taken a good look at her, it’s obvious this lady has done her homework.  To me she is one of the real heroes. Until we start educating ourselves on the long-range side effects of many of the pharmaceutical drugs, insist on accurate diagnosis rather than symptom management, and acknowledge the benefits of natural supplementation in supporting the body during times of stress, we will likely continue to be the unhealthiest industrialized nation in the world.

Dietary Supplement Safety Act

February 18th, 2010

One of the discussions at last Saturday’s NWLC Self-Care class centered around Senator McCain’s Dietary Supplement Safety Act (DSSA) of 2010, which would undermine or possibly eliminate consumer access to valuable dietary supplements.  As a cancer survivor and nutritionist myself, I was outraged by this bill.  A healthy diet, combined with a wide range of natural supplements, is the pathway to optimal health.  At a time when our legislators are trying to minimize health care costs, they should be looking at those people who are buying supplements.  These are the people who are taking responsibility for their own health and doing whatever they can to minimize their chances of developing a costly degenerative disease or a re-occurrence of their cancer.

The counter argument to my concerns was the fact there are a lot of supplements on the market that are poor quality.  Some are even toxic to the human body; and who is setting the standards?  I have to agree with that, which is part of my concern about low-cost synthetic vitamins that are often doing more harm than good.  Hopefully, patients can find doctors who have a sound understanding of nutrition and can guide them on the appropriateness of supplements in their regimen.  These doctors are rare, however, as nutrition is not taught in medical schools . . . . . kind of like lymphedema!   In the meantime lets all do what we can to educate ourselves and each other.  I encourage you to go to http://www.citizens.org/ and share your feelings about this bill with your legislators.

Treadmill and compression garments

February 11th, 2010

I received an email from someone who knows me very well saying, “Do you wear your compression sleeve when you are exercising on your treadmill?”  They knew the answer was “no” and I think it is important that I explain my answer. Before I really understood my limitations, and before I knew what I could get away with, you bet, I wore garments — around the clock.  A combination of daily self-massage , loosing 30 lbs, and having a benign lipoma surgically removed from my affected forearm,  have brought me to the point where I need not worry about my lymphedema.  I don’t even wear my sleeve when I’m flying.  (Not to say I don’t keep it in my purse just in case!)  So . . .to answer the question. . . .No, I don’t wear a compression garment when I’m exercising on the treadmill, but my arms are either at waist level, or alternately up in the air doing stretch exercises.  If I had lower extremity lymphedema, however, I’m sure I would be wearing a compression stocking.

It’s all about what you can get away with and your measurements are your indicator. If your wrist is 16 centimeters before you exercise and 18 centimeters after you exercise, it is time to reconsider how you exercise and what you wear when you do.   My Australian instructors, the Drs. Casley-Smith, said that with daily manual-lymph drainage (self-massage) it takes approximately a year for the body to remodel, or adapt to the new pathways.  From my own experience as a therapist and as a lymphedema patient myself, I believe this is true.  Many, including my doctor,  thought I was crazy to have elective surgery on my affected arm, but I had done my homework and was confident it would not be a problem.  If I did have some post-surgical swelling, I knew how to fix it, which is my hope for everyone struggling with lymphedema. The removal of the lipoma has made it easier for me to manage my lymphedema and I no longer have to be self-consious about the large lump in my arm!  (We video taped the surgery and for anyone who is interested, we can add it to our self-care streaming videos.) I also wanted to prove there is light at the end of the tunnel, and if we understand lymphedema well enough and master the self-massage techniques we can get away with a lot!

Compression garments and exercise

February 8th, 2010

In my last blog I talked about my concerns regarding the rebounder article.  I would be remiss if I didn’t mention that whatever exercise program you choose, if you have lymphedema, you must wear a compression garment during exercise.  Let me explain, but first, remember that one of the main components of resorption of fluids back into the circulatory and the lymphatic systems is TISSUE PRESSURE.   Have you noticed how as we age we lose skin tone  and are more likely to develop varicosities in our legs, particularly if we are overweight or spend a lot of time on our feet?  As we lose  elasticity in our skin, we lose tissue pressure and it becomes increasingly difficult to maintain the integrity of the valves in our lymph vessels and our veins.  Support stockings, or compression garments, are an effective way to restore this deminishing  pressure.  Once a valve fails, it increases the load on the valve beneath it.  If that one fails, there is an even greater load on the valve beneath it.  . . and so on down the line.

As you exercise, you are increasing filtration or the amount of blood rushing down the arteries and being filtered into the tissue.  Since a portion of that filtrate adds to the lymphatic load, and if your lymphatic transport system has already been comprised for any reason, you can surely understand why a supportive garment is an essential part of successful lymphedema management.

Consider another benefit of wearing compression garments during exercise.  As your muscles contract, they push against the garment (or bandage). As long as the garment has a gradient compression, you will be helping the body in its effort to push tissue fluids upstream and back into the circulatory system and  into the  lymphatic transport system.

For those of you I confused regarding the LeBed Method exercise program:  For years it was called the LeBed Method and their DVD was called Focus on Healing.  Sherry LeBed Davis recently changed the name of her program to Healthy Steps.   I am such a strong believer in the benefits of participating in her program, I want to make sure you can  get to her website: www.lebedmethod.com or www.gohealthysteps.net.  If you go to the Northwest Lymphedema Center website:  www.nwlymphedemacenter.org and click on the self-care streaming videos, you can see two of Sherry’s class presentations.

Stay tuned, as I received a great comment regarding acid reflux and we MUST talk about that at some length.  I know this may sound crazy, but poor digestion can have a profound effect on your ability to effectively manage your lymphedema!

Articles on the Lymph System

January 25th, 2010

Whenever I see an article on the Lymph System, I am compelled to read it.  Perhaps it is a conditioned reflex and it always  takes me back to the days when I was the historian for the North American Vodder Association of Lymphatic Therapy (NAVALT).  It was 1992 and information on lymphedema was nearly non-existant.  If any of our members found any information on this condition, it was sent to me for our archives.  Copies were made and distributed throughout our membership with the hope that we, as lymphedema therapists, could help our patients, their caregivers, doctors and insurance providers better understand the condition and substantiate the need for treatment.

I was excited to see the article, “Boosting the Lymph System” in the current issue of the Well Being Journal.  It is a good article, particularly the section titled, “Importance of the Lymph System.”  However . . . I have one major concern which I would like to share with you.  The focus of the article is on the importance of exercise, specifically a therapeutic rebounder.  There is no question movement of any kind is essential to moving lymph fluid and exercise is an integral part of lymphatic decongestive therapy. When I was training with the Casley-Smiths, Judith said, “You have to think of the lymph system as thousands of tiny pumps.  When you are sleeping, nothing happens until you roll over!”  Spending two three-week sessions at Optimum Health Institute was my alternative to chemotherapy and there were rebounders all over their campus.  For a normal body, whose limbs are not over-burdened by lymphedema, a rebounder makes a lot of sense; however, if you look at the diagrams of the valves in the deep lymphatic collectors, you will better understand my concern about adding any additional pressure on these valves, particularly on lower extremity patients.  If you have upper extremity lymphedema, just hold you arms up over your head so the G force is working with the valves not against them.  Quite frankly, I would rather see lower extremity patients doing the Pilates mat work.  They will be on their back with their legs in the air with gravity pulling fluid through the valves, not against them.

Many of you have commented on the necessity of exercise for successful lymphedema management, and I know, it can be challenging, as well as boring.  Let me make two suggestions:  If you are using a treadmill, tread lightly, but do it to music.  My choice is Manhatten Transfer, which can be a lot of fun as there are so many different upbeat rhythms.  I would also recommend any of you who don’t know about the Lebed Method Healthy Steps program, check out their website, even order their exercise CD.  They too, use Manhatten Transfer music and it certainly isn’t boring.  You can even incorporate some of their arm movements into your treadmill routine . . . . just one arm at a time, however.  I tried both arms and it didn’t work out well at all.   My treadmill is in my (unheated) garage and I flew off the back end and ended up on top of the garbage can!  Oh, the things we do in our efforts to stay healthy!

Self-Care Class Feedback

January 4th, 2010

We love to hear from former students of our Patient Self-Care Class, and I felt compelled to share this one with you:

“I love my JoViPak garment — to think I have been bandaging every night for almost a year!  I see results each morning – lots better than the bandaging has done.  Plus it has been nice to have a restful night of sleep.  I loved the class.  It was like a new world opening up to me with lots of hope in reducing my leg not just maintaining.  There was so much good information at the class and I liked the open forum.  I can’t express enough what the class did for me.  So, many thanks and lots of appreciation sent your way.”   Phyllis from Moses Lake, WA.   12/09/09.

Phyllis is happy to talk to other patients about her experience.  Just email me:  joann@jovipak.com and I’ll send you her phone number.

The Basics of Human Health

December 9th, 2009

  I am always intrigued by how many people attending our classes are interested in learning more about Nutrition and the connection between sound nutrition and successful lymphedema management.  The book I was referring to in one my last blogs, “Going Back To The Basics Of Human Health” by Mary Frost was the focus of our November 14th self-care class discussion.  My thanks to Dr. Koss for recommending this book.  It is an easy 82-page read and presents, in a very precise and easy to understand way, how nutritional deficiencies manifest into degenerative diseases; e.g. arthritis, diabetes, cardiovascular disease, alzheimers, cancer, autoimmune disorders, etc.

An interesting article in the Huffington Post a couple weeks ago, stated we can’t fix our health care system until we fix our food.  Good point.  Now that we are facing major uncertainties about the future of our health care system, doesn’t it seem like a good time to “go back to the basics” and start taking care of our own health?  Shouldn’t we be asking more questions?  Americans spend more money on health care than anyone else in the world, so why, of all the industrialized nations are we the unhealthiest?  Why aren’t we investigating farming methods and ways to replenish the soil?  (If you want to get that into perspective, read Michael Pollans’s “Omnivore’s Dilemma.” ) Do you remember Popeye?! Today he would have to eat 65 cups of spinach to get the same amount of iron he got in one cup of spinach in 1945!    These comparisons help us understand the ongoing depletion of nutrients in our farmland and alert us to the necessity of supplementing today’s diet with whole natural vitamins — not coal tar based synthetic vitamins. Perhaps we should stop pointing fingers at the morbidly obese and realize most of these people are malnourished. Their bodies are screaming for missing nutrients — not sugar or refined flour, not transfats or hydrogenated oils, and certainly not processed or fast foods.

I truly believe if I had known 40 years ago, what I now know about nutrition and the importance of good digestion, I never would have had cancer nor allowed myself to get overweight, but the books weren’t in my library.  Well they are now! And I have found a tremendous amount of self-help information on the internet.

I appreciated “Going Back To The Basics Of Human Health”  enough to read it twice, and checked with Amazon to make sure they had more in stock.  Yes, they do – even used copies for $1.60!  If you are trying to understand the complexities of sound nutrition, I believe you will find this book very helpful.  If you would like to meet Dr. Koss, Lynn’s and my “Health Coach,” just go to the Northwest Lymphedema Center website, www.nwlymphedemacenter.org, and click on self-care streaming videos, “Other Lymphedema Considerations”, as he and Allison, his medical assistant, have been guest speakers at the NWLC Patient Self-Care Class. 

I was pleased to see “Going Back to the Basics of Human Health” at my chiroprators office this week — further assurance I was in good hands.

NOVEMBER 14TH PATIENT SELF-CARE CLASS

November 20th, 2009

NOVEMBER 14th PATIENT SELF-CARE CLASS

There were 14 attendees at last Saturday’s Lymphedema Patient Self-Care Class, and one videographer! Yes, we will be adding the highlights from this class to the Northwest Lymphedema Center website. And what a class it was! We tried a new format as a way of getting everyone involved in the discussions and it worked beautifully. Several of the patient attendees made extremely valuable contributions which we want to share with you. We had four therapists here to answer patient questions: Julie Venn, NWLC Board member is a cancer survivor, lymphedema patient, lymphedema therapist and garment fitter; Lene Tonnisen, visiting lymphedema therapist from Canada, was here for the JoViPak Fitter Certification class the day before and graciously stayed over to help answer patient questions; and my long-time friend, confidant and partner in facilitating these classes, Lynn Fass, RN, president of the Northwest Lymphedema Center, who has successfully managed her own primary lymphedema for 35 years. (Lynn and I have been teaching these classes since 1993.) To view previous classes, go to the Northwest Lymphedema Center website: www.nwlymphedemacenter.org and click “On-Line Self-Care Videos.”

Lene spent the night at the Hawthorne Suites which is within walking distance of our classroom; however, they do have a shuttle which will take you anywhere within a 5-mile radius as well as pick you up at the airport. For our next two classes, Hawthorne Suites is offering our attendees a special rate of $89 per night for a studio apartment and $109 for a two-bedroom townhouse unit with two baths. Every unit has a fireplace and fully equipped kitchen. A hot complimentary breakfast is provided each morning in the Hawthorne Suites dining area. Quite often therapists who come to the Fitter Certification Class stay over for the Patient Self-Care Class which proves to be a valuable learning experience and a lot of fun for everyone involved. We hope you will be able to join us at one of our future classes. The next Fitter Class is February 12th, 9:00 to 4:00 and the next Patient Self-Care Class is Saturday, February 13th, 10:00 to 4:00. For reservations or more information call the following numbers:

Patient Self-Care Class, Lynn Fass at the Northwest Lymphedema Center (206) 575-7775
JoViPak® Fitter Certification Class, Karen at JoViPak 1-866-888-5684, Ext. 83
Overnight Accommodations, Joann Ramsby, Sales Director, Hawthorne Suites 1-800-527-1133

LYMPHEDEMA SECONDARY TO OBESITY

October 21st, 2009

So where do I start?   My desk is covered with photos of patients who have lower extremity lymphedema secondary to obesity. These patients and their therapists are obviously frustrated for they feel they have come to the end of the road. Unfortunately, all too often that is true.  As I’ve said before, a JoViPak® garment may not be their best answer. What is?

As a European-trained lymphedema therapist, I never thought I would say this -  the best answer may be a pneumatic pump!  I was thrilled to learn that Lympha Press® has expanders for their pumps and they are currently focused on finding solutions for the morbidly obese.  So think about it:  these patients are past the point of being able to exercise and most of them still have their inguinal lymph nodes.  So why not get them on a pump?  How else are we going to get the fluid moving?   With Lympha Press’ new bariatric pant design that also drains the truncal area, the patient’s lymphedema should come down fairly quickly. At that point I’ll be happy to make a JoViPak garment for the patient – particularly if they have fibrosis. We may even be able to provide JoViPak padding for use under the pump if it helps speed the process and/or makes the patient more comfortable.

You have to know by now that I can’t ignore the other major piece to this obesity puzzle and that is nutrition.  Stay tuned, as I’ve just finished reading a marvelous book that I’m sure will be helpful for all of us.