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Living with Lymphedema: How it impacts life and what you can do about it now

11 Dec

Immediate Onset of Symptoms
And like that, about 10 years after my colorectal cancer surgery a new side effect developed. I woke up one morning and my leg was swollen like a balloon. Since it was instantaneous we didn’t even consider it being related to my cancer surgery or radiation at that time. I remember it was summer and I was coming home from a weekend in the mountains. I recall thinking I must have been bitten by a spider, but, when the swelling subsided we thought it had resolved on its own.

M
y 1st Diagnosis
Later that summer we headed down the shore to enjoy time at the beach. It never happened before but something about the sand touching my foot it became immediately irritated and my leg became very red and swollen and achy. We decided to go to the emergency room and they examined me and the first diagnosis I received was cellulites. There is lack of awareness and understanding about secondary lymphedema. I was never educated as a patient that I might experience an immediate onset of symptoms in secondary lymphedema. If I had been informed about the symptoms of the condition I would have been properly diagnosed and treated early on. However, since I wasn’t aware of this side effect it was many years before I started receiving treatment for lymphedema.

Living with Edema
During the early stages my leg was still manageable; when my leg would swell and/or ache I would simply elevate it until the swelling would subside. It never really hindered my mobility in any way during the early years.

I remember my youngest daughter was still in grammar school at that time. I have so many fond memories of that time. I was the President of the home school association and for a number of years I was still very active despite the swelling. It was interesting how it didn’t slow me down. I know God gave me the strength to continue to have the energy and ability run at a time when my daughter was young and needed me. It really warms heart when I think of those times and coming alongside the others in the home school association. Some of the great projects we accomplished as a group were so rewarding. I share these stories to add emphasis on just how active I was during the early onset of lymphedema. As some of you might have realized by now I’m not shy and I don’t mind using a little chutzpah[i] when necessary ([i] chutzpah is a Yiddish word for assertiveness. Every now and again I like to throw in a Yiddish word I learned from my coworkers and customers during my many years as a hair stylist). I was told it was unheard of before my term as President of the home school association, but when I became busy at the school with the number of activities and fundraising events I thought to myself I needed my own office at the school. I chuckle when I think of this memory. So I scouted the school and set-up my H.Q. in one of the vacant offices. I remember the principle being taken aback that I had occupied an office space, but she never did ask me to leave (smile). My team and I had been very involved in fund raising for the school and I know that administration and teachers had truly appreciated our help. We did a variety of events from fashion shows, dinners, tricky trays and we even did a magic show once where the magician released doves off of the stage at the end. Quite a show! These were truly great times and fantastic way to raise money for our non-profit private school. I really believe God gave me those experiences so I would have these skills to later use in my ministry.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 

Years Later I Received the Diagnosis – Lymphedema
By then, as my leg continued to swell and tighten and felt heavier and became achier, I decided to seek another opinion. I finally saw a doctor who took one look at me and said yep you have lymphedema. Honestly I don’t recall what tests he performed at that time but I do remember that I started to get specialized help from that point forward. As a result the new diagnosis, they sent me for specialized physical therapy for lymphedema. This included lymphatic massage, leg wrapping and I was fitted for a compression stocking. My case manager helped me to order my pneumatic compression pump which they also used in therapy so I would have a way to continue with treating my leg on an ongoing basis.   

So What’s Lymphedema Anyway?
I’ll use excerpts from a combination of resources I found to accurately describe what it is and how the lymph system works.

Excerpt from American Physical Therapy Association (APTA), “The lymphatic system collects excess fluid and proteins (lymph) from the body tissues and carries them back to the bloodstream. Lymph is moved slowly through larger and larger lymphatic vessels and passes through small bean-shaped structures called lymph nodes. Edema, or swelling, may occur when there is an increase in the amount of fluid, proteins, and other substances in the body tissues. It’s also known as lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. – From Wikipedia. Statistics indicate, a conservative estimate, that there may be 1-2 million people in the United States with some form of primary lymphedema and two to three million with secondary lymphedema.

What are the Causes of lymphedema? In cancer patients several leading factors of secondary lymphedema is the result of radiation damage to the lymph nodes and/or the lymph system and/or scar tissue.

What are the symptoms lymphedema?

  1. Unexplained swelling
  2. Unexplained aching
  3. Heaviness in the limb (for me when my leg swells it feels like it’s in a cement block)
  4. Tightness and weakness” 

What Can I Do Now If I’m experiencing These Symptoms?
Unfortunately there is no cure for lymphedema, but it can and should be treated to avoid further complications as early as possible. I didn’t know about the treatment options available at the time I was diagnosed so it’s important to me to share this with others.

The Mayo Clinic gives an outline and explanation of methods used to properly diagnose lymphedema condition. “The doctor will discuss your condition, examine the limb for swelling and redness and measure the limb. Doctors with special expertise in diagnosis and treating lymphedema may perform some of the following tests:

  • Computerized tomography (CT) scans. A CT scan produces a series of X-rays to create a detailed image of your body. Your doctor may use this test to see sections of the lymphatic system that may be blocked (obstructed).
  • Echocardiogram. An echocardiogram uses sound waves (ultrasound) to produce detailed images of your heart and blood vessels. An echocardiogram helps determine the size of your heart, how your heart valves are working and how well your heart is pumping. Your doctor uses the echocardiogram to detect heart or blood vessel problems, including obstructions in blood vessels.
  • Genetic tests. Genetic tests may be performed to test for congenital lymphedema (lymphedema present at birth).
  • Lymphoscintigraphy. In this test, your doctor injects a radionuclide dye under your skin to look at the flow of lymphatic fluid in your limbs. Your doctor scans you with a machine at several time intervals, which shows the dye traveling through your lymphatic system and lymph nodes. This test reveals blockages in your lymphatic system.
  • Magnetic resonance imaging (MRI). An MRI scan uses magnetic fields and radio waves to create detailed images of your body’s tissues. Your doctor may infuse a contrast agent into a vein in your lymphatic system to see your lymphatic system more clearly on the MRI.”

Banner Health lists the following Treatment Options:

  • “Manual lymph drainage massage to release protein molecules from the tissue and move them along with the excess fluid into the lymphatic capillaries and out of the limb with a noninvasive, technical, therapy technique.
  • Compression bandaging of the limb to provide a firm external non-elastic support to tissue, which acts as a counter force to muscle contraction and, thus, promote lymphatic pumping during even the slightest muscle contraction.
  • Comprehensive fitness program, including flexibility, strengthening and aerobic activities to enhance the lymph drainage.
  • Lymphedema education: Review key points for good health while living with lymphedema.
  • Pneumatic Compression Pump A pneumatic compression device such as the lymphedema pump consists of a garment or sleeve that is wrapped around the affected limb, and a pneumatic pump that inflates the sleeve with compressed air. The sleeve is inflated and deflated intermittently at varying intervals and pressures.”

I’m always exploring new ways for managing my Lymphedema treatment. More recently I’ve started using a brace on my ankle to provide better support. Secondary lymphedema can weaken the muscle tone and strength over time and a little support can be helpful. I’m also exploring the C-Boot Elastic.  This is the first mobile intermittent pneumatic compression (IPC). Over the years my mobility has decreased especially in the summer months due to the humidity the swelling increases and the leg becomes heavier and achy. Lymphedema weakens the muscles making it difficult for me to support my body weight especially when the swelling increases. I brought the information to my primary care physician; however, since it is not her area of expertise she wasn’t able to measure me or write a script for the boot. I’ve yet to find a doctor who specializes in treating lymphedema to request help with measurement and ordering the c-boot. The cost is in the upwards of $2K so this is still a work in progress for me.

Another great resource to plug into is The National Lymphedema Network (NLN) http://www.lymphnet.org/, send an e-mail: nln@lymphnet.org  or call their Hotline: 1-800-541-3259. The site offers a variety of resources for both the patient and doctor. You can search for treatment or support groups, find a pen pal, and learn about clinical trials and much more.

My friends please write to me if you are feeling or experiencing something similar.  I’d love to hear from you. I didn’t have anyone who could relate to me at the time and I don’t want that for you.  Please send me an email or reach out to me via Facebook or Twitter.

With love and God’s Blessings,

Dee Dee

Email Me: littledeet@yahoo.com

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

Disclaimer Chat With Dee Dee

References:

http://www.oncologypt.org/mbrs/factsheets/LymphedemaFactSheetFinal.pdf

http://en.wikipedia.org/wiki/Lymphedema

http://www.lymphedemapeople.com/thesite/Arm_and_Leg_Swelling_After_Cancer.htm

http://www.mayoclinic.org/lymphedema/diagnosis.html

http://www.bannerhealth.com/Locations/Arizona/Banner+Desert+Medical+Center/Programs+and+Services/Rehabilitation/Lymphedema+Treatment.htm


[i] chutzpah a Yiddish word for assertiveness

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2 responses to “Living with Lymphedema: How it impacts life and what you can do about it now

  1. RETHA M. DAVIS

    December 14, 2011 at 2:34 am

    MY NAME IS RETHA DAVIS. I AM A VETERAN AND WAS INJURED FROM CHRONIC ANKLE SPRAIN AND SWELLING FROM EXCESSIVE ROAD MARCHES AND RUNNING IN BOOTS, DURING MY TIME IN THE ARMY. I WAS DIAGNOSED WITH LYMPHEDEMA 1 YEAR AGO AND I HAVE BEEN DEALING WITH THE PAIN AND SWELLING EVERY SINCE!

    I AM AT MY WIT’S END AT THIS VERY MOMENT!! MY DOCTORS TOLD ME TO WEAR A SOCK COMMPRESSOR, BANDAGES AND SLEEP WITH MY LEG ELEVATED AT NIGHT. THE ONLY BASIC RELIEF IS WHEN I SLEEP WITH MY LEG ELEVATION.I HAVE BEEN RIDING MY BIKE 6 DAYS A WEEK, 4 MILES WITHIN 30 MINUTES. THE OTHER RECCOMMENDATIONS SEEM TO AGGRAVATE MY LEG MORE. LONG PERIODS OF STANDING OR SITTING CAUSES SWELLING. I NEED HELP PLEASE. I ALSO NEED SOME INFORMATION ABOUT HOW I CAN CLASSIFY THIS AS A DISABLILITY.

    THANK YOU IN ADVANCE FOR YOUR HELP!!

    SINCERELY,

    RETHA M. DAVIS

     
    • littledeet

      December 14, 2011 at 12:59 pm

      First let me say thank you for serving our country; because of you and many like you we have freedom and we’re are so grateful!!
      Now let me say I’m so sorry to hear about your injury. I’m sure there are a number things you can do to help your lymphedema. I am not surprised to hear that elevation is the thing that helps the most. The same is true with me and most. I too sleep with my leg elevated and when I sit even in public I try and elevate my foot.
      My suggestion is first never give up. Even though my lymphedema is irreversible since its a side effect from radiation burn I continue to seek new treatments and ways to manage my swelling. I’m a fighter.
      It sounds to me like you’ve never had a specialist treat and wrap your leg. This would be a good start. The Lymphnotes.com site lists a number of clinics in NC I’m not sure how close they are to your home but definitely worth calling and making a trip if necessary. Here is the link: http://www.lymphnotes.com/treatment.php
      Since you are active you might consider bringing a print-out of paperwork on the Mobility1 C-Boot elastic (http://www.c-boot.com/index.php?langId=11) this is the first intermittent pneumatic compression (IPC) line of products powered automatically by energy generated from the patient’s body. There is a manual pump that goes into your shoe and every time you walk it works and pushes the lymph fluids back up. I note proper codes for insurance to bill would be:
      E0673 Segmental gradient pressure pneumatic appliance, half leg (Items # MOB001M, MOB001L, MOB001XL) when used with HCPCS code E0650.
      E0650 Pneumatic compressor, non-segmental home model (Item # MOB001COMP)
      Article I’ve read state this will allow applicable customers to bill for the components within the MOBILITY1 system using these codes, including the Medicare’s Part B program, private insurance plans and the various Medicaid programs.
      I am trying to get this pump for myself. My insurance has already purchased me the standard home compression machine so I’m having difficulty getting approval. Either way wrapping, lymph massage therapy, elevating, compression stocking, definitely a compression pump whether the standard or mobile wearable version are all a must. Also, for me water makes my leg feel like a thousand pounds so if you swim you might consider a protector on your leg http://www.medishieldllc.com/dev3/waterproof_cast_protector_swimming_cast_protector_product_comparisons__57_59__comparative-study.html
      Thank you for writing to me and my responses are from my personal experiences so I hope they are helpful to you too. Please let me encourage you to get seen by a lymphedema therapist/specialist and get started on a more aggressive treatment. Stay strong and be encouraged we are more than conquerors through him who loved (Romans 8:37).

      God’s blessings,
      Dee Dee
      PS: please write again and keep me posted once you’ve started treatment.

       

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