THE ANATOMY OF A NEW LE ONSET - MY PERSONAL EXPERIENCE

On December 15, 2011 my right arm which has been at risk for 12 years, swelled for the first time.  It had been over 5 months since I had an IV, blood draw or Wrist BP taken in that at risk arm.  I had not flown in 2 years.  I had no cuts, burns, infections or known injury to my arm.  In the 6.5 years since my left breast cancer and LE dx of the left arm, I had gradually worked my way back to normal activity following completion of treatments, which included surgery, chemo, radiation and ongoing hormonal medications.

My pre and post cancer lifestyle has always been an active and physically demanding one.  My husband of 40 years became paraplegic at the age of 5 as a result of Poliomyelitis in 1952.  I am 6ft tall, athletic and accustomed to doing all my own heavy lifting, home maintenance and repairs as needed that might otherwise have been the domain of an able bodied husband.  I am an independent minded person, some might say stubborn, but prefer to find a new and safe way to do whatever needs being done whenever possible.   I do know when to give up and let someone else take over, however, when I feel the risk is too high.

I know the events that I believe precipitated the first swelling episode of my right arm.  My husband has been suffering from Post-Polio syndrome for the last 15 years or longer.  This is a progressive weakening of his upper body muscles after a lifetime of overcompensation for the paralysis of his legs.  My husband has been very independent his whole life, achieving goals most said he could never achieve.  He has never needed assistance for any activities of daily living until recently.  

This past December he was scheduled for a routine colonoscopy and the frequent trips to the bathroom during the prep process took their toll on his strength.  He required assistance in his transfers to and from the bed and the bathroom several times the day prior to the exam.  The day of the exam I drove the car and he rode in the passenger side, which was foreign to him and his usual transfer process.  He managed to transfer into the car with my help.

Following the colonoscopy procedure he was monitored for over 3 hours before we were released to return home.  Still a little groggy and under the effects of pain meds, my husband was wheeled out by the nurse as she accompanied us to the car.   After 40 years of knowing exactly when to assist and how to assist my husband, he prefers not to accept help from well-meaning but less adept strangers when I am available.

What he and I did not account for however, was the extent of his drug induced weakness and the reversal of his usual transfer procedure by entering the passenger side of the car.  In mid transfer, he lost his balance and fell forward.  I fortunately already had a hold of his belt from behind him, however I was now bearing a good portion of his weight (195lbs) as I hung on to him. The nurse ran to the driver’s side of the car, crawled through and helped pull my husband in to safety as I continued to hold him.  I know it was only a matter of seconds but it was an extreme sustained strain on my arms.

Honestly, during the moment of the crisis I was more concerned about injuring my back, LE truly did not even cross my mind.  That night however, I awakened at 3am to find my right hand and forearm visibly swollen for the first time.  I stayed up til 5am, doing self MLD, deep breathing, drinking water and donning my off the shelf sleeve and gauntlet usually reserved for flying.

By morning I was relieved to see that my arm and hand had returned to “normal”.  For a moment I hoped it had just been a bad dream, but the feelings of heaviness with aches and general muscle fatigue would not let me stay in denial for long.  My husband felt terrible and responsible, but I told him the risk has always been there….it could have easily been another incident of  atypical strain on my arms.

One week later, 3 days before Christmas, I went in for my initial LE evaluation and the start of twice a week treatments for 2 months.  My LE was determined to be Stage 0 symptoms alternating with early Stage 1 measureable changes.  I did not go through a typical intensive treatment with daily 24/7 short stretch bandage wrapping.  There was concern from both my therapists that aggressive compression at this stage would be detrimental.  

During the 2 months of therapy I received MLD and trigger point massage with weekly measurements.  I obtained new off the shelf Class 1 Juzo sleeves and stubbed finger gloves, which I wear during the daytime.  I currently do not wear a nighttime garment on the right.  My arm has responded very well with reduction of swelling by a maximum of 1.8cm in the upper arm and 1.4cm in the forearm.  Visibly my right arm looks normal, however, certain activities now bring on the sensory changes that keep reminding me of the potential for progression.  During the initial phase of treatment my very dominant right arm would fatigue and get achy much more quickly with activities such as using the curling iron or scrubbing the kitchen stove.  I now have returned to these activities and experience only occasional sensory changes with prolonged, vigorous motion using the right arm.

Since I already have Stage 2 LE in the left non-dominant arm, and found out quickly that it is very difficult for my left hand to adequately manage self MLD on the right, I spent 2 months getting the proper documentation and medical certification to have my insurance approve the purchase of the newest Flexitouch system with the upgraded controller and redesigned garments.  Now like Binney, I have bilateral arm, vest and truncal garments for use with the Flexitouch.

During the last 4 years, I have been a participant in Jane Armer’s LE study at Columbia, Missouri. I have had both perometry x3 and circumference measurements x3 of my left and right arm at each 6 months visit over those 4 years.  My measurements have shown steady reduction in both the left and right arms over this time period with a slight increase in June 2011 attributed to the summer heat wave and a small weight gain.

It just happened that I saw Jane Armer 12 days after my new onset of LE when I went to Columbia, Mo for my final study appointment in December.  I specifically discussed with Jane my longstanding opinion regarding the issues of IVs, Blood Draws and BPs in a limb at risk for LE.  She well understands the dilemma facing patients with bilateral risk or active LE in both limbs.  Unfortunately, as we know, there are no clinical studies to definitively answer the question of degree of risk for these activities.  She agreed with me that while use of legs and feet are an alternate choice, they bear risks of their own when dealing with underlying health conditions, poorly trained staff and specifically in the case of leg BPs, improper equipment and inaccurate results.  

The fact is that these questions regarding how best to receive ongoing health care monitoring while reducing our risk of LE are not likely to be answered anytime soon by evidence based medicine.  A standard clinical trial format where some patients would receive the procedures suspected of doing harm would not be ethical and thus I doubt we will be seeing any clinical trials testing the theories about risk.  That does not negate the benefit, however, of anecdotal input from individual patients and therapists who see correlations in the field between certain activities and development of LE.  

Better understanding of the physiology and functioning of the lymphatic system,  along with anecdotal experiences of certified therapists and patients are the foundation for the NLN position papers.  There are good reasons to practice these precautions when possible, but I do believe it is important that we understand the limitations of the data.  Certainly, individual health histories, risk tolerance and quality of life issues must come into play when making the decisions of how best to guard against new onset LE.

My reasons for posting today were primarily to relay my personal experience with a new onset of LE.  To also remind everyone that our individual pathologies, surgical and radiation treatment histories, personal genetic makeup and physical lifestyles are all factors that play a role in our own degree of LE risk.

I am an advocate of the NLN position papers.  I encourage everyone to practice risk precautions whenever they can.  I continue to take many precautions and go to great lengths to limit my exposure to invasive procedures.  Unfortunately, sometimes Life just happens.  If we find ourselves facing a progression or new onset, no matter what the cause, we pick ourselves up and continue on to the best of our ability.  

We each must make our own best choices based on the information we have at hand.  We learn from each other and our shared experiences.  We may not always agree, but I believe we do all have each other’s best interests at heart.  That has certainly always been my intent and continues to be. I hope that sharing my experience will be helpful to at least some.