What is Lymphedema?

According to the Mayo Clinic Lymphedema is blockage in the Lymphatic system, which is part of the immune system.  Lymph fluid is prevented from draining causing a buildup which then leads to swelling in extremities.  Arms and or legs are affected, it can be one arm, one leg or both.

So why am I mentioning this???  Well, here's what is going on with me...

Last July 2019 I noticed my left leg, foot and ankle was swollen.  Usually during the summer I will experience swelling and it will go away as the weather cools.  That was not the case last summer.  I mentioned it to the doctor I had at the time.  He did not seem too concerned about it.  A couple of months later that doctor left Renown and I had to find another primary care provider.  I was referred to a nurse practitioner who referred me to have an ultrasound done on the left leg and to an orthopedic surgeon.  The ultrasound showed that I had a benign cyst back of my left leg, nothing to be concerned about.  The orthopedic surgeon had no clue as to what was wrong.  He wanted to get approval for an expensive cortisone shot to alleviate the swelling.  He also suggested compression socks.  I declined the cortisone shot, however did purchase compression socks.

Then for Thanksgiving we traveled to Colorado to join son Erik and his family.  I wore a compression sock on my left leg and it seemed to help.  A few weeks after getting back from our Colorado trip, I noticed swelling in my right foot, ankle and leg, and with it intense pain.  There was a tightness in my left pain, however not much pain.  The pain in my right leg was unbearable the majority of the time.  The only time there wasn't pain was while I was sleeping and elevating my legs.  I didn't contact my PC provider and should have.

At the end of 2019, my health insurance provider terminated all clients who lived in rural counties.  We live in Lyon County which is a rural county so I lost my coverage.  That meant I had to find other insurance coverage.  I could have used just Medicare but I didn't really want to do that.  In February 2020 I enrolled with Prominence Health System which is a Medicare Advantage Plan.  Senior Care Plus that I had was also a Medicare Advantage Plan as was the Kaiser Plan I had when we lived in Sacramento.  Enrolling with Prominence meant that I had to start from my beginning with my health care.  The PC provider I was referred to then referred me to a Cardiologist and a Nephrology (Kidney) Specialist.  These doctors addressed the issue of the leg edema.  After another Ultrasound prescribed by the Cardiologist, it was determined that the edema was not heart related, there were no blood clots.   He referred me to a Vascular Surgeon who also ordered an Ultrasound.  He determined that it was not vascular, no problems with my veins and circulation.  The Kidney doctor also determined that the edema was not kidney related although I do have kidney damage, due in part to having diabetes.  That's a whole different story.

One of the things that the Vascular Surgeon mentioned was unclassified Lymphedema.  The PC doctor and Kidney doctor agreed with that determination.  It is a relief to know that was is going on has a name and it is a health concern.

Unfortunately there is no cure for Lymphedema.  There are, however, exercises, massages, treatments that can be done to alleviate some of the pain and encourage the draining of the built up fluid.  I saw my PC doctor on Thursday...she contacted Home Health through Prominence, they are to contact me this next week and provide me with compression wraps to use on my legs.  Also she will research a place that will perform massages especially related to lymphedema.  I found a therapist on You Tube that had suggestions for exercises to do, they are very simple and I think I can do them.  Actually I've found all kinds of information on You Tube which has been helpful.

My pain level can be really intense and it can be to where I hardly feel it.  My emotional levels are all over the place also.  Sometimes I have a hard time taking care of my basic needs.  I will go back to bed to rest sometimes after I've had my breakfast.  My energy level can be very low.  If I have an appointment or need to go somewhere, it has to be in the morning hours.  If I wait until the afternoon to do anything, I might as well forget it.  The swelling gets worse as the day progresses.  Driving into Carson City and then back home wears me out.  I am completely exhausted by the time I get home.  Elevating my legs helps somewhat.  No road trips for me.  I've been wanting to go to Sacramento, that's not going to happen.  I have driven to Reno although not since the lockdown.  I was able to do it although was wiped out when I got back to Dayton.

I've read some about essential oils, in particular Ginger Oil is suppose to help with swelling.  I did get some from Amazon, I'm not sure it helps much.  Denise gave me the link for the company she uses, I haven't looked at their website very extensively yet.

I try to put on a "happy" face when I'm away from home, although I don't always feel happy.  Sometimes it is hard to be upbeat when you are hurting so bad.  I'm asked "how are you doing" and my answer lately is "I'm hanging in there".  I'm glad that we can now go to church, it is something to look forward to each week.