My Life with Lymphedema
When I was asked to do an article about my life with lymphedema, I thought that would be easy. I have found the opposite to be true. It’s hard to put into words a story of 52 years of living with a condition like this.
My life is an example of what can happen when lymphedema is incorrectly treated, or not treated at all. But it is also, I hope, an example of what you can do and what a full and exciting life you can have, even with lymphedema.
I was born in 1952 and almost from birth I experienced leg swelling. Like most people, I was taken from hospital to hospital as the doctors tried to figure out and “diagnose” what was wrong with me.
In 1959, I went to live with an aunt and uncle in a small Florida town. It was actually the family doctor that through examination and family history made the diagnosis of Milroy’s Disease. We had no idea of what to do or really what to expect.
Despite the leg swelling, I was an “all action” type of kid. I loved sports. I broke my right arm wrestling and my left arm playing soccer. I fell out of or slid down more trees, loved camping, fishing, blazing trails through the swamps, jumping off buildings; I pretty much did everything you shouldn’t be doing.
My biggest challenge would turn out to be the horrendous bouts of cellulitis that I would continually experience. The first attack hit in 1960 and the following week or so is simply a blur. The worse one struck in 1962 when they had to cut out a large greenish black blob from where my left inguinal lymph node should have been. That was followed within a few months by another terrible bout that for the first time really changed my life.
At that point, I was taken out of “P.E.” in school and there would be no more football, no more soccer, not even a bicycle. My aunt, was really so wise though. I soon found myself with microscopes, telescopes, chemistry sets, books, and a piano. These helped me a great deal with the sense of loss of my former activities. I also joined the band, choir, student council, and school clubs and became very active in other less “strenuous” activities.
In 1967, I moved to Oregon, where I spent what seems like a third of my remaining high school years in the University of Oregon Medical School Hospital. At least there were doctors there who were determined somehow to help.
Treatment included that wonderful old fashioned compression machine (pump), which didn’t work despite my spending months on it. In 1969, I was even in a study program, under a Doctor Stanley Jacobs, using something called DMSO to see if the would increase lymph flow by making the skin cells more permeable. During that year, I did have a successful surgery that helped correct one of the complications that I had experienced.
Nothing we tried worked, and from 1971 through 1973, I had three nine-hour Thompson procedures and numerous skin grafts. These were radical debulking surgeries in which a flap of skin was folded into the leg muscles in hope that fluid would be drawn into the deeper lymphatics. Needless to say, these didn’t work either and the surgeries have been now mostly reserved for the most dire and horrendous cases of lymphedema.
The next couple decades were actually fairly normal, despite the increasingly worse lymphedema and the always present cellulitis. I went to Switzerland to study for a few months. I was married, had a couple children, bought and remodeled a house and put in a 3500 square foot raised bed garden.
I was also involved extensively in the community and in political activities for the party I belonged to. In college, I served as student body president for one term at the community college I attended and served two terms as president of Portland State University where I eventually graduated.
In 1989, I moved to the Atlanta, Georgia, area. I immediately came under the care of an infectious disease doctor at the Emory Clinic, but even he still had not heard of any successful treatment for lymphedema.
It was in 1995, that my life really changed dramatically. I had a perfect red round spot growing on the calf of my left leg for many months. Since it presented no problem, I assumed it was some funky skin discoloration associated with lymphedema. When it was subsequently biopsied, it turned out to be Mixed B Cell lymphoma. In 1997, I was also diagnosed with idiopathic chronic leukopenia. For some reason yet to be figured out, my immune system had decreased by some 75-80%. All this was followed in 2000, by an ultrasound guided small needle biopsy of the right linguinal node that came back positive for another lymphoma called lymphoplasmacytic lymphoma.
The only treatment for all this was eight weeks of daily radiation on the original lymphoma spot in 1995.
During this time I also found out about decongestive therapy for the first time. But with the lymphatic cancers and infections, I have never been able to have it.
The year 2000 was also significant for another reason. For forty-seven years, I had never met or even talked to another person with lymphedema. All this changed when I attended a conference in Atlanta sponsored by the Lighthouse Lymphedema Network.
It was a really strange experience. First, there was excitement because at last, there was a whole room full of people who had the same condition I had. But, it was also kind of anticlimactic because of the difference in the lifestyle that I had led, versus the ones led by my new-found friends.
Things started to get progressively worse starting in 2002. The last couple of years have really been a brutal time with constant cellulitis, many trips to the emergency room, hospitalizations and additional complications, like pleural effusions, and pain with fatigue at levels I never knew could exist. Last year lymphedema started in my left arm as well and the minor amount in my right arm always seems threatening to get worse. I have also spent many months on IV antibiotics to help control the cellulitis. Because of the new swelling in the arms, last spring I had a chest port put in, so no more arm IV’s or pic lines. The left leg is also now so hard, that ultrasounds just bounce right back without any ability to pick up blood flow or even a pulse.
In 2003, I joined a number of online lymphedema support groups and now spend time posting on some thirty different sites. In the fall, I started working on a website called “Lymphedema People” and officially “opened” it up in December 2003.
The growth of the website has stunned me; as of this date we have had close to 79,000 visitors from 124 countries who have read more than 553,000 pages of information on lymphedema. During the past six months, we took the next step and began sponsoring our own support groups. We now have six through Yahoo groups. These include groups for lipedema, lymphangiectasia, a men’s lymphedema group, a children’s group, an advocacy group and one on lymphatic disorders. We also have information groups and sites on AOL and Google.
Last fall, I also started working with a legislative group from the Lighthouse Lymphedema Network. This fantastic group is working on treatment legislation for the state of Georgia. I also joined their board this January and am helping to create a website for the support group.
I am also still quite fortunate as I am able to continue working full time, enjoying my flower garden and doing many other activities.
In conclusion, I would be a liar if I said lymphedema has been easy. It hasn’t, and at times it has been brutal with its complications and what it has done to my health. But if I could say only one thing to my fellow lymphedema patients, it would be to grab life, live it to the fullest and enjoy it! I have been able to do so many things that even “normal” people haven’t done and have had a blast doing it. Never give up, never quit, don’t accept a life hidden away dwelling only on with what you can’t do. Go for the gold!!!!!!!
First published Jan 2005