Readers Comments

Here are comments from our readers. Please email us with your comments.

Hi Have found this site today and am about to send in joining form hoping that i will feel like i am not left on the scrap heap after dealing with lymphedema of the leg since 1993 without much info
cheers Judith


I am sending an update on the article I wrote on 4/4/03 in regards to my sister-in-law. I am glad to say that my sister-in-law is coming home tomorrow. She recieved a miracle from god and held on and made it through the worst of her situation which was the sepsis caused by an infection due to the lymphodema. She still has a long road ahead of her, she has to deal with the lymphodema in her legs yet. However, if left untreated she could slip back into the same situation she was in. So, take the time to go to the doctor and take care of your body, you only get one body.

 I am sending you this email so that maybe I can help others. My sister-in-law has lymphoedema in both of her legs. She never really knew she had this condition, she always believed it was caused by being overweight and also because she was to afraid and ashamed to go to a doctor. She recently got an open sore on her one leg which resulted in an infection. Sad to say but she left it go and she is now in the hospital on life support fighting for her life. Seeing that she did not go to the doctor until it was to late the infection left the local area and spread throughout her blood stream. She has failing kidneys which they are administering dialysis to help clean her blood and she has failing lungs which they put her on a ventilator to help her breathe. They have also gone as far as putting her into a doctor induced comma so that her body can try to fight the infection. The doctors tell us that all we can do is wait and pray for her. I hope that this email will inform others that they should not be ashamed to seek doctors care and also to help save someone else's life.

We received this interesting letter from one of our members which we have reproduced here in part as a timely warning regarding the risk of infection for those of us with lymphoedema.

I have lymphoedema in my left arm, the side of my Mastectomy, which is really pretty good being contained between my elbow and shoulder. I'm slack with my nodeing at times, loathe the bandaging and find the sleeve very hot in Summer. Pretty much your normal run of the mill patient I guess. However I have just experienced a massive Staph Infection in my arm and would like to share how it came about so that others may be warned.

...........I have yearly visits to the Dermatologist.....and being mindful of the trauma to my left arm, never allow injections, blood pressure readings, sunburn etc. I always remind the Dermatologist of my arm and she always checks it out with helpful hints on skin care.

A few weeks ago, I was zapped on various sun spots on my body, including one on my back round the scapula area on my left side. All was well and home I went. Five days later, my partner commented as I was getting into bed, that I had what looked like very bad hives all down my left side.

I looked in the mirror and thought I must have an allergy, although it wasn't itchy and appeared to be under the skin, but bumpy. Next morning, my left arm was the same only to the elbow, where the Lymphoedema seems to stop. A hurried appointment at my local GP, a look through her Dermatology reference book, a call to the Dermatologist and to Dr...... seemed to confirm that the zapped sun spot was the point of entry for the staph infection, although the sun spot itself was not obviously infected. I was prescribed a high dose of ..... and was sent home to keep a close watch on the affected arm.

I felt pretty lousy for a few days until the antibiotics kicked in, but they did the trick. .......Just a little reminder that the lymph can so easily be prone to infection, no matter how much care is taken.

May 2000

Comments: Found you doing a search in the hopes that someone else might benefit from my sudden cure. I am a bit embarrassed, and hope I don't sound like a crank, but I have had lymphoedema, especially in the left leg, for 25 years since surgery and radiation for cancer in 1974/5. It has completely gone and I hope what worked will work for some other sufferers. What happened is Meniere's Syndrome - as a control the Specialist's suggested I reduce my sodium intake to 60ml per day. Two weeks later, the swelling had gone....

Admittedly reducing salt to this level is not an easy matter - but look at this wonderful, unexpected present! I am a member of the Brisbane Group but find it difficult to get to meetings given where I live which is at North MacLean. I am thinking of commencing a support group on the Southside of Brisbane. I have spoken to my physio and she said it would be a good idea. I would like some feedback. Please phone Bernice Lippiatt on 073 2975108.
PO Box 2010 Crestmead
Ph: 073 2975108
Fax:  073 2975149

Perhaps anyone interested in forming this group, could contact Bernice on the phone number given.

In August 1977, lymph nodes in my groin were removed as part of my treatment for advanced cancer. In June 1995 my left ankle swelled during a flight to Italy - the first time either foot had done so during many overseas flights. The swelling did not reduce and soon a bright red band appeared around the line of my socks. Since I was leading a school tour, I could not rest - nor did I wish to miss anything! Soon my whole leg swelled and was hot and stretched. A pharmacist diagnosed cellulitis and fortunately was able to supply the correct antibiotics. The inflammation disappeared but not the swelling.

One leg looked like the slender appendage of a thoroughbred, the other like a Clydesdale.

I travelled to Cyprus after Italy, where a specialist indicated that the swelling would disappear. It did so, to some extent, but never completely and my leg tired very quickly.

In 1997, I took another trip - to Greece and Turkey and during the heat in Turkey (42° at times) the foot and leg swelled again though it was not infected. This time I went prepared with injections and antibiotics.

My very caring GP had been doing his homework and on my return was able to tell me of a lymphoedema Clinic (name of clinic deleted – Editor) and referred me to the Specialist there. Assessment and X-rays followed. The latter was not very pleasant but bearable. The nurse warned me that the injections between my toes were very painful and would bring tears to my eyes! When he appeared I asked the radiologist whether I should address him as Torquemoda in the light of the nurse’s warning.

All was well, however. After three weeks of massage, exercise and the application of a pump-like machine to the affected limb, as well as training in bandaging the leg, the leg was much improved. The bandages remained night and day for three weeks. I know just how Tutankhamon must have felt! After that, I wore during the day a (very expensive) lycra body stocking, rather like panty hose with one leg cut off above the knee, and bandages at night. The regime continues and will do so for the rest of my life, I imagine.

It is time-consuming and often uncomfortable and very hot but it has given me my active life back again. For that I am very grateful.

In June/July 1998, I flew to Cyprus to work on an archaeological excavation. On doctor’s advice I bandaged my leg about 12 hours before the flight and did not remove the bandages for several hours after arrival. Flight attendants offered to let me on to the plane first and even suggested a wheelchair - tempting privileges which I refused since I was not at all disabled.

It was very hot in Cyprus - 40° in the trenches and 42° for several days in Nicosia yet my leg hardly swelled at all. I did suffer from heat rash occasionally but it was wonderful to do all the things I most enjoy with very little discomfort. Of course I wish I did not have to wear the stocking or bandage my leg on very hot nights; I long for my shapely ankle to return; I wish the bandages did not take so long to roll. Nevertheless there is an active life after lymphoedema and I thank all those whose research and dedication have made it possible.

Miss Pamela Davenport

Thanks for those interesting comments. If you have any experiences that you would like to contribute and share, you can send them in to us on the "Contact Us" page.

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