It’s not just about the leg.. I’ve hit a wall!!

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ME!!

Well for starters I thought it was time you saw my face and not just my legs!!!

It is four months since my surgery, on 14th March 2013, to have Lymph Nodes transferred from neck to knee to treat the Lymphoedema in my left leg. Due to the nature of blogs you will need to go back to the archives for March to read the initial posts re surgery.

I started this blog because I wanted to document mine and others journey’s through this very new surgery, Lymph Node Transfer. When I looked on the Internet I could find no information from patients or on post surgery progress. The videos I saw seemed to say patients had the surgery and then everything was ok!!! Often without a timeline to give an accurate perspective. At first I was going to keep a diary, as the first surgery to a leg in Australia, however I thought… What good is a diary hidden in a drawer? ….. so my blog was born with the help of my daughter.

While you are here please explore the other posts, as there is a great deal of information about and for Lymphoedema. Non of this replaces however an assessment and diagnosis by a doctor, preferably one who understands Lymphoedema!! Also a Lymphatic therapist can set you on the right track for the use of Manual Lymph Drainage, bandaging and compression garments. It is important that compression garments are correctly fitted, so as not to cause more problems. There are some great videos which help you to do self massage and exercises at home.

However as we all know this is a 24/7 battle to keep limbs as best we can… Surgery offers a ray of hope, though at this stage it is very new, but it certainly brings a light to the future. I give no opinion on the surgery other than to document progress in an open and honest way and allow others to make their own opinions. I will say the results are slow and it can take up to two years for the transferred nodes to grow. Everyone has a different story, different results and different progress, every doctor has a different protocol. Results for nodes transferred to arms is different to legs given the larger area and the pull of gravity. My experience is with my leg so I would love to hear someone’s personal experience with a transfer to the arm.

So far we are following the progress of Sue, Jennifer, Lori, Jessica, Christine and myself. There is also an inspirational story of Amy through her Facebook page at http://www.facebook.com/pages/Ninjas-Fighting-Lymphedema/110454419138265?ref=ts&fref=ts Ninjas Fighting Lymphedema… A must “like.” Via the Internet we are able to support and encourage each other so as not to feel so alone. When surgery is new there are few people to ask or talk to so this little “leg club” is great, it is something I never realised would be such a help when I started my blog. What we share is an emotional roller coaster of hope and expectation!

Before I finish, as I said in the title, I’ve hit a wall, not going forward or back but have reached a plateau! The doctor had said it was ok for me to start to swim again, but for a while I have been a little anxious about another infection, as this is why I stopped going to a pool in the past. However I found one that appears very, very clean and change rooms checked regularly, there is a pool nearer but it is not so well looked after, so I have been going to South Sydney Juniors. The best thing is that it is quiet and usually I can get a lane to myself, in the middle of the day, so no pressure to go fast. I spend thirty minutes, at least, walking in the water and treading water. This ensures that the legs are down and therefore the waters natural compression comes into play, more at the ankles and then less going up the body. This pool is also good as even in the shallow end the water is up to my arm pits thus stimulating the nodes in the whole body. I do enjoy the time spent with no compression or wraps on and I feel it helps my whole body to get stronger. After I drink plenty of water to help flush out the toxins from the body. Being in the water the limbs stay cool especially when it is to hot outside for walking…I know many of you feel a bit embarrassed to go to a pool but there are all shapes and sizes and once in the water no one sees you and everyone is focused on their own thing! Well I will see if this helps to get me over the wall and on to the other side!!

Anyone who has a story of Lymphedema I would love to hear from you either in the comments or by email helenbrd@bigpond.net.au if you are happy to share your story as a post just let me know. I hope to bring you further updates from everyone soon..

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Photo South Sydney Juniors

12 thoughts on “It’s not just about the leg.. I’ve hit a wall!!

  1. Keep up the swimming, it is absolutely the best thing for you. It must be frustrating to have reached a plateau, but I’m sure you’ll climb out of there soon, I can feel your determination!

  2. The reason I am investigating doing this for my left leg (secondary lymphedema after all groin nodes removed)is to reduce the pressure feeling in the medial thigh, and possibly reduce the workload each day to chase the fluid out. The leg itself is not grossly edematous, it is just a bit bigger than the other leg, but every free space in the leg is full of fluid, so it is heavier, especially the foot, above the knee and the inner thigh and back of my leg and up to my buttock. I worry about getting older and not being able to be as rigorous ( or even being able to afford), the routines I carry out to reduce the leg fluid. Did your surgeon suggest that reducing the workload is a realistic expectation? this is my particular concern with my leg, and I guess, not letting the lymphedema naturally advance past a treatable phase, as it is a progressive chronic condition.
    Your thoughts on this would be appreciated!

    • Firstly everyone is different in there needs re surgery but after tests and assessment by a specialist it is easier to get an accurate picture… Then after surgery response can be different dependent on the severity pre surgery. I can only speak for myself but I was told that I would be able to wear compression less and that it would help with the infections I had in the past. My feeling is at this time my leg responds better to treatment. I am only four months since surgery so still a long way to go. In September I am to have more tests to compare results so far with pre surgery. Be prepared for at least 3 months after surgery to bandage and do,regular MLD to support the new nodes as they start to work.. And heal.. It takes up to two years for the new nodes to grow new lymphatic vessels. At this stage my lower leg is “normal”.. There is still swelling around the knee but part of that is post surgery as nodes went into my knee and I notice it swells after exercise.. That is gradually settling.. I suggest you make an appointment with a specialist surgeon.. I am not sure where you live.. They will then be able to answer your questions and assess your situation.. Let me know how you go… Helen

  3. Hello Helen. Thank you so much for documenting your journey and progress. You are a brave pioneer. I have a question for you. I too have lymphedema -in my left leg. I have had it for about ten years. he last two years with swing three times a week, it is very close to the size of the “good leg”. My question is this. I have always been told that it is important to wear a compression stocking when exercising. So, I always wear a compression stocking when I swim. I wear a triathelete style bathing suit that comes to my knees so the stocking is quite secure. Have your doctors advised you to swim without wearing a compression stocking? If so, what is the reasoning? Best, Sherry

  4. I think it is important to be brave and get into a swimming pool. The buoyancy of the water takes the pressure off your body and supports you while exercising. I can understand, however, that picking up infections could be a cause of concern.

  5. I’m poking around your blog a bit and again, I have to say it’s great. I love the question you posed in this post – “What good is a diary hidden away in a drawer?” My sentiments exactly. Blogging=sharing=helping others feel less alone. Thank you!

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