It is not just a little bit of swelling!! Lymphoedema

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This is a guest post that I did for the blog “Nancy’s Point”  …  I feel it is important to repost it to continue to build awareness and understanding of the problems associated with Lymphoedema. Nancy writes a wonderful blog on her experience with Breast Cancer and as we know Lymphoedema can be a side effect of Breast Cancer treatment. In fact Lymphoedema can be a side effect of any cancer treatment where lymph nodes are removed. There is also Primary Lymphoedema where people are born with a weakness in their lymphatic system, issues can arise at birth or later in life. Lymphoedema is often misunderstood and the impact on quality of life is often unknown. I hope this post brings better understanding.

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It is not just a bit of swelling! Lymphedema

I am very excited to have been invited by Nancy to write a guest post on Lymphedema, as March is Lymphedema Awareness Month. Approximately 10 million Americans and 100 million worldwide suffer from Lymphedema, as stated by the Lymphatic Education and Research network this year, but there is still much ignorance, misdiagnosis and misunderstanding around this condition. In this post I will be writing about Secondary Lymphedema but we should also acknowledge those with Primary Lymphedema who were born lacking important Lymph Nodes in parts of their bodies. Even though so many people suffer from Lymphedema, few know about it, unless they have it themselves or know someone.

My journey with Lymphedema started at the end of my treatment for Uterine cancer 12 years ago and like many, the removal of Lymph nodes and follow-up radiation destroyed part of my lymphatic system, leading to swelling, discomfort, pain, lack of mobility and infections. I remember seeing my surgeon before my radical hysterectomy, I was concerned over the removal of the lymph nodes, as I felt I still needed them!! His response was, ” It is better than being dead!” Needless to say that was the end of that conversation. During surgery I had 22 nodes removed in the groin area and 28 sessions of pelvic radiation. The Lymphedema came up as soon as I finished treatment. We have between 600 and 700 lymph nodes in our body, but when crucial nodes are removed, (radiation and surgical scarring also destroy the surrounding lymphatic vessels) fluid will collect in the limb and cause Lymphedema.

Three litres of fluid a day is removed from the tissues via the lymphatic system and passed into the circulatory system. The lymphatics are the “garbage disposal system” of the body with the lymph nodes acting as a “Cleansing system,” purifying, filtering, destroying bacteria and toxins. It is however, sadly the way that cancerous cells spread to other parts of the body, hence their removal during treatment. The lymphatics are an important part of the immune system and removal of nodes leaves one vulnerable to infection in that area. Unlike the vascular system the Lymphatic system requires the movement of muscles to push the flow of lymph through the body, there is no heart pumping as in blood flow.

When my leg first started to swell I was really scared, it felt like a tree trunk, heavy, uncomfortable,unsightly, my normal clothes would not fit and I felt self-conscious. Fortunately a friend told me about a workshop that was being held at Westmead hospital in Sydney. There I found much-needed help, a rehabilitation hospital, Mt Wilga in Hornsby, that specialised in treating Lymphedema. There followed five weeks of Complex Bandaging, Manual Lymph Drainage and Laser. My leg was thickly bandaged like having a plaster cast on. These were removed only to shower, which I did at the hospital, I drove each day from home for this treatment. At the end of five weeks my leg had reduced in size to just a little bigger than my good leg. I was then measured for a compression garment, from waist to ankle on the bad leg and to the knee on the good leg, a real passion killer!! I felt miserable. However over the years I spent a great deal of time walking in water which really helped the swelling, as it acts as a natural compression. Exercise is essential to help the lymphatics, as they need movement to function, elevating the leg whenever possible, raising the end of the bed all helped and eventually I was able to convert to just a compression stocking on the bad leg. Importantly when ever I fly however I wear compression tights to protect both legs from further damage. Though I have never done it myself yoga is very good for helping Lymphedema.

This would have all been manageable, but I experienced repeat infections, even though I was very careful to look after my leg well. These infections called Cellulitus, caused by the lack of “cleansing” nodes, would come up in half an hour and require a trip straight to hospital for intravenous antibiotics for ten days. Needless to say this impacted on my work and home life but we managed. That was until 2010 when an infection spread to my heart and I was diagnosed with Pericarditis. Fluid was removed from around the heart and I had four weeks of strong antibiotics via a PICC line, as it is almost impossible to find a good vein in my arms due to previous treatment.

After this I started to look for alternative treatments for the Lymphedema. Something that would maybe cure the Lymphedema or lessen the infections. I found out about Dr Corrine Becker, who pioneered Lymph Node Transfers in Paris, and sent her an email to ask if any Doctors in Australia did this surgery. She had trained many doctors in the US and elsewhere but not Australia. I continued to send out emails to the various Lymphedema specialists. One day a reply came inviting me to join a research program at Macquarie University Hospital in Sydney, started by Prof. Boyages, who is a Breast cancer specialist. As is the case overseas much of the research into surgical intervention for Lymphedema is funded by the Breast Cancer community, due to the high incidence of Lymphedema in the arms of patients after treatment for Breast cancer. He and other doctors wanted to find a way of helping patients with arm Lymphedema. They realised that this was not just about a “little bit of swelling”, but a life changing side effect of treatment that was affecting patients, mentally and physically, as well as becoming a financial burden for the rest of their lives. In some cases surgery is now being done as part of the reconstructive process, as the sooner new nodes are put into the arm, the better the response. Nodes in this case are often taken from the groin and placed in the armpit. Other patients may have it done years after the onset of Lymphedema and may also need some liposuction to remove stubborn fibrotic areas. There has been great success in improving the arms of these patients and giving them a better quality of life. Surgery for Lymphedema of the legs is more recent and takes longer to see results. In some cases two transfers are needed to groin and lower leg. For a patient to be eligible for LNT to arm or leg they need to be assessed by a surgical Lymphedema specialist. Their Lymphatic system would be mapped to find suitable nodes to harvested and the best position for placement to get maximum results.

March 14th 2013 I had the first leg Lymph Node transfer in Australia, Lymph nodes were taken from my neck and placed in my left knee. I started to create a blog about this, as I felt it needed to be documented. I called it “My Lymph Node Transplant,” it has now grown to include many articles, videos and stories that I feel will help people manage their Lymphedema. It is also a great resource for those who are having Lymph Node Transfers or other surgery world-wide for Lymphedema, in both arms and legs, as this is now becoming more common. My leg is doing well a year later the nodes are growing but it is a slow process, so far I have had no infections and that makes me very happy!! The hope is that as the surgeons become more experienced this will become a viable treatment for Lymphedema.

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
http://lymphnodetransplant.wordpress.com/ Thanks

Preparing for Lipedema Liposuction (mind, body and wallet!)

helensamia:

For those with Lipedema this maybe a good blog to follow for personal infomation

Originally posted on My Lipedema Journey:

A little over a week to go until my surgery and I’m preparing as much as possible to ease the recovery process. I spoke with a consultant who specialises with Lipedema and I was recommended to have Lymphatic Drainage Massage (LDM) at least two times prior to surgery.

So I would like to focus on two things that you should prepare: your physical body and your bank account. LDM is, at least where I live, rather expensive and from what I understand, not covered by insurance so it comes directly out of my pocket. As of yet I haven’t researched whether or not the rest of my surgery will be in some way claimable in my country but I will hopefully remember to report on that later (if not, please remind me)!

From what little I’ve prepared I am at least having LDM! It basically means I lie on a flat bed…

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Help with self-care… Videos

These two videos were created at Mt Wilga Rehabilitation Hospital so that people who could not come to the hospital for therapy could benefit from their program…. One video is for lymphoedema of the arm and the other for legs. Some of the video content is duplicated but has individual topics for legs and arms.. The portion which shows self massage is very important for self-care. What I have learnt is the importance of clearing the abdominal area… The “basin” which is the area below the rib cage between the hip bones and pubic bone. Using abdominal breathing and then massaging into this area, to stimulate the many lymph nodes we have in the abdomen, you can actually start to feel the abdomen gurgling when you do this. It is also something you can do several times a day. Remember … Clear the Basin… This is a great help for those with leg lymphoedema as the lymph from the legs can then be cleared upwards and then eliminated from the body. I hope you find these videos helpful..

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
http://lymphnodetransplant.wordpress.com/ Thanks

Story in pictures.. Building awareness..

Apologies for my lack of updates!! I have been very busy setting up my twitter account and working on my Facebook page in the hope of spreading the word about Lymphoedema. Cyberspace gives a world-wide canvas to  work on and every person who reads, shares, likes and now twitters helps to educate and teach others. Often those of us with lymphedema feel we are the only people who know about it!!! We all have stories of misdiagnosis, lack of treatment and ignorance within the medical world. Often we find out about treatment and care for ourselves or via others who have lymphoedema. We are the best at supporting and understanding each other. Everyone who reads this can help to build awareness by emailing to friends, reblogging, following my Twitter or Facebook page… Both of which have links by scrolling to the end of these posts.. Share and like… Together we can make a difference.. 😃😃
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The other part of this post is to tell a story in pictures of my three weeks spent having complex bandaging. At the end of the three weeks my L-Dex reading was down to 5.1… The best it has ever been for the past 12 years. My leg responded very well to the MLD and bandaging to the extent that it looks as if the transferred nodes are starting to really help the lymphatics in my leg. One problem area was the fibrous tissue at the back and side of the thigh. This we know cannot be helped by the Lymph node Transfer which will only help move the fluid. Three weeks of MLD, bandaging and the use of laser has softened this area so now there is more chance of it shifting. I have also been measure for a new compression stocking. Previously I have worn a circle knit stocking but the therapists at Mt Wilga prefer the flat knit garments which have a seam up the back and are quite thick. This was the type of garment I had 12 years ago but i did not find them comfortable as I had an up to the waist garment. However this new garment is much softer and feels very comfortable. The decision was made to order a custom-made Elvarex by Jobst. The off the shelf garments are now not the right size as the shape of my leg has changed, lower leg almost the same as good leg but from just below knee upwards still quite swollen. So here is the story of my three weeks in pictures.

First week you can see how swollen the knee area is and middle of leg

First week you can see how swollen the knee area is and thigh

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Taking the bandages off each day ... Starting to see improvements

Taking the bandages off each day … Starting to see improvements

A chart of progress measurements

A chart of progress measurements

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Elvarex flat knit stocking, black as so over beige!!! Happy with results

Elvarex flat knit stocking, black as so over beige!!! Happy with results

So where am I at now? Well the leg is still reducing but I still need at this stage to wear a compression stocking. July 4th I have another follow-up appointment with my surgeon. More photos taken more measurements and progress report. I am still part of the research program so will be monitored for at least two years. I think after fifteen months I am starting to see progress… Not a cure yet but progress in the right direction. It shows that time is needed and a lot of patience to see results. In six weeks I return to Mt Wilga for a review of my stocking and how it is fitting and also another measure in the hope there is more reduction.

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
http://lymphnodetransplant.wordpress.com/ Thanks

You Understand!!

I have been thinking the last few day how special it is to talk to another person who has Lymphoedema… Because they get it with no need to explain. While staying at Mt Wilga I have had that opportunity… Very special….
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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
http://lymphnodetransplant.wordpress.com/ Thanks

Why are my legs so fat? You might actually have Lipedema!

helensamia:

I am sharing this as it is a great check list to see if you may have Lipedema…. some people have a combination of Lymphedema and Lipedema… Or one or the other… The difference is Lymphedema is a retained fluid in the tissues where as Lipedema is a disorder of the fat tissue in the body.. Lipedema can also lead to lymphedema or visa versa due to the impact on the normal function of the Lymphatics. This article also has some great links to further information… Thanks Crystal for this post…

Originally posted on Lip Lady Fashion & Beauty:

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Do you feel embarrassed by your “thunder thighs” or “cankles”? You’re not alone. But, it might be more than just a need to lose a few pounds. Answer some of the questions below to determine if you might be suffering from a medical condition called Lipedema that affects approximately 11% of the female population. 

Do you frequently experience pain in one or both legs that feels achy, pressing, pulling, hot, or restless?

Do you have a larger, disproportionate bottom half and smaller waist, or pear shape? 

Do you bruise very easily?

Does it hurt (like a painful stub of the toe) if someone leans an elbow into your leg, presses with their fingers, or you lightly bump into something?

Do your legs or ankles seem to get more fatigued and swell up toward the later part of the evening?

Do you try to lose weight, but it never seems to…

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The Next Step of my journey… 14 months post surgery

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Just a quick update to let you know I am staying at Mt Wilga rehabilitation hospital in Sydney. The internet connection via Telstra is not good!!! Very slow and drops out!! I am here for a review of my leg at this stage and to have intensive treatment to see if the swelling in my knee settles. Very happy with lower leg which looks “normal”. Each day I have MLD, laser treatment and then re wrapped as in the picture. (Complex bandaging) Bandaging remains on 24/7 except to shower. I have a Gym program to help stimulate the lymphatics and would also be doing a pool session but this has been vetoed due to low blood pressure. Instead I am walking a lot in the area of the hospital. I am learning new MLD techniques and will be measured and assessed for a new compression stocking as the leg has changed.

I think that the hardest thing with this LNT is the unknown. Where are we up to? Where are we going? What do we do while all that happens? Sadly there seems to be no set protocol for post surgery, every doctor seems to be a little different. I am very glad to be able to stay here for this treatment. I am able to focus totally on healing and improving my Lymphedema.

When I have better internet I will write more about this stage of the journey. This is 14 months post surgery. I am to be here for three weeks, so happy that the staff are lovely, my room looks onto a garden and is very spacious and to my health fund for paying!!! I have much to be grateful for..

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
http://lymphnodetransplant.wordpress.com/ Thanks

June is Lipedema/Lipoedema Awareness Month

helensamia:

Sharing for all those who have Lipedema or a combination of Lipedema and lymphedema. Many people do to realise they have Lipedema. Thanks Catherine for all your work

Originally posted on Lipedema Simplified BLOG:

Lipedema/lipoedema was first named as a disorder/disease at the Mayo Clinic by Dr. Edgar Hines and Dr Edgar Allen in 1940.  Lipedema, known as lipoedema in Europe, is a chronic disorder of the adipose tissue generally affecting the legs, which causes the legs, and sometimes the arms, but not the feet, to accumulate fatty tissue. It’s been 74 years and only now with grass roots advocacy is lipedema receiving attention in the U.S. Help raise awareness.

Lipedema Stages 1 2 & 3

Lipedema Stages 1 2 & 3

June is Lipedema/lipoedema Awareness month. Beginning on June 1st, and all month long, I will be posting 1-3 minute short micro-documentary clips from the raw footage in process of being edited into a full length documentary. There will be postings on patient experiences, the process of diagnosis, conservative treatment: compression and MLD, lymph-sparing liposuction, information about the issues of anti-fat bias in healthcare, and interviews with many of…

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