Lymphedema and Compression

Sharing Karens story and her latest update as to how well she is going with the treatment of the Lymphedema… There was a time when she could not wear compression garments due to the size and shape of her legs… However Karen is now going really well it is so good to see.. Thank you Karen as always for sharing your story.. It shows that there is hope for everyone with Lymphedema. Take care

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I am not a person who likes to make absolute statements. I have always believed that what works for one person with lymphedema will not always work with someone else with lymphedema. Every person is unique.

BUT I am now going to say that I now believe that compression garments or wraps is the key to living with lymphedema. I have primary lymphedema and I have lived all of my life with it (well officially  the lymphedema didn’t show until puberty) and I have had a lot of lymphedema pain for the last 25 years. In the last few months I was able to have treatment where I was wrapped with Coban wraps and my legs were finally to a shape where I could actually wear compression stockings. WooHoo!!! I have not had lymphedema pain since I started wearing my compression stockings (actually since I started being wrapped with the Coban…

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Lymphedema: a Name for 33 year’s worth of questions.

A great post about Primary Lymphedema and its diagnosis and treatment ..thanks Laura for sharing your experience so others may learn from it …

Expressions of Laura Ashley

This month, I began a journey that I never thought I was prepared for. Upon realizing that I was in my 30’s and having never really addressed why my legs always looked puffy or swollen, I thought I’d go to the doctor. I didn’t really know where to start, so I went to the foot doctor. As part of their intake session, they took an xray of my foot. When I met with the doctor, he looked at my foot movement, my walk and gait, and range of motion. But he said my bones were fine. Even my foot, which he said was not a “flat foot” but a type of flatter foot, was fine. But he said he thought I had lymphedema because of the swelling and that he’d refer me to a lymphedema specialist. I left with a prescription for low level compression wear and some online resources…

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Lymphedema… The unwelcome guest that never leaves!!

imageHaving cancer and going through surgery, chemo and radiation takes its toll but the hope is that after all this life can move on. Imagine however that an unwelcome guest appears after all this, lymphedema. Lymphedema is that dreaded side effect of cancer treatment that remains as a constant reminder of what you have been through. For some people the cancer may return and treatment continues, for them Lymphedema is an added burden that requires their attention 24/7 along with on going treatment. Lymphedema if ignored will flare up and cause even bigger problems such as pain and infection. It effects self-image and impacts on ones quality of life it is also an added financial burden. Lymphedema is the unwelcome guest, post cancer, that never leaves. However we must never forget that some are born with lymphedema which impacts their entire life. However in this story the focus is on lymphedema as a side effect if cancer treatment. Loretta tells us of her experience with Lymphedema after treatment for Ovarian Cancer.

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This is Part 1 of Loretta’s story
“I was diagnosed with Ovarian cancer in March of 2011. I had gone in January to my Gynaecologist for my regular Pap Smear, I received a call to come back as it was irregular. I went back in February and the test was redone this time the results were normal. My Gyn Dr. Daria Klachko said to me she would like to do a cervical and uterine biopsy. That was done sometime in February and that too came back normal. She then told me she wanted me to go for an ultrasound, that was done in March and unfortunately that showed a mass the size of an egg on one of my ovaries. I then went for a CT scan which confirmed the results of the ultrasound. At that point Dr. Klachko referred me to a friend Dr. Mario Leitao who is a gynaecological oncologist at Sloane Kettering hospital in NY. He confirmed by worst nightmare, I had Ovarian Cancer. While we were arranging surgery I said, “please don’t let me get Lymphedema.” I was familiar with Lymphedema, as my older sister had it also from a gynaecological cancer surgery, however I did not at that time appreciate her struggle with it. In June, when I went back to Dr. Leitao, I found out I was indeed very lucky, I had stage 1A clear cell, although clear cell is very aggressive none of the 26 lymph nodes he removed showed any sign of cancer. I had a mix of feelings at this stage, relief that my cancer was caught early and was not in the nodes but some anger too that 26 nodes were removed as I was already having some signs of lymphedema. I told him I was getting some swelling in my left thigh but he attributed it to post op swelling. When I finished with my chemo the swelling was more pronounced and I was diagnosed with Lymphedema. During this time I also had genetic testing done, I tested positive for the BRACA mutation. This was done at Sloane Kettering, they told me that since both my sister’s had cancer and my late father that they had the gene mutation too.

My LE fortunately was very mild at this stage. I was fitted with a 15-20 compression stocking in January of 2012 and went for MLD on a regular basis. I decided not to go to Sloane Kettering for MLD I found a place nearby in New Jersey and a Dr. who was supposed to be a lymphedema specialist.

My husband and I decided to take a trip to France in June, unfortunately we didn’t get a direct flight and by the time I got to Paris my left leg and foot were very swollen. I was frantic, to be away from home and trying to deal with an ever-swelling leg, my low compression stockings were no help at all. I bought new sneakers and tried to elevate and rest as much as I could but I was in Paris!! Then a river cruise on the Rhone, so how much could I elevate? It was at this stage I started to realise the true effects of lymphedema. When I came back I went to the Dr. in NJ and showed her the swelling, which by that time was out of control, the only thing that helped was staying in bed off of my feet. We upped the compression but still nothing helped. This was a miserable and worrying time being unable to control the Lymphedema and the impact it was having on my life. It was at this point I called my surgeon and asked if he could get me into The Sloane Kettering Lymphedema program. At Sloane Kettering I was bandaged but didn’t do well with the compression. The first night I felt like my foot was on fire but kept the bandages on until the next day, when I took them off I had sores behind my toes. Needless to say I didn’t bandage again. However I tried a ready wrap and that worked. At this point I was hoping to find some other help for my Lymphedema as I was having such difficulty controlling it.” Loretta

Thanks Loretta for sharing with us how your lymphedema started in the second part we will hear about Lorreta’s Lymph Node Transfer and her time in hospital… Remember March is Lymphedema Awareness Month and by telling our stories we allow people to understand the impact of Lymphedema on our lives.
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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.
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My Invisible Disease by Michelle

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When the invitation came to “Write your Story” as part of Lymphoedema Awareness month, my initial thoughts were ‘I don’t know where to start, it will be too long and boring, do I want to go over all that again’. It’s such a mixed bag – it has been painful, presented many challenges and also some good opportunities, like connecting with all of you now!

Long story short, I had endometrial cancer 13 years ago, I recovered and five years on I felt like I’d passed through the ‘danger zone’ and was doing fine. I went to some hot springs, got in to sooth a sore back and the next day my leg began to swell. That was almost 8 years ago.
I knew what it was because I’d been given a sheet of paper when I left the hospital warning me to watch out for signs of Lymphoedema. I just didn’t realise it could appear so long after my surgery.
What I have found out about lymphoedema in the last 7 plus years has taken determination, courage and a tenacity to not give up in the face of consistent messages that there’s no cure, your only options are DLT, MLD, compression garments, and don’t get bitten by anything!” Like probably most of you, felt reluctant to take that lying down and so started the long search! I did find other things that would help along the way, like hydrotherapy, rutin powder and a low carb diet, to name a few. I’ve also been assessed as suitable for LNT but at present the only surgeon doing this surgery in Australia is not comfortable with transferring to the groin, which is where they need to go to make a difference for me.

Which brings me back to, how do we stay positive and not give up when the doors turn into walls? Rather than go into the physical aspects of the struggle with lymphoedema what I really want to talk about is how it impacted me emotionally and psychologically. Just in case I’m not the only one 🙂 First was the impact of realising that ‘I’ve got this thing but no one seems to know much about it’. GP after GP stared blankly when I said I had lymphoedema. I found a massage therapist who had been trained in lymphatic drainage massage and had developed a small business providing massage, bandaging, compression garments and creams etc. I had to travel 7 hours by car to see her. None of this was subsidised and represented a substantial cost upfront and ongoing. I wrote to Lymphoedema experts to see what else I could do. I ended up frustrated because the bottom line was, there was not much other than the standard maintenance therapies that seemed to work.

I recently asked myself, what is it about lymphoedema that makes it so invisible as a condition within the medical model? I’m not sure, but I’ve wondered if lymphoedema is seen as a blip in the otherwise positive story of saving people from cancer? Perhaps medicine doesn’t really want to acknowledge that a surgical intervention may have created something worse than what it was trying to cure. I’ve had people say to me ‘well, at least you survived’ and this is true but it’s not the whole story! And this is the main point I want to make, it takes an enormous amount of inner strength to keep moving forward when you’re left alone to find your own solutions, cover the cost of treatments and garments, deal with the constant worry of cellulitis, the sense of isolation from your healthy friends and wondering where will this all end, how will I manage old age? At times this has felt truly overwhelming!

One positive thing my GP did recently when I went into a mini melt down during a visit, was to suggest I have a mental health plan (in Australia this is subsidised sessions with a psychologist). At least mental health is subsidised! I mean, initially I was horrified. The GP thinks I’m nuts!!!! But the truth was that I was starting to sink under the struggle of being an ‘invisible’ person with an ‘invisible disease’. So I went along for a session and it turned out that this psychologist specialised in Mindfulness meditation. I signed up for an 8 week course and that made a huge difference to how I was coping. I still struggle at times but meditation gives me a reprieve, a place to let go of the struggle. I’m not saying meditation is for everyone. It seems there are as many things that help as there are people with lymphedema. The main thing for me really was to acknowledge that I was struggling and that I had become isolated. Having people who understand you is so important. Forums like this blog site are good for breaking down our isolation. I’ve come to see how important that is!

My hope is that there will one day be proper resources allocated to lymphoedema, that others will not have to spend years piecing together a picture of what will help them cope. I hope there will be good emotional support for those facing life with lymphoedema, more research and clinical trials of possible solutions.

In the meantime, it’s good to know you are all out there. I’ve been so impressed and inspired by people’s stories of courage on this blog site! By Michelle

Thanks so much Michelle for sharing your story with us prior to Lymphoedema awareness month.. Helen

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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.
https://lymphnodetransplant.wordpress.com/ Thanks

Elizabeth shares her lead up to Surgery on 19th June

imageThis is the latest update from Elizabeth who will be having surgery with Dr Chang on 19th June… I am sure that we all wish her well and thank her for sharing with us her progress…

“I am beginning my countdown to June 19, 2015 which is my surgical date for a lymph node transplant and the lymphaticovenous bypass with Dr. David Chang at the University of Chicago Medical Center. I initially found out about Dr. Chang from this blog on which I am presently writing. I am so grateful for the support and the commeraderie I have received on this blog-The tears, feelings of hopelessness/helplessness, not to mention the loss of body image was something I had not experienced before. Once I read about Dr. Chang from this blog,(he was originally from the MD Anderson Cancer Center in Houston, Texas) I felt my first rays of hope. For this reason, I vowed that I would share my story so that I could help others–so others will not give up searching for a more permanent solution instead of the countless conservative measures that we Lymphies must endure.
I want to share my experience as I go along so I don’t forget anything.

I went for an evaluation with Dr. Chang in September-a lymphoscintigraphy is a test where dye is injected between the toes to determine where the lymph nodes stop draining. After being told that the drainage in my left leg stopped at my knee, I knew I wanted to have the surgical procedure as soon as I could work everything out with my place of employment. I researched to make sure Dr. Chang was in my network for my health insurance, and Thank God he was as was the surgical procedure.

Dr. Chang emailed his research to me so that I could understand the procedure and what my chances were of getting back to “NORMAL”-All I want is to get my left leg measurements to be similar to my right leg, (which is still normal). The difference in measurement of my left leg to my right leg is about 2 inches bigger in the left thigh, 1 1/2 inches bigger in the left knee and about 2 inches bigger in the left calf. I have been applying wraps, compression garments, bedtime garments, MLD-you name it, I have been the most compliant patient but I really need a more permanent solution—In order for me to put on the Elvarex 1/2 panty 40 mm of mercury compression stocking, I have to sit on the floor with a pair of Playtex purple rubber gloves and pull up this thick stocking even when it is 95 degrees outside. I wear the stocking under my blue jeans as well as under the spandex I wear to the gym. Now finally, even though I know this is a chronic condition and I will always have to wear a compression stocking, I am hoping the amount of compression will decrease after the surgery. Maybe I’ll be able to wear a jobst compression panty hose that has 20-30 mm of mg compression instead of 40 mm. Everyone needs hope-The vascular surgeon here in CT that I confer with occasionally, told me that I should speak on the topic of lymphedema since I have researched this topic so much and feel so passionate about it. While I don’t feel knowledgeable enough or confident enough to talk to a group of people about lymphedema, I would love to help anyone get past the emotional aspect of this chronic disorder. I would love to give this disorder a face-

A short time ago Sandra Lee from the cooking channel told the world that she was having a bilateral mastectomy. My heart goes out to her because everyone who has cancer will have lymph nodes removed. With the removal of lymph nodes, comes the possibility of LE. I will continue to post information so that I may help others who may be thinking about this procedure. Please Pray for me. God is listening.”

Thank you- Elizabeth

We wish you all the very best on the 19th June… Rest and heal after… We look forward to hearing your progress. Take care Helen

Surgery with Dr Chang for arm Lymphoedema

imageKim shared her surgery story via a comment so once again I have created a post so everyone can see it… Sharing our stories helps others with their own journey. Thanks Kim

“My transplant story started when I saw an episode of grey’s anatomy. The has a breast cancer survivor with lymphedema that was having surgery to alleviate the symptoms.

I had stage 3a breast cancer. Right breast and a large amount of lymph-nodes removed. I went through chemo and radiation, but it was during my reconstruction that my right arm started to look like it belonged to Popeye. I went to my oncologist and after a few tests was told I had lymphedema. Months of therapy and wrapping at night, compression sleeve during the day and extreme low sodium diet. I managed for 4 years, carrying my wrappings and compressor all over the world I travel a lot as an engineer.

I started researching Dr Chang about 2 years ago. He was in Houston at that time and the work was experimental. When I checked back last May, 2014 he had moved to the university of Chicago and the were getting more approvals than ever to perform the surgery. I made the appointment and my family and I went to Chicago. I met with Dr Chang. Nice man. He explained I was a good candidate for the bypass and transfer. I was told each state is different for the coverage on this surgery and that they would submit and let me know. I got approved quickly. I scheduled for December 2014-during my winter break. James-my patient advocate was very nice, the only stress I had was discontinuing the tamoxifen for the two weeks prior to surgery. Dr. Chang indicate it makes the blood thicker and could interfere with the surgery.

We arrived the day prior to the surgery and went to the university of Chicago for pre-surgery stuff. I was able to have my arm measured in Texas to bring with me. Dr. Chang took before pics and other details. We went back to the hotel and went to bed early. Had a 5.30am surgery so we were up at 3 am. Family packed up and went by cab, you do not use cars unless you live there. We were first into pre-surgery and got a bed quickly. I went in about 7.30am and stayed way longer than expected. I went into recovery at 2pm. My recovery was supposed to be 30 minutes but I stayed in there until 9pm. I had breathing complications I wanted to hold my breath:). My family finally saw me at about 7 pm and left for the hotel. I was moved to a room and told that I was on bed rest until they determined if I needed further surgery. Therefore the catheter had to stay in and a no food order was given. I was miserable. I had not be told to take a laxative prior to surgery and I wish I would have. I had a machine hooked up to my arm to determine flow, a Doppler. It sounded like a heart beat. I also had a machine for pain medication. I did not use at all and pain was not bad. I was told my bypasses, I had 3, were working well. I also had the node transplant from my neck. Very long scar, just another badge.

I had to stay in the hospital Friday through Monday and stay in town until Wednesday. They wanted to make sure there was no complications. We flew United into Chicago. No cuts in fees.

Many doctors came in daily to listen. I had a complication, the drainage from my neck was not clear and it was determined that I could no longer eat fat until the drain was removed. I am currently low sodium, under 1000 mgs a day. They took fat away from me and I lost 12 lbs in 3 days. When my diet was changed, I got no explanation why. I had to find out on the Internet. In fact they cancelled all of my food orders and I got no dinner one evening. The nutritionist popped by but did not understand lymphedema so I sent her on her way!! I finally got to see the arm when the physical therapist stopped by. It is smaller, I am happy to report. Oddly the docs that came by never checked it. It was a bit depressing to take a wrapped arm home.

I was finally released. I had two drains to come with me. One under my right arm and one in my neck. I was able to get around but tired easily. Our Travel day was Christmas Eve. I called tsa cares the day prior to leaving. They were not great but they connected with the tsa at the Chicago airport-who was amazing. I was so concerned they would try to unwrap me or try to pat me down. They did not. They met us and escorted us through, they even walked us to our gate. I cried in relief

We got home… tubes dried up over a few days and my husband removed them, Dr. Chang showed him how. About two weeks later my husband removed my sutures. I did have a deep suture that created a bump but is going down. No driving, lifting or sex for 4 weeks. I am past 4 weeks now. Arm is still wrapped. I unwrap an hour a day for showers. I will be measured for a new sleeve in another 3 weeks. I am told the transplants could take up to 1 year to work.

My arm is looking good. I am still low sodium.

Learnings: take a laxative prior to surgery, ask about required bed rest, stay on your diet and wrapping prior to surgery.” By Kim

Thanks Kim for sharing this with us.. Could not agree more re the laxative as would have been much more comfortable post surgery!!! It is great for everyone that we share our experiences… Helen

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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.
https://lymphnodetransplant.wordpress.com/ Thanks

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.
https://lymphnodetransplant.wordpress.com/ Thanks

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.
https://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.

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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.
https://lymphnodetransplant.wordpress.com/ Thanks