Cindy’s update on the funding issues for those with Lymphoedema

imageAlways great to hear from Cindy and how she is progressing, she is also great at responding to people’s questions and staying in touch with everyone. This is a link to one of Cindy’s previous post

In her latest update she despairs of the  system that does not allow her to claim for the stockings she needs. Insurance for the treatment, care, support and garments seems to be lacking world-wide for Lymphedema. How has it been for all of you with cover for your lymphedema? In Australia without private cover there is little help from Medicare. Even with private cover there is a gap in cost and what the patient pays.

Cindy says …. “I am happy to report my leg has remained small, feels soft, has more flexibility and looks good. Though, I still wear compression during the day. I must remind myself that my surgery didn’t cure my lymphedema, it improved the appearance and overall health of my leg. I have a Christmas party to attend and will go without compression for a few hours. I will post an update after the party. Even if my leg swells a little, I am confident elevation with bring it back down. Nonetheless, it is a little daunting to think about not wearing compression!

I am replacing my garments every 3 months and am paying out-of-pocket. I have insurance that will cover them, but am unable to find a local medical supply company to order them. It was just brought to my attention, that the company I deal with has an exclusive agreement with a manufacturer, they will only sell their products. So, I am on my own when it comes to buying my Elvarex. I cannot put into words how angry I am over this. I find a garment that works for me and even though my insurance will cover it, there is no 3rd party to order it for me. Guess there is politics involved when it comes to lymphedema too. Everything about this wrong! There are few local services available for treatment of lymphedema, the ones that are here either don’t take certain insurances or choose to work exclusively with one company. I do not understand why everyone cannot work together when it comes to treating and managing lymphedema. Bless all of those involved in surgical, pharmaceutical and stem cell research and/or treatments for lymphedema. Bless all those PTs, OTs and others that help us manage our lymphedema. Shame on all of you out there (insurance companies, DME supply companies, some doctors, etc) who block our access to the treatment we need.

I will update after my evening out with no compression! :)”

Thanks Cindy for your update, if anyone has questions for Cindy please add them as a comment…

In America the Lymphedema treatment Act  is fighting for better cover for lymphedema ..

In Australia we have Lymphoedema action Alliance.

In England the Lymphoedema Support Network 


Please add in the comments any other groups who are fighting for recognition for those with Lymphoedema. We deserve better coverage from our government health funds. This coverage should be for those who have Secondary and Primary Lymphoedema world-wide.. We need far better funding than we have at this time …


Copyright © 2013-2015 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.

Kim’s surgery for Primary Lymphedema and Chylothorax

imageKim made contact via this blog a few weeks ago, she was looking for some help from myself and others, she wrote
“I developed primary lymphedema in my left leg and abdomen a year and a half ago. I also developed a chylothorax and have fluid drained twice from the lining of my lung. A doctor at UPenn Hospital Center is working with me to do a lymphscintigrapy. I have read that lymphatic transplants don’t work well for people with my history (Late onset Primary LE). I am 60 and in very good health otherwise. This has come out of the blue.”

We were able to answer some of her questions about our own experiences with surgery, testing, various doctors and hospitals, plus expectations pre and post surgery. Kim has now reached the next stage in her treatment to repair the Chylothorax and help the primary Lymphedema. Unlike secondary Lymphedema, caused by cancer treatment, we do not hear so much about Primary Lymphedema. Often people have difficulty finding a diagnosis or a doctor who understands Lymphedema and its impact on the body. I am  very pleased that Kim is sharing her experince with us but sorry that this should happen to her. Today Kim wrote..

“It’s only because of the encouragement from people on this site that I have chased down the people and institutions that might be able to help me. I am 60. My lymphatics are apparently just failing, Primary LE Tarda. Since this began in Spring 2014 with swelling in my leg, it progressed quickly over the summer. Bandaging, MLD, and a flexitouch pump are the main lines of therapy. But now I have abdominal ascites, and have had my chest drained four times since June. They take out a little over two liters each time and of course always test it. The lymphangography I had last month did not produce many good images, because of fluid in my chest. My thoracic duct up near my collar bone was shown to be normally shaped but did not have a strong clear image indicating that it is probably not conducting fluid well. I went home and had my chest drained again then returned this past Monday for a lymphscintigraphy. They used diabetic needles and it was not as dreadful as I had been anticipating. Also 8 mgs of valium orally ahead of time was a good idea!

Those images showed my left (worst) leg has one main duct that is carrying fluid, although not well, it stops at the knee, then nothing above the knee. The right leg which has begun to swell this summer, has 4 good lymph channels that look like a 4 lane highway except at mid calf, where they all look torturously varicosed, then straightens out and the lymph channels run well up through my abdomen.

So the plan is three fold. Insert a a shunt(tube) from my abdomen through my chest and attach to the subclavian vein. It has a small pump that I will use to activate the draining into the vein to remove fluid. Its very much like a Denver Shunt that is used for people with kidney and or liver failure. Soooo thankful this is not the problem I face

Second part is to have a thoracic surgeon perform a pleurodesis on my left lung. They use surgical talc to create a scarred area that causes the lung to adhere to the chest wall, eliminating the space where the chyle likes to hid in my chest. They have done this procedure for years for people with pleural efusions caused by lung or ovarian cancers or lymphomas. Once again I have to say….SOOOO thankful this is not the problem I have.

And third, here is where I am feeling some anxiety and maybe a little premature disappointment. I will meet with doctor at UPENN who does lymphovenous bypass microsurgery. I hope there is enough patency in the one good lymph channel that he will be ale to create a working anastomosis or two or three… Because my lymphatic failure is diffused I am not a true candidate for LNT, so the bypass is my best chance.”

Thanks so much Kim for sharing and we wish you well while you have this surgery. I hope you will let us know of your progress in the hope of helping others with similar problems.


Kim at her son’s graduation

Copyright © 2013-2015 by Helensamia. All rights Reserved.

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A Catch up


Just a quick catch up to show you my legs early in the morning … The left leg had a lymph node transfer 2 years and 8 months ago from neck to knee.. As you see the calf ankle and foot are looking good in the morning and yesterday I did not wear a compression stocking. However due to my “Life in a Wheelchair” by the end of the day my ankles and feet swell because of all the sitting!! My Lymphoedema leg is worse but fortunatly they do go down over night. I sometimes feel quite sad that having gone through everything to try to improve my lymphoedema that another health problem, lumbar plexopathy,  comes along to make things difficult. I am quite sure that had I not been in a wheelchair this surgery would have been a great success, in fact I do believe that without it my leg would be far far worse sitting all day. One thing I looked forward to after my LNT was to wear some fancy shoes but other than first thing in the morning my feet do not look good in sandles or little danty shoes!! How ever I found these little ankle boots that buckle up from top to bottom and stop the swelling.image


This is also an adaptation for my legs being paralysed. During the winter I love to wear boots but I had not realized that my toes were curled under, as I put them on, causing a pressure sore. These little ankle boots ensure that does not happen as they open all the way to the bottom and I can make sure my toes are straight. So if nothing else I am learning to adapt and find ways that help my Lymphoedema even though I am in a wheelchair. I also elevate as often as possible, move my feet and ankles by rotating them with my hands, also bending my knees and I never forget to do some deep breathing, anything that helps!!

Today I got a call from the physiotherapy department at the local hospital for assessment. I hope that they will not only give me exercises to strengthen my upper body but also those that help the lymphatics. Today will also be an indoors day, as it is 38C, as we all know that does not help lymphedema.

How are you all progressing? Do you have a “catch up” for every one? Please add as a comment or email me so I can create a post for everyone to share

Happy Thanksgiving to all of you celebrating..image

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Thank you so much! :)


Thank you, thank you so much for all the support you have given me in the creation of my New Blog, it has been just amazing with over 500 views in just one day. I have also had many, many beautiful messages of support and encouragment which have really lifted me. When I started to blog I had no idea how it would go, if there would be any interest but it has spread across the world and is now read in 127 countries, truly amazing. There have been nearing 100,000 views and 272 posts. Many if you have created posts for me and I hope you continue to do so. Just email me at to share your story. I would still love to hear from someone who has had the lymphatic lyposuction, SAPL proceedure.

I would also like to ask everyone no matter where you live to encourage your goverment to give support to Lymohoedema. It has been far to long that Lymphoedema has been ignored by goverment health programs. Everyone should have access to the treatment that they need and the garments that they need to wear. The burden should not fall to the patient, in which case many do not get the care that they need and the Lymphoedema becomes worse and worse. Please give Lymphoedema and voice, a loud voice. Lets hope that more high profile people like #Kathy Bates start to speak out instead of hiding their problem. We have become a “cyber community” of fellow lymphies who are there to connect and support each other, we are no longer alone or silent.


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My New Blog

imageI am sure you are wondering when I was going to write again!!! I am sorry I have been rather slow at creating new posts. A few weeks ago I wrote “Sometimes Life does not go as you Expect,” which explained what had been happening in my life over the last six months. These events have really turned my life upside down but lately I have started to feel more settled and have felt the need to write again. Writing for me is a form of mindfulness that helps to keep my head a little quiet!! The last few days I have been thinking of how to approach my blogging and have decided to create another blog that embraces my new “Life in a Wheelchair”

Do not worry though as I will still continue this blog, “My Lymph Node Transplant,” as I believe it has become a wonderful resource for all those with Lymphedema, especially those who are considering surgery or who have had surgery for their Lymphedema. I love all the interaction that happens between people in the comments and the emails that I get from people. Please still continue to send me your stories so that I may post them, as by sharing our experiences we help each other. We have truly become an online community.

Just to keep you up to date with my own LNT which was now two and a half years ago. My leg is going well even though not an ideal situation in the wheelchair all day! My leg has good shape, knee and ankle bones show. I wear no compression at night and not everyday. I can go for a while without and then I wear it for a few days and it goes back to normal. Me leg is very soft, which is important, as that means fluid can be moved where fibrous tissue cannot, also still no infection which for me is a huge plus. My ankles do swell by the end of the day, due to sitting in my wheelchair, but this is Oedema rather than Lymphoedema, this swelling goes down each night. So I am happy with the results, not a cure but much better control and response to compression, MLD and elevation. This surgery is not suited to everyone but there are other options available now, lymphatic Liposuction and Lymphatic bypass. There continues to be improvement all the time as the surgeons become more experienced and document their work.

If you would like to follow my new blog then this is the link There have been a few teething problems with setting up the blog and some people have had difficulty following, I hope these are all resolved now, you do need to follow the new blog separately even though you are following this blog. I look forward to sharing my new experiences with you. Wishing you all well, Helen xx

Does this condition make me beautiful or does it make me imperfect?


A must read … Thank you for sharing

Originally posted on Flourishing With Lymphedema:

A short narrative I wrote a few weeks ago when I first started to think about making a blog:

I’m home for the weekend and my mom and I decide to go to the grocery store. What would usually be a normal experience feels anything but. In my new Tevas you can clearly see my larger left foot which is covered in a beige compression garment. It’s never been my favorite thing to look at but right now I feel content.

My mom and I are going to what is basically the only grocery store in my small hometown, which is often known as the place you will see everyone you know. This is my first time openly wearing my compression garment in such a familiar place. Typically, I’d avoid letting my swollen left leg be shown at any cost. I’d rather not get the questions about “What happened?” or…

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Some questions to help Lisa pre LNT

imageLisa sent me an email prior to her LNT…. As you can see she would like to hear how people are progressing, plus any advice for before and after surgery. What we all need to remember is that everyone is different having this surgery, the condition and size of the leg or arm, plus general health. This makes it hard to compare progress, as some will respond more than others plus some quicker than others. Always remember to ask lots of questions and comply with pre and post surgery protocols for the best results. Also each surgeon is different in what his protocols are, some are very strict and some not so much. The biggest thing to remember is you need patience, this is not an instant fix and it can take up to a year to even see small changes.

If you have advice for Lisa please use the comments to pass on your support to her. We would all love to hear how some of you are going who had the surgery in the last two years. How is everyone progressing? What is the best advice you would give someone pre surgery and post surgery?

Look forward to hearing from everyone… Helen

“My name is Lisa and I live in Dallas, TX. I am having the lymph node transfer at the end of the month at MD Anderson with Dr. Alexander Nguyen.

How are you doing since your surgery? Are you still feeling good about your surgery? Is there anything you wish you would have done before or after the surgery that you didn’t?

Just a little background. I had cervical cancer in 2002. Had a hysterectomy but no radiation or chemo thank goodness. I developed lymphedema though in my left leg in 2008.

In 2013, I had the lymphatic venous bypass surgery at MD Anderson with Dr. Roman Skoracki and was pleased with the results but wanted more! Dr. Skoracki has since left MD Anderson to head up the lymphedema program at the Ohio State University hospital. I loved Dr. Skoracki and highly recommend him to anyone in that area…in case want to put him in your blog. I was originally scheduled with Dr. Chang but he moved to Chicago right before my surgery.

Now I’m with Dr. Nguyen and I really like him as well and am scheduled for the transfer on 9/29. At my last check up in April of this year, I told Dr. N I wanted to try more of the bypass surgery. He told me I would get the best results with the lymph node transfer. Actually, Dr. Chang, Dr. Skoracki and Dr. Nguyen have all told me I would get the best results with the transfer but I was to chicken the first time :) So I have decided to go for it but I’m nervous, scared and excited and hopeful all at the same time.

Dr. Nguyen is taking the lymph node from my stomach and either transplanting at the groin or calf, depending on where I need it. I will have a drain for several weeks. Did you have any drains? If so, anything I need to prepare for with those?

I would love to hear any suggestions and recommendations about preparing for the surgery–I’m following the blog as well.” Lisa


Copyright © 2013-2015 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. Thanks

Cindy’s update re measurements…

imageThis is an update from Cindy to make it clear how much work is needed both pre and post surgery to support the nodes while they grow. The measurements start from two years prior to surgery.

“I don’t want there to be any confusion over my leg volume and for anyone to think the size of my leg changed overnight, it didn’t! For eleven months before surgery I was diligent in getting my leg ready, compression 24/7, using my pump, MLD 3 times a week and I lost approximately 10 pounds in weight. In January 2014, I weighed 123-127(pounds), today I weigh around 115-117 (I’m 5’4″).

We do not have LDex readings, everything is done by measurements.
In June 2012, my leg volume was 9347, the volume of oedema was 674.
In January 2014, leg volume was 9766, volume of oedema was 1056.
On December 9, 2014 leg volume was 7801, volume of oedema was 220.
On August 4, 2015 leg volume was 7702, volume of oedema was 34. I’m reading all of this off a spreadsheet used by the PT in California.

My surgery date was 11th December 2014. As you can see from my numbers, I devoted all my time and energy to getting my leg as small as possible prior to having the procedure done. There is no way I would have been able to devote that much time to my leg on a permanent basis. Since having the surgery, I no longer need to do all of that. Though, I do wear compression during the day, MLD once or twice a week. Some weeks I don’t get any MLD treatments (either my therapist is away or I’m away)..It’s so important that people don’t look at this procedure as a miracle cure. Anyone who is thinking of having the surgery done, should know there is a lot of work to be done on their part, it’s not just the surgeon. Compliance is mandatory! ….. over the next few years I hope to see more improvement as the nodes grow. Slow and steady wins the race..” Cindy

Lymphadema / lymphahell


I am reblogging this post to show just how difficult it is to look after a limb with lymphoedema… It takes a great deal of time and effort to keep it under control… Thanks for sharing with us

Originally posted on Mom (with cancer) blog: It's Because I Said So!:

This is my impression of Dr. Zoidberg. It is my first bandaging for Stage II lymphadema. This is my impression of Dr. Zoidberg. It is my first bandaging for Stage II lymphadema.

Today was a typical day in my new normal: sleeping from 1 a.m. to 9 a.m. with many wakings due to lonely, mewing cat Benny, bad dreams and new screeching leg cramps; drifting in and out of sleep from 9 a.m. to noon; up until 5, then sleep until 9:30 when Tessa woke me to a fully prepared meal (made by her and Luka). That was a bonus and welcome treat. Now I will prepare for the new fun in my daily routine—bandaging my lymphadema arm.

The bandaged arm. Note my normal hand and how you can actually see bones there. The bandaged arm. Note my normal hand and how you can actually see bones there.

I had been managing the lymphadema in my right hand, arm, breast and trunk very well since it was diagnosed in November last year. Twice daily self MLD (manual lymphatic drainage) massage, meticulous…

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