Lymphedema and How It Has Changed My Life

Sharing this heart felt account of living with Lymphedema … It is so important for people to understand the impact it has on our lives … Thanks

My Little Bs Have the Big C

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It’s the side effect that’s barely mentioned.  A whisper in passing by the surgeon and radiation oncologist.  Spoken nonchalantly as if not talking about it means it won’t happen.  But many of us know that this is not the case.

Today it was announced that the U.S. Senate unanimously voted that March 6th will be World Lymphedema Day.  This landmark decision is the first step in bringing awareness to this awful condition.  I wanted to use this opportunity to not only tell you all about lymphedema but how it has impacted my life.

Lymphedema can happen to anyone who has lymph nodes removed during their mastectomy, a sentinel lymph node biopsy or radiation to the area.  I’m not even talking about those who are born with or develop the condition as part of a hereditary trait or those who get it as a result of another bodily trauma.

Lymphedema is…

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The “ayes” have it: US Senate passes World Lymphedema Day bill in unanimous vote

Best news ever….sharing this from Lymphie Life… How exciting for all those with Lymphedema … Our voice is being heard

The Lymphie Life

By USCapitol (U.S. Capitol Building) [Public domain], via Wikimedia Commons By USCapitol (U.S. Capitol Building) [Public domain], via Wikimedia Commons Amazing, wonderful, exciting, encouraging, super-great news, everybody: last night, at 6PM EST, the US Senate became the first national governing body to establish March 6th as World Lymphedema Day!

From an update by the Lymphatic Education and Research Network (LE&RN):

The US Senate has become the first national governing body to establish March 6 as World Lymphedema Day. The bill was written and presented by LE&RN, with Sen. Schumer (NY) and Sen. Grassley (IA) co-sponsoring. Sen. Mitch McConnell (KY) presented the bill in session, at which Sen. Dan Sullivan (AK) presided and where it passed unanimously.

This is a huge victory for the lymphedema community! It elevates us to the national stage, increasing our visibility and our need for more research, better insurance coverage, and accessible treatment for all those living with lymphedema. There is still a lot of work to be…

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Shamed by Facebook: How One Woman’s “Undesirable” Photo Turned Outrage into Empowerment

I am reblogging this so that people understand what it means to have primary lymphedema … Helping to build awareness… Thanks Alexa for this article after FB asked Karen to remove her picture …

The Lymphie Life

Social media holds the potential to connect and empower people, but it can just as easily tear down and dehumanize them. For one Canadian woman on Facebook earlier this week, it did both.

The photo Facebook deemed "undesirable." (Photo courtesy of CTV News.) The photo Facebook deemed “undesirable.” (Photo courtesy of CTV News.)

Karen Bingham has lived with primary lymphedema for most of her life. Despite her father and six of her siblings also having lymphedema, however, she has often felt isolated and misunderstood by the rest of the world.

Frustrated with the lack of awareness surrounding her condition, Bingham decided to host a symposium to help educate her community on lymphedema as well as create an opportunity for people to connect with one another and learn about their local treatment options.

To help promote the event, Bingham posted a photo—a close-up of her swollen bare legs—on Facebook. Not long after posting it, however, she was notified that her photo had been reported for containing…

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Put this date in your Diary and sign the petition

I am reblogging this to ensure that everyone has signed the petition at the end.. There are millions who have Lymphedema but only just over 3000 have signed this petion… If you want to make a differnce please sign and share with your friends and on social media… It is very important that we show the goverments of the world that we need research, money for treatment and support. Now is your chance to be heard by signing this petition… SIGN… SHARE

My Lymph Node Transplant

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Put this date in your diary… March 6th 2016 will be World Lymphedema Day… The whole of March is Lymphedema awareness month, there is a push to have Lymphedema recognised by the various government health funds. In March there is the opportunity to give Lymphedema a voice. We need to speak out and tell our stories so that people understand what it is like to live with Lymphedema 24/7, if we do not speak out people will not understand how difficult it is to live with every day of your life. Lymphedema can be both secondary and primary, every person is different in how it affects them. Primary is caused by a fault in the lymphatic system that you are born with, sometimes it manifests at birth and in others it may start during puberty or even later in life. Secondary is caused by the removal of Lymph nodes during…

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Sometimes Lymphedema just feels awful!!

As we approach world Lymphedema day on March 6th I am sharing stories of what it is really like to have Lymphedema … This was posted a while ago but I felt it would be good to share again …. If you would like to share your story please email me at helenbrd@bigpond.net.au Just write your story as an email and I will create a post out of it … Thanks Helen

My Lymph Node Transplant

This article was sent to me by Jennifer, she wanted to be able to share her anger and grief at the way Lymphoedema has changed her life. To let people know that we are just men and women trying to deal with a very difficult on going situation. That we are human in our sorrow and anger at what has happened after cancer treatment or because we are born with impaired lymphatics…. We were not prepared nor did we have any insight into what it meant to have Lymphoedema only fellow Lymphies understand that. We can stand like soldiers and be strong and positive but there are times that this is just not possible… There are days that we feel like Jennifer when she wrote this.. Thank you Jennifer for being so honest, I can relate to all you say and I am sure others will too.

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Put this date in your Diary and sign the petition

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Put this date in your diary… March 6th 2016 will be World Lymphedema Day… The whole of March is Lymphedema awareness month, there is a push to have Lymphedema recognised by the various government health funds. In March there is the opportunity to give Lymphedema a voice. We need to speak out and tell our stories so that people understand what it is like to live with Lymphedema 24/7, if we do not speak out people will not understand how difficult it is to live with every day of your life. Lymphedema can be both secondary and primary, every person is different in how it affects them. Primary is caused by a fault in the lymphatic system that you are born with, sometimes it manifests at birth and in others it may start during puberty or even later in life. Secondary is caused by the removal of Lymph nodes during surgery, radiation or trauma to an area of the body. Lymphedema can affect one or two limbs or the whole body, there is a very wide range of how serious lymphedema is for each person. Millions of people have Lymphedema world-wide and many are hospitalized due to infections and other health issues caused by the Lymphedema.

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What can you do in March to add your voice? If you stay silent and hide it will do nothing and nothing will change. Money is needed for research into understanding the lymphatic system. Maybe you could have a fund-raiser and donate the money to your local Lymphedema charity. Can you tell your story in a local paper? Can you share information on Facebook, twitter, Instagram or any social media outlet? Look out for what is happening in your country or local area and get involved.

I am happy to share your stories in the lead up to March. Email me on helenbrd@bigpond.net.au and send me your story of what it is like to have Lymphedema.

Do not stay silent. You do not have to use your own name if you would like to remain private but still tell your story.

Lets make this March and March 6th a very special time for those with Lymphedema…

Lets build awareness and understanding lets raise the much needed funds for research.

Lets make governments hear us and give better coverage via health funds.

Lets make a difference..

PLEASE SIGN THIS PETITION SHARE SHARE SHARE https://www.change.org/p/white-house-u-s-senate-u-s-house-of-representatives-world-health-organization-united-nations-global-leaders-declare-march-6th-world-lymphedema-day?recruiter=30211120&utm_source=share_petition&utm_medium=copylink

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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

2015 in review

Thank you so much to everyone who has supported my blog this year. Not as many posts as previous years but 2015 has brought many changes to my life. I wish you all a very Happy New year and may 2016 be the best ever…. may your dreams come true… Helen xxxx

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 31,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 11 sold-out performances for that many people to see it.

Click here to see the complete report.

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 https://en.m.wikipedia.org/wiki/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.

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Kim at her son’s graduation

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

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

A must read … Thank you for sharing

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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