August 2009…… I was only 17, when it all started.

helensamia:

Reblogging this post from a new Blog called Lymph Me… Remembering being disgnosed and not knowing what Lymphedema was… We have all been there so please support and share.. Thanks

Originally posted on LymphMe :

I can still remember the day as though it was yesterday,when I was diagnosed

It was in the year 2009 when I was involved in a school production. The theme was Moulin Rouge and my friend and I Meggan Shiels and a few other girls were a part of the dancing crew.

I got home from school,after the production, on one of the compulsory weekend outs that the school encouraged for scholars who were in boarding school.Production excitement was still buzzing and just wanted to share the buzz with my mom.

Next day, while doing house chores, I noticed that the painless swelling has begun again. And so I did what every teenage girl would do (well some girls), I told my mom about it. She took one look at feet and said ,” Nana, you’ll be fine. You must have hurt yourself during the production and didn’t notice.”

I…

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The leg is getting smaller!!

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On Friday I went for my 18 month post Lymph Node Transfer surgery check up. I am part of a research program here in Sydney. I will have follow-up for at least two years so that the doctors here can make decisions on future LNT surgery. There is a definite opinion that LNT surgery does not work if there is fibrous tissue present, as the new nodes cannot break this down, but can clear fluid and protect against infections. Therefore it is very important for the doctors to decided who is suited for LNT and who is best suited for Lymphatic Liposuction surgery. From this view point, at this time, at Macquarie Uni Hospital they are performing more Lymphatic Liposuction than LNT surgery. There is talk of maybe doing a LNT on these liposuction patients in the future, but so far this has not happened. The hope would be that the LNT would help post Liposuction and stop the limb swelling again. At this time after Lymphatic liposuction compression garments need to be worn 24/7 otherwise the arm or leg will swell. Lymphatic Liposuction is different to the liposuction for weight loss as care is taken to preserve  the existing lymphatics. http://www.ilfconference.org/fibro-lipo-lympho-aspiration-flla-a-lymph-vessel-sparing-procedure-lvsp-for-advanced-stages-of-lymphedema/

So back to my appointment and measurements which have reduced since my visit in March 2014. One of the measurements that is used is the L-Dex reading. http://international.l-dex.com/what-is-l-dex/ This compares the good and bad leg and shows how much fluid is present in the LE leg in comparison to the good leg. In March my reading was 7.1 then June 5.1 and now it is down to 4.5 which is within normal range. This is very exciting as there seems to be a gradual improvement each visit. The doctor also felt the area at the back of my lower thigh had softened a lot, with the help of three weeks compression bandaging, MLD and Compression Garments. I have also had no infections since the surgery 18 months ago so that is a huge plus for me. I am back in a pool without fear if infection which I am very happy about. If this surgery keeps my leg in the best state possible then that is a big improvement, as my fear was always that it could get worse and worse.

I have not been writing so many updates on my own progress as there has been little to say!!! It is a slow and steady reduction which takes lots of patience!!  Will I ever not wear compression?? Only time will tell… Next appointment will be March 2015, my two-year anniversary. I will be having an MRI and Ultrasound done then but I declined another Lymphasyntagraph!! No more injections between toes needed!!

If anyone else has an update to share then send this news via email to helenbrd@bigpond.net.au and I will create a post… As always sharing helps everyone… Helen

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Daring to Bare

helensamia:

Thanks to The Lymphie Life for reminding us that Lymphedema should not define us or stop us from doing anything we want to do.. . Reblogging this as a reminder to all.. Thanks

Originally posted on The Lymphie Life:

Yesterday, I posted a photo to the Lymphie Life Facebook page of my bare ankles—a very big deal, as fellow lymphies can attest to—and the supportive feedback I received was overwhelming. You all are awesome, and because of all the comments, I wanted to address a couple things:

For those who are struggling to bare their lymphie limbs: It takes time! And lots of positive self-talk to gear yourself up. Something that helps me is to start small: I begin by wearing shorts around the house, then graduate to running errands with them, and then—finally—going to an event or social gathering. Exposing our swollen limbs and compression garments feels like a big deal, but it doesn’t have to be. It just takes a little time and practice to get comfortable doing it. Most people don’t even notice, and even if they do—so what?! Our health and happiness is more important than a stranger’s thoughts or comments. There’s no…

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Dry skin brushing can strengthen immunity, spark detoxification and reverse the hands of time – NaturalNews.com

helensamia:

Always ensure if you have Lymphoedema that you have no broken skin before doing this but is a great way to stimulate the lymphatics

Originally posted on Breast Cancer Authority :

Dry skin brushing can strengthen immunity, spark detoxification and reverse the hands of time - NaturalNews.com

Dry skin brushing can strengthen immunity, spark detoxification and reverse the hands of time via NaturalNews.com .

via NaturalNews.com.

Long used in Ayurveda, dry skin brushing is a powerful — yet exceptionally economical — healing therapy. Upon first glance, the practice may not seem like much. We may question how a quick session of brushing the skin can provide such impressive results as heightened immunity, reduction of cellulite and overall detoxification. As unlikely as it may seen, dry skin brushing delivers all of the above and more.

With this straightforward technique, you are on your way to glowing health, smooth skin and a happy lymphatic system — this last perk is especially important to keep immunity buzzing and your constitution robust. But how does it work?

When we brush the skin in an upward motion, not only are we removing surface toxins and dead skin…

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How to protect yourself after lymph node removal during surgery

Nearly thirteen years ago I had surgery for Uterine Cancer, included the removal of 22 lymph nodes from the groin area. Follow up treatment was a month of daily radiation which damaged more of the lymphatic vessels. On leaving hospital I was given a bookmark which told me how to protect myself from Lymphoedema. It was given as a bit of a sideline and not much emphasis given to the importance of protecting my legs, or even what Lymphoedema actually was!!! The other day I was having a bit of a tidy and found this bookmark. Oh how I wish had read it more and realised how important it was to keep my limbs safe!! I think I had managed to break all the rules within the first few weeks including flying with no compression garment and taking a sauna!! No wonder my Lymphoedema started quite soon after treatment. I wish someone had told me how very important that bookmark was, how lymphoedema is a lifelong problem that you have 24/7….

Please share this with others so that they may not have to deal with this problem, or at least have some time before it starts, or are able to protect their limb from getting worse. Any time lymph nodes are removed during surgery there is a risk of Lymphoedema. Below is the bookmark I was given that seemed so unimportant, when in fact it was the most important piece of information I was leaving the hospital with!!

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This is a previous post I wrote with a link to the American Cancer society on Protecting yourself from the risk of lymphoedema post cancer surgery. I have Lymphoedema in my left leg but I must also remember that my right leg is at risk so I must always be very vigilant in caring for both of my legs.

http://lymphnodetransplant.wordpress.com/2013/07/23/precautions-to-lower-the-risk-of-lymphedema-after-cancer-treatment/

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

An update from Jeanie.. LNT with Dr Chang

imageThis is a link to Jeanie’s post on her surgery with Dr Chang which was in May this year.
https://lymphnodetransplant.wordpress.com/2014/05/22/a-personal-account-of-surgery-with-dr-chang/

Via a comment on this blog Jeanie has written about her latest news, but I thought I would create a post out of it so you could all read it. Love to hear of people’s progress post surgery as this helps others. It is also a way of finding out about various doctors for surgery or therapy.

“Hi Helen! It has been 4 1/2 months since my surgery. I am feeling great and have started exercising and building my strength and stamina back. My initial impressions are favorable about having this surgery – for any people considering whether it is worth it or not. I recently met with Dr. Hutchinson, a lymphedema specialist in Minneapolis. I had never heard of her, and here she was, geographically close to me, considering I have travelled to San Francisco, Chicago, and Santa Monica, to find the most Informed researchers in lymphedema! She is helping me with the next step of physical therapy and will be my ‘go-to’ person for all further decisions related to additional surgeries, etc. (she has been – and maybe still is – on the Board for the national lymphedema network.) Her personal opinion is that Dr. Granzow, in Santa Monica has a more preferred approach to the surgeries involved with reducing and managing lymphedema. I was a little disappointed to hear that as I had obviously chosen to go with the LNT and bypass approach first, …vs the lymphatic liposuction direction first, followed by the LNT. But, as she said, no harm done, and we will now continue to manage the outcome of the surgery to help get the best results. The best news is that my leg is not getting worse! I can see small improvements in my lower leg, and with exercise and a healthy diet, I do see more positive results in my entire leg. Ironically, if I have too any extra sugar or salt, my leg seems to instantly retain fluids …. 8] ….seriously! it feels instantaneous. S, again the good news, is that my keg is not getting worse. There are small improvements…and I remain hopeful for better results in the future! So excited to see the news on lymfactin….I would so love to be a part of that study! Thank you again for all you do to keep the information flowing to all of us out here who are pioneers in the world of lymphedema surgeries! Many hugs!”

Thanks Jeanie for this latest update and glad you are going well. This is a slow process and we do need lots of patience to see real results. It really helps to have the support of others who are going through the same process as it is sometimes difficult to find the information that you need. If anyone would like to share their  experience of living with Lymphedema please leave a comment and I will get in touch with you… By sharing we help each other.. Helen

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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

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Lymphoedema Awareness Week

helensamia:

Support the awareness campaign in the UK… Wear your odd socks and donate.. Thanks Lauren for this… As always an inspiration 😃😃

Originally posted on Lauren: That's Swell:

Hey Beautifuls!

This week in the UK has been Lymphoedema Awareness Week. Lymphoedema gets less press than it deserves. It’s also more common than people realise. There are at least 240,000 sufferers in the UK and around 6 million in the USA. The condition has been ignored by medical professionals for so long. NOW IS THE TIME FOR CHANGE! We will be ignored no longer.

The Lymphoedema Support Network (LSN) are taking a stand! They have started a social media campaign- ‘Sock it to Lymphoedema’. The aim is to donate as much to charity as possible through wearing odd socks for a day and nominating someone else to do the same.

Many of us have already taken part. SO SHOULD YOU! Follow these 3 steps:

1.Take a picture of yourself wearing odd socks, upload it to social media

2. Text 70070  with the code LSNS14 followed by an amount of…

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Invisible illness … Lymphedema

This week has been Invisible Illness week. I thought that many with Lymphedema would fall into this category. Even if people notice that one limb is larger than another they have no idea the impact Lymphedema has on everyday life. Many of us put on long skirts,loose trousers or long sleeves and a big smile on our faces, hiding the effort it took to look this good!! There are also many with Lymphedema who experience pain and when cellulitis hits this can impact our plans and social engagements.. Those with Invisible Illnesses often do not get the support or understanding they need. We all need to speak out and share our stories to bring understanding to this little known illness.. Lets make lymphedema less invisible. #Lymphedema

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The SCAR Project… Breast Cancer is not Pink!

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To day I went to the SCAR Project exhibition in Sydney and met the photographer David Jay.  I was able to chat with him about the exhibition.

http://www.nbcf.org.au/Support-Us/Events/The-SCAR-Project.aspx?utm_source=google&utm_medium=ppc&utm_campaign=scar

I have seen the pictures online of the scars carried by women after Breast Cancer treatment, but to see them full size and read each story will soon tell you that Breast cancer is NOT PINK!! The women are aged 17-35 years old and some have died since taking part in this project. In the past year I have learnt a great deal about breast cancer from reading blogs, hearing personal stories of treatment and on going metastatic Breast Cancer. If you ever have the chance to see this exhibition I urge you to go. You will leave with a better understanding of why Pink makes so many upset and gives the wrong impression of Breast Cancer.

http://thescarprojectblog.com

http://www.thescarproject.org/david-jay/

Link to images
http://www.thescarproject.org/gallery/

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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

It’s Invisible Illness Awareness Week!

helensamia:

Thanks for this i am renlogging as many live with an invisible illness Including Lymphedema.

Originally posted on Heart Sisters:

Dearest heart sisters,

If you live with an invisible illness (as almost all heart patients do), this is your week, no matter what your diagnosis.  I encourage you to visit the Invisible Illness Week site, all about those of us living with serious health conditions that nobody else can see. It’s an annual educational campaign about how often illness is utterly invisible to others, how to be sensitive to those living with these challenges, and how to learn from their unique experiences.

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