Thank you so much! :)

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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 helenbrd@bigpond.net.au 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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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

Lymph Node Transfer… USA

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Sunshine.. Photo Helensamia

One of the reasons that I started this blog was due to the lack of information I could find from patients who had Lymph Node Transplants/ Transfers to the leg. There also seemed to be a lack of post surgical info, what I found seemed to read as if the patient had the surgery, the limb was all good straight away and they went home!!! (All references seemed to be for arms only too). I first thought to keep a diary of my progress, I then thought about a blog so others could share my journey, in the hope it would help another patient having this surgery or thinking about having it.

I launched my blog at the end of February 2013, prior to my surgery in March 2013, almost immediately a lady wrote a comment that she was due to have surgery in Philadelphia USA, she had found my blog while searching the internet for information. Like me she had Lymphoedema in her left leg due to the treatment of Uterine Cancer. She wrote “I have left leg Lymphoedema following the removal of 15 lymph nodes during a radical Hysterectomy for Uterine Cancer. I am interested to follow your journey since I am really worried about this surgery but I am also sick to death of the lymphedema, the pump, the compression hose, the deformity and the depression!” I will call this lady Sue for ease of writing and to protect her identity, though she has given me permission to share her story in the hope of helping other

Sue, as I did, first say the Lymph node transplant surgery on the television, a lady had lymph nodes removed from the groin and placed in the arm pit to relieve the Lymphoedema after breast cancer surgery. The program said she was progressing well and the surgery had been performed at the University of Pennsylvania Hospital. Sue contacted the hospital and made an appointment to see the micro surgeon who had performed the operation. After seeing the surgeon her operation was arranged for 12th April, she was to have lymph nodes removed form below the arm pit in the thorax and placed into her groin.

“A Vascularized Lymph Node Tranfer (VLNTx) is microsurgical procedure where normal lymph nodes and their associated adipose tissue is transferred to a region of the body that suffers from lymphedema as a means to i.) decrease limb size; ii.) alleviate subjective symptoms of “heaviness”, “achiness” and early fatigue; iii.) potentially reduce daily compression requirements; and iv.) slow progression of the disease.

VLNTx were initially introduced in Paris by Dr. Corinne Becker and her associated group of surgeons in 1991. Since that time, Dr. Becker reportedly has performed more than 1500 of these transfers in France, Brazil, Korea and Egypt based on the premise of lymphangiogensis; namely, “like reconstructs like”. This “French School” of lymph node transfer suggests that normal lymph nodes and perinodal fat containing essential stem cells, adipocytes, and macrophages transplanted on their native blood supply, effect a normal repair process in the direct region of prior injury (i.e. the axilla after axillary lymph node dissection and/or irradiation). Key aspects of this approach include thoughtful patient selection, a no-touch, atraumatic harvesting technique, aggressive adhesionolysis in the area of injury and meticulous microsurgical skill securing effective revascularization of the transferred flap. Dr. Becker and her associates have published limited numbers of reports outlining this technique with a focus on the upper extremity, primarily at the level of the axilla and fewer reports at the antecubital fossa.” (Ann Surg 243: 313, 2006; Breast 17: 472, 2008).

The lymphatic system, lymph vessels and lymph ...

The lymphatic system, lymph vessels and lymph nodes. Español: El sistema linfático; vasos linfáticos y nodulos o ganglios linfáticos. Русский: Лимфасистема с лимфаканалами и узлами. Polski: Układ limfatyczny (chłonny) – rozmieszczenie głównych węzłów i naczyń chlonnych. (Photo credit: Wikipedia)

Sue and I, since her initial contact, have remained in touch  so we are able to share our experience and progress. This has been a help to both of us as we understand why we would have such new surgery…..to be the pioneers of the leg surgery!! For Sue living in the USA there was to be a huge shock, a few days before her surgery she had a phone call from the surgeons office, her private health fund had refused to pay for the operation and she needed to pay $10,000 up front for the surgery to go ahead. In the USA the Lymph node transfer surgery is seen as “investigational” and not covered by health funds. Those of you in the USA who have Lymphoedema or the potential to have Lymphoedema should take a look at this website in the hope of making changes re the health coverage for Lymphoedema care.

Please click on the link below it will take you to the Lymphedema treatment Act website for more information….

<>Welcome to the Lymphedema Treatment Act website.

The Lymphedema Diagnosis and Treatment Cost Saving Act will improve coverage for the diagnosis and treatment of lymphedema from any cause. Untreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death. Thus, prognosis for the patient is far worse and treatment more costly when the disease is not identified and treated in the earlier stages.

WE NEED YOUR HELP! We have no paid lobbyists; our cause is entirely grassroots and patient driven. Please explore the site to learn more, then complete as many of the simple steps under the “How You Can Help” menu as you can. The single most important thing you can do is take just a couple of minutes to
Contact your members of Congress using our simple submission form.

PLEASE NOTE THAT BILLS DO NOT CARRY OVER FROM ONE CONGRESS TO THE NEXT. THE LYMPHEDEMA TREATMENT ACT IS CURRENTLY BEING PREPARED FOR REINTRODUCTION IN THE 113th CONGRESS. THE LINK IN THE “Current Status” BOX TO YOUR LEFT WILL TAKE YOU TO THE BILL FROM THE 112th CONGRESS. THE LINK WILL BE UPDATED AS SOON AS THE BILL IS REINTRODUCED.

Although this legislation relates specifically to a change in Medicare law, it would almost certainly result in all private insurance policies following suit. Specific goals of the Act are:

Comprehensive treatment coverage, according to current medical treatment standards,
for individuals with and at risk for lymphedema;
The ability to add new treatment modalities to coverage as they become available and are approved;
Preoperative measurements for cancer patients to aid in early detection and diagnosis;
To provide for lymphedema patient education in the procedures for self-treatment so as to transfer the treatment from the clinical to the home setting;
To enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (compression garments, compression bandages, other compression devices, pneumatic compression pumps, etc);
Reduction in total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition.

Sue made the decision to go ahead and pay for her surgery, she felt she had come this far and could now not turn back. Five days after her surgery I had the much awaited email to hear how she was going. Sue was back at home after a two day stay in hospital. She has a community nurse coming everyday to change the dressings and to check her drains. She has an incision on her left side about three inches down from the arm pit, this is where the nodes were harvested, the transfer site is in the top of her thigh on the left leg, rather than the groin. She has a drain in each of these sites and hopefully by now these have been removed, Sue says she has minimal pain. She has been told no baths, swimming or gym  etc for 6to 8 weeks, walking is very slow but she feels ok and unlike me she has no infection which is great. I intend sharing updates from Sue along with my own as every surgery is different with different progress and outcomes. If anyone has any questions please use the comments to make contact and I will answer as best I can. Thank you so much “Sue” for allowing me to share your story as well.

If  you are wondering about the spelling of Lymphoedema / Lymphedema the first is our spelling in Australia and the second is the American spelling… Both are acceptable!!!

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Fire.. Photo Helensamia

Lymph node Transfers and Transplants are the same surgery.

 

“It’s better than being dead!”

Eleven years ago, just before my 50th birthday, I was diagnosed with Cancer of the uterus. To say I was shocked is an understatement as I had not been particularly ill, just a few aches and pains! This is not a cancer blog so I will skip over those details and concentrate on what is relevant to my Lymphoedema. I had not heard of lymphoedema at this stage but I do remember asking the doctor about having the lymph nodes removed, as part of my surgery. I felt they could be something I still needed! His reply was very much to the point…. “Its better than being dead”. During Surgery, for a radical hysterectomy, 22 lymph nodes were removed from my groin area. This was followed up with radiation to the pelvis which would have caused more damage to the remaining lymphatic system.

On leaving hospital I was given a bookmark which told me how to avoid getting Lymphoedema as my lymphatic system was now compromised. At that time in the big picture of life it felt as if the cancer fight was far more important. Little did I know that Lymphoedema was to become my life after cancer.