Kimber’s third LNT… And Update

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Kimber has been updating us regularly since her original Lymph Node Transfers last year in New York. Kimber has Primary Lymphedema in her legs and has lived with this since a child. The lymph nodes in Kimber’s entire body have been mapped by the use of a specialist MRI and are normal in the upper body but the nodes are missing in her legs. It is very important with Primary LE that these test are done so that nodes are not removed from an area that is short of nodes. Therefore only surgeons who have access to these tests should perform this surgery on someone with Primary LE.. This will be Kimber’s 3rd LNT.. Below is Kimber’s latest update before she heads of to New York for surgery..

“It’s been over a year since my last update from having two LNT’s back in September 2013 with Dr. Becker and Dr. Vasile in NYC. A couple of positive and interesting things have taken place since those surgeries. The most positive is that I’ve had no hospitalizations due to those God awful staph/cellulitis infections. I should have been in the hospital six or seven times by now. I can’t even begin to tell you how life changing this has been. The benefit of me not living in and out of the hospital and not just for me but for my husband and our three kids as well…kids have their mother, husband gets his wife, and I finally get myself. Not only have I managed to avoid the hospital but I was also able to start working part-time. I haven’t been able to work in over sixteen years because of having chronic infections pausing my life and those around me. After I complete the next two LNT’s that are needed, my next goal will be to eventually transition to working full-time. Another positive aspect, although a minor one, is that I am able to ski again. I had to stop skiing about twelve years ago due to the LE as it truly had taken over my legs. Along with all the extreme swelling they also felt like tree trunks and I couldn’t fit into my ski boots no matter how hard I tried. Skiing last winter with my family felt so exhilarating that at one point when I reached the bottom of the mountain tears streamed down my face. I truly couldn’t believe I was able to do this with my family. I also noticed this past summer it was a little easier with the heat. My legs are definitely still swollen but I was surprised how they responded better as long as I was wearing my compression stockings. I will never be able to go with out compression but the legs didn’t get as large in the heat and humidity like they have in the past.

The interesting aspect during all of this was having to switch surgeons. Unfortunately, Dr. Becker no longer has her license to practice medicine in the United States. Not because of her own doing but the laws are completely different in the U.S. and Europe. From what I understand, when she went to reapply for her medical license wasn’t approved. It was upsetting and shocking how things turned out and took place. However, because of Helen and the wonderful women who I’ve met through her that are near and dear to my heart (you know who you are), they helped me to keep my head up and to remain focused on the goal. These women gave me wonderful advice and encouraged me to set up an appointment with two surgeons who also perform LNTs. Dr. Smith and Dr. Dayan are top surgeons in their field, come from respective hospitals in NYC, and they’re both extremely involved with LE and LNT’s. I can’t thank Helen and our friends enough. When I thought all hope was lost they stood beside me and lifted my spirits and helped me move forward so that I could continue my quest for better health as I still needed two more LNT’s.

I’m about to have my third LNT this Monday, December 15th, in NYC with Dr. Mark Smith. I’m having lymph nodes removed from the neck and transplanted to below my right knee. He’s also going to try to “clean up” the top of my right thigh from botched surgeries that I had when I was a teenager. So, tomorrow I leave for NYC and surgery on Monday morning and be a temporary resident for three weeks before I’m able to return home 🙂 Just like last year, I’m a BUNDLE of nerves and will be happy when it’s over. I know I’m in extremely good hands with Dr. Smith and believe things will turn out very well.

I feel extremely blessed and never take for granted about my lack of hospital stays. LNT’s are still extremely new and cutting edge in the medical world, but there isn’t a doubt in my mind that it’s due to this as to why my health has improved, greatly…fingers crossed that things can only keep improving in this battle called Lymphedema.” From Kimber

Thank you Kimber for sharing this with us…I will be thinking of you on Monday and wishing you well xxxx

These are some links to Kimber’s previous updates

https://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/

https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

https://lymphnodetransplant.wordpress.com/2013/10/30/kimber-five-weeks-post-surgery-for-primary-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.
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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.

https://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.
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

A personal account of surgery with Dr Chang

imageOne of the joys of writing this blog is bringing people together, being able to support them while they go through the process of surgery for Lymphedema, both before and after. I love getting emails and comments with questions plus news of decisions made to have a Lymph node transfer, lymphovenous bypass surgery or liposuction or a mixture of all! Two weeks ago Jeanie contacted me with news that she would be having surgery with Dr Chang the next day..(http://www.uchospitals.edu/specialties/cancer/lymphedema-surgery/) She was feeling a mix of nervousness and excitement, which is quite normal given the surgery is elective and a huge decision to make. She had also wanted to share her story to help others in the future.

Jeanie wrote before surgery…..
“I’ve been reading your blog about your experience with the Lymph node transplant. I, too, am having the surgery (my LE is right leg and basically from the waist down) on Tuesday, May 6th with Dr. Chang!! I’m so nervous, and hopeful, ….yet scared beyond belief!
I had uterine cancer in december 1999 and the lymphedema started about 5 years later. I have done everything. Everything!
I hope you get this message – I just found your Facebook page….https://www.facebook.com/Mylymphnodetransplant?ref=hl
Thank you for your informative sites and pioneering soul!!”

“I am so happy that I was able to connect with you. You have been such a pioneer – and I am so grateful for your experience and your wonderful way of putting ‘words’ to all the complex emotions that go with lymphedema and now the lymph node transplant decisions. I am feeling very very nervous…and a little excited about the surgery. Dr. Chang is taking the lymph nodes from the neck area on my left side. I don’t know how many places they put the nodes into my leg. I will find that out this morning, I think. I believe he mentioned 6 or 7 areas?…..I’m not quite sure of that right now. He’s also doing a lymphovenous bypass at the same time.(https://lymphnodetransplant.wordpress.com/2014/04/10/dr-chang-improvements-in-microsurgery/)He said the surgery can take 7-9 hours. That part probably makes me the most nervous! I’m a little scared of anaesthesia for that long. ….So, all prayers are most appreciated! 🙂

I would love to put my information on your blog. Please feel free to add any of my I formation if you think it could be helpful to anyone else. The decision of whether to do the LNT or not was difficult, but ultimately I decided to pursue the surgery when the reality of my leg continually getting worse was harder to face than the surgery. The entire right side (waist and abdomen) has started to get larger over the past couple years. My right side is approximately 1-3 inches larger than my left side..it gets worse at the top of my leg. …And I have been the most compliant wrapper, daily compression wearer and in the last 6 months – pump user! I have mixed emotions about the pump, but from what I understood, insurance is more likely to help out, if they feel we have gone through all the proper – insurance recognised – channels. I have been told that my insurance will pay half. I have received pre-approval, so I am hopeful they will come through for me. Insurance is always one of the most anxiety riddled areas for new technology…so, cross your fingers! I have blue cross/blue shield of Minnesota.”

Jeanie wrote two weeks post surgery….
“Thank you for touching base! It has been two weeks (yesterday) since my surgery. My stitches are still in and there is still a little discomfort at the incision sites, but over all – the pain isn’t too bad.

I think I can see a little difference in the lower part of my leg. Dr Chang did two Lymphovenous bypass surgeries in my lower calf and the transplant/transfer from my neck to the groin on my right side. They took the nodes from my neck, so I’ve got a 6-7 inch scar on my neck and at my groin! Adorable – not! The bypass areas each have about a two inch scar with stitches.

I can’t remember what it’s like from others who have had this procedure….but, after 2 weeks, I have to admit, at times I wonder if all the discomfort and inconvenience is worth it. I think it is….and I do know that all the results won’t be available until a year from now…….maybe longer. So,I have to remind myself to be patient. I am supposed to keep my leg elevated as much as possible (70-90%of the time) for the first 4 weeks…..And for the next couple weeks after that, just minimal activity….i.e. light walking and golf….no strenuous activity i.e. No swimming until at least 8 weeks out. Im trying to stay immobile and give the lymph nodes a gentle, non-gravity bearing environment to establish themselves. 🙂 ….even though I’m getting bored, I try to stay positive that this is the first stage of the journey.

Also, there is such interesting research occurring right now, with lymphactin….I think the future looks better and better. I would have loved to be able to have the lymphactin with the transfer….but, it isn’t approved for the U.S. yet. It is currently in clinical human trials. Do you know anyone who has had lymphactin with the transfer?

At this time I only have a little pain at my neck incision and at the area below the groin incision.
Thanks for staying in touch!!
If you hear anything new in the world of research (especially with lymphactin with patients who’ve had a transfer) …..please let me know.” Jeanie

Thank you so much Jeanie for sharing the start of your journey after a LNT and Lymphovenous bypass. These surgeries are so new but no one need be alone and there are now others to ask questions of .. One thing for sure is that it brings a roller coaster of emotions along the way!!! Plus much patience is needed for results… I hope that you will allow us to follow your progress over the next few months and years as it does so help those who follow behind!! Thank you so much..

If any one would like to contact me my email is helenbrd@bigpond.net.au

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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