Lymphedema: a Name for 33 year’s worth of questions.

A great post about Primary Lymphedema and its diagnosis and treatment ..thanks Laura for sharing your experience so others may learn from it …

Expressions of Laura Ashley

This month, I began a journey that I never thought I was prepared for. Upon realizing that I was in my 30’s and having never really addressed why my legs always looked puffy or swollen, I thought I’d go to the doctor. I didn’t really know where to start, so I went to the foot doctor. As part of their intake session, they took an xray of my foot. When I met with the doctor, he looked at my foot movement, my walk and gait, and range of motion. But he said my bones were fine. Even my foot, which he said was not a “flat foot” but a type of flatter foot, was fine. But he said he thought I had lymphedema because of the swelling and that he’d refer me to a lymphedema specialist. I left with a prescription for low level compression wear and some online resources…

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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

A question for you all … Please help…

Ann has asked me to share this question so more of the people who follow this blog can answer her questions… It would be great if you would write any answers for Ann as a comment at the end of this post.. If you are willing to email her then please email me your details to helenbrd@bigpond.net.au and I can pass these on to her.. It is a huge decision to go ahead with surgery for Lymphedema and it is very difficult to get answers when it is so new… However everyones experience can only help each other so i look forward to your responses… Thank you so much … Helen

“Is there anyone on this blog with primary LE considering surgery? Anyone familiar with Corinne Becker’s track record? I emailed her and she’s emailed back-I’m impressed. I hear very good things about Chang but struggle with his deeming MRL not of great value. Since my situation is congenital, I can logically deduce that MRL would be a valuable tool when considering surgery on a patient, to know as much as you can about them before operating. However, I think he is just so confident in his procedures he feels it’s just another expensive test. I think he feels the solution/surgery/procedure is the same no matter what the imaging shows.
Dr. Becker, on the other hand, sees significant value in MRL. She distinguishes between hypertrophy and hypotrophy of the lymphatic vessels, and says that will dictate which procedure is used. That in cases of severe hypotrophy (not enough vessels), LVB can actually do harm to the remaining vessels. She uses LNT for hypotrophy and LVB for hypertrophy (too many vessels/tangled mess) and sometimes recommends LNT as well for that. Is anyone familiar with these two categories? Anyone had surgery by either of these surgeons? Is there a way to reach a larger audience on this blog with this question?” Ann

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

Dr Corrine Becker with Lori

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Dr Corrine Becker with Lori March 2014 provided by Lori

This is a wonderful picture that Lori sent me today from her appointment with Dr Becker and Dr Vasilles in New York, earlier this month. When someone changes your life it is hard to find the words and a hug says it all!! Dr Becker was pleased with Lori’s progress and as time goes by her lower leg will improve more and more. At a later stage there may be a need for a small amount of liposuction to get rid of the fibrous, stubborn areas.

This is a Link to Lori’s story of Primary Lympedema and surgery

https://lymphnodetransplant.wordpress.com/2013/07/17/loris-story-of-primary-lymphedema-and-treatment/

Dr Corrine Becker is the pioneer of Lymph node Transfers and is responsible for teaching many doctors world-wide how to perform this surgery. In Paris she started more than 20 years ago and over the years has perfected the technique. That we have the opportunity to be part of this revolutionary treatment is truly giving hope to many. Over the next few years, with research into medications that help the development of the lymphatics, it feels like we are moving into exciting times.

This is a link to a study in Finland (2014) on Lymph node Transfers, it is long but there are items of interest about the use of Growth Factor written by Tiina Viitanen

http://www.doria.fi/bitstream/handle/10024/94237/AnnalesD1103Viitanen.pdf?sequence=2

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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

Kimber.. Five weeks post surgery for Primary Lymphedema

imageThis is the latest update from Kimber who has Primary Lymphedema, she had surgery in New York five weeks ago with Dr Corinne Becker and Dr Vasile this is a link to her previous post just before the surgery and this also has a link to her story of having LE since she was six years old https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

Up date…

Well, it’s been exactly five weeks since I had the second surgery and it’s night and day as to how I feel now. Having two surgeries in a 24-hour period was one of the hardest things I’ve ever done. It’s not the worst but extremely hard. The first surgery, which took place September 23rd, was the hardest out of the two. Not only did I have the transplant to my right groin area but I also had my right thigh that Dr. Becker and Dr. Vasile tried to revise the best they could. The surgery was supposed to last about five hours and it ended up being eight. I was in recovery for another four hours before they allowed me to go back to my room. The day was extremely long as I left for the O.R. at 7:30am and didn’t get back to my room until 8pm. There was definitely a lot of pain but majority of it was from the donor site and my arms were killing me and I had no idea why? What I didn’t know was that I was starting to have Thrombosis settle into my arms. Thrombosis is a very rare side effect and naturally I had to get it…LOL It’s the formation of a blood clot obstructing the flow of blood, which can result in bad swelling and pain. However, when I look back on it now it doesn’t surprise me that I ended up with Thrombosis. The veins in my arms have been completely wiped out and very weak since I was twenty years old due to all the cellulitis infections. It’s why I have a port-a-cath in my chest. I was also told that because the surgery was so long that laying in one position with my arms strapped down and no movement also helped cause the Thrombosis. As far as my groin and the revision to my thigh, that didn’t hurt much at all. However, I was up all through the night because my arms and donor site were just too painful. Than, what comfort it was as through the night I would look over at my husband sound asleep on the couch along with hearing him snore…haha Please excuse my dry sense of humor but I have to laugh because laughter plays a huge part in seeing me through this disease 🙂

The next morning, at 7:30am I was wheeled down to the O.R. to have the second transplant. This time the donor site was my right side with the transfer taking place in my left groin. The original plan was to have the transplant to my left knee. After talking to the doctors in the O.R. it was decided it would be best to put the lymph nodes in my left groin area. Things went very smoothly with that surgery as it lasted just four hours, exactly what my doctor’s thought it would be. When I was able to go back to my room I felt completely out of it and was a bit confused (too much anesthesia). When I woke up my husband asked if I wanted something to eat and I told him I couldn’t as I needed to wait until after surgery. That’s when I found out the second surgery had already taken place and I was out of recovery and back in my room. I had four drains in altogether and immediately felt an enormous amount of pain in both of my sides (donor sites) and both my arms. My arms and hands were so swollen, weak, and heavy that it hurt like hell and I could barely move them. All I could do was constantly watch the clock so I could call the nurse for pain medicine every chance I could. I honestly was just that miserable. I was in the hospital for a total of five days and when I was released I stayed in NYC at the Miracle House for another six days. I had to stay a few days longer because I developed a pocket of fluid at the left donor site that had to be drained. Both doctors wanted to keep a close eye on me to make sure there wasn’t anything else that could potentially develop. I was allowed to return home to Maryland after 11 days. Oh, on a side note, the second night in the hospital, Scott stayed up with me through the night as I made sure to point out how refreshed he looked because of all the sleep he got the night before (once again I just can’t help myself) LOL

Once I returned home a week later I started MLD therapy. I go five days a week and also wear ready wraps (another type of compression garment) on both legs from my feet to my groin. I don’t wear anything at night but will eventually. I’m to do this for three months and then will transition to a compression stocking. I’ve been eating LOTS of protein, vegetables, drink lots of water, take daily vitamins, and walk every day. I just want to do everything I can to try and achieve the best results possible. I honestly don’t want to ever look back on any of this and wonder if I could have done something different. So, I’m willing to do WHAT EVER it takes!

I go back to see Dr. Becker and Dr. Vasile in November. It will be interesting to see what they have to say about the results so far. I am seeing an improvement but it’s hard to decipher if it’s from the transplants, the MLD therapy, or maybe a little bit of both? I’ll also find out how Dr. Becker wants to proceed with the other transplants. I will need them in my knees and more than likely my ankles as well. Even though I had a rough time with the surgeries I want to point out that my situation is very much different. My case is so severe with being Primary and in two limbs. For me, I don’t mind being aggressive only because I know what I’m dealing with and what I’ve been through since I was six years old. My disease is so incredibly aggressive and forceful that I’m willing to go the extra mile to try to combat it. With out a doubt I have absolutely NO regrets and will do it over again with my knees when my doctors feel I’m ready. For anyone who might be considering lymph node transplant I don’t want my story/experience to alter your decision. Having two transplants done in a 24-hour span is a very rare occurrence.

Helen has told me this requires lots of patience along with it being an emotional roller coaster and I couldn’t agree with her more. Even though this will be a long process I do believe from the bottom of my heart it will all be worth it in the end. While this isn’t a cure I feel for the first time I could really get some much-needed relief from all the swelling and hope it slows the infections down and maybe eliminate them entirely. However, if God forbid it doesn’t work out the way I wanted at least I know I tried and gave it EVERYTHING I possibly had. Once again….keeping my fingers crossed!!!

Once again thank you Kimber for sharing your story and keeping us up to date with your progress… I should add that Kimber’s arms were back to normal after three weeks and are now fine.

This blog does not replace medical advice and everyone is an individual in their needs. In creating these posts it is to share mine and others experience, of the surgical journey, on a personal level rather than a medical one.. If you would like to share your story please email me on helenbrd@bigpond.net.au

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I have Primary Lymphedema .. Update

imageThis is an update from Kimber the night before she is due to have two Lymph Node Transplants to treat her Primary Lymphedema. Kimber promised to keep us updated  through this process and so I share the latest post with you. This is a link to her first post in case you have not read it https://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/
I am sure that I can say from all of us that we wish Kimber all the best and may she come through this with flying colours. Thank you so much for allowing us to share your journey in the quest for better outcomes for those with Lymphedema….

Kimber’s words…

“Just a quick update as it’s the night before my first transplant. It’s almost midnight and I can’t sleep due to the ton of emotions and nerves that I’m currently feeling. About two weeks ago I received a call from Dr. Vasile asking if I was willing to have two lymph node transplants instead of one. At first I was hesitate but after we spoke at length I agreed to do it. So, tomorrow at 7:30am I’m having the first transplant along with a de-balking procedure on my right leg. Then on Tuesday I will have the second transplant on my left knee. I know this is a lot to have done in a 24 hour span but I’m completely up for it and feel it’s in my best interest. I’m excited for what I believe could potentially change my life in a much positive way.

More importantly, I have drawn so much strength from all the support I’ve been receiving. From words of encouragement to people who follow Helen’s website along with my family and friends. I’ve never felt so loved and humbled in my entire life. It makes me feel even more confident about these procedures. I promise to post another update in a couple of days. So, let’s hope and pray I can get this lymph nodes up and running the way they should have always been from the start :)”

Good luck over the next few days Kimber, we will be thinking of you….
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I’m so progressive (medically, that is)

I would like to introduce you to this blog by Britta who has Primary Lymphedema… By sharing we help to build awareness of this condition… Please give her your support.. Thanks

Lymphedema Diary by Britta Vander Linden

When the medical professionals say that lymphedema is a progressive disease, they aren’t kidding.  In the 15 years that I’ve had the condition, the development of my lymphedema can be tracked by the compression garments I have worn to manage it.

Compression garments are stockings or sleeves or some other type of clothing that provide gradual compression that pushes the lymphatic fluid towards the heart (meaning the garment is tightest at the bottom of the limb, i.e. the ankle or wrist,and loosest at the top of the limb).

Some lymphedema patients can’t fit into compression stockings due to the severity of their swelling.  I don’t know how they can function or bear the pain.  For myself, I cannot remain in a standing position for more than a few minutes without my stockings on before I start feeling discomfort.  Within a matter of hours swelling would follow and my legs would be…

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I have had Primary Lymphedema since I was six years old

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Lymphedema support Network

This is a personal story from Kimber who has very bravely agreed to allow me to share her story. This is the first part which gives the history of her life with Lymphedema, from the age of six, and will continue with updates as she has surgery in New York with Dr Corine Becker and Dr Vasile … I am so proud of Kimber for writing this as every time someone shares we give a voice to Primary Lymphedema… Mostly we hear the stories of secondary Lymphedema after cancer treatment, but this is only the tip of the iceberg. Primary Lymphedema can be far more severe and truly a lifetime sentence, often misdiagnosed and misunderstood.

Thank you so much Kimber for allowing me to share your story and I wish you good luck and good fortune in your on going surgery.. I am sure that everyone who reads this will thank you as well.

Like most six-year olds, I went to sleep on a summer night as a perfectly happy, healthy, very energetic child. Waking up early the next morning though was completely different. I was very sick with what would be my first of hundreds (this is no exaggeration) of bouts of horrible infections known as cellulitis. My cellulitis is EXTREMELY painful inflicting high fevers, vomiting, and chills that would actually make me shake and tremble. Each instance was so bad that I would be completely incapacitated within about 20 minutes of the first symptom of an infection. The very first infection started in my right thigh. It was very swollen and so infected it had actually turned a shade of purple. After being hospitalized for 10 days, the doctors released me and told my parents they believed I had an allergic reaction to a spider bite. While the infection finally went away I was left with swelling that never completely went down. From that point on, even though I was only six, I became very self conscious of both myself and what others might think of me.

Things progressively got worse when I reached age twelve. I woke up one morning to get ready for school and found that my right thigh was absolutely huge. Unlike previous times, I had no symptoms of an infection, but the swelling was so bad that I couldn’t fit into any of my pants. My only option forced me to wear my father’s sweat pants to see the doctor. My parents managed to have me seen by a specialist that same day at a very well-known and famous hospital called John Hopkins. It’s located in Maryland which is the same state I live in. After my hospital visit, I was put through one test after another to try to determine what was going on. Each test was incredibly painful and horrifying. It would be one thing if the test revealed a cause but the doctor had no idea what was wrong. He ended up telling my parents that he thought maybe I had a form of Elephantitis and there wasn’t anything he could do. We were sent on our way with more questions than answers. By the time I was thirteen years old the swelling had continued in my leg and then extended down to my right ankle. From there my leg continued to get bigger and bigger. This was a very hard thing to accept because I used to be very athletic and hadn’t been allowed to play sports due to my doctor thinking it would only cause me more harm.

At some point the doctor’s believed I needed surgery to try to correct all the issues from the swelling. I was fifteen years old when I had my first of fifteen surgeries on my right leg. It started with liposuction and then a “de-bulking” procedure. The latter consisted of opening my leg from top to bottom, removing all fatty tissue and draining whatever fluid possible. Then as you’re closed up the skin is pulled tightly together as if you’re tying a pair of shoe strings. With the excess fluid and tissue removed they had to cut away any excess skin. All of this was done in hopes of having a smaller leg yet each time the swelling would gradually come back and they’d recommend doing it again. I had this done five more separate times thinking each time it would make it better. What my parents and I didn’t know was that I shouldn’t have ever been operated on in the first place. Any surgery makes Primary Lymphedema become worse because it destroys anything that might still be working in the lymphatic system. We didn’t know and neither did the doctors during that time. Like any teenager struggling with body image, all I wanted to do was feel the same as the other kids and live a “normal” life. I wanted to fit in with the rest of society and more importantly wear the clothes and shoes my friends were wearing. Sadly none of that happened. Instead of having a smaller leg, I was left with a HORRIBLE scar that runs from the top of my leg by my groin down to my ankle. Having these surgeries have caused me nothing but pain, heartache, and opened myself to having one infection after another.

Right before I graduated high school, I got yet another infection that unbeknownst to me has set the tone for what my life was going to be like. I started getting back to back infections so quickly that it put me on a first name basis with the hospital staff. At one point I was in the hospital every two weeks. It became so bad that I started to believe I would never be able to live outside of a hospital again. My life completely revolved around four hospital walls. I was afraid to even walk out of the house because it felt like no matter what I did it was going to cause another infection. My plans to become a high school music teacher never came to fruition as I couldn’t finish college due to missing so much school work and constantly being sick. I felt as if I had no life at all.

In my early twenties I got married and two years later pregnant with our first child. My husband and I were told by two different doctors that pregnancy wouldn’t affect my lymphedema and everything would be ok. My pregnancy was great because I didn’t have any infections the entire time. It was so nice to have any type of reprieve from an endless cycle. While this was supposed to be one of the happiest times in my life it also was a little bitter-sweet. Unfortunately the stress of pregnancy caused my lymphedema to cross over into my left leg. I woke up one morning to not just one very swollen leg, but two swollen legs as each was just as big as the other. I know the good out ways the bad and want to point out that I have absolutely NO regrets in having children as I’ve been asked that question so many times. I would go through it all again as our three children are the best blessings we could have hoped for. As long as each is happy, healthy, honest, and productive it’s all that matters regarding our children.

Two months ago I woke up in the middle of the night with the worst infection I’ve ever had. It scared me and shook me to my core that the thought actually crossed my mind if I was actually going to make it out of the hospital. When I came home and finally recovered, I decided to get on the internet and start doing research for possible new treatments, surgeries, etc. This is when I found Helen’s WONDERFUL website and became glued to it for hours. Because of Helen’s site I first learned of lymph node transplant. I had no idea this even existed. From there I got the information from her about Dr. Becker who is from France. She comes to New York City every two months and works with three other surgeons and performs lymph node transplants. Last month (July) I went to NYC and was able to meet Dr. Becker along with the other surgeons and found out I’m a candidate for the transplant. With having such a severe case of lymphedema I will need three transplants altogether. Two in my right leg and one in my left. I can’t even begin to tell you how nice it is to have a doctor educate me on my disease as it’s always been the other way around. I’m a bundle of nerves when it comes to this but I believe this is a very positive step and huge break through for all of us lymphies, whether its primary or secondary. I have a lot of preparation that needs to be done before the surgery and will have my work cut out for me afterwards. However, as scared as I sometimes feel, I know I’m very much ready for this because I never thought something like this would ever be possible in my life time. My first transplant is scheduled at the end of next month in NYC.

Since the age of six I’ve always felt isolated as the emotional, mental, and physical toll this has taken there is just no word or words to even describe. Helen’s website is an excellent way to share my thoughts and feelings openly. I’m about to turn thirty-eight years old at the end of this month. Even if I had to think about it I can’t put a number on how many infections I’ve been through. I am constantly worrying about scrapes, cuts, shaving, minor burns, bruising, mosquito and insect bites as just the smallest things trigger an infection. I’ve had over 20 surgeries now including having multiple medi-ports implanted on alternating sides of my chest. This is the only way to provide me antibiotics to help fight off the infections. My veins have been burned and weakened from numerous IVs to my arms and central lines in my neck. I’ve had every type of antibiotic you can think of injected into my body as it is the only way to rapidly reduce the infections on top of high doses of pain medication. I’ve traveled to different states, doctors, hospitals, and clinics and no one has ever known what to do with me. The constant fear is sometimes enough to drive me crazy and definitely leads to a downward spiral into bouts of depression. There is no doubt in my mind there were times where I felt like I was living in absolute hell.

As I’ve told Helen in a personal email that I would like for her to post my story as it’s a very personal decision. I’m tired of feeling that I need to hide or be embarrassed by my story and the disease itself. I’m so incredibly thankful that I found Helen’s website as this is a perfect way to share and educate yourself and other’s about lymphedema. I also thank God everyday as he blessed me with a wonderful husband who has always been understanding, patient, and supportive. It’s because of him and our three awesome children as to why I’ve been able to get out of bed every day and not let this disease consume me. I’m also blessed with loving extended family and friends to help see me through the good and the bad. Along with my very strong faith I know the good Lord up above has blessed me with this opportunity….keeping my fingers crossed! By Kimber

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Primary Lymphoedema Videos

These are two vidoes I found from people living with primary Lymphedema… Both show the importance of assessment and treatment to stop their legs becoming worse and worse.. Every health fund in every country should cover patients for primary and secondary Lymphedema, everyone deserves to have access to treatment. Without treatment people cannot continue with their day-to-day activities.. Lymphedema is no different from any other illness so why is it misunderstood and incorrectly diagnosed. Lymphedema deserves a voice!!