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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Lymphoedema Stories Booklet

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http://www.lymphoedemasupport.com/lymphoedema-stories

This is a link to a booklet created by the Cancer Action Network of North Sydney And the Lymphoedema Support Group of NSW to build awareness of Lymphoedema and the every day stories of those affected by it. This link will enable you to Download a copy or read online.

In the forward Dr Helen Mackie speaks of the importance of education and understanding to bring a quality if life to those living with Lymphoedema. With the improvements in cancer treatment and higher survival rates the side effect of Lymphoedema is most unwelcome. The hope is that this booklet will give a voice to the needs of those with LE who wish to see better support, care and benefits.

Thank you to all who created this booklet now let us shout from the rooftops our need for better care and treatment, at a cost that is manageable by all, for those with primary and secondary Lymphoedema. Let’s improve diagnosis in the medical community so treatment and care can start immediately. Let’s improve the lives of those living with Lymphoedema….

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Want to feel like you don’t have lymphedema?

Thank you for showing how great and important swimming can be when you have Lymphoedema… I am not a good swimmer but I walk up and down or join a water aerobics class… Reblogging … Thanks

Lymphedema Diary by Britta Vander Linden

From the time my alarm clock goes off in the morning to the moment I shut my eyes at night, I am constantly reminded that I have lymphedema in my legs. When my bare feet touch the plush rug on my bedroom floor and I sleepily stagger to the bathroom to brush my teeth, I savor every step.  I think to myself, “God, this feels good.”  Spreading my toes a little wider as I stride back across the hard wood floor in the hallway, I try to push out of my mind the thought that within minutes I will once again be encased from my toes up to my waist in compression stockings.  My iron legs, as I call them.

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Article on LNT in Florida

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Breakthrough Procedure for Lymphedema
By: LYNNE JETER

Monday, September 9, 2013 4:11 pm

Orlando Health Surgeons Bring VLNT to Florida for Lymphedema Patients

ORLANDO – Six months ago marked the advent of Florida’s first Vascularized Lymph Node Transfer (VLNT) procedure, which took place at Orlando Health under the direction of Richard Klein, MD.

Since then, Klein and his surgical team have assessed 40 patients with lymphedema, a chronic condition that leads to swelling of the arms and legs. They’ve completed a half dozen VLNT procedures, with a half dozen on the books. Because the only surgical treatment for lymphedema is so new to the United States, with few surgical teams trained to perform the complex microsurgery, many physicians aren’t yet aware of the new procedure.

“We see many patients suffering from lymphedema and no one had a cure other than conservative efforts such as massaging and compressions, so we started aggressively looking for surgical outcomes,” said Klein, who oversees MD Anderson Cancer Center Orlando’s Plastic and Reconstructive Surgery Center for Orlando Health, and received special training in Paris to bring VLNT to Florida. “This procedure has the potential to change the lives of patients affected by lymphedema who, until now, had very little options for treatment.”

Lymphedema prevents lymph fluid from draining from the tissues in the body and as a result, fluid builds up and causes swelling and soreness to one of the extremities and significantly increases the risk of infection in the affected limb. In many cases, lymphedema causes chronic wounds and ulcers and breakdown of the skin.

VLNT moves lymph nodes from one area of the body to another that’s affected by a blockage in the lymphatic vessels, relieving sufferers’ pain and discomfort and allowing them to resume their daily activities. Most insurers have covered the procedure.
Lymphedema affects 3-4 million adults and children in the United States and is, unfortunately, not an uncommon side effect of breast cancer treatment in about 15-20 percent of patients, where lymph nodes have been damaged or removed along with breast tissue in combination with radiation. Other less common causes of lymphedema include cancers where lymph nodes had to be removed as part of treatment or diagnosis, trauma to the lymphatic system, infection, and congenital disorders. In third-world countries the most common cause is parasitic infection.

Klein learned about VLNT from Corinne Becker, MD, a Paris surgeon who’s performed more than 4,000 lymph node transfers in the treatment of both upper- and lower-extremity lymphedema over the last two decades. Two years ago, Becker gave a lecture about the new treatment at a symposium in New York that Klein attended. Last November, he traveled to Paris to train with her for a week. When he returned to Orlando Health, he trained fellow surgeons Kenneth Lee, MD, and Jeffrey Feiner, MD, on the two-surgeon technique.

“The operation is very demanding because the first step is to go back to the site which nodes were taken from without damaging any nerves,” explained Klein. “There’s usually a lot of scarring in that area from previous surgeries. You have to find a small artery and vein in the location to transfer and set it into. Then, you have to harvest tissue from another part of the body without causing lymphedema in that location. Those lymph nodes must be attached to a small vein. The artery and the vein measures approximately 8.8 millimeters, so it’s a very tiny vessel. Then you’re operating under a microscope to reattach the artery and veins and sutures to put arteries together. That’s how small they are.”

The first VLNT patient, local breast cancer survivor Jean Hutchinson, is doing remarkably well, said Klein, who led the surgical team to transfer lymph nodes from Hutchinson’s abdomen to her arm pit, and reconnected arteries and veins to provide the transferred lymph nodes oxygen and nutrients to survive and develop new lymphatic tissue. She had developed lymphedema in her right arm following breast surgery and radiation, and had lived with the condition for 18 months.

“Jean is a perfect patient,” he said. “She was very enthusiastic and motivated to have this procedure done. And, she was prepared for the pre-op and post-op therapy to make it successful. Today, she’s so appreciative of how the procedure improved her life.”

Prior to the VLNT procedure, Hutchinson underwent lymphatic therapy to prepare her body for the 3-4 hour surgery. Post-surgery, she continues to undergo additional therapy to gain mobility in her arm. With new vessels and active function of the transferred lymph nodes, she saw improvement within a month or two following the surgery.

“Having the lymphedema therapy team working in tandem with the surgical team is critical. Having the entire team involved is an absolute necessity, because the operation is only one key component for VLNT to be successful,” said Klein. “Prior to the operation, the affected limb must be decongested and massaged without overwhelming the lymph nodes. It takes a trained lymphedema therapist to do this effectively pre-op and post-op. To monitor our patients’ progress, we use volume measurements to track the reduction in swelling. We also provide questionnaires involving daily living and quality of life issues to find out how we’re improving a patient’s quality of life.”

Orlando Health tapped into social media channels to broadcast the first VLNT procedure in Florida on March 11 on Twitter, Instagram and Facebook. The live feed resulted in consumer interest and an uptick in self-referrals, both locally and from out-of-state.

Even though the majority of lymphedema patients are adult females, the youngest person Becker treated with VLNT was six months old.

“You can imagine how technically difficult it is,” said Klein, whose interest in VLNT stems from family members who have had breast cancer, though fortunately none with lymphedema, and an interest in advances in reconstruction techniques.

Klein noted a tremendous need for the new procedure in third-world and developing countries for patients who develop lymphedema from parasitic disease.

“Viral lymphedema of an infectious nature is rare in this country,” he said. “We haven’t scheduled any mission trips so far, but it’s something our practice wants to incorporate down the road.”

Thank you once again for my friend in Belgium who finds these articles.. I would love to be able to hear Jean’s personal story of this procedure… I am also very happy that they are including post surgical care as part of the treatment, rather than little support other than what you organise yourself. This I feel is very important as it is an emotional roller coaster of waiting for results. Others will also be interested that insurance companies covered this procedure, where some are fighting for coverage.

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Results…

I got this from my doctor today which shows progress in the right direction since my tests last week. Much needed encouragement to keep going even though slow to see results…

1. MRI- showed reduction in your left leg size at the knee level up (left knee now 14% larger than right compared to 29% before) but about the same size in lower calf.
2. lymphoscintigram showed more rapid lymphatic fluid clearance in left leg but still abnormal (your left groin lymph node now lights up at 30 minutes after injection, compared to 50 minutes before the operation).

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Don’t worry ….Be Happy!!!

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I was able to collect my results on Friday but sadly they were in “doctor speak” and I need my doctor to translate them, as to me it is like comparing the good old apples and oranges again, as there is no constant. The constant needs to be my good leg but all those measurements changed too and the Lymphasytagraph this time finished after two hours instead of the four hours of last time!! When I speak to my doctor maybe he will be able to shed more light in the reports provided. I had an MRI which measures levels of fluid in both legs and compares them. The Lymphasytagraph involves an injection between the toes of radioactive fluid which can then be traced as it passes up the legs all the way to the liver. This maps the lymphatics in both legs and shows the time it takes for the  tracer to reach the liver and if there is any pooling or back flow along the way.

The fluid levels in my bad leg may have reduced and maybe the tracers moved faster up my lower leg, but at two hours it shows the fluid collecting in the thigh more than previously. However cutting the Lymphasytagraph by two hours does not then show if it clears. Pre surgery the fluid collected in my calf and was still there after four hours. My feeling is that at this stage there has been no miracle cure!!! I do feel my lower leg responds better and clears overnight, but as this is a two-year project we will give it time and see what the next six months will bring. I am not going to worry about this, as I cannot change the outcome. Either things will get better or they will stay as they are now, nothing else I can do but look after my leg. I will continue with my therapy and try to remain positive…yes there will be some dark moments when I wonder if I should have gone ahead with this surgery, but I can only move forward not back.

In the mean time this is a very exciting month as my daughter gets married on 28th September. There are lots of visitors, including my son who will arrive from Denmark with his girlfriend. I have much to look forward to, so this month will be wedding month… Here comes the bride and groom……very exciting.

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Sometimes Lymphedema just feels awful!!

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.

imagePersonal commentary – Living with lymphedema
No one really talks about how angry they feel about getting Lymphedema. Well I’m spitting mad.
First, I was incredulous about my condition. I watched as my leg swelled to twice normal size, I struggled with wearing shoes that fit, the edema in my ankle spilling out like dough. My toes ached from being squeezed.
I remember my intense feelings of resentment toward my physical therapist who explained to me what was happening to my leg. Yes, there was a therapy to treat the condition and no, there wasn’t a cure. You will have to live with this.
The first feeling of anger is due to the loss of control to what your body is doing. NO one told me about lymphedema. No doctor ever explained the consequences of my surgery. They let me find out for myself, years later what would happen. Now, thankfully there is a plethora of information on the internet.
I wasn’t really angry at my therapist. She did an amazing job. She was able to restore my leg to a near normal size after 3 weeks of intense therapy. My life as I knew it stopped then. I lived in South Carolina at the time; it was hot in the summer! I remember working in the garden planting and weeding and fixing up an older home on a busy corner in a small town. I was in a pair of shorts and a thick Juzo stocking on my leg. I felt that most intense internal shame looking at my new peach colored heavy knitted leg.
Sometimes, lying on the couch with my Lymphedema leg propped up on the cushion to ‘drain’ and rest it, I would have conversations with my alien appendage. “Why?” Why do you swell? When is it going to stop?” But it will never stop. And, you know that because you have been ‘educated’ about the condition. The therapist smiles and babbles on and tells you how great you’re doing. The therapist is a hero but I hate what she has to say.
…You can’t stay in the sun. You can’t take a hot bath, you can’t get a pedicure, watch out for insect bites, make sure you wear proper protection. Etc., etc….
My leg gets tired. I live in fear of making my swelling worse. If I sit too long, if I stand too long, I can feel the pressure growing in my ankles and knee-joint. I used to like to walk and jog and work-out. Now, it feels like whatever I do, I make it swell.
I have 3 dogs who want to be walked. So I take them. They don’t see the heavy stockinged leg woman; they see only the able-bodied person I once was. So I go. I walk more and more every day, encouraged.
I forget about my leg while I walk. The therapist encourages the exercise. “You want that muscle to contract and push the stagnant lymph out.” But I’ll never walk enough to clear it out completely.
I will speak only for myself, but I’d like to include others in general terms. Please forgive me if I’ve spoken out of turn, but we’ve been stoic about our condition. I just want to express that I am really pissed off about this.
I play a mind game where I go back to the day I had surgery. I try to re-play a different scenario for myself. It’s an endless loop as I know full well that I can’t reach back in time and re-write the ending. I can live with the actual surgery that was necessary to save my life. But I can’t live with lymphedema. Nope, I can’t. I often think that I would prefer to have a condition that had no outward visible signs. Wait a minute! Think about what you are saying. You shouldn’t have to make deals.
I keep on going because I have to, because I am so much more than the edema trapped in the tissues of my leg.
I go into surgery again for a lymph node transfer to try to repair the damage with the faith that I will come out alive and whole. Does anyone really express this fear? We must be brave soldiers, like my mother used to say to me when I was a kid.
There are risks….But I’m a good soldier.
I’m scared witless. Do you understand? Surgery is how I got into this nightmare. Now, surgery is going to correct it? I hope so. Must I sacrifice another part of me to restore myself? So, I’m angry. I put myself in the care of highly skilled surgeons who have taken an oath to do no harm. I believe them.
I know that I am not alone in experiencing the humiliation of having to expose a swollen, wrapped, and compressed in elastic limb in public. People make furtive glances, others stare. I feel like saying, “Did your momma never teach you not stare?” I say nothing and find a small cubby hole way deep inside of myself to hide. Other times I make snarky comments, “Oh, it’s an old injury from when I was a flying trapeze artist in the circus.”
This soldier has taken a major psychological hit. My wounds are visible to all. But I’m not a soldier, I’m a middle-aged woman who struggles through existence trying to compete like everyone else, but I must do it with an enlarged aching limb. I’m left to fight the insurance giants, fight for enough time with a physical therapist, and take a frightening step to have additional surgery to restore maybe 50% of what I had once before.
Someday, maybe 20 or 30 years from now, they will have a better solution for us. People will not have to be such courageous soldiers and bravely walk into the unknown. JEM

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No results yet!!!

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The sign says it all… No results yet!! I arrived at the hospital at 7am and by 12.00 all tests were completed. I was told to come back at 3pm for the reports and images, so I spent three hours killing time in the local shopping centre. However at 3pm no results, no images and no doctor to do them as one had called in sick, and the other was too busy! I hate waiting for results, I get very anxious, it reminds me of all the scans and check-ups for cancer, where you go through all the different scenarios while you wait for days, hoping all is clear. Although these results are not life threatening, I would just like to know if there is progress since the nodes were transferred. Are they growing? What are they doing? Are they helping? Have the Lymphatics improved… It has been such an emotional roller coaster it would be great to have some positive feed back.

On a positive note the MRI was much better than my first experience which I wrote about https://lymphnodetransplant.wordpress.com/2013/03/07/the-noise-tunnel-bang-bang-bang/ on that occasion they forgot to give me ear plugs and the headphones were very old!! This time I took my own ear plugs and they had new headphones  that played music!! At least I knew what to expect.. It is like some one has a party with saucepans, guns, cars etc all next to your head!!

So my day is over and on Friday I will return to the hospital to hopefully collect the results and images. I am not due to see my surgeon till the end of October, hence my need to get the results myself. Thank you to everyone for their good wishes and messages… It really helps….thanks
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