Sometimes life does not go as planned!!

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I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

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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.
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Precautions to lower the risk of Lymphedema after cancer treatment.

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http://www.cancer.org/

American Cancer Society

American Cancer Society (Photo credit: Wikipedia)

During surgery for various cancers Lymph nodes may be removed and radiation given. This leaves the effected limb at risk of Lymphedema. Myself I have one leg with Lymphedema and one at risk, as Lymph nodes were removed on both sides followed by radiation. I therefore treat the at risk limb with great “respect” to protect it from Lymphedema. Once Lymphedema starts that is it, there is no going back, so if there is a way to stop it starting I encourage you to use it!! I thought this article from the American Cancer Society gave very good advice,  a great deal of which is important for limbs which are at risk or which have Lymphedema…taking these precautions may also stop your Lymphedema worsening.

“For people at risk of Lymphedema

At this time there are no scientific studies to show that lymphedema can be prevented. Still, most experts say following these basic steps might lower your risk of lymphedema, delay its onset, or reduce its impact.

Get regular medical check-ups.
Regular check-ups should include screening for lymphedema. If you’ve been recording measurements of the affected part of your body, this may be part of the check-up. Talk to your health care team about how often you should be checked.


Report changes.
After surgery and/or radiation, you will learn how the affected part of your body normally feels. Any changes in size, color, temperature, feeling, or skin condition should be reported to your doctor right away.
Try to get to and/or stay at a healthy weight.
We know that obese people are at higher risk for lymphedema. Talk to your health care team about what a healthy weight is for you, and get their advice on how to get to or stay at that weight.


Exercise.
It’s important to use the part of your body that’s been affected by cancer for normal, everyday activities to help you heal properly and regain strength. Using your muscles also helps the lymph fluid drain like it should.
Certain types of exercise can reduce your lymphedema risk, too, and some exercises can make lymphedema better after it starts. If you’ve had surgery or radiation treatment, ask your doctor or nurse when you can start to exercise and what type of exercises you can do. Avoiding exercise and allowing your body to get out of shape may lead to lymphedema and episodes of swelling that are sometimes called flare-ups.
But keep in mind that some kinds of exercise can increase your risk of lymphedema or make lymphedema worse if you already have it. Overuse, which can result in injury, has also been linked with the start of lymphedema in some people. Work with a well-trained fitness or health professional to design a program that’s right for you and starts at a low level of intensity and progresses slowly to avoid overuse.
Follow these tips for exercising safely:
• Use your affected body part as normally as you can. Once you are fully healed, about 4 to 6 weeks after surgery or radiation treatment, you can begin to go back to the activities you did before your surgery. But check with your doctor first.
• Exercise regularly, but try not to over-tire yourself. Before starting any exercises, talk with your doctor, nurse, or physical therapist. They can help you set goals and limits so that you can work at the level of activity that’s right for you.
• If the affected part of your body starts to ache or swell, lie down and raise it above the level of your heart.
• Avoid repetitive overuse of the affected body part. Sudden increases in how long or hard you work out might trigger or worsen lymphedema.
• Any exercise program should be started gradually, increased cautiously, and stopped if you have pain, more swelling, or other discomfort. Talk with your doctor if you have any of these problems. If they continue, ask about being referred to a lymphedema specialist.


Use of compression garments
Compression garments are fitted sleeves or stockings that can help control lymphedema. They can help prevent and reduce swelling by moving lymph fluid from the arm or leg back into the body. Careful fitting is needed and you should follow your health care professional’s advice on use and care of the garment.
Compression garments are most often used by people who already have lymphedema. But if you are at risk for lymphedema, you might want to use one to lower your risk in certain high-risk situations. For instance, lymphedema has been linked with air travel, possibly because of air pressure changes. But there are pros and cons to using a compression garment on long or frequent flights. Ask your doctor or therapist if you should be fitted for a garment to wear during air travel.
Do not use a poorly-fitting compression garment under any circumstances, as this may increase risk for lymphedema or make it worse if you already have lymphedema.
You usually do not need a compression garment to prevent lymphedema during exercise. But if you’ve noticed swelling while exercising, talk to your doctor or therapist.


Try to avoid infections, burns, and injuries.
Your body responds to infection, burn, or injury by sending extra fluid and white blood cells to the area. If lymph nodes and vessels are missing or damaged, it’s harder for your body to move this extra fluid, which can trigger or worsen lymphedema.
Some basic precautions, good hygiene and careful skin care may reduce the risk of lymphedema by helping you avoid infections, burns, and injuries. Follow these tips to help you care for the part of your body that had surgery and/or radiation:
• Keep the affected area clean. Careful skin care can help you prevent infections.
• Keep your hands, feet, and cuticles soft and moist by regularly using moisturizing lotion or cream. This will help keep your skin from chapping or cracking. Push your cuticles back with a cuticle stick while they are soft (after a bath) rather than cutting them with scissors. Try not to pick at or bite your cuticles.
• Clean and protect any openings in your skin caused by cuts, scrapes, scratches, bug bites, hangnails, or torn cuticles. See “How to care for cuts, scratches, or burns” in the section “Take care of yourself.”
• Watch for early signs of infection, like pus coming from a cut or scrape, rash, red blotches or streaks, swelling, increased heat, tenderness, chills, or fever. Call your doctor right away if you think you have an infection.
• Be extra careful when shaving, and use a clean razor on clean skin.
• Use an insect repellent to avoid bug bites when outdoors. If a bee stings you in the affected area, clean and raise the limb, put ice on the sting, and call your doctor if there are signs of infection (see above).
• Avoid activities that irritate or chap your skin.
• Protect your body, especially treated areas, from sunburn. Use a broad spectrum sunscreen that
is labeled SPF 30 or higher, and try to stay out of the sun between 10 a.m. and 4 p.m.
• Your affected limb might not sense hot or cold as well as it did in the past. Test bath water temperatures with an unaffected limb.
• Avoid extreme temperature changes, such as heat from hot tubs and saunas. If you use a heating pad or ice pack on the affected area, limit the length of time you use it until you know how your body will respond. Both heat and cold can damage tissues and can increase fluid build-up. Some doctors may advise you to stay away from all sources of extreme temperatures.
• Protect yourself against falls, fractured bones, and serious burns.


Be aware of cellulitis.
Cellulitis is an infection in the tissues just under your skin. Signs of this problem include redness, warmth, fever, pain, and flu-like symptoms. Report this urgent medical problem to your doctor right away. See the section “Take care of yourself” for ways to help prevent infection.
Cellulitis can lead to or worsen lymphedema. In fact, if it becomes a repeated problem, suppressive antibiotics may be used to keep it under control.


If your arm is affected
• Whenever possible, have your blood drawn, IVs, and shots given in your unaffected arm. Get flu shots and vaccinations in your unaffected arm or somewhere else. Let all your health care providers know that you are at risk for lymphedema.
• Wear protective gloves with sleeves when doing household chores using harsh chemical cleansers or steel wool, when gardening or doing yard work, and when working with animals that could scratch or bite.
• Wear a thimble when sewing to cut down on needle and pin pricks.
• Use oven mitts that cover your arms instead of hot pads. Be careful when frying foods, boiling liquids, and removing food from a microwave oven.
• Keep pets’ claws trimmed to avoid getting scratched.

If your legs are affected
• Always wear well-fitting, closed shoes instead of sandals or slippers. Do not go barefoot. • Keep your feet clean and dry. Wear soft protective socks (cotton or padded types).
• Dry the creases between your toes after bathing.
• Cut toenails straight across to help prevent ingrown toenails.


Try to avoid pressure or constriction.
Constriction or squeezing of the affected body part may increase the pressure in nearby blood vessels. This can lead to increased fluid and swelling (much like water building up behind a dam). Some people have linked this to the start of lymphedema. Here are some tips to help you with this:
If your arm is affected
• Wear loose jewelry, clothing, and gloves. Do not wear anything that forms a snug band around your arm or wrist. Be sure compression garments fit well and are worn properly. Clothing and compression garments should be supportive and have smooth, even compression.
• Do not use shoulder straps when carrying briefcases and purses.
• Wear a loose-fitting bra with padded straps that do not dig into your shoulder.
• Have your blood pressure taken on the unaffected arm. If both arms are affected, blood pressure can be taken on your thigh. Or, you can ask that blood pressure be measured by someone using a hand pump and stethoscope rather than using a machine; the machines often use high pressures for a longer time.
If your legs are affected
• Avoid socks, stockings, undergarments, or pants with tight elastic bands.
• Wear shoes that fit well.
• Try not to stand or sit in one place for too long (more than 30 minutes). Do not cross your legs when sitting.
• Most people with leg lymphedema benefit from wearing a compression stocking when up and walking around. A compression stocking can help squeeze the lymph fluid through the remaining vessels before it builds up. The stocking must be well fitted to apply the right pressure while avoiding too much tightness near the top of the stocking. Ask your doctor or physical therapist if you should be fitted for a compression stocking.

You can’t change the fact that you have or are at risk for lymphedema. What you can change is how you live your life – taking good care of yourself, making healthy choices, and doing what you can to make your body and your mind feel as good as possible.”

Thank you to the American Cancer Society for this information which is very helpful http://www.cancer.org/ for more information please visit their website…

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Learning to Live with Lymphedema

When ever I see post of people’s experience with Lymphedema I feel it is so important to share by reblogging.. Everyone’s story is personal and different but people need to understand what it is like to live with Lymphedema and the change it makes to people’s lives… Thank you Denise for opening a window to your Life with Lymphedema…. Helen

LymphedivablogWhen the title of this Blog Post entered your Inbox, let’s face it, your heart did not go pitter patter with excitement.  Please try to stick it out!!!  You will learn something and I will attempt to give you a few laughs along the way!   You and your Lymphatic System have something in common–   misunderstood and under appreciated. There are 500 to 700 lymph nodes in the body. Who would think if you have one or a few of those removed, in my case 14, it could cause so much trouble?

My Lymphedema was under control until I picked up those 3 plastic bags of groceries with my impacted arm and then my POOF of Lymphedema came back with a vengeance. Now you cannot yell at me because admit it, you have done it and later regretted it even if you have no chance of Lymphedema.  Who wants to…

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Just Whining

This is Estherlou’s story of living with lymphedema. Thank you for sharing this intimate story of how this affects you.

Estherlou's Blog

Nighttime  is not my favorite time. Sometimes I actually dread it. Most of us look forward to lying down in bed and getting our rest and our sleep which keeps us healthy and readies us for the next day. Me, I have some issues which keep me from enjoying bedtime. I have lymphedema. That means that my lymphatic system doesn’t work as well as it should anymore and doesn’t remove the fluids from my lower extremities like it needs to. Untreated, that means my legs can swell, sometimes to twice a normal size, fluid can build up within the tissues and I can develop cellulitis which is an infection of the skin from the “leftover” and stagnant fluid left in and under the tissues. Sounds nasty, right? Well, now I wear compression hose to help keep all that in check. I haven’t had a case of cellulitis since I was diagnosed…

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A light at the end of the tunnel!

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Can I see the light?…Google images

I started my day today with the Physio for Manual Lymph Drainage and to see how things were going. This week I had not used the Ready Wraps and had worn my compression stocking instead. I had felt that the Ready Wraps were pushing the fluid from my knee downwards instead of up and away!! I had also decided to just do the walking I needed to do this week, not strengthening exercises or stretching of the knee. This was because I am not sure if the extra exercise was causing the knee to swell rather than being Lymphoedema. We did not do any measures today but the Physio felt that I was actually getting a visible knee and less swelling. Next week we will measure again and hope to compare these to pre surgery measurements. My leg is soft and there is no pitting, so this is good, but is it due to Lymph nodes or all the treatment I am getting!!!

Next it was off to the imaging department and the ultrasound I had been dreading. Could they see any viable Lymph nodes in the transferred tissue? As always my surgery was of great interest to the technician, as a first at Macquarie Uni Hospital.(leg) The  lady had lots of questions, which at least helped to calm my nerves. She then started to do the ultrasound on my knee and I could barely breathe…
“I think that’s one there and it’s working hard.”
Oh my goodness what a relief I could feel the tears coming but managed to hold it together. The technician then went and got two of the doctors to come and have a look. They thought that maybe there were two lymph nodes and asked how many had been transferred, but I did not know that, I thought it was usually only three or four to protected the donor site. They said because there was fluid present it was difficult to tell but they thought two… Well that is much better than zero…. My story continues!!!!

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Coming out of the darkness.. Google images

A light at the end of the tunnel, after all that I have been through, was more than I hoped for. I emailed my doctor and told him to expect a report and I wanted to hear the results before I see him next Friday!!

Primary Lymphedema.. Jessica’s story..

Lymphatic system

Lymphatic system (Photo credit: Wikipedia)

Primary lymphedema is a rare, inherited condition caused by problems with the development of lymph vessels in the body. Primary lymphedema occurs most frequently in women, it can be divided into three types.

Milroy’s disease (congenital lymphedema). This is an inherited disorder that begins in infancy and causes the lymph nodes to form abnormally, leading to lymphedema. This is responsible for between 5-10% of cases. It affects multiple limbs  and other areas.

Meige’s disease (lymphedema praecox). This hereditary disorder often causes lymphedema in childhood or around puberty sometimes in the 20s. It causes lymph vessels to form without the valves that keep lymph fluid from flowing backwards, making it difficult for your body to properly drain the lymph fluid from the limbs. This accounts for 75-80% of cases  and affects usually one leg and often just the foot, calf or ankle.

Late-onset lymphedema (lymphedema tarda). This occurs rarely and usually begins after age 35. This late onset Lymphedema effects about 10% of cases.

World wide there are millions of cases of Lymphedema but often they go untreated or undiagnosed. All types of primary lymphoedema have inadequate lymphatic drainage. The cause is not well understood, it is probably due to genetic faults or from abnormalities that occur in the development of the lymphatic system during gestation.

This is Jessica’s story of living with Primary Lymphedema from a young age and the impact it has on her life.  English is not Jessica’s first language  so I have edited some but not all her words.

“The year I turned Nineteen left an unforgettable mark on my life. My father died suddenly and I was taken by surprise, I was confronted with the strange path of fate and the unbearable feeling of the irreversible…Years later I would realise that in the same year I would again be confronted by something irreversible…. Primary Lymphedema.

Some months after my father died, my friends tried to cheer me up and we went together on holiday. It was a hot summer, I had some insect bites also before my trip I was working in a restaurant, to earn money for the holiday. During that time I noticed that my feet were swollen….but off course nobody knew what it was and nobody took it seriously.

Later I was diagnosed with primary lymphedema in both legs, at the time I was very frustrated with that diagnosis – although I did not really know the consequences then. I thought it was just horrible to have swollen feet during the summer… When I think of this now, it just sounds stupid… I would gladly to have that situation now!!

Eight years went by and somehow I adapted quite well: in fact most of my friends never noticed. Twice a week I went to the physiotherapist for manual lymph drainage and during the summer I had to wear some kind of compression stockings but only occasionally. The only thing I could not do was wear high heels during summer… so hello flip flops! I spent my years quite care-free: going on long adventure trips, working long days in the restaurant to pay for university and my holidays!

When I finished my degree I started working but on my way home one day I had an accident and I fell on my leg. It started to get swollen but I thought it was temporary and although I had a major infection I did not stay home from work. However as time passed I started to worry, doctors told me it would get better, but that due to my history of primary Lymphedema it would take more time. Six months of intense taping, bandaging, MLD and swimming, did not help it was still the same. I started to panic and visited lots of doctors and all they had for me was bad news, bad news and more bad news. That’s when I found out about the true burden of having primary Lymphedema ….. nobody knows anything about it…and you get the feeling you are the only person in the world with it.

I had lots of testing done, and people were freaking out about it. Visibly I have no big signs (except for my one leg), but the tests showed I have huge problems in both legs… When you are lying there under the scanner praying to get good news once, but the doctors think the scanner is broken because there is nothing to see… then you know that you have troubles.

Some of the things they said are still wandering around in this little head of mine:

“I do not know a lot… but I know that for 100% it will get worse.”
“When you will have kids, it will get much worse, you know.”
“And when you have kids, it is possible that they can have this too, because it is
genetic.”

Ohhhh! Thank you for the information! That makes me feel …. really desperate….!!!
But to stay positive, because I will not give in to this situation. What exactly can I do about it to get it better?

“You can do a lot of things, but it will not get better.” Oh!
“But you can stabilize it… With MLD, wear your compression stockings from when you
get up till you go to bed, swim a lot etc.”

Oh!

“And there are a lot of things you can avoid, so it will not get worse!!!”

Oh!

“Be careful with mosquito bites, long trips, alcohol, long standing, heat, warm baths, sunburn, avoid sunbathing, walking barefoot, scratches etc!!!”

Ohhhhhhhh!!!!!

Basically do all the boring stuff and stay away from the fun stuff!!!

I thought my life was over, I could never live with this new situation, but a year and a half later I managed to adapt somewhat to this new concept. The mind is strong and flexible and is the most intriguing thing I discovered the past year. What do I miss? What I miss the most is to be able to live care-free as I used too. I never thought I would miss getting out off my bed, seeing the sun and walking barefoot into my garden.

I might find a solution one day – hopefully but things will never be the same just because I know what I know….But then again I am grateful that I got to live 19 years care-free, unlike some children who are born with this…I started to check the internet and I saw the most frightening stories and pictures… I did not know what to do. That is how I found out about the lymph node transfer … and I jumped on the other roller-coaster a search for a solution!!!” Jessica..

Thank you Jessica for sharing your story.. It is not easy to put into words the daily struggle to find a balance and still live a fulfilling life. Jessica has been in touch with Dr Corinne Becker in Paris and may have a Lymph node Transfer in the future, but it is not an easy decision.

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Looking after your Lymphedema.. Bandaging kit.. Photo Helensamia

When things don’t go right!

Lymph node Polski: Węzeł chłonny Русский: Лимф...

Lymph node Polski: Węzeł chłonny Русский: Лимфатический узел Nederlands: Lymfeklier (Photo credit: Wikipedia)

Cellulitis has been the bane of my life, for the last 11 years, at a time when I had hoped to be rid of it for ever it has reared it’s ugly head and maybe ruined the party! In saying that I am not really expressing the depths of my anguish or the fact that I find it very difficult to write this post.

On Friday I had an appointment with my doctor for a six week check up after my surgery. During the week I had been concerned that the knee was not reducing from the post surgical swelling and that the transferred nodes at the side of the knee were raised and firm to touch. The doctor was equally concerned and felt that there may still be some infection present and once again prescribed more antibiotics for the next month. This in itself would not appear to be a problem, but what I did not know is the infection can damage the transferred Lymph Nodes, causing theme to “die.” What a shock, this was a side effect I had not heard of prior to surgery, nor can I find anything written on this subject. The reality is that all I have been through over the last few weeks may all be for nothing. I find it very difficult to deal with this and though it is not definite yet I am very fearful that it will be so. I am to have an ultrasound at the end of May and see the doctor again on the 7th June, I will then know if there are any viable Lymph nodes present in the transplanted tissue.

I find that my emotions are very up and down at the moment, it has been hard to pull myself out of a black hole I fell in on Friday, however I have to keep moving forward. On the positive side I can start to do more exercise, I am allowed to do what ever I feel physically capable of which gives me some focus. My goal is to re build my fitness to pre surgery levels and to reduce the swelling in my leg back to pre surgery measurements. I am going to have regular MLD and have ordered a set of Ready Wraps for my left leg so I can work on this. I cannot change the results of the ultrasound but I can control other aspects of my life. Until the results are final there is always a glimmer of hope!! Well that is what I keep telling myself!! ( I can almost hear my counselling voice talking to me!!!)

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Lymph node photo Wikipedia

In starting to write this blog I promised to document my journey with Lymphoedema and “My lymph Node Transplant.” I wanted it to be a personal account rather than a medical one and to share others progress along the way. I wanted to bring together the community of Lymphies and bring some hope for the future, if not now then a few years time, every new surgery has to start somewhere. Think about when we heard of the first heart transplant, now they are common place. What ever the outcome for me I have no regrets in making the decision to go ahead with surgery, if I had not I would have always wondered if it would help. I really love writing this blog, it helps me and I will continue as the story is never over!

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Cockatoos feeding on berries.. On my walk today.. Photo Helensamia

Liposuction News

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Preparing for liposuction.. Getty images

Liposuction helped shrink my agonising swollen leg: How lipo is relieving a chronic lymph problem affecting thousands.

By ANGELA BROOKS PUBLISHED: 00:17 GMT, 21 August 2012 | UPDATED: 00:17 GMT, 21 August 2012 Daily Mail…. Mail online

‘My leg was so big, it was hard to bend it,’ said Roisin Gallen By the time Roisin Gallen received treatment for chronic lymphoedema, her left leg was twice its normal size. The divorced mother of two, normally a size 12, had to wear size 18 trousers nipped in at the waist. ‘It was like having elephantiasis,’ says the 45-year-old who lives near Belfast. ‘My life was terribly restricted. ‘My leg was so big, it was hard to bend it. ‘It was like walking with a large, inflatable pillow strapped round it.’ Roisin’s lymphoedema was set in train by treatment for cervical cancer in 2001. This included having a hysterectomy, where lymph nodes in her groin were removed to stem the spread of disease, followed by radiotherapy.

Up to 250,000 people in the UK suffer from lymphoedema and key triggers for the devastating and often disfiguring condition are surgery and radiotherapy where lymph nodes are removed or damaged, particularly in breast, prostate and gynaecological cancers. Lymphoedema is a swelling in a limb as a result of damage to the lymphatic system, the body’s waste disposal system. The lymphatic system plays an important role in the immune system, removing bacteria and waste from the tissues through a fine network of vessels carrying a fluid known as lymph. This travels to the lymph nodes, where it is cleansed. If the system is compromised — as can happen as a result of both cancer surgery (where the nodes are removed) or radiotherapy (which can create scar tissue that blocks the lymphatic channels) — unfiltered lymph fluid becomes trapped and forms pools, causing swelling. This can begin anywhere from a day to 30 years after surgery — it’s not clear what sets off a delayed response.

Six months after the operation, and for the first time in more than a decade, Roisin’s legs are the same size, and she’s back in size 12 clothes As well as swelling, this trapped fluid puts patients at high risk of potentially life-threatening infection such as cellulitis, an infection of the tissues. Something as innocuous as a graze can kick this off, as toxins can build up in the body. Roisin’s GP initially mistook the swelling in her ankle a few weeks after her cancer treatment for simple fluid retention — an all-too-common occurrence. Her condition was diagnosed five months later by a physiotherapist and she was given a compression garment to prevent fluid build-up as well as specialist lymphatic drainage massage to ease the fluid out. This stopped when the physio went on maternity leave. Like many patients, Roisin was to learn that treatment for the condition can often be patchy. For the next two years she was on a waiting list for treatment, with her condition worsening. She then contracted cellulitis, which fortunately responded to treatment but she was warned to go straight to hospital if it happened again. By 2009, Roisin’s condition was so bad she was referred to a vascular surgeon, who pronounced her condition ‘too far gone’. ‘He said there was nothing he could do for me,’ recalls Roisin. ‘By this time, I was in constant pain and couldn’t bend my leg at the knee.’ She could only walk by leaning on her right leg and swinging the left leg forward. ‘I couldn’t shave my legs in case I got a skin nick and infection — you have to be careful not to get a mosquito bite for that reason. ‘My feeling was that I’d honestly rather lose my leg than stay like that.’

Then, by fluke, she heard about specialist lymphoedema liposuction being carried out by plastic surgeon Alex Munnoch at Ninewells Hospital in Dundee. Although the treatment is approved by the National Institute for Health and Clinical Excellence (NICE) for chronic lymphoedema, there are very few surgeons practising it, and getting treatment paid for by local health trusts can prove very difficult. Roisin underwent the treatment in March this year. By then the watery fluid in her leg had become a hard mass — almost, she says, ‘like putty left out to dry’. An arm or leg with chronic lymphoedema won’t just be puffy with excess fluid, explains Mr Munnoch. ‘It will be puffy from fluid and excess fat because the lymphatic fluid is rich in proteins and stimulating hormones which activate the production of fat.’ The surgery involved creating 14 holes in Roisin’s leg using the specialised, extra-fine tubes necessary for lymphoedema liposuction. The hardened protein and fat was then removed in the same way as with liposuction. Six months later, and for the first time in more than a decade, Roisin’s legs are the same size and she’s delighted to be back in size 12 clothes. The drawback of lymphoedema liposuction is that it does not cure the underlying disease, so she will have to wear the very tight compression garment day and night for life to prevent fluid build up in the future. ‘People ask me whether it bothers me that I have to wear the garment — and it’s tight and hot in the summer,’ she says. ‘But I would honestly wear six of them at once if I had to rather than go back to how I was before my liposuction.’

Until now, the underlying causes of lymphoedema have been regarded as irreversible. But now two remarkable pioneering surgical techniques that put a potential cure within sight have just started to become available in Britain. In a healthy person, the lymphatic fluid drains into blood vessels after being filtered by the lymph nodes. New imaging techniques are revolutionising lymph bypass surgery. This involves pinpointing healthy lymphatic channels and re-routing them by stitching them into the blood vessels, bypassing blocked lymphatics. But with some lymph vessels no more than 0.2mm wide, this is technically challenging microsurgery, explains Kelvin Ramsay, a plastic and reconstructive surgeon at the Royal Marsden Hospital, London. First, dye is injected into the patient’s hand and it’s then taken up into the lymphatic system. Surgeons turn out the lights and use a near-infrared camera, which lights up the microscopic lymphatic channels. This shows clearly which channels are blocked so that only clear channels are grafted on to blood vessels.

There’s also lymph node ‘transfers’. These aim to kick-start the lymphatic system by harvesting lymph nodes with their own blood supply from elsewhere in the patient’s body and plugging them into the armpits of breast cancer patients who have lymph nodes cleared or damaged by their cancer treatment. As soon as the transferred lymph nodes are connected in the armpit, they start releasing substances that encourage the growth of new lymphatic vessels as well as the old pathway to open, says Anne Dancey, a plastic and reconstructive surgeon at the Queen Elizabeth Hospital in Birmingham who has already performed 25 lymph node transfers. The hospital is now starting a clinical trial comparing lymph node transfer to standard treatment with specialist massage and compression garments. As with the lymph bypass, before the transfer, dye is used to flag up the blockages. ‘My patients have been able to get rid of their compression garment and that is life-changing for them,’ says Ms Dancey.

Read more: http://www.dailymail.co.uk/health/article-2191175/Liposuction-helped-shrink-agonising-swollen-leg-How-lipo-relieving-chronic-lymph-problem-affecting-thousands.html#ixzz2RestjUp2

Another great write up by Angela Brooks for the Daily Mail ….. Thank you for bringing awareness to the needs of those with Lymphoedema.

Liposuction for Lymphoedema is available in Australia, England, Sweden and USA plus other countries, but remember you must always wear compression garments after surgery.

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How is Sue going in the USA?

I thought you may like the latest update from Sue in the USA.. I have copied from the email she has sent so the words are her own… Thanks Sue glad you are progressing well.

English: Seal of the city of ,

English: Seal of the city of , (Photo credit: Wikipedia)

Well the drains were taken out on Friday — one two three, breath in, blow out and bam-o they are out! The feeling of freedom is beyond description! My pain level is really like a one on a ten scale. I get some tinges of pain in the incision sites. I have about a five inch incision on my left side, under my arm pit, a few inches below that, and one on my left upper thigh. There is no flap visible. The skin is glued together on the thigh and I have steri-strips, no cloth stitches, on the left side incision. The left leg is the affected one. As I think you know, I developed lymphedema almost one year to the day following my total radical hysterectomy as a result of uterine cancer. My surgeon had not warned me of this condition, and I knew of no precautions to take to avoid it. I believe I bumped my leg getting into the shower one morning, and that is when shortly thereafter I noticed a slight swelling in my left leg. I was able to manage it well with initial bandaging, manual lymphedema drainage therapy and the daily use of the compression pump. However, a bout of cellulitis (my only one) in August of 2012 did a number on it and my leg swelling never returned to its pre-cellulitis condition.

I am now feeling some tingling in my leg, which I don’t know is just the nerves waking up or maybe some action happening with the transferred lymph nodes. I had two difficulties to bring to your attention. First, when I tried to put on my compression hose (I was just measured the day before the surgery so I know I have the correct size — extra large), I found that they caused immediate swelling and collection of fluid so I threw those off as soon as I could pull them up. Oh what a joy that is. Then I tried to use my compression pump and really felt it caused more swelling. I find that doing nothing but elevating the leg and moisturizing it is the best thing for me.

Do you use a pump? I know you are using your compression hose but did not remember any info on your blog about the pump. Some doctors are against them. I have to tell you my surgeon, Dr. Kanchwala at the University of Pennsylvania Hospital in Philadelphia, Pennsylvania, is not real knowledgeable about lymphedema. On the day of surgery before they took me into the operating room, I asked him about the compression hose and pump usage. He said, oh we can put you in your compression hose right after surgery and you can start the pump on Monday (two days post surgery). Well I guess he forgot that it would be a little hard to get those darn thigh highs up over the drain sticking out of my thigh and to wrap the compression sleeve around the drain. I see him on Thursday, 4/25, and I will have to give him a little education. Being a surgeon, he is not that up on lymphedema, he just knows how to transfer the nodes!

I had some depression following my use of the pump. Only because I was scared that I did something to mess up the surgery. But it appears everything is okay. I have a nurse who comes in – last week every day and this week just three times and I will be done with her — and she is measuring my leg. Last Monday, my knee area was 17 inches and now one week later, it is 15-3/4 inches in circumference. The ankle swelling is a lot slower, going from 11 to 10-3/4 inches in a week. But Helen, I will take any reduction in size.

This morning I woke up and heard a little reminder in my head — Be patient. This is not going to happen overnight. So I am learning to be more patient with results.

Now that the drains are out, I have only a bandaid on both sites. I have thankfully not experienced any infections at either site. I am taking an anti-biotic twice a day.

Before I had my surgery, I asked Dr. Kanchwala about the possibility of acquiring lymphedema at the site of the node removal. He said it would not happen; that I may have swelling for about six months. So far no swelling. In six months, if this surgery is successful, he will consider liposuction to remove all of the accumulated fat and protein in the leg. I hope this can happen but right now don’t want to get my hopes up too high.

I will report on my doctor’s visit. I am hoping he will order manual lymphedema drainage therapy for me. That should also help. I also may wrap my leg with bandages to see if that will help between now and hopefully getting therapy.

Please make sure everyone knows, as you have been doing — this is a slow, slow progress type of surgery. The results may not be apparent for months or even years. So you and I are hanging in there!.. Sue

Thanks Sue and we await your next update after your doctors visit.

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Bondi to Bronte walk… Photo Helensamia