Update from Loretta

imageI’m doing well I keep saying I owe you an update but time flies by! I was at my therapist yesterday and she measured me and I am smaller than the last which was in September. Overall much smaller than before the surgery.😊My thigh is “normal ” but where he implanted the nodes in my calf is a little bigger. You would have to look hard at my leg to see the difference.
I stopped wearing a tribute at night and decreased my stocking compression to a class 1 from a 3, BUT I still wear my ready wrap on top of the stocking.
The end of January I am scheduled for my one year MRA and beginning of February a Lymphocintigraphy, excited to see how my babies are performing!! I see my surgeon after the testing.
Hopefully he will tell me to get rid of the wrap and start with a higher compression stocking to make up for the loss of the wrap.
All in all the surgery seems to be working for me and hopefully I continue to see results.
You can share this on your site and if anyone would like to contact me I would be happy to speak to them.

This is a link to her previous post at time of surgery

https://lymphnodetransplant.wordpress.com/2016/03/12/the-unwelcome-guest-part-two/

Even though there are not many new posts this blog is always being monitored and someone can answer questions …love to hear your stories always ..plus I reblog any interesting posts from others on lymphedema…

Copyright © 2013-2016by Helensamia. All rights Reserved.

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My Invisible Disease by Michelle

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When the invitation came to “Write your Story” as part of Lymphoedema Awareness month, my initial thoughts were ‘I don’t know where to start, it will be too long and boring, do I want to go over all that again’. It’s such a mixed bag – it has been painful, presented many challenges and also some good opportunities, like connecting with all of you now!

Long story short, I had endometrial cancer 13 years ago, I recovered and five years on I felt like I’d passed through the ‘danger zone’ and was doing fine. I went to some hot springs, got in to sooth a sore back and the next day my leg began to swell. That was almost 8 years ago.
I knew what it was because I’d been given a sheet of paper when I left the hospital warning me to watch out for signs of Lymphoedema. I just didn’t realise it could appear so long after my surgery.
What I have found out about lymphoedema in the last 7 plus years has taken determination, courage and a tenacity to not give up in the face of consistent messages that there’s no cure, your only options are DLT, MLD, compression garments, and don’t get bitten by anything!” Like probably most of you, felt reluctant to take that lying down and so started the long search! I did find other things that would help along the way, like hydrotherapy, rutin powder and a low carb diet, to name a few. I’ve also been assessed as suitable for LNT but at present the only surgeon doing this surgery in Australia is not comfortable with transferring to the groin, which is where they need to go to make a difference for me.

Which brings me back to, how do we stay positive and not give up when the doors turn into walls? Rather than go into the physical aspects of the struggle with lymphoedema what I really want to talk about is how it impacted me emotionally and psychologically. Just in case I’m not the only one 🙂 First was the impact of realising that ‘I’ve got this thing but no one seems to know much about it’. GP after GP stared blankly when I said I had lymphoedema. I found a massage therapist who had been trained in lymphatic drainage massage and had developed a small business providing massage, bandaging, compression garments and creams etc. I had to travel 7 hours by car to see her. None of this was subsidised and represented a substantial cost upfront and ongoing. I wrote to Lymphoedema experts to see what else I could do. I ended up frustrated because the bottom line was, there was not much other than the standard maintenance therapies that seemed to work.

I recently asked myself, what is it about lymphoedema that makes it so invisible as a condition within the medical model? I’m not sure, but I’ve wondered if lymphoedema is seen as a blip in the otherwise positive story of saving people from cancer? Perhaps medicine doesn’t really want to acknowledge that a surgical intervention may have created something worse than what it was trying to cure. I’ve had people say to me ‘well, at least you survived’ and this is true but it’s not the whole story! And this is the main point I want to make, it takes an enormous amount of inner strength to keep moving forward when you’re left alone to find your own solutions, cover the cost of treatments and garments, deal with the constant worry of cellulitis, the sense of isolation from your healthy friends and wondering where will this all end, how will I manage old age? At times this has felt truly overwhelming!

One positive thing my GP did recently when I went into a mini melt down during a visit, was to suggest I have a mental health plan (in Australia this is subsidised sessions with a psychologist). At least mental health is subsidised! I mean, initially I was horrified. The GP thinks I’m nuts!!!! But the truth was that I was starting to sink under the struggle of being an ‘invisible’ person with an ‘invisible disease’. So I went along for a session and it turned out that this psychologist specialised in Mindfulness meditation. I signed up for an 8 week course and that made a huge difference to how I was coping. I still struggle at times but meditation gives me a reprieve, a place to let go of the struggle. I’m not saying meditation is for everyone. It seems there are as many things that help as there are people with lymphedema. The main thing for me really was to acknowledge that I was struggling and that I had become isolated. Having people who understand you is so important. Forums like this blog site are good for breaking down our isolation. I’ve come to see how important that is!

My hope is that there will one day be proper resources allocated to lymphoedema, that others will not have to spend years piecing together a picture of what will help them cope. I hope there will be good emotional support for those facing life with lymphoedema, more research and clinical trials of possible solutions.

In the meantime, it’s good to know you are all out there. I’ve been so impressed and inspired by people’s stories of courage on this blog site! By Michelle

Thanks so much Michelle for sharing your story with us prior to Lymphoedema awareness month.. Helen

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Put this date in your Diary and sign the petition

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Put this date in your diary… March 6th 2016 will be World Lymphedema Day… The whole of March is Lymphedema awareness month, there is a push to have Lymphedema recognised by the various government health funds. In March there is the opportunity to give Lymphedema a voice. We need to speak out and tell our stories so that people understand what it is like to live with Lymphedema 24/7, if we do not speak out people will not understand how difficult it is to live with every day of your life. Lymphedema can be both secondary and primary, every person is different in how it affects them. Primary is caused by a fault in the lymphatic system that you are born with, sometimes it manifests at birth and in others it may start during puberty or even later in life. Secondary is caused by the removal of Lymph nodes during surgery, radiation or trauma to an area of the body. Lymphedema can affect one or two limbs or the whole body, there is a very wide range of how serious lymphedema is for each person. Millions of people have Lymphedema world-wide and many are hospitalized due to infections and other health issues caused by the Lymphedema.

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What can you do in March to add your voice? If you stay silent and hide it will do nothing and nothing will change. Money is needed for research into understanding the lymphatic system. Maybe you could have a fund-raiser and donate the money to your local Lymphedema charity. Can you tell your story in a local paper? Can you share information on Facebook, twitter, Instagram or any social media outlet? Look out for what is happening in your country or local area and get involved.

I am happy to share your stories in the lead up to March. Email me on helenbrd@bigpond.net.au and send me your story of what it is like to have Lymphedema.

Do not stay silent. You do not have to use your own name if you would like to remain private but still tell your story.

Lets make this March and March 6th a very special time for those with Lymphedema…

Lets build awareness and understanding lets raise the much needed funds for research.

Lets make governments hear us and give better coverage via health funds.

Lets make a difference..

PLEASE SIGN THIS PETITION SHARE SHARE SHARE https://www.change.org/p/white-house-u-s-senate-u-s-house-of-representatives-world-health-organization-united-nations-global-leaders-declare-march-6th-world-lymphedema-day?recruiter=30211120&utm_source=share_petition&utm_medium=copylink

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
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A Catch up

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Just a quick catch up to show you my legs early in the morning … The left leg had a lymph node transfer 2 years and 8 months ago from neck to knee.. As you see the calf ankle and foot are looking good in the morning and yesterday I did not wear a compression stocking. However due to my “Life in a Wheelchair” https://lifeinawheelchairblog.wordpress.com/about/ by the end of the day my ankles and feet swell because of all the sitting!! My Lymphoedema leg is worse but fortunatly they do go down over night. I sometimes feel quite sad that having gone through everything to try to improve my lymphoedema that another health problem, lumbar plexopathy,  comes along to make things difficult. I am quite sure that had I not been in a wheelchair this surgery would have been a great success, in fact I do believe that without it my leg would be far far worse sitting all day. One thing I looked forward to after my LNT was to wear some fancy shoes but other than first thing in the morning my feet do not look good in sandles or little danty shoes!! How ever I found these little ankle boots that buckle up from top to bottom and stop the swelling.image

 

This is also an adaptation for my legs being paralysed. During the winter I love to wear boots but I had not realized that my toes were curled under, as I put them on, causing a pressure sore. These little ankle boots ensure that does not happen as they open all the way to the bottom and I can make sure my toes are straight. So if nothing else I am learning to adapt and find ways that help my Lymphoedema even though I am in a wheelchair. I also elevate as often as possible, move my feet and ankles by rotating them with my hands, also bending my knees and I never forget to do some deep breathing, anything that helps!!

Today I got a call from the physiotherapy department at the local hospital for assessment. I hope that they will not only give me exercises to strengthen my upper body but also those that help the lymphatics. Today will also be an indoors day, as it is 38C, as we all know that does not help lymphedema.

How are you all progressing? Do you have a “catch up” for every one? Please add as a comment or email me so I can create a post for everyone to share helenbrd@bigpond.net.au

Happy Thanksgiving to all of you celebrating..image

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Thank you so much! :)

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Thank you, thank you so much for all the support you have given me in the creation of my New Blog, it has been just amazing with over 500 views in just one day. I have also had many, many beautiful messages of support and encouragment which have really lifted me. When I started to blog I had no idea how it would go, if there would be any interest but it has spread across the world and is now read in 127 countries, truly amazing. There have been nearing 100,000 views and 272 posts. Many if you have created posts for me and I hope you continue to do so. Just email me at helenbrd@bigpond.net.au to share your story. I would still love to hear from someone who has had the lymphatic lyposuction, SAPL proceedure.

I would also like to ask everyone no matter where you live to encourage your goverment to give support to Lymohoedema. It has been far to long that Lymphoedema has been ignored by goverment health programs. Everyone should have access to the treatment that they need and the garments that they need to wear. The burden should not fall to the patient, in which case many do not get the care that they need and the Lymphoedema becomes worse and worse. Please give Lymphoedema and voice, a loud voice. Lets hope that more high profile people like #Kathy Bates start to speak out instead of hiding their problem. We have become a “cyber community” of fellow lymphies who are there to connect and support each other, we are no longer alone or silent.

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

My New Blog

imageI am sure you are wondering when I was going to write again!!! I am sorry I have been rather slow at creating new posts. A few weeks ago I wrote “Sometimes Life does not go as you Expect,” which explained what had been happening in my life over the last six months. These events have really turned my life upside down but lately I have started to feel more settled and have felt the need to write again. Writing for me is a form of mindfulness that helps to keep my head a little quiet!! The last few days I have been thinking of how to approach my blogging and have decided to create another blog that embraces my new “Life in a Wheelchair”

Do not worry though as I will still continue this blog, “My Lymph Node Transplant,” as I believe it has become a wonderful resource for all those with Lymphedema, especially those who are considering surgery or who have had surgery for their Lymphedema. I love all the interaction that happens between people in the comments and the emails that I get from people. Please still continue to send me your stories so that I may post them, as by sharing our experiences we help each other. We have truly become an online community.

Just to keep you up to date with my own LNT which was now two and a half years ago. My leg is going well even though not an ideal situation in the wheelchair all day! My leg has good shape, knee and ankle bones show. I wear no compression at night and not everyday. I can go for a while without and then I wear it for a few days and it goes back to normal. Me leg is very soft, which is important, as that means fluid can be moved where fibrous tissue cannot, also still no infection which for me is a huge plus. My ankles do swell by the end of the day, due to sitting in my wheelchair, but this is Oedema rather than Lymphoedema, this swelling goes down each night. So I am happy with the results, not a cure but much better control and response to compression, MLD and elevation. This surgery is not suited to everyone but there are other options available now, lymphatic Liposuction and Lymphatic bypass. There continues to be improvement all the time as the surgeons become more experienced and document their work.

If you would like to follow my new blog then this is the link https://lifeinawheelchairblog.wordpress.com There have been a few teething problems with setting up the blog and some people have had difficulty following, I hope these are all resolved now, you do need to follow the new blog separately even though you are following this blog. I look forward to sharing my new experiences with you. Wishing you all well, Helen xx
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Elizabeth shares her lead up to Surgery on 19th June

imageThis is the latest update from Elizabeth who will be having surgery with Dr Chang on 19th June… I am sure that we all wish her well and thank her for sharing with us her progress…

“I am beginning my countdown to June 19, 2015 which is my surgical date for a lymph node transplant and the lymphaticovenous bypass with Dr. David Chang at the University of Chicago Medical Center. I initially found out about Dr. Chang from this blog on which I am presently writing. I am so grateful for the support and the commeraderie I have received on this blog-The tears, feelings of hopelessness/helplessness, not to mention the loss of body image was something I had not experienced before. Once I read about Dr. Chang from this blog,(he was originally from the MD Anderson Cancer Center in Houston, Texas) I felt my first rays of hope. For this reason, I vowed that I would share my story so that I could help others–so others will not give up searching for a more permanent solution instead of the countless conservative measures that we Lymphies must endure.
I want to share my experience as I go along so I don’t forget anything.

I went for an evaluation with Dr. Chang in September-a lymphoscintigraphy is a test where dye is injected between the toes to determine where the lymph nodes stop draining. After being told that the drainage in my left leg stopped at my knee, I knew I wanted to have the surgical procedure as soon as I could work everything out with my place of employment. I researched to make sure Dr. Chang was in my network for my health insurance, and Thank God he was as was the surgical procedure.

Dr. Chang emailed his research to me so that I could understand the procedure and what my chances were of getting back to “NORMAL”-All I want is to get my left leg measurements to be similar to my right leg, (which is still normal). The difference in measurement of my left leg to my right leg is about 2 inches bigger in the left thigh, 1 1/2 inches bigger in the left knee and about 2 inches bigger in the left calf. I have been applying wraps, compression garments, bedtime garments, MLD-you name it, I have been the most compliant patient but I really need a more permanent solution—In order for me to put on the Elvarex 1/2 panty 40 mm of mercury compression stocking, I have to sit on the floor with a pair of Playtex purple rubber gloves and pull up this thick stocking even when it is 95 degrees outside. I wear the stocking under my blue jeans as well as under the spandex I wear to the gym. Now finally, even though I know this is a chronic condition and I will always have to wear a compression stocking, I am hoping the amount of compression will decrease after the surgery. Maybe I’ll be able to wear a jobst compression panty hose that has 20-30 mm of mg compression instead of 40 mm. Everyone needs hope-The vascular surgeon here in CT that I confer with occasionally, told me that I should speak on the topic of lymphedema since I have researched this topic so much and feel so passionate about it. While I don’t feel knowledgeable enough or confident enough to talk to a group of people about lymphedema, I would love to help anyone get past the emotional aspect of this chronic disorder. I would love to give this disorder a face-

A short time ago Sandra Lee from the cooking channel told the world that she was having a bilateral mastectomy. My heart goes out to her because everyone who has cancer will have lymph nodes removed. With the removal of lymph nodes, comes the possibility of LE. I will continue to post information so that I may help others who may be thinking about this procedure. Please Pray for me. God is listening.”

Thank you- Elizabeth

We wish you all the very best on the 19th June… Rest and heal after… We look forward to hearing your progress. Take care Helen

Singapore Lymph Node Transfer

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One of the things I have enjoyed since starting this blog is “meeting” others via cyber space and social media. I receive many emails from those thinking of surgery, or those having surgery, many ask questions and others tell me of their experience. In November I had an email from Thomas who was due to have a LNT and LVA in Singapore. The Lymph node Transfer was from the neck to the knee and the Lymphatic Venous Anastomosis was to be used where needed. LVA is a procedure where the Lymphatic vessels are joined to a vein to drain the lymphatic fluid. Thomas has kindly allowed me to share his emails in the hope that it may help others who are either going through or thinking of going through this surgery. There is very limited documentation especially from patients and every story helps in the search to cure Lymphoedema.

Thomas’s story starts 22nd November 2014

Thanks, I am glad that my wife found your blog it gives me hope. I initially thought I would be living with an enlarge left leg for rest of my life. I am open to sharing my experience to encourage lymphedema patients. I know there is so little known, treatment information is not readily available. I was living with this condition for pass 15 yrs! I did not know about treatment until my 3rd bout of cellulitis. I had to be admitted for antibiotics IV, I wish I had known earlier about the surgery.

My operation is to be done by two surgeons. Prof BK Tan and Terence Goh. The Prof will do my neck while Terence the groin. I understand that they did 15-20 such cases over the past 2 years. There is this lady in her 60s or 70s had it done on both legs. They wanted me to meet her prior to my decision, she said there was considerable improvement. That gave me confidence. I am having my operation in Singapore General Hospital. There will also be a guest surgeon from Okinawa, Japan here to observe the surgery.

I think that the physiotherapists play an important role here for me too. They are very well train by the Austrian school (Vodder School)…. the “mother of all lymphedema treatment”. I already see results from the compression bandage.

Please continue your blog for as long as you can , as I think it provides us with support. I am confident that I have little fibrosis, but since my operation that removed my pelvic nodes, more than 15 yrs ago,  I am concern about the effectiveness of LNT and the success of finding good lymphatic vessels for LVA. It is an anxious time!!

23rd November

The doctors will be doing LNT from my neck to groin area, so it will be a long journey for the lymphatics to grow! As far as I know the Dr will be using dye to trace my lymphatic system, so keeping my fingers all crossed that everything will go well for me.

I am currently having bed rest in the hospital to prepare for the operation. I do the massages that the physio taught me. I hope to be in good condition for the operation on Tuesday. Only small problem is the rash on my outer thigh caused by bandaging last week. I am using tubi grip for my calf and leaving it to heal before the surgery. The aim is to reduce the fluid in the leg pre surgery to give the best chance of success.

29th November

Today is the 4th day after my operation. I am getting stronger by the day. I have been ordered to continued bed rested.

I only had one LVA done near the groin. According to the doctor they wanted to see if the LNT is working properly before they do further LVA, which I think kind of makes sense. Anyway they told me that LVA near the ankle may not be effective due to the pressure caused by gravity, it could dislodge the connection, but another doctor advise me that the Japanese surgeons swear by LVA, but to be effective there needs to be a few done on the limb.

The doctor told me that there was a lot of lymphatic leakage when they cut my groin and they had wanted to use some muscles to patch the area. However after a LVA to one of the lymphatic vessels and connection of transferred nodes the leakage started to dry out, but they are not sure if this will be permanent. The whole procedure took 6 hours.

On the second day my calf to mid-thigh was wrapped to gain maximum drainage effect. There was a small concern from the professor, who join in during the operation, that bandaging too early may cause the operated groin to flood. My main doctor then delayed the bandaging for a day, after which the physio only bandaged lightly. At the same time my leg has been elevated continuously. A collection tube was inserted in the upper and lower groin after surgery. Interesting thing was the lower groin drain was always empty, which kind of puzzle them. Over the weekend my calf will not be bandage, for airing, as there were rashes developing before the operation and the physio does not want to risk it coming back. Looks like my skin is quite sensitive.

The neck area is recovering better. The drainage tube will be removed later today.(day 4)

The time for removing drainage tubes will be when less than 20ml is discharge for 24hrs. It has been in the 30s on first day and then some days empty. This morning was 20ml+. Probably due to some movement the previous days, to prevent me from lying on my bed in same position for a long period.

As for my groin, the upper discharge was 100ml for first two days. Then 30+ml and about 20ml today. No sign of it being removed soon as the doctor wants the leaking fluid to be collected as much as possible.

I hope the recovery will go smoothly and well. I am trying to reduce my food intake to less than normal amount so I will not need to have a bowel motion till I can sit up!!!

3rd December

I am allowed to shower since yesterday with my leg elevated straight, a week after my operation. Makes me feel so much better!! The only problem is the dressing gets moist after the shower despite being waterproof and we uses a plastic bag to cover it, so it needs changing after each shower. Nurses have been sponging bathing me for 7 days and hair was only washed once!!

The drains in my leg have been removed, there was bloody discharge in the lower groin drain still, but manageable with a few dressing changes through the day when it is soaked. As for the upper groin drain there was yellow, clear liquid discharge, which the doctor says is the liquid the body produces to repair the wound. All looks good so far…

I am allowed to sit in a chair now, but didn’t sit up as much as I wanted to for fear of squashing new nodes. Yesterday they gave me wheelchair training!!

The doctor wants to go slow on the walking part since we aren’t able to monitor the lymph nodes. He wants to make sure they are not injured. Unfortunately they have no way to find out if the transferred nodes are intact, which is a little worrying.

The physio is here daily to put compression bandages on my leg to just before the wound site. I also hope to catch the compression garment vendor here in time for when I start my walking practice. This way the vendor can take measurements and tailor the garment. It takes two weeks and as I understand there are not many vendors in Singapore due to low demand, there is limited manufacture of garments in Singapore they usually have to come from overseas.

I feel great now, although I am not mobile, my leg has gone down quite a lot with the rest and leg elevated from the first day I arrived at the hospital. Certainly we do not know if or when the lymph nodes will starting work but at least I know most of the fluid in the leg has been removed which gives the nodes and the LVA the best chance of working… Thomas

Thank you Thomas for sharing your experience with us, I hope you will allow us to follow you, as you progress at home and have follow-up appointments with the doctors. Wishing you well soon and able to get out and about again. Much patience is needed now but it is all heading in a good direction…

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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

How to protect yourself after lymph node removal during surgery

Nearly thirteen years ago I had surgery for Uterine Cancer, included the removal of 22 lymph nodes from the groin area. Follow up treatment was a month of daily radiation which damaged more of the lymphatic vessels. On leaving hospital I was given a bookmark which told me how to protect myself from Lymphoedema. It was given as a bit of a sideline and not much emphasis given to the importance of protecting my legs, or even what Lymphoedema actually was!!! The other day I was having a bit of a tidy and found this bookmark. Oh how I wish had read it more and realised how important it was to keep my limbs safe!! I think I had managed to break all the rules within the first few weeks including flying with no compression garment and taking a sauna!! No wonder my Lymphoedema started quite soon after treatment. I wish someone had told me how very important that bookmark was, how lymphoedema is a lifelong problem that you have 24/7….

Please share this with others so that they may not have to deal with this problem, or at least have some time before it starts, or are able to protect their limb from getting worse. Any time lymph nodes are removed during surgery there is a risk of Lymphoedema. Below is the bookmark I was given that seemed so unimportant, when in fact it was the most important piece of information I was leaving the hospital with!!

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This is a previous post I wrote with a link to the American Cancer society on Protecting yourself from the risk of lymphoedema post cancer surgery. I have Lymphoedema in my left leg but I must also remember that my right leg is at risk so I must always be very vigilant in caring for both of my legs.

https://lymphnodetransplant.wordpress.com/2013/07/23/precautions-to-lower-the-risk-of-lymphedema-after-cancer-treatment/

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Invisible illness … Lymphedema

This week has been Invisible Illness week. I thought that many with Lymphedema would fall into this category. Even if people notice that one limb is larger than another they have no idea the impact Lymphedema has on everyday life. Many of us put on long skirts,loose trousers or long sleeves and a big smile on our faces, hiding the effort it took to look this good!! There are also many with Lymphedema who experience pain and when cellulitis hits this can impact our plans and social engagements.. Those with Invisible Illnesses often do not get the support or understanding they need. We all need to speak out and share our stories to bring understanding to this little known illness.. Lets make lymphedema less invisible. #Lymphedema

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