The Next Step of my journey… 14 months post surgery

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Just a quick update to let you know I am staying at Mt Wilga rehabilitation hospital in Sydney. The internet connection via Telstra is not good!!! Very slow and drops out!! I am here for a review of my leg at this stage and to have intensive treatment to see if the swelling in my knee settles. Very happy with lower leg which looks “normal”. Each day I have MLD, laser treatment and then re wrapped as in the picture. (Complex bandaging) Bandaging remains on 24/7 except to shower. I have a Gym program to help stimulate the lymphatics and would also be doing a pool session but this has been vetoed due to low blood pressure. Instead I am walking a lot in the area of the hospital. I am learning new MLD techniques and will be measured and assessed for a new compression stocking as the leg has changed.

I think that the hardest thing with this LNT is the unknown. Where are we up to? Where are we going? What do we do while all that happens? Sadly there seems to be no set protocol for post surgery, every doctor seems to be a little different. I am very glad to be able to stay here for this treatment. I am able to focus totally on healing and improving my Lymphedema.

When I have better internet I will write more about this stage of the journey. This is 14 months post surgery. I am to be here for three weeks, so happy that the staff are lovely, my room looks onto a garden and is very spacious and to my health fund for paying!!! I have much to be grateful for..

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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

June is Lipedema/Lipoedema Awareness Month

Sharing for all those who have Lipedema or a combination of Lipedema and lymphedema. Many people do to realise they have Lipedema. Thanks Catherine for all your work

Lipedema Simplified BLOG

Lipedema/lipoedema was first named as a disorder/disease at the Mayo Clinic by Dr. Edgar Hines and Dr Edgar Allen in 1940.  Lipedema, known as lipoedema in Europe, is a chronic disorder of the adipose tissue generally affecting the legs, which causes the legs, and sometimes the arms, but not the feet, to accumulate fatty tissue. It’s been 74 years and only now with grass roots advocacy is lipedema receiving attention in the U.S. Help raise awareness.

Lipedema Stages 1 2 & 3 Lipedema Stages 1 2 & 3

June is Lipedema/lipoedema Awareness month. Beginning on June 1st, and all month long, I will be posting 1-3 minute short micro-documentary clips from the raw footage in process of being edited into a full length documentary. There will be postings on patient experiences, the process of diagnosis, conservative treatment: compression and MLD, lymph-sparing liposuction, information about the issues of anti-fat bias in healthcare, and interviews with many of…

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Research from Australia which may help those with Lymphoedema

Gene discovery points to lymphatic disease and cancer therapy

This is a link to a television program shown on Chanel 7 about the work that is being done at the University of Queensland on the lymphatics system.

These are links to three articles about the research

http://www.imb.uq.edu.au/index.html?page=211438&pid=12193

http://www.imb.uq.edu.au/index.html?page=210555&pid=12193

http://www.imb.uq.edu.au/ben-hogan

Wonderful to see this research happening in Australia which could benefit those with Lymphoedema and also help to stop the spread of cancer from a primary growth.. Thanks to the University of Queensland for sharing this news..

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A personal account of surgery with Dr Chang

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

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

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

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

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

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

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

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

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

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

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

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

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

Health Tip..

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Always looking for natural health tips to help boost our immune systems.

This is also a link to an article to help our lymphatic system. When you have Lymphedema it is always helpful to keep your body as healthy as possible, so as not to put extra stress on the already fragile lymph system.

What do you do to help your Lymphedema?

http://www.elephantjournal.com/2014/05/increase-vitality-boost-immunity-look-radiant-in-15-minutes-a-day-kimby-maxson/

“We are all taught about out circulatory system, our nervous system, digestive system, reproductive system, respiratory system and skin, but not many of us know a thing about the lymphatic system—yet if this system stopped working we would die within 48 hours.” By Kimby Maxson from the above article.

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I am blogging for Mental Health

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May 14th 2014 will be Mental Health day, as a blogger I am taking up the challenge to create a post for this day. I hope to help spread better understanding of the issues around mental health, to diminish the stigma and encourage people to speak out. Never be afraid to seek help. Talk to a family member, friend or a professional if you feel you are not coping. So often we say we are ok, when we are not, but never be afraid to say you need help. Sometimes a simple chat can help, but sometimes it takes a psychologist, psychiatrist or counsellor to help.  Medication maybe needed. Always remember there is help if you let people know, never, never be afraid to say “I need help.”

imageI am going to use this opportunity to share with you a charity we have in Australia called  RUOK… As the name says, it is about talking to people, checking on their wellbeing, spending time on starting a conversation that may save a life. You maybe the  friend or family member that someone confides in, so make sure you listen, support and if need be find help for someone.

https://www.ruokday.com

Just starting a conversation with someone could make all the difference.
#mhblogday

 #mhblogday

#mhblogday

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 we support each other…

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This is a wonderful reminder from “Simplee Serene” as to the ways we support each other. Since starting this blog I have realised how important this is. The ability to share knowledge with others, to share our deepest worries and concerns, to ask questions of those more experienced, to educate others, to laugh and cry with those who understand. Some people are able to join support groups in their area but these are few and far between. However social media has given us the opportunity to connect with others via the internet. There is now a world-wide community of those who have Lymphoedema. These communities gather via Facebook groups and pages, via Twitter and LinkedIn. They are able to stay connected chatting online, via email and Skype and when lucky enough can meet in person.

Supporting each other is so important, it makes a huge impact on quality of life and our ability to cope… Sharing with someone who truly understands is priceless… Please continue to share your stories and join in the “conversations” where ever you may be.

You may contact me via email…  helenbrd@bigpond.net.au

Gathering of ladies in New York who all have Lymphedema and have had LNT surgery  Jennifer, Helen, Leslie, Kimber, Andrea...

Gathering of ladies in New York who all have Lymphedema and have had LNT surgery Jennifer, Helen, Leslie, Kimber, Andrea…

 

This photo was taken on a visit to New York… What a wonderful get together and so much talking!!! I really miss you girls xxx

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

My Facebook Page….

This is a link to my Facebook page,  which is why I have not had so many posts on this blog lately. The Facebook page enables me to have quick links to articles, stories, videos, others blogs and pages about Lymphoedema. I like to share anything that I think may be of interest, or help, in treatment, care, research and living with lymphoedema. I am also able to repost older items from this blog, as often it is difficult to find the topics amongst over 200 posts that I have written. It is also a way for others to give quick feed back by liking or sharing and joining the community of others with Lymphedema.. So if you are on Facebook come find and like my page, so you will get updates in your news feed. I may venture into twitter but I am not there yet!!!

https://www.facebook.com/Mylymphnodetransplant?ref=tn_tnmn

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If anyone would like to share their story, or update a previous post, with the lymphedema community that reads this blog, then that would be great. It is by sharing our knowledge and experiences that we learn, it is also an opportunity for questions and answers from others. By speaking out we give lymphoedema a voice…

You can email me at helenbrd@bigpond.net.au

I look forward to hearing from you…. Helen

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