About Me

On 14th March 2013 I will be having a Lymph Node Transplant.I have had Lymphoedema in my left leg since surgery 11 years ago for Cancer. At the time, 22 lymph nodes were removed from the groin area followed by pelvic radiation for a month. During the past 11 years I have had compression bandaging, laser, manual drainage and have worn compression stockings or tights. It is a daily battle to keep the lynphoedema under control. I have found water aerobics a great help as the water gives natural compression. However due to this I have had numerous episodes of cellulitis, so it is “catch 22”. What helps the swelling does not help the danger of infection.

Last year I started to hear about Lymph Node transplants being done overseas. I started to research this and by some miracle a new clinic had opened in Sydney at the Macquarie Uni Hospital – the Advance Lymphoedema Clinic. I had to attend for assessment as to whether I was a suitable candidate. Surgeons at Macquarie Uni Hospital are performing Lymph Node transplants and Liposuction on those not suitable for the transplant. I had a Lymphoscintogram performed to check the activity of other lymph nodes in my leg, as well as its condition to ensure it was not fibrous or very swollen and that I was in general good health. I will also need an MRI prior to surgery. Lymph nodes are to be taken from my neck and placed behind the knee.

I have decided to write this blog to bring awareness to a little understood health problem that causes both men and women great anguish. There is both primary and secondary Lymphoedema. In documenting this procedure I will be keeping a record of my progress and outcomes.

Please follow my journey and share with others to educate people on what it means to live with Lymphoedema.

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

80 thoughts on “About Me

  1. Helen, I love and respect your courage. You are an incredibly inspiring woman, you have given many women in need support, love, friendship and hope. I look forward to following your journey and your success! Sending along much love, hugs and smiles.
    xxx

  2. Chain Connection ~The Foundation for Lymphedema Lives with ME!~ (facebook – click on the colored Lotus Flower) is my business of crochet apparel which I advocate on this condition and cancer awareness, in North Charleston, SC through the local farmers markets – which I was encouraged from my oncologist and lymphedema therapist at the Medical University of South Carolina. Since having the lymph node dissection surgery in April 2007 due to the removal of Melanoma in my upper right thigh, and through the use of Chinese Herbal Medicines & Teas, a plant base protein diet and moderate exercise (is listed in the webpage), I have been successful in treating the issues; infection, pain & swelling that surrounds lymphedema. If you are experiencing tightness, soak in epsom salt! May you live long and be healthy!

  3. I find this surgery very interesting and have a lot of questions too! I wish you the best in this process and will hold you in my prayer for a full, speedy and complete recovery..

  4. Helen, thank you for the mention of the Lymphedema Treatment Act. I am the Founder and Executive Director of the Lymphedema Advocacy Group, who is the driving force behind this bill. I am hoping you might update your posting to include our web address – http://www.LymphedemaTreatmentAct.org – so that your readers can access more information, learn how they can help support passage of this bill, and ensure they have the most up to date information when the bill is reintroduced. Thank you so much and please do let me know if you have any questions.

    • I have actually done that with a link.. If you Click on the underlined words.. Welcome to the Lymphedema treatment act it takes the reader to your web site… I will make this clearer so people know this is a link.. Congratulations on your work and pushing for these changes to allow those with Lymphedema to have better treatment. Please check later today and see if you are happy with the link.. Keep up the good work…. Helen 🙂
      I think it is much clearer for everyone now… I made a couple of changes….

  5. Thank you so much! Yes, it is more clear now that there is a link. Please let me know if you would like me to email you our logo, or one page facts sheets about the bill. All my best to you 🙂

    • If you could send me a logo that would be good plus maybe a PDF file of an info sheet.. I could then maybe do a whole post on the Lymphedema treatment act ..or you could write me a post which I could cut a paste to the blog???? .. The lady Sue who I am writing on too is very keen to get involves when she is able … To have to pay for her own surgery and no cover what so ever is terrible… In Australia I have good cover via my private health fund but not so good if you only have Medicare … Please email to helenbrd@bigpond.net.au Thanks Helen

    • Thank you so much for this award.. I have only been blogging for a short time so I am very greatful that I am able to bring awareness and education to others about Lymphoedema… Thank you .. Helen

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  7. Hello all, the lymph node transplant surgery discussion and option is very exciting. I will follow your progress and results with great interest. I have had lymphedema in my left leg for 10 years and it has reduced to almost the same size as the right due in part to a rigorous routine of weight bearing exercises and daily lap swimming. The cellulitus I once had that left me hospitalized for a week, has never returned after 7 years due to the infectious desease doctor putting me on a daily, gradually decreasing regimen of penicillin. I now take one every other day and have for years. Good luck and best wishes to you Helen!

    • Yes the swimming is really great for the Lymphoedema.. I am quite sure that it really helped my leg and I can’t wait to get back in the water again. I used to just walk up and down a pool for about 20 minutes two or three times a week, in the summer here in Australia that was a great help. Yes the long term antibiotics in something I must look at if this surgery is unsuccessful.. I have never been offered this treatment but given my history I must look into it… Helen

    • HELLO EVERYONE! I HAVE HAD LYMPHODEMA FOR 2 YEARS NOW. IN THAT TIME I HAVE BEEN HOSPITALIZED ATLEAST SIX TIMES. CAN YOU TELL ME MORE ABOUT THE SWIM THERAPY. HOW LONG WOULD I NEED TO SWIM EVERY DAY. I AM FROM CANADA AND IT SEEMS THERES IS VERY LITTLE AWARENESS HERE. I AM CONSIDERING LYMPH NODE TRANSPLANT SURGERY IN MEXICO, BUT WOULD LIKE TO TRY THE AQUA THERAPY FIRST. ANY INFORMATION YOU COULD PROVIDE WOULD BE APPRECIATED. THANK YOU ALL YOU BRAVE SOULS OUT THERE. SO GLAD I FOUND THIS BLOG.

  8. Hi Helen,

    I found your post Liposuction News and I’m interested in contributing to your blog.

    Since you already publish posts in our niche, I thought it would be nice if I too had an opportunity to present your blog’s readers with something of value.

    I work as a relationship manager at Liposuction.com. We offer a centralized place for the public to find information on liposuction procedures as well as a place for potential patients to find a surgeon in their area that meets their needs. Over the recent past, I’ve contributed guest articles to several niche related blogs. I understand the need for unique and well-researched content. And I’m also very passionate about any topic or subject that I write about especially about our industry!

    In this post, I’ll discuss some new trends and techniques in the industry. The word count of the post will be no less than 400 and will include photos.

    Please get back to me at this email or my number listed below.

    Thanks so much and I look forward to hearing from you!

    Jessica
    jessica@liposuction.com

  9. Yes do. It has been a godsend! Good luck to you Helen. I can’t wait to hear about your “cure”!! Best, Sherry

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  11. Thanks for the heads up regarding the article that I posted on my blog “Recent Cancer Facts.”I have taken down the post.I also see that you are a cancer survivor so I want to personally apologize to you if I offended or hurt you. I certainly had no desire to do so.
    Thank you for your time, help, and for understanding.
    Your Friend,
    Coach

    • I have seen it before on FB and the first time it gave me a shock as I felt like it said it was my fault I got cancer!!! Then as I read more I thought this does not sound right…. Later I found it was a hoax and that was a relief!!….thanks for taking it down so quickly I appreciate that… No harm done!… Thanks Helen

  12. Hi Helen,
    I have noticed that you are very keen on swimming and thought you may be interested in the following:-
    Twelve years ago I was advised by a Doctor in Wittlingers Clinic, Austria who only specialise in Lymphoedema, to wear a compression garment whilst swimming or walking in the water and It works well. Although at first this feels ugh I stick with it and have also been clear of cellitis for 4years. Fingers crossed.
    My lymphoedema started 23 years ago and I have suffered with depression and eventually had to see a professional for help but it was of little help. However, a Therapy known as EFT based on the Meridian Energy Pathways has transformed my negativity and outlook. It is non invasive tapping founded by Roger J. Callahan Ph.D and information can be found on:- YOUTUBE www. Bradyates.net.
    Good luck.
    Yours, Ginty

    • Thanks for that Ginty.. I have had others say they use compression too but interesting that the clinic recommends it too.. I have heard of this other tapping therapy and will have a look at it.. Yes it is very easy to sink into a depression with Lymphoedema I have certainly struggled at times but I do find exercise helps me… The wittinger clinic looks great and will be my last resort if needed.. How is your Lymphedema going now? I hope you are making progress.. Thanks Helen

      • Hi Helen
        My leg is still the same but as recommended Iam every day for twenty minutes or so manually moving the lymph from above the knee close to the new nodes. Occassionally, I have felt a pinching in that area so hopefully something is happening. I plan to fly home to Scotland this November and feel a wee bit nervous in case of damage with air pressure to the new nodes but Im sure it will be fine and it is a case of over concern which tends to happen amongst ” Lymphies”
        Wittlingers Clinic is a wonderful place not only for treatment and information but the Doctors and Therapists were truly interested in your physical and mental wellbeing and I found them to be extremely kind and express great empathy for the trials of living with Lymphoedema.
        Good luck and take care.
        Yours Ginty

        • The Wittlinger clinic does look and sound wonderful .. The whole program looks really good. I did have to fly a few weeks after my surgery but an MRI at three months still showed nodes ok.. I wore my stockings on both legs but I did used the ready wraps after .. I am sure you will go ok but us Lymphies are always having to look at protecting ourselves.. Take care Helen

  13. I was researching new technology (artificial lymph node/vessel surgery) and came across your website. Our stories are almost identical! I had cancer about 14 years ago and had 29 lymph nodes removed from my pelvic area. Unfortunately as expected I developed lymphedema. It is in my left leg too. It started in the thigh area. I have tried everything humanly possible to treat/improve my condition. I had the same lymph node transplant about three years ago. The doctors took the lymph nodes from my right arm pit and put them in my groin area. The doctors that performed the surgery are experts in reconstructive surgery and are very knowledgable about the different lymph node areas/levels and the vascular system. So the results for me . . . well, a little disappointing. My thigh area did improve slightly, although my knee area got much worse. The doctor did perform lyposuction in various areas in my leg because we noticed that the fluid was attracted to the fatty areas of the leg. This has helped some, but only if I stay underweight, eat extremely clean and do not stand up for long periods of time. I am still hopeful that the lymph nodes that were replaced will continue to grow vessels and work better and better as time goes by. You may can tell that I am a optimist and don’t plan on giving up. I am so interested in your progress and look forward to following your story. I apologize if you have already reported this on the blog, but I am interested in what they told you to do for maintenance (compression garments or not) now, and what time frame did they tell you that you should see improvement and would it continue to improve over time. I wish you all the best and hope that your surgery will be successful!

    • So good to hear your story as it is great to connect with others who have had the LNT… Yes very very slow… They told me at least two years but I have read that it can keep on improving over a number of years..I do regular MLD and to start with I wore Ready Wraps… My preferred choice as opposed to Bandaging… I now wear a compression stocking and for walking I wear compression sports tights by Puma.. Rest of the time a compression stocking.. So far I see little improvement though my tests showed that a tracer moved fast during the Lymphasytagraph and the thigh showed a small reduction..my nodes went from neck to knee.. The leg reduces over night but during the day it swells again… I do not wear compression at night time… My knee due to the surgery puffs up still and I am still numb from the knee down.. I hope in time this improves.. My connections with others would show that LNT to legs is much slower to show results that the arms..like you though I remain patient and hope for a miracle one day!!!.i eat well but have put a few kilos on since the surgery which I need to loose…. Had to sit and rest and elevate for a few weeks due to nodes in knee having to heal as it is a main joint. Diet I think helps ..the less pressure on the lymphatics the better.. Stay in touch My email is helenbrd@bigpond.net.au… Helen ..

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  15. While I just found this blog, I more than encouraged to read everything you have to say as I too struggle, daily, with the pain, swelling and everything else that goes with living with lymphedema. I will be inquiring about LNT with my surgeon as it seems like a hopeful solution to this never-ending problem.
    I look forward to learning all about your experience. Thank you for sharing.
    Elizabeth

    • I think we were both writing at the same time … Relating to each other’s situation.. The LNT are new but I feel as time goes by they are getting more experince… My nodes were removed too due to cancer … The impact that Lymphedema has on people I feel is underestimated by the doctors!!! Welcome .. Helen

  16. Hello,

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    I thought they would be of interest to your followers as well, and I wanted to see if you would include it as a resource on your page:

    Please let me know if this would be possible. I’m happy to answer any other questions as well.

    Thanks so much!
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  17. My name is also Helen. I live in Chicago. I had 32 nodes removed from under my arm and from the super clavicle in March of 2013. (29 were positive!) I had 16 weeks of chemo and 7 weeks of radiation. I was vigilant to see a lymphedema therapist, doing drainage massage, wearing compression garments when traveling and was fine until June of 2014 when post flight my arm and subsequently my hand blew up. I have continued to see a lymphedema therapist, and have lymphovenous bypass scheduled with Dr. Chang at the University of Chicago on October 8, 2014. I have opted not to have the lymph transfer at this time.

    • Hi Helen i wish you well with your surgery with Dr Chang and hope it all goes well for you… Lymphedema is such a problem post surgery and it is wonderful that we now have some different options available to us… Since my LNT my leg is not perfect but so much better and only a little bigger than my other leg … The main plus is that I have had no infections since surgery as I used to often get cellulitus .. Let us know of your progress post surgery.. I wish you well ..Helen

    • Hi -I am thinking about having a Lymph Node transfer a d lymphovenous bypass with Dr. Chang. Could you please tell me how you are doing and if you would recommend Dr. Chang? I have Lymphedema in my left legt due to having 23 lymph nodes removed for cancer surgery. Thank you Kristy

      • This is a desision you have to make yourself but read peoples experiences and comments who have had Dr Chang. Contact Dr Chang for assesment and to ask him questions. And to see if you are suited to surgery. This is not an instant fix it takes a couple if years to see results as the nodes grow. I had my surgery in Australia. My LE is not cured but much better than it used to be.

      • Hi Kristy and Helen
        I just found this blog. I too have leg lymphedema in one leg due to having Cancer surgery in 2008 with 24 lymph nodes removed. 12 on each side.
        I am considering the bypass. Am afraid to do the lymph node transfer as I don’t want to develop LE in that area.
        Please post about how things are going now.
        Very helpful. Bless you both!
        Pam

        • Hi Pam… Yes everyone has to make this decision themselves as everyone has different results and expectations… I had a LNT not the bypass as that was not available in Australia.. Two years later i am hapoy with the results… Not a cure but my leg remains soft all the time.. I have had no infections since surgery… My lower leg is very good same size as good leg.. My transfer was to knee.. Thigh remains about an inch bigger but that is ok.. I still do MLD.. Elevate when I can… Ask your Dr about the results he has had with the bypass.. Dr Chang seems to combine this with LNT… The nides were taken from my neck and so far no signs if Lymohedema there.. This surgery is so new it is difficult to get results as we need a few years to pass and see how oatients are going… Good luck with you decision and ask lots if questions if your dr… Helen

  18. Hi Helen,

    Have enjoyed stumbling across and reading your blog. I am a 30 year old woman from England who is about to embark in lymph node transfer at the end of this month. I have started my own blog as there seems to be very little personal experiences on the web especially from people in England. If you could include my blog in your own I would really appreciate it.

    My blog is at
    mylymphnodetransferjourney.wordpress.com

    Many thanks!

  19. I did not have the surgery with Dr. Chang. I went with Dr. Granzow instead and had a SAPL. I will probably do the Lymph Node transfer next year.

  20. I am about 2. 5 months out from the surgery. Recovery is going well. My leg is smaller then my “normal” leg. Dr. Granzow said I would not get the results I wanted if I just did the transfer due to how hard my leg was. That made a lot of sense to me. Kristy

    • Glad to hear you are going well… So very true the LNT will only remove fluid from the leg and not the fibrous tissue.. If the leg is hard and firm the surgery you have had is the best option.. They are doing this in Australia too… So far have not heard of someone having the LNT after but I know this is an option and would be very interested to see how this goes.. I am sure you must feel so much better with the smaller leg… A friend of mine had this done in Australia and she is very happy with her results… Helen

  21. Hi Helen, thank you following my brand new blog! Congratulations for all your awards, you are indeed sharing lots of useful information here and the personal journey is encouraging. I wish you all the best, Andrea

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  23. Hi,
    I live with primary lymphoedema in Sweden, where the condition is barely known at all among doctors, so forgive me if this question is a bit stupid. I’ve long been looking for a permanent solution to the problem, and that led me to your blog. But how does the lymph node transplant actually work. If you take lymph nodes from your neck and place somewhere else, won’t the problem just move to the neck?

    I find this really interesting, so I hope you have time to answer.

    • We have hundreds of lymph nodes in the neck area and they only take two or three so no harm done … In Sweden you have one of the best doctors who started Liposuction for LE twenty years ago
      http://www.imaginis.com/breast-health-news/swedish-physician-uses-liposuction-to-help-treat-lymphedema-dateline-april-20-2001
      You can find many other articles about him… Also with Primary LE prior to a LNT it is important to map the nodes in rest of body to ensure there are not other compromised areas…. Any questions I am happy to answer but it does not replace any medical advice …Helen

      • Thank you for your reply. I know of Dr Brorson, the problem is it’s not a solution, which is what I’m after. My legs have not reached that stage where a liposuction is an option. So you would recommend some kind of scan to see how the lymph nodes in the rest of my body is doing? Because my GP have said no to that, but if it’s recommended in other countries I will go back and demand it.

        /Josefine

        • It is a test a type of MRI that Dr Becker does in France and it is available in New York… Not sure about other places… I think called an MRL.. It maps all the lymphatics in the body and shows where there are problems and where nodes are good and bad… With primary LE it is important to know you are not taking nodes from another weak area of the body… With all the people I have contact with I have not as yet seen the LNT be a total cure but it does help and maybe given time and as surgeons gain more experience the results will be better.. dr Chang is also doing a combination of LNT and LVA…. I think over the next few years we will see improvements in the surgery….

  24. Thank you for the names of people and the test type. I will look into it. I too hope that we’ll see improvements in surgery, and mostly that more doctors, of all levels, become more interested in the condition.

    /Josefine

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  26. Hi Helen, I found your blog through you liking a comment of mine on another blog and I wanted to stop by to say hello and to check out your site. I’m not sure if I’ve heard of lymphoedema but it never ceases to amaze me the sheer numbers of conditions that people from all walks of life live with. Since I began blogging a couple of years ago I have learned so much from others on numerous topics however the ones that stand out to me deal mainly with health, wellness and disability concerns so I look forward to reading your posts. Steph

    • Thanks for following .. I write two blogs the other is called “Life in a wheelchair” as for the last year that has been my life.. Like you adjusting to being blind I am adjusting to being a paraplegic.. Many of the same questions come up about fashion and appearance.. Both of which I find very important in how they make me feel.. I even got a black wheelchair so as not to clash with bright clothes..🙂 i look forward to reading your blog too.. I love writing as it helps me feel less isolated and the community of bloggers are agreat support.. Helen

      • Hi again Helen, I’ll have to look for your other blog as well. Yeah, the whole fashion & disability is something that needs to change. I think one of the reasons things are the way they are currently is #1 due to the beauty industries unrealistic expectations on beauty and #2 the thought process that people with disabilities can’t, won’t or aren’t interested in participating in being fashionable.

        The blogging community has been a tremendous source of encouragement and the friendships that have evolved out of blogging is amazing. Have a great day!!😀 Steph

  27. Hi Helen! Your blog is very encouraging, thank you! Do you know if there are Doctors in Seattle, WA performing lymph surgeries?

    Lisa

    • Hi Lisa.. I do not know of any in Particular but if you look online you may find some though some patients do travel in the US to find the best DRs .. dr Granzow has a very good reputation also Dr Marga Massey and Dr Dyan also Dr Chang. To name a few… When loking for Drs it important that they have plenty of experience in Lymphatic surgery.. Ask lots of questions .. Check out other patients etc .. Read the posts on here to see who people have been to … Good luck

  28. I came across your blog today as I was searching for information about lymph node transfer surgery. Very interesting and helpful information. I live in New York and I was wondering if anyone had information on doctors in New York performing this surgery. Thank you!

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