New York Bonding!!

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Jennifer,Helen, Leslie, Kimber, Andrea

What a wonderful day today.. Since starting my blog way back in March 2013 I have connected with many fellow “Lymphies” all over the world. Today, while on holiday in New York, I was able to meet up with four other ladies who have Lymphoedema, as you can imagine the talk never stopped, we shared stories, experiences, highs and lows, but mostly it was great to talk with others who understood the daily routine of living with Lymphoedema. Four of us have had Lymph node transfers and one is looking into this surgery. Four of us are secondary Lymphoedma and one primary. Four have Lymphoedema in one leg and one has Lymphoedema in both legs.

When I started to write my blog I never dreamed that one day I would actually meet up with others who would understand why I have yellow rubber gloves in my handbag!!!

Thank you so much to Kimber, Jennifer, Leslie and Andrea for meeting me today. This is a day I will always remember.. ❀❀

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New York 2014

25 thoughts on “New York Bonding!!

    • I am so sorry I would have invited you but had no email and did not realise you were in New York till I saw your post yesterday… Mine is helenbrd@bigpond.net.au if you like I will put you in touch with the other ladies here if you send me your email… They are intending to stay in contact… They said it was funny to have someone come from Australia to get them together !!!!

  1. That is fantastic Helen – I’m so pleased for you. Must’ve been amazing trading stories about the various procedures. Hope you took all of that info like a sponge and that it gave you encouragement for where you are in the process. You haven’t given an update on where your leg is at – would love to hear how it is progressing. We should definitely meet up before end of March. πŸ™‚

    • Yes I think we have to have a Sydney gathering.. I organised this in New York and not my home town!!! I see the doctor in March for ultrasound and check up.. Which will be one year anniversary… So far no major changes though Jennifer who had this 2.5 years ago said it took a year for her to see changes and then very gradual.. .. This summer she said she really noticed far less problems with the heat.. Hope all good with you..

  2. How lovely for you all!
    Can I ask how many of the four with transplants feel they have been successful – and if so, how long for ? And if so, how many no longer wear compression garments?

    Good luck to the contemplator- I hope you come to the right decision for you!

    Happy days- enjoy!
    Val

    • LNT surgery is a long process taking up to two years for the transplanted nodes to grow new lymphatic vessels.they even say 3 to 4 years to see best results… . Of the four ladies two have only just had surgery at the end of 2013… One is still bandaging and very early days… All still wear compression but two not at night. Jennifer is now two and a half years from first transfer to groin ….. New vessel is growing down her thigh …. She has just had second transfer above knee as happy with results of first to upper leg and this second will improve lower leg … All of these are written up in the blog under Jennifer, Kimber and myself… So far it would appear that the response in legs is slower than arms .. ???? Due maybe to size and gravity… Also the work on legs is really very recent so will take time to see the results.. It also depends on the condition of the lymphatics pre treatment… How much damage?? Are there some nodes still?? Are there some vessels still?? I am no doctor or researcher I am just wanting to gather personal stories from people to see how their journey progresses.. It also depends on expectations for the surgery… No one can “cure” Lymphoedema at this stage but maybe they can make it easier to care for, less infections and less or little swelling, less use of garments…. I intend to continue to follow these ladies progress and we will see where it leads…but patience is very much needed for this type of surgery as there are no instant results..

  3. What a nice blogpost! Really nice to read and see how lymphedema also can bring people together in sharing stories and experiences. It must be nice to share this in real life! So far never met somebody in person, how crazy is that….but I am already happy to live in an internet era….Please keep on sharing everybody it means a lot to fellow lymphies! X

  4. so sorry I couldn’t make it!! Glad you all had a great time!! This March it will be 2 yrs since my first surgery and I have seen some changes and I am beyond thrilled with the results!

    • That is such good news.. Keep us posted with your progress.. I am sure that Leslie will be in touch with you for the next gathering now that the ball is rolling!!! I am just sad that I will not be there.. This is a group of very positive women..πŸ˜ƒπŸ˜ƒ

    • This site has been a Godsend to me. Thank you for all of you who post to tell of your experience with lymph node transfer – and just living with lymphedema. I am scheduled to have the lymph node transfer surgery in May, in Chicago, with Dr. Chang. I’m very nervous and desperate for any feedback. God bless you for starting this blog to share your adventure. It makes it easier for us to get information and first hand anecdotes about the healing, recovery, post-surgery care, etc! I’m new to this site, and I really hope this blog response works, as I would love to stay in contact with you! Sometimes when you’re the only one in your world who has this condition, it gets lonely in lymph-land! πŸ™‚ Thank you again for everything that you all share!

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