Update from Cindy..

Just received this update from Cindy who is two years post Lymph node transfer with Dr Graznow …going well but always have to be vigilant for any issues … it is about gauging what works best … however not having to wear compression all the time is great… LNT will continue to improve too ..

“This is long overdue. December 11, 2016 was my 2 year anniversary for the VLNT. I am pleased to report that my leg size continued to stay small and I spent a lot of time out of my garment. I was beginning to hope the Lymphedema was gone. All that changed when I put a pair of socks on to wear with my boots. The socks were crew socks so the elastic was around my calf. While at work I decided to check and see how my leg was handling the elastic. I was horrified to see the swelling (and pitting) right above the sock. I ran home during lunch and put my garment on. Next day it looked good and I continued to not wear my day garment. Overtime, I realized I could feel my calf getting bigger during the day. It was slowly getting larger and heavier. I am back wearing my day garment, using the Jovi at night and receiving MLD twice a week. My leg looks and feels great again. I’m fairly certain I will be able to go without my day garment again. I don’t want to rush it. I waited an entire year post VLNT to experiment with not wearing my garment. Think I will give it a month before I try again. I’m grateful for all those days without my garment. I now realize I can have nothing on my leg that restricts circulation.

Wishing everyone a happy and HEALTHY 2017!!” From Cindy

Please everyone remember that March 6th is world Lymphedema Day

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Cindy’s update on the funding issues for those with Lymphoedema

imageAlways great to hear from Cindy and how she is progressing, she is also great at responding to people’s questions and staying in touch with everyone. This is a link to one of Cindy’s previous post https://lymphnodetransplant.wordpress.com/2015/08/06/cindy-8-months-post-surgery-with-dr-granzow/

In her latest update she despairs of the  system that does not allow her to claim for the stockings she needs. Insurance for the treatment, care, support and garments seems to be lacking world-wide for Lymphedema. How has it been for all of you with cover for your lymphedema? In Australia without private cover there is little help from Medicare. Even with private cover there is a gap in cost and what the patient pays.

Cindy says …. “I am happy to report my leg has remained small, feels soft, has more flexibility and looks good. Though, I still wear compression during the day. I must remind myself that my surgery didn’t cure my lymphedema, it improved the appearance and overall health of my leg. I have a Christmas party to attend and will go without compression for a few hours. I will post an update after the party. Even if my leg swells a little, I am confident elevation with bring it back down. Nonetheless, it is a little daunting to think about not wearing compression!

I am replacing my garments every 3 months and am paying out-of-pocket. I have insurance that will cover them, but am unable to find a local medical supply company to order them. It was just brought to my attention, that the company I deal with has an exclusive agreement with a manufacturer, they will only sell their products. So, I am on my own when it comes to buying my Elvarex. I cannot put into words how angry I am over this. I find a garment that works for me and even though my insurance will cover it, there is no 3rd party to order it for me. Guess there is politics involved when it comes to lymphedema too. Everything about this wrong! There are few local services available for treatment of lymphedema, the ones that are here either don’t take certain insurances or choose to work exclusively with one company. I do not understand why everyone cannot work together when it comes to treating and managing lymphedema. Bless all of those involved in surgical, pharmaceutical and stem cell research and/or treatments for lymphedema. Bless all those PTs, OTs and others that help us manage our lymphedema. Shame on all of you out there (insurance companies, DME supply companies, some doctors, etc) who block our access to the treatment we need.

I will update after my evening out with no compression! :)”

Thanks Cindy for your update, if anyone has questions for Cindy please add them as a comment…

In America the Lymphedema treatment Act  is fighting for better cover for lymphedema .. http://lymphedematreatmentact.org

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In Australia we have Lymphoedema action Alliance.
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In England the Lymphoedema Support Network 

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Please add in the comments any other groups who are fighting for recognition for those with Lymphoedema. We deserve better coverage from our government health funds. This coverage should be for those who have Secondary and Primary Lymphoedema world-wide.. We need far better funding than we have at this time …

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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://lifeinawheelchairblog.wordpress.com
Thanks