Follow up with Liz.. 8 months post LNT

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It is a while since we heard from Liz as to how she is going after her Lymph Node Transfer with Dr Chang, but she is now back and ready to share her journey and answer questions that anyone may have. The thing that helps so much is to learn from others experiences, be they good or bad. More people are now having surgery for lymphedema and more doctors are performing LNT, LVA (joining lymphatic vessels to veins) and SAPL (lymphatic liposuction). Nothing in this blog replaces advice from your doctor, but it often helps to connect with someone who has had the surgery and ask questions that you feel unable to ask others. I always say that it is very important when looking for a doctor that they have good pre and post operative protocols, as this is not just about the day of surgery. Being prepared for surgery and having your limb as good as it can be may help. Post surgery the care is important too. What do’s and don’ts does your doctor have… Unfortunately they are all different in this area, so it can get confusing, but always follow the protocol your surgeon has requested for you.

Here is the latest update from Liz

“I had a LNT in June 2015 with Dr Chang. My LE started in 2012, 6 years after having a stage 1 cancer of the uterus in 2006. I would love to help anyone who needs questions answered. It is a VERY long journey and not a second of the day goes by that my left leg is not on my mind. I continue wearing the Elvarex one legged panty with the 30-40 mm of hg compression. I sleep with the quilted compression garment with the sleeve that goes over the top of the quilted garment. My surgery was almost 8 months ago and I have not gone back for a follow-up visit yet. It doesn’t seem necessary for me to fly from Connecticut to Chicago in order to have Dr. Chang measure my left leg…. I will go back to Dr. Chang maybe next month… I think there is a reduction in my left thigh, my ankle and calf have not really reduced much… Dr Chang said that LNT was good, he  also did a lymphovenous bypass in my left calf, he was able to find 1 big vessel to anastomose to a smaller vessel to promote drainage from the calf and foot. That is what seems to be taking a lot more time to show results. I remember asking Dr. Chang about the chance of stem cells being used in the treatment of LE but he said there was not enough research that had been done for stem cells to be placed in the groin. OH well I guess we just have to wait and I have to become more patient …let’s all keep the faith.

I will be submitting my whole story soon, it takes a lot of emotional strength to retell this long and painful journey. I am so very grateful for this incredible blog, in my darkest hour, this blog site and all of the wonderful inspiring people helped me thru the LE despair….We are not defined by our lymphedema; that is something we do to ourselves, we are defined by who we are as people. However, the LE is always present and every step I take reminds me of the restrictive, constrictive, thick flat knit garment against my left leg. I long to feel the fabric of my clothes against my skin. I suppose time will tell and I have to learn more patience.” Liz

Thank you Liz for sharing, it can take a long time to see results, it is not a magic cure but hopefully it will eventually help..

These are some links to Liz’s previous updates…

https://lymphnodetransplant.wordpress.com/2015/06/09/elizabeth-shares-her-lead-up-to-surgery-on-19th-june/

https://lymphnodetransplant.wordpress.com/2015/07/01/surgery-with-dr-chang-liz-

https://lymphnodetransplant.wordpress.com/2015/07/07/liz-two-weeks-post-surgery-dr-chang/

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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
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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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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