Thank you, thank you so much for all the support you have given me in the creation of my New Blog, it has been just amazing with over 500 views in just one day. I have also had many, many beautiful messages of support and encouragment which have really lifted me. When I started to blog I had no idea how it would go, if there would be any interest but it has spread across the world and is now read in 127 countries, truly amazing. There have been nearing 100,000 views and 272 posts. Many if you have created posts for me and I hope you continue to do so. Just email me at firstname.lastname@example.org to share your story. I would still love to hear from someone who has had the lymphatic lyposuction, SAPL proceedure.
I would also like to ask everyone no matter where you live to encourage your goverment to give support to Lymohoedema. It has been far to long that Lymphoedema has been ignored by goverment health programs. Everyone should have access to the treatment that they need and the garments that they need to wear. The burden should not fall to the patient, in which case many do not get the care that they need and the Lymphoedema becomes worse and worse. Please give Lymphoedema and voice, a loud voice. Lets hope that more high profile people like #Kathy Bates start to speak out instead of hiding their problem. We have become a “cyber community” of fellow lymphies who are there to connect and support each other, we are no longer alone or silent.
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I am sure you are wondering when I was going to write again!!! I am sorry I have been rather slow at creating new posts. A few weeks ago I wrote “Sometimes Life does not go as you Expect,” which explained what had been happening in my life over the last six months. These events have really turned my life upside down but lately I have started to feel more settled and have felt the need to write again. Writing for me is a form of mindfulness that helps to keep my head a little quiet!! The last few days I have been thinking of how to approach my blogging and have decided to create another blog that embraces my new “Life in a Wheelchair”
Do not worry though as I will still continue this blog, “My Lymph Node Transplant,” as I believe it has become a wonderful resource for all those with Lymphedema, especially those who are considering surgery or who have had surgery for their Lymphedema. I love all the interaction that happens between people in the comments and the emails that I get from people. Please still continue to send me your stories so that I may post them, as by sharing our experiences we help each other. We have truly become an online community.
Just to keep you up to date with my own LNT which was now two and a half years ago. My leg is going well even though not an ideal situation in the wheelchair all day! My leg has good shape, knee and ankle bones show. I wear no compression at night and not everyday. I can go for a while without and then I wear it for a few days and it goes back to normal. Me leg is very soft, which is important, as that means fluid can be moved where fibrous tissue cannot, also still no infection which for me is a huge plus. My ankles do swell by the end of the day, due to sitting in my wheelchair, but this is Oedema rather than Lymphoedema, this swelling goes down each night. So I am happy with the results, not a cure but much better control and response to compression, MLD and elevation. This surgery is not suited to everyone but there are other options available now, lymphatic Liposuction and Lymphatic bypass. There continues to be improvement all the time as the surgeons become more experienced and document their work.
If you would like to follow my new blog then this is the link https://lifeinawheelchairblog.wordpress.com There have been a few teething problems with setting up the blog and some people have had difficulty following, I hope these are all resolved now, you do need to follow the new blog separately even though you are following this blog. I look forward to sharing my new experiences with you. Wishing you all well, Helen xx
On Friday I went for my 18 month post Lymph Node Transfer surgery check up. I am part of a research program here in Sydney. I will have follow-up for at least two years so that the doctors here can make decisions on future LNT surgery. There is a definite opinion that LNT surgery does not work if there is fibrous tissue present, as the new nodes cannot break this down, but can clear fluid and protect against infections. Therefore it is very important for the doctors to decided who is suited for LNT and who is best suited for Lymphatic Liposuction surgery. From this view point, at this time, at Macquarie Uni Hospital they are performing more Lymphatic Liposuction than LNT surgery. There is talk of maybe doing a LNT on these liposuction patients in the future, but so far this has not happened. The hope would be that the LNT would help post Liposuction and stop the limb swelling again. At this time after Lymphatic liposuction compression garments need to be worn 24/7 otherwise the arm or leg will swell. Lymphatic Liposuction is different to the liposuction for weight loss as care is taken to preserve the existing lymphatics. http://www.ilfconference.org/fibro-lipo-lympho-aspiration-flla-a-lymph-vessel-sparing-procedure-lvsp-for-advanced-stages-of-lymphedema/
So back to my appointment and measurements which have reduced since my visit in March 2014. One of the measurements that is used is the L-Dex reading. http://international.l-dex.com/what-is-l-dex/ This compares the good and bad leg and shows how much fluid is present in the LE leg in comparison to the good leg. In March my reading was 7.1 then June 5.1 and now it is down to 4.5 which is within normal range. This is very exciting as there seems to be a gradual improvement each visit. The doctor also felt the area at the back of my lower thigh had softened a lot, with the help of three weeks compression bandaging, MLD and Compression Garments. I have also had no infections since the surgery 18 months ago so that is a huge plus for me. I am back in a pool without fear if infection which I am very happy about. If this surgery keeps my leg in the best state possible then that is a big improvement, as my fear was always that it could get worse and worse.
I have not been writing so many updates on my own progress as there has been little to say!!! It is a slow and steady reduction which takes lots of patience!! Will I ever not wear compression?? Only time will tell… Next appointment will be March 2015, my two-year anniversary. I will be having an MRI and Ultrasound done then but I declined another Lymphasyntagraph!! No more injections between toes needed!!
If anyone else has an update to share then send this news via email to email@example.com and I will create a post… As always sharing helps everyone… Helen