I've decided to start writing again!

I took a break from writing for a number of reasons. Firstly, I started my Master's course in Forensic Science, so my schedule became a little busier. However, the main culprit of my silence was my negativity towards my lymphedema.

When I began this blog, I wanted it to be a positive and informative environment portraying constructive information about how to alleviate (and cure) lymphedema. Over the last few months I haven't felt that I was in a position where I would have been able to write blog posts which achieve this aim. However, I recently received an email from somebody who read my blog and found the information useful and interesting, and most importantly, was optimistic about the future of lymphedema treatment. I've been kick-started back into action!

Stay tuned for more information about the new lymphedema management techniques I've been trying out.

I received a really motivational email!

I haven't posted anything for a few days. This is because I've been struggling with the fact that the  post-operative reductions in my leg swelling seem to have plateaued (as predicted) and, I've been experiencing swelling and pain around my knee. However, when I checked my emails, there was a message from somebody who read my blog. It was such an inspirational message that it couldn't fail to elevate me from my despondent mood! It was a message about how on-going research will soon solve the mystery of lymphedema.

The great news is that currently there is so much research happening surrounding the causes and possible treatments for lymphedema; answers aren't far away!!! Better management techniques and cures are just around the corner! I have been reading some papers about a specific field of research involving growth factors which I will summarize and post very soon.

So today's message is ... Stay strong, science will save us soon!!

MLD

Today I want to really promote the benefits of Manual Lymphatic Drainage (MLD). MLD is a massage technique which was pioneered by Doctors Emil and Estrid Vodder in the 1930's.

The technique is a gentle massage of the skin which has powerful and penetrating effects on the lymphatic system (and the whole body, even the nervous system!). By stretching the skin, the MLD therapist stimulates the lymphatic structures located in subcutaneous tissue, and ultimately improves lymphangiomotoricity (lymph vessel activity). The massage is always performed towards the heart, in order to encourage the flow of stagnated lymphatic fluid into more centrally located healthy lymphatic vessels, which eventually drain into the venous system. MLD is a lymphatic system booster!

I find the treatment very relaxing but, very tiring! I can always see and feel a noticeable difference after my MLD sessions. My leg has more definition and the skin is much more supple and less tight.

It is important to find a qualified and certified MLD therapist as the treatment can be dangerous and deleterious if carried out incorrectly. Here in the UK, the main training and monitoring body for MLD practisioners is MLD UK; http://www.mlduk.org.uk/. On there website you can find fully certified therapists. 

This is how I found out about my therapist, who is great!! If anybody reading my blog is from Cheshire, England and needs a therapist I would recommend Justine! Check out her website ...
http://www.mldandmore.co.uk/.

Progress Report!

It's 3 months since I had my lymph node transfer surgery. It's also the time of year for school reports and so, I'm following the trend ... here's my progress report!

Tomorrow, I'm getting re-measured to determine whether or not I can go into a smaller sized stocking. I'm currently wearing a medi Class 3 Size 3 so I have my fingers crossed that I'll be able to fit into a Size 2 now.

I have recently been to see my surgeon, Dr Anne Dancey, in Birmingham. We discussed the idea of having more surgery to further alleviate my lymphedema symptoms. The cause of the lymphedema swelling in my leg was malformed/blocked/damaged lymph nodes which were causing a lymphatic obstruction in my groin. My lymph node transfer has created a bypass route, thus allowing lymphatic fluid to drain effectively from my leg and swelling to reduce. Dr Anne, has suggested to me that I have a lymphovascular anastomosis (LVA) (please see my previous post for details of this procedure) to alleviate some of the lymphatic load on my new nodes. Linking 5 to 10 lymph vessels to a vein, will cause some lymph fluid will drain into the venous system rather than through my new lymph nodes in the lymphatic system. I'm not going to rush into having another operation ... I have a lot of thinking to do! If anyone has had this combination of surgeries please let me know your outcomes and thoughts!!!

get out and get moving!!!

Stomp Out Lymphedema is an campaign organised by the National Lymphedema Network. The run/walk event takes place in the United States to raise money and awareness for a great cause ... Lymphedema! http://www.lymphnet.org/overview/lymphedema-awareness-campaign/stomp-out-lymphedema

Here in the UK, to my knowledge, we don't currently have an equivalent. However, this doesn't mean that I don't exercise!!!

If you have Lymphedema, you need to exercise! The lymphatic system doesn't have an internal pump, it relies on the contractions of the leg/arm muscles to push lymphatic fluid out of the limbs and back towards the heart. Exercising stimulates the muscles and encourages movement of lymphatic fluid.

I do a combination of walking, running, and swimming. When I run, I wear CEP compression running leggings. Here's the link to the website: http://www.cepsports.co.uk/ .... it's time to invest!!! My running leggings are class 2 compression, with a section in the knee which isn't compression, this is to prevent the leggings rubbing on the kneecap and causing patella tendonitis. And the great news is, they look just like regular sports apparel.

After my run I like to go for a swim. Swimming is great for Lymphedema. The hydrostatic pressure of the water prevents swelling in the pool and cool water is very soothing for a swollen limb! 

So, my take home message today is ... get out and get moving, every little bit of movement helps! 

Lymphedema on Holiday

I haven't posted for a week because I have been on holiday! My first holiday with Lymphedema. It's certainly accurate to say that I was very apprehensive about the trip. My nervousness was two-fold... Medical and aesthetic.
I was worried about exposing my swollen leg whilst sunbathing in my bikini. That definitely wasn't an issue, nobody noticed my leg at all!!
I was also worried about my leg swelling up excessively. I packed lots of antibiotics, high SPF suncream, antiseptic wipes, DEET spray (to prevent insect bites) and a whole host of first aid accoutrements to avoid infections and cellulitis. On the four hour flight, I only wore one stocking (I usually wear two), my leg swelled an extra 1cm in circumference, but this resolved itself over night. I didn't wear my stockings at all in the day whilst I was by the pool. I kept my leg out of the midday sun but I sunbathed in the late afternoon (and still picked up a pretty good tan!). To make sure I kept the swelling under control, I wore my stockings in the evening and at night as usual. I'm happy to report that my leg is exactly the same as it was before I left ... My lymphedema survived the holiday! My lymph node transfer must be working!!!

Measurement Day II

Today I traveled to Birmingham for my second post lymph node transfer measurement day. I'm happy to report that it's another reduction!!!
I've lost a further 200 mls of fluid from my leg; my left leg is now only 7% bigger than my right leg.

In total I have lost 750 mls ... The target is to lose a further 600 mls to get my leg back to normal!

Stay tuned to find out how I plan to lose the excess lymph from my leg...